40-50 Southern Grove, London E3 4PX.Tel: 020 7364 6564

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email: stephenhodgkins@ditoth.org web: www.ditoth.org

Title: The Disability Equality Duty, Tower

Hamlets Primary Care Trust and Disabled People.

Produced by : Dito – Disability Information Training Opportunity.

Commissioned by: Tower Hamlets PCT.

Date: November 2006.

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Introduction

0.1 As part of its new responsibilities under Part V of the Disability Discrimination Act 1995 (DDA) [1] which introduces the new Disability Equality Duty (DED) upon Public Bodies [2], Tower Hamlets Primary Care Trust (PCT) has commissioned some primary and secondary research to be undertaken by Disability Information Training Opportunity (DITO). The results of this research are contained in this report.

0.2 Tower Hamlets PCT has commissioned this report to help it prepare for introducing its Disability Equality Scheme (DES) [3] in compliance with its new responsibility as a public body. The DED requires that the PCT promotes equality of opportunity for Disabled People. This new duty takes effect from December 2006. Specifically, the Act requires public authorities, in carrying out their functions, to have due regard to the need to:

eliminate discrimination that is unlawful under the DDA eliminate harassment of Disabled People that is related to the

need to promote equality of opportunity between Disabled People and other people

take steps to take account of the needs of a Disabled Person, even where that involves treating Disabled People more favourably than other people

promote positive attitudes towards Disabled People encourage participation by Disabled People in public life

0.3 The purpose of producing this report has therefore been to provide the PCT with an overview of the national and local position of Disabled People, with a focus upon identifying the causes of and solutions to health inequalities experienced by Disabled People living and/or working in the borough.

0.4 In his foreword to the Government’s national strategy for tackling health inequalities, published in 2003, [4] the Right Honourable Tony Blair MP wrote:

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0.5 "Our society remains scarred by inequalities. Whole communities remain cut off from the greater wealth and opportunities that others take for granted. This, in turn, fuels avoidable health inequalities. The statistics are shocking enough. Families in these communities die at a younger age and are likely to spend far more of their lives with ill-health. Behind these figures are thousands of individual stories of pain, wasted talent and potential. The costs to individuals, communities, and the nation are huge. Social justice demands action." [5]

0.6 DITO uses and recommends the social model of disability [6] as being the most useful tool for defining the experiences of Disabled People. Impairments certainly exist and they sometimes pose real difficulties for those who experience them, including pain, lack of energy or chronic illness for example. Much of the research cited in this report conflates long-term and/or chronic ill-health with disability. There has therefore been an unavoidable blurring of these distinct characteristics during the research and analysis, especially in the citations referred to in the Literature Review Section of this report. It is worth putting on record here that whilst all of those who experience long-term ill health are likely to be Disabled People, that not all Disabled People experience ill health and many of those who do, do not experience it all (of) the time. This is a fundamental flaw in the majority of research which has thus far been conducted into the health inequalities experienced by Disabled People. Nonetheless, as is evident from the diverse sources cited in the literature review and the powerful experiences of Disabled People interviewed for this report, there is a compelling picture of systemic, structural and institutional inequality which requires urgent and robust action if it is to be addressed.

0.7 The Disabled People’s Movement, [7] of which DITO is part, comprises those Disabled People and their supporters who understand that they are, regardless of their particular impairment, subjected to a common oppression by the non-disabled world. DITO is of the view that the position of Disabled People and the discrimination against the disabled community are socially created. This has little to do with the impairment labels of Disabled People. Through fear, ignorance and prejudice, barriers and discriminatory

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practices develop which cause ‘disability’. The understanding of this process of disablement empowers us to fight for our human rights.

0.8 The Disabled People's Movement [8] believes the 'cure' to the problem of disability lies in the restructuring of society. Unlike many medically based 'cures', which focus on the individual and their impairment, this is an achievable goal and to the benefit of everyone. This approach referred to as the social model [9] suggests that Disabled Peoples' individual and collective disadvantage is due to a complex form of institutional discrimination as fundamental to our society as sexism, racism, heterosexism or ageism.

0.9 In addition to this, an obsession with finding medically based cures, is a distraction from identifying causes of either impairment or disablement. In a worldwide sense, most impairments are created by oppressive systems - hunger, lack of clean water, exploitation of labour, lack of safety, child abuse and wars.

0.10 Prejudicial attitudes toward Disabled People and, indeed, against all oppressed sections of society, are not inherited. They are learned through contact with the prejudice and ignorance of others.

0.11 There are very few places in which a clear understanding and application of social model principles could be as far-reaching as within the health system. All current legislation concerning Disabled People, including the DDA, [10] use a medical model of disability. Part 1, section 1, paragraph 1.1 of the DDA says that a person is disabled if “he [sic] has a physical or mental impairment which has a substantial and long-term adverse effect on his ability to carry out normal day-to-day activities.” This clearly focuses the ‘problem’ of ‘disability’ upon the individual. It is the individual who is “unable to do things” because of her/his impairment, according to this approach, which is variously referred to as the ‘medical’ or ‘individual’ model of disability [11]. This is a disempowering model, not least for Disabled People themselves, but it also unhelpfully places the responsibility for remedying or curing the inability to carry out ‘normal day-to-day activities’ upon fixing or curing the impairment rather than the social constructs which disable people. Whilst some of the side effects of impairments can and should often be mediated through timely medical intervention, this should be guided by Disabled People

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themselves. The greatest and most practical means whereby the health and other linked inequalities experienced by Disabled People can be influenced favourably, is through removing the environmental, social, economic and institutional barriers which cause impairment and disability.

0.12 Most policies, practices and procedures adopted and applied by the health service at present, reflect a traditional or individual model approach towards disability. This needs to be challenged if the social barriers which cause and compound health inequalities in the disabled community are truly to be tackled. Other (social) definitions of disability and impairment, such as that of the International Classification of Functioning (ICF) adopted by Disabled Peoples’ International [12], which defines disability as “the outcome of the interaction between a person with an impairment and the environmental and attitudinal barriers he / she may face”, should be enshrined within policies and promoted as the most effective and practical means by which the historic patterns of discrimination experienced by Disabled People can be challenged and addressed.

0.13 In its report ‘Equal Treatment: Closing the Gap’ [13] published in 2006, the Disability Rights Commission (DRC) investigated health inequalities experienced by people with learning difficulties and those with mental health labels, which represent between them a majority of the disabled population of Great Britain. The DRC states that “the introduction of the Disability Equality Duty in December 2006 offers a key opportunity to ensure that all NHS organisations promote equal opportunities for, and do not discriminate against, Disabled People: they need to plan robust action now to reduce gaps of inequality.”

0.14 In its advice to primary health providers and commissioners about how they should address health inequalities experienced by people with learning difficulties and those with mental health labels [14], the DRC goes on to state that “there is an expectation embedded in this new duty not just that Disabled People should be treated ‘the same’ as others but that, in order to achieve equal outcomes, they should, when needed, be treated differently.”

0.15 The literature review conducted for this report, seeks to identify and analyse critically, available secondary data sources evidencing the

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health position of the disabled population of Great Britain in general and, where sources exist, that of London and Tower Hamlets in particular. Drawing upon those resources identified, it attempts to highlight the general health status of people with physical, sensory, cognitive, mental health, other hidden physical and / or learning impairment labels in the UK. Particular attention is paid to analysing the position of Disabled Children, older Disabled People, people with learning difficulties and those with mental health labels. Sources which highlight the combined effects of impairment with characteristics such as ethnicity, social class and economic status have been sought in order to shed light on the experiences of the health inequality of Disabled People facing barriers such as poverty and racism. A couple of recent examples of impairment specific research which demonstrate the stark perpetuation of health inequalities amongst Disabled People are used to indicate areas where changes in primary health service policy and practice are needed. Such ‘Improvement in the Life Chances of Disabled People’ is aspired to in the Central Government strategic planning report [15], which advocates that public bodies adopt and implement policy and practice underpinned by the social model of disability.

0.16 The context for the literature review is the National Service Frameworks and other comparative literature from the NHS, Central Government and the Department of Health. The catalyst prompting the production of this paper is the new duty placed upon the PCT to publish a Disability Equality Scheme which takes into account the position of Disabled People in the borough and assesses the impact upon the whole disabled community of the services provided and commissioned by the Trust. The review draws upon qualitative and quantitative research sources which provide information about health inequalities. It underpins the powerful personal experiences of those using Tower Hamlets PCT services, reflected in the primary research collated from the narratives obtained in 23 interviews with 3 key service providers and a cross section of Disabled People from Tower Hamlets. These interviews provide qualitative evidence of the experiences of Disabled People living and / or working in the Borough when accessing primary healthcare, serving to illustrate with real examples powerfully the findings of the literature review. The report informs and makes recommendations for developing the Disability Equality Scheme of the Tower Hamlets PCT. The practical

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suggestions at the end of the literature review, together with the conclusions and recommendations in this report, highlight areas in which primary healthcare services require ongoing and focused development to address inequality. The report proposes sustainable solutions and strategic recommendations which, if adopted, will aid the PCT in addressing current inequalities of provision.

0.17 The report indicates areas in which the impact of current and future PCT policy, procedure and practice upon Disabled People in Tower Hamlets requires further exploration. It provides a framework to guide the work of the PCT in addressing the promotion of Disability Equality through achieving better consultation with Disabled People and improving the representation of Disabled People throughout its workforce. It identifies a number of adjustments to current approaches which if adopted, will help to reduce any disproportionate impact upon Disabled People of existing Trust practice.

0.18 The drawing together of existing disparate data sources in this report will, it is anticipated, concentrate attention upon key challenges facing the PCT when implementing its Disability Equality Scheme. This is because an effective scheme will need to redress historic patterns and causes of health inequality amongst Disabled People in the borough. The time scale for undertaking this research and writing this report was very brief, starting on the 30th October 2006 and completed by the 15th November of the same year. This means that only those data sources most easily accessed have been incorporated into this snapshot evaluating the health and wellbeing of Disabled People in the borough. Relevant sources of published and unpublished peer reviewed and grey literature have been analysed.

0.19 More in-depth qualitative and quantitative investigation and on-going consultation with Disabled People is judged necessary by the report authors if a fuller picture is to be obtained, trends highlighted and the impact of changes to Trust practice is to be meaningfully evaluated.

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Acknowledgments

1.1 Stephen lee Hodgkins of Disability Information Training Opportunity edited this report.

1.2 Linda Laurie and Mike Higgins of New Perspectives were the researchers.

1.3 Robert Whittaker, also of New Perspectives, provided transcript editing and research assistance.

1.4 Cora Woodhead of Tower Hamlets PCT also provided research assistance.

1.5 All of the interviewees provided invaluable insights and supporting high quality evidence which underpin the findings of the narrative section of this document and contribute to the conclusions drawn in the report. Those interviewed were:

Yaccub EnumPauline O’hallaronKatherine Marks

Theresa AttardAbdi Rahman Isa AliAndy Bayne Nehar BegumMarie BryantJulie Cashman Zuma Chowdhury David Gallagher George GreyElaine KingSufia MalikLorraine McCarthyBridie McDounaghAbdullah MehmetKosru Miah Rosie Nyman

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Georgina Roast Clive RobbinsMarrion SherrifBarbara Stewart

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Contents

Introduction.................................................2

Acknowledgments.......................................8

Literature Review......................................11

A Qualitative Consultation – Views & Voices of Disabled People from Tower Hamlets Interviewed as part of the consultation exercise............62

Conclusions...............................................78

Strategic Recommendations.....................82

Acronyms used in this report.....................85

References................................................87

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Literature Review

2.1 In 1992, a founding organisation of the UK Disabled People’s Movement, then called the Derbyshire Coalition of Disabled People (DCDP) now the Derbyshire Coalition for Inclusive Living (DCIL) published a pamphlet illuminating the views of many Disabled People it had consulted concerning their experiences of health provision [16]. This pamphlet: ‘Patient Empowerment with Specific Reference to Disabled People,’ was intended as a response to the Department of Health 'Patients Charter', 1992. It is however striking that 14 years later, many of the concerns highlighted by DCIL still resonate today. They start by reminding readers that “given the gradual historical accumulation of power by health practitioners, expressed through the acquisition of professional knowledge and control of health resources, the word 'patient' has become disempowering in the context of what is a very unequal relationship.” They go on to highlight the concern among Disabled People that practitioners unconsciously reinforce the relative powerlessness of health service recipients through what they see as a thoughtless and generalised use of the term patient. This is, they say, most disempowering “when it is used in your own home when you are not sick.” Many Disabled People are not sick but still receive health services. The implications of the use of generalised terms such as 'patient’, 'client', 'consumer', 'professional' need to be thought through by all who use them. They are very powerful in defining relationships, too often in favour of the health worker.

2.2 DCIL demonstrates in this pamphlet the ways in which the medical and related professions have generally adopted a view which extends beyond promoting good health, seeing successful outcomes in terms of “restoring or rehabilitating 'patients' to some undefined state of able-bodied normality.” However, they point out that it is not necessarily the case that Disabled People wish to have their bodies or minds tinkered about with in order to conform to this view. They concluded that “a major education campaign needed to be developed to counter the predominant belief that being disabled is a personal tragedy to be avoided at all costs.” This negative view of human difference translates into a loss of self-worth, and contributes significantly to the powerlessness of Disabled People in health care settings. The clear and urgent need for such an education campaign across the health service as that called for by DCIL, the authors of

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this report conclude, can be argued as powerfully today as it was 14 years ago.

2.3 Much of the research cited in this report conflates long-term and/or chronic ill-health with disability. There has therefore been an unavoidable blurring of these distinct characteristics during the research and analysis, especially in the citations referred to in this section of the report. Many of the statistics used here (which apply various terms and definitions such as ‘long-term ill health’, ‘long-term limiting illness’ and ‘long-term condition’) need to be read with some caution. Firstly, use of such clumsy and inaccurate terminology almost certainly results in under-reporting and unreliable calculations of ‘impairment’. It also seems likely that such generalised ‘medical’ terminology, inexorably leads, if one is not careful, to flawed and unhelpful conclusions being drawn about the possible life chances and experiences of those labelled in this way: thus, in this report, a number of the references cited, describe some of those being interviewed or surveyed, as being ‘unable to work’ due to ‘long-term ill health’.

2.4 To reiterate a point raised in the introduction to this report, whilst most if not all of those who experience long-term ill health are likely to be Disabled People, not all Disabled People experience ill health and many of those who do, do not experience it all (of) the time. As has been pointed out, this is a fundamental flaw in the majority of research which has thus far been conducted into the health inequalities experienced by Disabled People. Nonetheless, as is evident from the diverse sources cited here, there is a compelling picture of systemic, structural and institutional inequality which requires urgent and robust action if it is to be addressed.

2.5 In a parallel piece of research to this report, ‘At anytime. Including Disabled’ [17] commissioned by the London Borough of Tower Hamlets (LBTH) Corporate Equalities Team, DITO sets the scene. “Tower Hamlets is a dynamic and diverse London Borough and whilst the Disability Rights Commission estimates 1 in 5 people in the UK will be disabled, considering the levels of poverty, high levels of benefit claimants, social service use within the borough and ageing population this could well be much higher. Basing this estimation on the 2001 census suggests that the number of Disabled People in the

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borough potentially covered by the DDA [18] and thus the DED scheme [19] would be near on 40,000. The collation of statistics concerning numbers of Disabled People is however problematic and variable depending on definition, service use and impairment specific issues.”

2.6 In their 2006 report assessing the readiness of public bodies for compliance with the DED, ‘The public sector and equality for Disabled People’ [20], Dr. Simon Roberts et al, set out their research objectives as “to test the extent to which public authorities are already taking steps to avoid discrimination against Disabled People and promote equality of opportunity in the provision of their services to assess the extent to which public authorities understand the impact of their activities on disability equality, and build in disability quality concerns in the way they conduct their activities.”

2.7 They found that the DDA “was the main reason given by organisations for integrating disability issues into their mainstream plans. The vast majority of organisations had adapted their work environment, implemented flexible working time and flexible work organisation to help disabled employees. A large number of organisations had a Disability Equality Scheme in place, although less than one-half of these had involved Disabled People in drafting it. A majority of organisations had conducted Disability Equality Impact Assessment, and also changed their employment and service provision policies and practices as a result. Few public bodies had engaged with disability organisations to review the extent to which the services met the needs of Disabled People. Most organisations had a strategy for promoting or widening the participation of disabled service users or an Action Plan to meet the needs of Disabled People. A small but notable number of organisations publish additional disability-related performance indicators in addition to the ones they are already required to publish. The vast majority of public bodies place a high priority on meeting the needs of Disabled People in all aspects of their function, except a notable minority who did not address this in their Business Plan.”

2.8 This helps to set the context within which Tower Hamlets PCT, as a spearhead trust, needs to focus and develop its activity in order to achieve disability equality. In particular, the findings of this research

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imply that many PCTs should have a greater focus on the needs and experiences of disabled service-users, in addition to those of their disabled employees. Organisations need to be more proactive in meeting the needs of Disabled People, for example, providing information in a variety of formats as a matter of course rather than on request, and developing their own performance indicators to monitor the outcomes for Disabled People that arise from the changes they make.

2.9 While a high proportion of organisations had improved access to their premises for Disabled People, the research found that there is still a need for public bodies to liaise more widely and consistently with Disabled People’s organisations to ensure that the services they provide and the way they provide them are sensitive to the needs of Disabled People.

2.10 A detailed analysis of the 2001 census results on health, disability and the provision of care [21] shows that almost 9.5 million people (18.2%) say they have “a long-term illness, health problem or disability which limits their daily activities or the work they could do.” Of these, 4.3 million are of working age (16-64 for men; 16-59 for women) more than 1 in 8 of the age group.

2.11 The proportion of people with a ‘limiting long-term illness’ (LLTI) has increased since 1991, when 13.3% of the population of England and Wales were recorded as having ‘a long-term illness.’ In the same period there has been a 3.4% increase in the number of people aged 65 and over.

2.12 Data from another new question in 2001, on general health, shows that in England and Wales, just over two-thirds of the population (68.6%) say that they are in 'good health', 22.2% say their health is 'fairly good' and 9.2% that it is 'not good'. Answers to Census questions on economic activity also provide a measure of the number of people aged between 16 and 74 who were unable to work in the week before the Census because they are ‘permanently sick or disabled.’ In England and Wales, 2.08 million people or 5.5% of the age group - 1.13 million men and 0.95 million women - are economically inactive due to ‘sickness or disability.’

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2.13 Analysis of the 2001 census data also shows that in England and Wales, there are 5.2 million people providing unpaid care: one in ten of the population. For these purposes, carers are defined as “people looking after or giving help or support to family members, friends, neighbours or others, because of long term physical or mental ill-health or disability, or problems related to old age.” Statistics concerning the numbers of carers in the UK were collated for the first time in 2001. The responses show that 68% (3.56 million) of carers provide care for up to 19 hours a week, 11% (0.57 million) for 20 to 49 hours and 21% (1.09 million) for 50 or more hours per week.

2.14 The Economic and Social Research Council (ESRC) estimates that there are about 9.8 million people in the UK with some form of impairment - one in seven of the population [22]. According to the ESRC, at the last count, in 1996, there were 750,000 wheelchair users in the UK. In 2002-03, 19% of men and 13% of women reported having ‘hearing difficulties’, and in 2004 55,000 people were registered as deaf.  In 2003, 157,000 people were registered as blind. In terms of ‘hidden disabilities’, there are about 1.8 million people with diabetes in the UK and over 350,000 people with epilepsy, for example.

2.15 When analysing the demographics of the Disabled population, the ESRC confirms that the incidence and experience of impairment differs by socio-economic status, gender, age, religion and ethnicity. Unsurprisingly, the odds of being a Disabled Person increase significantly with advancing age.  In England the likelihood of being a Disabled Person is 8 times higher among those aged 75 and over than among those aged 16-44.  Only 28% of wheelchair users are under 60. People in lower social-economic classes are more likely both to have and to acquire impairments. Disabled People are more likely either to be or become poor.  The ESRC cites figures from 2001 which show that 8% of people in Social Class I have impairments, compared to 24% of people in Social Class V.

2.16 In 2000, rates of ‘severe disability’ among children were found to be consistently higher for boys than for girls (11 per 10,000 of the male population under 17, compared with five per 10,000 of females of the same age group). However rates of diagnosed impairment amongst females are higher for older age groups.  This is because of a longer

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survival rate of Disabled Women rather than a difference in incidence of impairment.

2.17 Amongst different religious groups in the UK in 2001, age-standardised rates (ASR) of impairment were highest amongst Muslims. Almost a quarter of Muslim females (24%) were Disabled People, as were one in five (21%) of Muslim males.  Jewish people had the lowest rates of impairment (13% for both males and females). The geography of disability in the UK shows marked regional variations. Only 17% of households in the South East contain one or more Disabled Adult under the pension age.

2.18 38% of Disabled men and 37% of Disabled women were in paid employment, compared to 81% of non-disabled men and 69% of non-disabled women.  Unemployment rates for Disabled People are about twice as high as those of non-Disabled People. In part this disparity results from the large number of Disabled People who are deemed as being ‘permanently unable to work.’ 46% of disabled men and 34% of disabled women of working age were said by the ESRC to be ‘unable to work’, compared they say with 2% of non-disabled men and 1% of non-disabled women.

2.19 In 2003 2.5 million people in the UK received financial support through the Disability Living Allowance. In 2002 the UK spent 2.5% of its total Gross Domestic Product (GDP) on disability-related benefits. This is slightly above the European average of 2.2% but less than Sweden, which spends 4.3%.

2.20 Although attitudes are changing, there is evidence according to ESRC research that the low level of labour market participation amongst Disabled People is also due to tacit discrimination on the part of employers, and on practical difficulties in getting to work.  

2.21 For example, in a survey carried out by the DRC, 46% of the public thought that Disabled People were still treated unfairly by society. Furthermore, some 32% of all economically inactive working-age Disabled People said they would like to be in paid employment compared to 26% of non-Disabled People. 

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2.22 In a further survey, the DRC discovered that 73% of Disabled People with mobility and sensory impairments in the UK have difficulty accessing goods and services. Primarily this is due to steps, heavy doors and a lack of parking and lifts. In the British Social Attitudes Survey (2000) over 65% of people thought that more should be done to make shops and services more accessible to Disabled People.

2.23 The General Household Survey (GHS) of people living in Britain published in 2002 [23], cite both The Independent Inquiry into Inequalities in Health and Our Healthier Nation, which indicate that health inequalities exist amongst Disabled People. The GHS found that 59% of adults said they had good health, 27% reported they had fairly good health and 14% said their health was not good.

2.24 In the survey, 15% of children were reported as having ‘fairly good health’ and for 3% it was reported that their health was ‘not good’. 32% of children and adults (taken together) reported having a ‘longstanding condition’ while 19% said they had a ‘condition which limited their activities in some way.’

2.25 The prevalence of ‘reported longstanding illness’ has increased over the last three decades of the GHS from 21% in 1972 to 32% in 2001. In 2001, as in all previous years during which the GHS has been conducted, the likelihood of reporting ‘a chronic condition’, whether described as limiting or otherwise, increased with age.

2.26 The increase in prevalence was particularly marked among those aged 45 or over. Whereas one in five respondents aged under 45 reported a ‘longstanding illness’, nearly half of respondents aged 45 and over did so. One in ten respondents under the age of 45 reported a ‘limiting longstanding illness’, compared with nearly a third of older respondents.

2.27 Findings from other surveys have also suggested that older people are more likely to under-report impairment. This is perhaps because they regard limitations in their daily activities as a normal part of growing old and not as evidence of illness or impairment. A report from the 1998 GHS ‘People aged 65 and over’ [24], discusses how the GHS data is likely to under-estimate the incidence of ‘longstanding conditions’ among older people.

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2.28 Overall, there were no statistically significant differences between men and women in the reported prevalence of ‘longstanding’ or ‘limiting longstanding illness’, but there was a higher reported prevalence of ‘longstanding illness’ among boys compared with girls. Among boys, 17% of those aged less than five and 20% aged 5 to 15 were reported to have a ‘longstanding illness’ compared with 12% and 16% of girls respectively.

2.29 Respondents living in households whose reference person was in the ‘routine and manual’ group had the highest prevalence of ‘longstanding illness’ (37% of men and 36% of women), followed by the intermediate group (31% of men and 32% of women) and with the lowest prevalence in the ‘managerial and professional’ group (27% of men and 26% of women). A similar trend was evident among respondents who reported ‘limiting longstanding illness’ and ‘restricted activity’ in the 14 days before interview.

2.30 Thus, of the three main groups, respondents who were living in households headed by someone who was in the ‘routine and manual’ group were the most likely to report a ‘longstanding illness’, a ‘limiting longstanding illness’ or ‘restricted activity’ in the last two weeks and respondents whose household reference person was in the ‘managerial and professional’ group were least likely to report a ‘longstanding illness’ or ‘limiting longstanding illness.’

2.31 Our Healthier Nation argues that “being in work is good for your health” and states that joblessness is “clearly linked to poor physical and mental health.” [25] 19% of unemployed women reported a ‘limiting longstanding condition’, compared with 10% of those who were working at the time of the interview.

2.32 Men who were unemployed were over one and a half times more likely than those who were working (15% compared with 9%) to report ‘restricted activity’ in the two weeks before interview, but the differences were not significant for women (13% and 11% respectively).

2.33 The prevalence of ‘longstanding illness’, ‘limiting illness’ and ‘restricted activity’ cited, was highest among economically inactive

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respondents. The difference between economically inactive and working respondents, who reported ‘chronic’ and ‘acute sickness’, was significant across all age groups and was more pronounced among men than women.

2.34 A literature review conducted by DITO on behalf of LBTH just prior to this one [26], found that the ageing population of Britain is going to mean that an ever-increasing number of older people will find that they represent the largest constituent part of the Disabled Person’s population. In 2001, according to this review, 4% of people between the ages of 65 and 69 years, 7% of people between 70 and 74 years, 10% of people aged 75 to 79 years, 13% of people between the ages of 80 to 84 years and 19% of people over the age of 85 years lived in sheltered accommodation. The report goes on to comment that, with a rising population of people over the age of 85, this trend is likely to place increasing pressure on the existing sheltered housing stock.

2.35 A survey of community care provision conducted in 2006 [27], reported that more people than ever before are receiving help to live independently in their own homes, with fewer admitted to local or health authority supported residential care. The number of residents in ‘supported care’ at March 2006 fell by 3% on the previous year to a total of 256,900 ‘permanent’ and ‘temporary supported residents’. Based on a sample week in September 2005, the number of home care hours received rose by 6% on the previous year to an estimated 3.6 million. Of those living in residential institutions, nine out of ten were living in privately or independently run care homes in 2005-2006. This compares with 50% living in private or voluntary sector run homes in 1995 and one in five (20%) in 1993.

2.36 The number of supported residents in council-run homes has declined by about a third since 2002, with a 9% fall in 2006. Although the number of ‘supported residents’ in registered accommodation aged 65 and over fell by 2% between 2005 and 2006, the majority of ‘supported residents’ in registered accommodation (78%) are in this older age group (199,800). Over the past five years the number of people aged 18 to 64 with mental health labels in private and voluntary sector nursing homes rose by almost a third, reaching 2,400 in 2006. The number of people aged 18 to 64 with mental health labels in residential homes also grew by 4% to 8,900.

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2.37 In its report published in July 2003 containing a national strategy for tackling health inequalities [28] the Department of Health states that “whilst action will be taken nationally, the main contributions will be made locally." It goes on to state that “local planners, front line staff and communities know best what their problems are, and how to deal with them."

2.38 This report and national strategy document for the Health Service highlights that parts of the country have the same life expectancy now as the national average for the 1950s. These inequalities mean poorer health, reduced quality of life and early death for many people according to the report.

2.39 Generally, the more affluent people are, the better will be their health; conversely, the poorer people are the worse will be their health. But there are wide differences identified among social groups. The reasons for these differences in health are, the report postulates, in many cases “avoidable and unjust – a consequence of differences in opportunity, in access to services, and material resources.”

2.40 In 1992, DCIL pointed out that the historical development of medical practice has resulted in the concentration of resources in many large, complex and impersonal buildings, the very size of which, they say, reflects the power and dominance of the profession vis-à-vis service users. Many people find these places intimidating and confusing, and these negative reactions, DCIL argues, are often compounded in the case of Disabled People by poor design and other features. Whilst trends in Health Service planning and building programs have, to some extent moved away from this approach over the intervening period, with the advent of Private Finance Initiatives (PFI) there is a clearly discernable reversal in this trend.

2.41 DCIL also makes some telling points regarding other longstanding practices still widely adopted today in health and social care services. For example, they point out that case conferences, over-weighted by professional staff, can be very intimidating affairs. To most ‘patients’ and their supporters they can be unfamiliar and overpowering, and this inhibits openness, communication, understanding, confidence and trust. They comment that whilst multi-disciplinary team working

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may well have become an accepted part of hospital practice, it needs to change to meet the real needs of those it purports to serve.

2.42 DCIL developed ‘The Seven Needs of Independent Living’ in 1988 [29] which, at the time it was published, broke ground and laid the basis for many subsequent versions or lists of key independent living needs, identified by Disabled People’s organisations. One of the seven needs cited by DCIL, which has survived into most subsequent versions, is that for peer counselling. This is partly recognised in Tower Hamlets through the longstanding PCT-based Disability Counselling Service which, whilst not following a ‘peer counselling’ model does seek to employ counsellors with direct personal experience of disability. Pauline O’Hallaron of the Disability Counselling Service was interviewed during the compilation of the qualitative narratives that appear later in this report. Peer counselling is an important part of the process by which many Disabled People successfully respond in a positive way to the changes in their lives brought about by illness, injury or other changes in their conditions. One element of this beneficial process is often an empowering sense of direction and control in the life of the person concerned.

2.43 Another key finding of the work undertaken by DCIL concerns those diagnosed with terminal conditions. People have a right to know when they are dying: denial of this right can be accompanied by an acute sense of powerlessness. Time and again within the experience of those contributing to the DCIL pamphlet, the feelings of relatives and staff dominated the decision making process about imparting the information. It seems, according to DCIL, that it is morally wrong for the medical staff, the therapist, the nurses, social workers and possibly the family to all know that someone is going to die, when the person concerned is kept in complete or comparative ignorance of the fact.

2.44 The Department for Work and Pensions (DWP) Report, which analysed the employment rates of Disabled People [30] used the tighter definitions of ‘disability’ provided by the 1996 Health and Disability Survey (HDS) [31]. According to the DWP, three-quarters of all non-Disabled People were in work, compared with less than a third of Disabled People. The probability of having a job depended on a series of demographic and economic characteristics (as well as on

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disability). The following types of Disabled People were less likely to have a job than others:

Women with either a partner or children Men and women with a non-working partner People over the age of 45 Members of ethnic minority groups, especially Pakistanis or

Bangladeshis Those living in London

2.45 In addition, the following types of Disabled People were less likely to have a job:

People who left school early People living in areas where jobs were scarce

2.46 While Disabled People as a group were much less likely to have a job than non-Disabled People with otherwise similar demographic and economic characteristics, the characteristics of their impairment also made a big difference:

People with certain conditions or labels (especially mental health) were more likely to have poor employment prospects than others

People with certain types of impairment or label (such as ‘locomotor’, or ‘intellectual’) were more likely to be out of work than were other Disabled People (such as those with hearing impairment labels, facial or other differences)

The more ‘severe’ an individual’s overall impairment was judged to be, the poorer his or her job prospects were

2.47 The Office for National Statistics (ONS) [32] in its 2004 report, confirmed findings from the Census and HDS, that there are slightly higher proportions of boys (19%) than girls (17%) aged under 20 years reported having a mild impairment in 2000. These figures are however strikingly higher than those identified in other (more generalised) research. It seems likely that these figures can be explained by the greater rigger used by the ONS when identifying the broad range of children with impairments.

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2.48 The ONS found that rates of what they called ‘severe disability’ were consistently higher for boys than girls with 11 per 10,000 of the male population and five per 10,000 of the female population aged under 17 years in 2000. The most common condition reported among under 20-year-olds with a ‘longstanding illness’ or impairment was asthma with 42% of total impairments in 2000. From 1990 to 1998, ‘mental handicap’, (a term adopted by the ONS and provided to them by the Family Fund Trust) was the predominant condition among children and adolescents labelled as having ‘severe impairments.’ In 1999 and 2000 the predominant conditions among disabled children and adolescents labelled as having severe impairments were ‘autistic spectrum’ labels and ‘behavioural’ labels.

2.49 The distribution of children and adolescents labelled as having mild impairments was higher for those from semi-skilled manual and unskilled manual backgrounds. The highest prevalence rates of those children and adolescents labelled as having a ‘severe impairment’ were among those from semi-skilled manual backgrounds.

2.50 Disabled children and adolescents (37%) were more likely to participate in swimming in school than were non-disabled children and adolescents (30%). Swimming was also the most popular sporting activity undertaken by Disabled Children and Adolescents out of school. Horse riding was another sporting activity more frequently participated in, during school time, by Disabled Children and Adolescents (6%) than the general population of non-disabled young people (1%). Disabled Children and Adolescents cited lack of money (37%) and unsuitability of local sports facilities (37%) as some of the reasons for experiencing difficulties in accessing leisure facilities out of school.

2.51 In 2003, findings from the Families and Children Study (FACS) [33] indicated that 3% of children have what the researchers describe as ‘health that was not good’ and 15% were reported as having a ‘longstanding illness or impairment.’

2.52 This reinforces the findings of the ONS in 2001. In just over one third of cases, this ‘illness’ or ‘impairment’ was said to limit the child’s ability to attend school. This was found to be less common among

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those children living in families with at least one parent working for 16 or more hours per week.

2.53 Children from lone-parent families and from couple families where no one worked 16 or more hours per week were also more likely to have been contacted by their school because of ‘behavioural problems.’ Just over one in ten (11%) children were reported to have a ‘Special Educational Need’ (SEN). Strikingly, families in the highest income quintile were the least likely to report that their child had an SEN (3%). The most frequent type of impairment identified was amongst children labeled as having ‘learning difficulties’ (4% of all children).

2.54 In 1999, ONS carried out the first nationally representative survey of the mental health labels of children and adolescents [34]. Results indicate that there are inequalities in children's mental health depending on their household's income. Children from households with lower gross weekly incomes were more likely than those from households with higher incomes to acquire a mental health label of some kind. For most income brackets, children aged 11 to 15 were more likely to have a mental health label than those aged five to ten. In addition, children were more likely to acquire a mental health label if their parents were unemployed, and if their parents had few or no educational qualifications.

2.55 In 1999, a separate survey [35] found that the rates of those children and adolescence labelled as having a mental health condition in Great Britain varied by sex and age. Overall, boys were more likely to have a mental health label than girls. This was evident in both the 5 to 10 year age group (10% of boys compared with 6% of girls) and the 11 to 15 year age group (13% of boys compared with 10% of girls). More specifically, the prevalence of those labelled as having ‘conduct and hyperkinetic conditions’ were greater among boys than girls.

2.56 The prevalence of those labelled as having ‘emotional conditions’ (‘anxiety and depression’) was similar in boys and girls of school age. With the exception of those labelled as having ‘hyperkinetic conditions’, rates for the other main categories of mental health labels increased from childhood to adolescence.

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2.57 Children in families of Social Class V (14%) were more likely to have a mental health label than those in Social Class I families (5%). This was compounded for children in the small group of families where no parent had ever worked (21%) which was the highest rate found amongst children with acquired mental health labels. NB, in this survey: Social Class V represents ‘unskilled occupation’ of head of household and Social Class I represents ‘professional occupation’ of head of household.

2.58 Many risk factors for youth crime are shared with risks for acquiring a psychiatric label. Looked after children, young people who are homeless and young offenders are among the groups most at risk of acquiring a psychiatric condition label [36].

2.59 In 2006, The DRC published ‘Closing the Gap’ [37], its report of its 18-month investigation into the health inequalities experienced by people with mental health labels and/or learning difficulties in England and Wales. This group of Disabled People represents the largest impairment-specific communities. The DRC, which surveyed eight million personal health records in the course of undertaking this survey, found that the evidence of inequalities experienced by people with learning difficulties and those with mental health labels in accessing the full range of health provision is overwhelming. There is a significantly greater likelihood of those surveyed acquiring a ‘major illness’, of their developing ‘health problems’ at an earlier age than the rest of the population and of their dying earlier. The barriers leading to this unequal treatment are many. Poverty is linked to ‘poorer health’, but clinical evidence uncovered by the DRC, shows it is not the only factor.

2.60 The investigation focused on primary healthcare services. Many people reported very helpful primary healthcare staff. Others, though, said that they had problems with gaining access to services, the attitudes of some staff, and getting necessary treatment and support.

2.61 Besides its findings (eluded to above) that people with learning difficulties and people with mental health condition labels are more likely to experience major illnesses, to develop them younger and die of them sooner than other citizens, the DRC also found that they are less likely to get some of the evidence-based treatments and checks

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they need. According to the DRC research, people face real barriers in accessing services. In the course of its investigation the DRC sometimes encountered a complacent attitude that these excluded groups ‘just do’ die younger or ‘just won’t’ look after their health or attend appointments. The DRC concludes that these low expectations must be challenged.

2.62 According to the DRC’s calculations, there are one million people with learning difficulties, 200,000 people with schizophrenia or bipolar labels and six million people with the label of depression in England and Wales. The DRC advises PCTs to set in motion measures to meet the health needs of these most excluded, ‘high risk groups.’ This will help meet national targets to reduce health inequalities, to reduce premature death from cancer and coronary heart disease (CHD), to reduce smoking and obesity rates and to improve employment and social inclusion amongst Disabled People.

2.63 According to the DRC, evidence uncovered during this research clearly indicates that implementing changes in primary care would be straightforward and inexpensive, would reduce ‘Did Not Attend’ rates, improve early intervention for ‘high risk groups’ and improve standards of service for everyone. The DRC concludes that progress should be driven through performance management and inspection. It should be tracked by breaking down Public Service Agreement (PSA) targets (like early death from CHD and cancer) by broad impairment group. They argue that this is necessary in order to reveal accurately who is dying young from CHD or cancer, over time. Meeting these health needs, The DRC advises, is about targeting scarce resources where they are most needed: to ensure early intervention prevents avoidable ill health and crises later, by building into contracts the requirement that providers take the simple, low or no cost steps that enable excluded groups to access services easily.

2.64 International evidence shows that people with learning difficulties and/or mental health labels die younger than other citizens all over the world. They live with ‘poorer health’, preventing them from participating equally in their communities and in the economy.

2.65 The DRC found that people with mental health labels have higher rates of obesity, smoking, heart disease, high blood pressure,

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respiratory disease, diabetes, stroke and breast cancer than other citizens. People with learning difficulties have higher rates of obesity and respiratory disease, and high levels of unmet needs. One internationally new finding from the DRC investigation is that people with the label of schizophrenia are almost twice as likely to have bowel cancer as are other citizens. Both groups are likely to die younger than other people. People with mental health labels are more likely than others to get illnesses like strokes and CHD before the age of 55. Once they have them, they are less likely to survive for more than five years.

2.66 People with learning difficulties who have diabetes have fewer measurements of their body mass index (BMI) than others with diabetes. Those who have a stroke have fewer blood pressure checks than others with a stroke. They also have very low cervical and breast cancer screening rates.

2.67 For people with mental health labels, some tests and standard treatments – such as spirometry to identify respiratory illness or cholesterol checks and statins for people with heart disease – are given less often than to people without mental health labels.

2.68 Both people with learning difficulties and people with mental health labels experience ‘diagnostic overshadowing’: that is, reports of physical ill health being viewed as part of someone’s mental health label or learning difficulty, and so not investigated or treated. If problems are missed, people experience ill health and its attendant risks unnecessarily.

2.69 There is no evidence that information on the physical health needs of people with learning difficulties and/or mental health labels is either regularly collated or used locally by commissioners to develop improved services.

2.70 The DRC found that the inequalities it identified are systemic. Attempts to address them therefore require action at a strategic level. Their report found that urgent improvements to close the gap in healthcare outcomes are needed. Their key findings included the need for primary health care providers to:

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incorporate positive incentives in the GP contract to offer regular health checks for people with learning difficulties and/or mental health labels

track progress over time, so that it is known whether ‘poor health’ and preventable early death are being tackled effectively

ensure that local health services analyse the needs of the whole population (including these groups of Disabled People) and make sure that any contracts for health services meet their needs

target screening programmes correctly towards people with learning difficulties and/or mental health labels

ensure that the national bowel cancer-screening programme offers screening to people with the label of schizophrenia and considers prioritising people with this label in the future

ensure that all medical and nursing training tackles explicitly ‘diagnostic over-shadowing’ –looking for physical health conditions, rather than assuming everything is to do with a person’s psychiatric label or their learning difficulty label

ensure that all policy is subjected to a Disability Equality Impact Audit and that tackling ‘poorer health outcomes’ for Disabled People, is part of primary health care services’ Disability Equality Schemes

ensure that all GP surgeries and other primary care services invite Disabled People to record their access needs on their medical records and then meet them

2.71 In its separate guidance issued to PCTS [38] to accompany this report, The DRC explains that primary care providers need to: improve equity of access and treatment for people with learning difficulties and/or mental health labels by:

providing a range of personalised adjustments including different appointment times and lengths, text or telephone appointment reminders. Accessible appointment cards, telephone consultations and specific waiting arrangements can all help

offering regular evidence-based health checks, and close monitoring of the physical effects of any psychiatric medication, and taking extra care to ensure people receive the health promotion, screening and physical treatment they require, as

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well as information and choice in relation to physical effects of psychiatric medication

making direct contact with local groups of Disabled People and involving them in advising on improvements, for instance through delivering training to the whole primary care team so that everyone engages in improving systems

tracking progress by including people with learning difficulties and/or mental health labels and their organisations in-patient and public involvement initiatives.

2.72 A National audit conducted in 2006, which looked at rates of people with undiagnosed diabetes [39] found that one in five people likely to have diabetes remain undiagnosed.

2.73 The audit, which was the largest concerning people with diabetes ever carried out in Europe, gives comparisons with the expected number of people with diabetes for the area covered by each primary care trust.

2.74 The number of people diagnosed as having diabetes varies across the country from 60% of those expected in some trusts to 115% more than expected in others. In the second year of the audit, which covers the period 2004/05, results suggest that around 350,000 people expected to have diabetes remain undiagnosed. This is despite an additional 70,000 people with diabetes joining a register for support from their GP during the previous 12 months

2.75 This audit collected information about 500,000 people with diabetes, twice the number in the survey published during 2005. 182 primary care trusts, 3,833 GP surgeries, 75 hospital trusts and 100 specialist paediatric units were surveyed.

2.76 People who have diabetes but do not have their diagnosis recorded on a GP practice register will be unlikely to receive care and monitoring, which would minimise the risk of long-term complications such as heart and kidney disease, blindness and amputations. The key finding of this research is that there are still hundreds of thousands of people going about their lives unaware they have a condition that is very likely to reduce their life expectancy. By the time they are diagnosed, around half of people with Type 2 diabetes

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already have evidence of complications making their treatment more complex.

2.77 Other key findings of this research include:

61% of people with diabetes are now receiving regular eye examinations. A further increase of 19% is needed to achieve the 2006 Diabetes National Service Framework standard of 80%

Only a quarter of all patients with diabetes have a full annual review of their care

Older people with diabetes are more likely to have their needs recorded than are younger people

84% of people with diabetes aged between 55 and 69 had their needs identified and recorded compared to 62% of those between 16 and 24

83% of diabetes records considered in this research did not have the patient’s ethnicity recorded and 43% of records did not have the diabetes type recorded. There is a known increased risk of diabetes for particular ethnic groups, such as people from South Asia and Africa

More women with diabetes have their condition undiagnosed compared to men

The registrations of men with diabetes are largely in line with the predicted rates whereas there are a large proportion of women with diabetes who remain un-recorded, assumed undiagnosed. This under identification of women becomes more marked in the 40 years and older age groups

More women remain undiagnosed compared to men. The registrations of men with diabetes are largely in line with the predicted rates whereas there are a large proportion of women with diabetes who remain un-recorded, assumed undiagnosed. This under identification of women becomes more marked in the 40 years and older age groups

2.78 In a triennial survey about people registered as Blind and Partially Sighted in England, conducted in 2006 [40] 152,000 people were on the register of blind people. The number of people on the register of partially sighted people totaled 155,000 in March 2006. The majority

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of people ‘registered blind’ (66%) or partially sighted (68%) in 2006 were aged over 75.

2.79 In 2006, The Greater London Authority (GLA) produced an analysis of the results of the health categories - broken down by ethnic group, religion and country of birth - collected during the 2001 Census [41].

2.80 Age-standardised rates (ASR) are a useful method of analysing ‘poor health’, while controlling for age. All rates are based on an England and Wales average of 100, with figures above this being ‘less healthy.’ Overall the ASR of ‘limiting long-term illness’ (LLTI) is slightly better than average in London, though there are five boroughs which have significantly higher rates than average: these are Hackney (131), Tower Hamlets (130), Newham (130), Islington (124) and Barking and Dagenham (120).

2.81 Rates are particularly high in Inner London for people from Black Caribbean, Other Black, Bangladeshi, Other Asian, White and Black Caribbean and White and Black African ethnic groups. Rates of LLTI in 2001 in London range from 63 amongst people in the Chinese ethnic group to 136 for people in the Bangladeshi population.

2.82 The ASR rates of ‘not good’ health’ range from 65 for Chinese people to 162 for Bangladeshis. The rates show that Pakistani men are far healthier than Pakistani women. A similar trend can be seen in Indian, Other Asian and Black African groups. Conversely, White Irish women experience considerably better health than White Irish men.

2.83 People from ‘Other Ethnic groups’ than those specifically listed in the census, Bangladeshi, White and Black Caribbean, White and Black African and White and Asian people, all have poorer health in London than nationally, while Pakistani and Indian people have better rates in London.

2.84 The rates for people aged 16 to 74 by National Statistics Socio-economic Classification (NS-SEC) range from 38 for people in higher managerial and professional occupations to 222 for people who have never worked or are long-term unemployed. However, in general people from those ethnic groups which have higher rates of ‘poor

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health’, overall tend to have the highest rates in each of the socio-economic groups and vice versa. People in employment have better health than average and people in higher socio-economic groups have the best health in general.

2.85 In London the religions with people having the lowest LLTI rates are Jewish and ‘no religion’, while the highest rates are for Muslims and those from ‘any other religion.’ Men from Sikh, Hindu and Muslim religions have lower rates of LLTI than women of the same backgrounds. For most religions the rates of ‘not good health’ are higher in London than outside London.

2.86 In London the LLTI ASRs range from 30 for people born in Japan to 168 for those born in Iraq. While people born in many countries outside England and Wales have poor health rates in London, in the rest of England and Wales it is not as frequently the case. For example, people born in Iraq, Burundi, Turkey, Sudan and Kuwait all have far better rates nationally than in London.

2.87 In London, if ASR of ‘not good health’ is high, it is very likely that a ‘migrant’ (someone born outside the UK) will not be in work, and will be very unlikely to have higher level-qualifications. People with ‘poor health’ are more likely to have no qualifications, live in social rented accommodation, be unemployed, be a lone parent and/or live in overcrowded accommodation.

2.88 It is important to keep in mind that if rates go up or are higher than another rate, that indicates ‘poorer health’ and when rates go down, that indicates better health. The overall ASR for LLTI in London is 96, showing that using this single measure Londoners are in slightly better health than people from the rest of England and Wales where the ASR is 101. In London the rates range from 66 in Richmond to 155 in Tower Hamlets. Tower Hamlets has the tenth highest ASR of ‘not good health’ in the country. The other areas in the top ten are mostly in South Wales, Liverpool and Manchester.

2.89 The results for ‘people in good health’ are much narrower. In London they range from 92 in Tower Hamlets to 110 in Richmond. Using ‘good health’ as a measure, Richmond is the tenth healthiest district nationally, while Tower Hamlets is the 14th least healthy. In Tower

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Hamlets the LLTI rate for Bangladeshis fell from 172 in 1991 to 144 in 2001.

2.90 It is worth considering whether a person’s NS-SEC group could be more strongly linked with their health than their ethnic group. It is certainly true that socio-economic group is highly correlated with rates of ‘limiting long-term illness.’ In London the rates range from 38 for people in higher managerial and professional occupations to 222 for people who have never worked or are long-term unemployed. These rates cannot be directly compared with the rates for all people since they only apply to people aged 16 to 74. Nevertheless, the difference between the top socio-economic groups and the bottom ones are considerable.

2.91 There is wide variation in rates between ethnic groups within socio-economic groups. For example, the ASR for higher managerial and professional occupations ranges from 25 among Chinese people to 94 among Other Black people. Similarly people who are in the ‘not classified’ category range from 88 (for Chinese people) to 225 (for Pakistani people) while figures for people in the semi-routine occupations range from 60 (for Black African people) to 156 (for White and Black Caribbean people).

2.92 The same ethnic groups have better health no matter which socio-economic group they belong to. In general those ethnic groups with ‘poor health’ overall tend to have the highest rates in each of the socio-economic groups and vice versa. For example, Chinese and Black African people normally have the lowest rates of LLTI whereas people from Bangladeshi, White and Black Caribbean and Pakistani ethnic groups usually have the highest rates in each of the classifications. Despite these inequalities across the ethnic groups, it is still clear that normally, people in employment have better health than average and people in higher socio-economic groups have the best health.

2.93 A table commissioned by GLA for its analysis of the 2001 census, provides LLTI and general health data for 147 different countries of birth. In London, the highest LLTI ASR is 168 for people born in Iraq. Other high rates of LLTI in London include people born in Bangladesh (159), Morocco (158), Burundi (153) and Turkey (151). The countries

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from which people who are in the ‘poorest health’ come, are a mix of African, Asian and some European States. Most of the countries with people who have high rates, are in the Middle East, Northern and Eastern Africa, parts of South East Asia and the Balkans. Many of the countries in the top 20 have had wars in the years prior to the Census, so it is possible that a high proportion of those people have come to the UK to escape the effects of war.

2.94 In London, if ASR of ‘not good’ health is high, then it is very likely that a ‘migrant’ will not be in work and will be very unlikely to have higher level-qualifications. People from countries with ‘poor health’ rates are far less likely to have higher-level qualifications, be employed in managerial, professional or associate professional occupations, work in the finance industry or be in employment.

2.95 There are a few key differences between the correlations for the rest of England and Wales and those for London. For example, if a ‘migrant’ has poor health outside London they are less likely to be out of work than in London, less likely to live in overcrowded accommodation and less likely to be a lone parent. However, they are more likely to have no access to a car, more likely to be employed in managerial, professional or associate professional occupations and more likely to be aged 75 or over.

2.96 In a 2005 qualitative survey amongst four ethnic groups – Bangladeshis, Pakistanis, Ghanaians and indigenous white people in East London [42] – the experiences of people with the label of having a ‘long-term illness’ were interviewed. While it was found that being a member of a particular ethnic community does imply certain ‘ways of being and doing’, as well as access to certain ‘resources’, wider structural forces also affect the experience of people with the label of ‘long-term illness.’ Furthermore, individuals can and do find ways of redefining their ethnic identity so that responses to impairment and ‘ill health’, are diverse within groups. It is also clear that many of the issues facing families with members who have the label of a ‘long-term illness’, cut across ethnic lines.

2.97 Their findings dispel the stereotype of cohesive South Asian families with unproblematic support structures. ‘Long-term ill health’ was perceived by some to bring positive knock-on effects. A number of

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men described by the researchers as ‘incapacitated’ who had stopped work, were pleased to be able to spend more time with their children. Some women spoke of more time together and more help with household work since their husbands had dropped out of the labour market. Others mentioned how their children had matured and risen to the challenge of being more responsible and caring.

2.98 The link between ‘long-term illness’ and financial hardship was a prominent one, particularly among male respondents, serving to reinforce the conclusions drawn here from the GLA analysis of the 2001 census data. Respondents spoke not only of having to go without and needing to budget carefully, but of the mental stress that living on a low income brings.

2.99 Costs of accessible transport seem to be a particular issue for many who are labelled as having a ‘long-term illness.’ Giving up a car to reduce expenditure had left some feeling what the researchers describe as ‘house-bound.’ Buses were often inconvenient and difficult to manage, while taxis are prohibitively expensive. The positive effects of the recent move towards making the entire London buss fleet accessible may not have had time to feed through to this research. Besides, there are a number of factors, beyond physical inaccessibility which are likely to influence Disabled People’s regular use of public transport.

2.100 Some respondents in this research felt they had a limited range of possible options open to them and that their health made all of these inappropriate. For instance, a Bangladeshi man who had only worked in restaurants and as a tailor in the past could not see any other avenue open to him and did not feel well enough to carry out such physically demanding jobs. The degree of latitude that individuals have is no doubt partly dependent upon qualifications and experience. However, how employers and colleagues respond to impairment and people with a label of ‘chronic ill health’ is also important. There are indications in the findings from this research that these factors may be compounded by less favourable treatment and circumstances, linked to ethnicity and gender.

2.101 In several cases, being actively engaged in work was identified as a factor that helps people to live with their impairment and/or their

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‘illness’ label. However, for many people, voluntary work appears to be the only option available, since paid work opportunities lack the flexibility they require (for instance to attend hospital appointments, comply with medication regimes or deal with side-effects such as pain and lack of energy). A lack of employment opportunities was a source of frustration for several people with long-term impairments spoken to by the researchers.

2.102 In relation to the health service, there was a huge variation in people’s levels of satisfaction and personal experiences. However, among Pakistanis in particular there was a strong theme of serious inadequacy of provision. In relation to social services support, a common theme was the mismatch between people’s own identification of what is needed and what they actually receive. Respondents often viewed the provision of services from either health or social services as being inflexible. It was common amongst people spoken to by the researchers to talk of ‘fighting’ to get what they needed. Many respondents simply did not bother to pursue social services for things like aids and adaptations, as they perceived the process to be arduous and stressful.

2.103 Often when individuals are most in need of support they are unlikely to be able to go through the procedures necessary to get it. The systems are perceived to be complicated, and people feel overwhelmed by paperwork and the need to prove their entitlement.

2.104 Acquiring an impairment or a ‘long-term illness’ label without residential rights seriously compromises well-being as individuals are unable to gain access to the health or social care services available to those with legal status. Even charitable/voluntary organisations were found to be unable to offer assistance since these commonly rely on referrals from statutory bodies.

2.105 In a series of systematic reviews of access to and uptake of mental health and linked services, analysed by ethnicity, for the NHS Executive London in 2001 [43] a substantial inequality in treatment was revealed. Researchers identified significant differences experienced by people from specific ethnic groups for their routes into mental health and other services. Patients of Afro-Caribbean origin are more likely to make contact with services through the police and judicial

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system and are over-represented in such services. Although admission and re-admission rates are higher for black patients and lower for patients of South Asian origin, loss of contact with mental health services is more frequent for white patients.

2.106 There is an excess of compulsory admissions of people with an Afro-Caribbean background, after adjustment for age, diagnosis/label and apparent ‘history of violence’, but not necessarily at first contact with mental health services.

2.107 In an ethnographic study of the perceptions of older Somali men in East London concerning ‘anxiety and depression’ [44] several factors were perceived to decrease life satisfaction and increase vulnerability to ‘depression.’ In particular, what the researchers describe as ‘low family support’ in the face of increasing physical impairment, compounded feelings of loneliness. A key finding was the inadequate access to community services identified amongst respondents. An inability to return home to Somalia was a key concern amongst those interviewed in this study. Social isolation, a low level of control over one's life, feelings of helplessness and social degradation were all key contributing factors towards feelings of depression. Significantly, ageism, racial/religious discrimination and, to a lesser extent, racial harassment were common themes identified in people who were said to be ‘depressed.’ Family support was the main buffer against such feelings of ‘depression.’

2.108 The researchers found a clear need for social workers and health professionals to advance discussions of mental-health issues in the community and for service providers to promote greater access to culturally relevant medical and social services for Somali elders in Tower Hamlets. It was also found that health and social work staff need to do more to strengthen informal support networks.

2.109 The DWP produce statistics for the numbers of benefit claimants in each district across the Country [45] [46]. The most recently produced statistics indicate that there are 11,510 Incapacity Benefit (IB) claimants in Tower Hamlets, of which 4,200 are women and 7,310 are men. The total number of IB claimants in the Borough constitutes around 5.2% of its population. There are a ttotal of 5,880 claimants of Disability Living Allowance in the Borough, constituting around

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2.7% of the Borough’s population. Unfortunately, the DWP does not provide public statistics further breaking down these figures, which would enable a greater analysis of trends, inequalities and gaps to be addressed. Nonetheless, these figures alone indicate that a significant proportion of the Borough’s residents claim disability-related benefits.

2.110 In the parallel literature review to this one, conducted by DITO for LBTH [47] the 2004 Housing Study is cited. It reveals a stark context to the housing situation within the Borough of Tower Hamlets. The study identifies that levels of poverty in the borough are the second highest in London. Over half the population of Tower Hamlets are residents in social housing. The percentage identified in the study who are living in housing defined as being unsuitable, is nearly a quarter of the borough’s households, (24.8%). Over four thousand households cite mobility and health reasons for the inadequacy of their accommodation. However, a breakdown of the statistics by ethnicity, shows that most households that identify as having mobility and related difficulties with their accommodation are predominantly white. There may be a significant level of under-reporting of impairment or health-related issues amongst the Borough’s citizens of Black and Asian origin who live in inadequate housing. This finding is made more likely in light of some of the findings highlighted in the previous two studies referred to here. This is just one example however of a gap in research knowledge concerning the impact of health inequalities amongst Disabled People in Tower Hamlets.

2.111 Within the category of ‘special needs housing’ there are 8,576 households in the borough with at least one disabled occupant. The major requests for adaptations and improvements range from needing a shower to be installed; parking spaces to be provided; handrails to be fitted; lifts installed; or a expressed need for single level accommodation. As the market price of housing within the borough is rising rapidly due to demand from the City it seems clear that these residents will remain in the social housing sector for the foreseeable future. There has been a depletion in available social housing as a consequence of the introduction in the nineteen eighties of the ‘Right to Buy.’ Further evidence of the social inequalities that exist in the Borough is to be found in the Best Value Review of Social Housing conducted by LBTH which identifies stark differences

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between the types and quality of property available in different parts of the borough. Sheltered Housing is another useful measure of the profile of the disabled population of the Borough in that it is increasingly becoming the main residential option for many older Disabled People. The existence of such provision is expanding but not in line with the identified needs of the population.

2.112 In line with national changes in demographic profile there are particular factors that are affecting the elder person’s population of the Borough. Tower Hamlet’s population of elder people from black and minority ethnic communities is increasing. Service providers need to ensure a more inclusive, flexible, sensitive and dynamic approach to service delivery, which the report authors would strongly advocate as being the best means by which health and other inequalities experienced by Disabled People across the borough can be eliminated. The PCT and other service providers will also need carefully to consider the extent to which they can focus energy and resources upon expanding provision solely designed to meet the specific needs of particular communities, including unique services which support the lifestyles, cultural and religious requirements within different sections of the population.

2.113 The particular demographics of the Borough will prove to be the challenge in ensuring outcomes that will be judged satisfactory by Disabled customers and service providers alike. The ethnic mix of the Borough means that diverse aims have to be met from finite finances with conflicting social and political pressures. The population is 33.4% Bangladeshi, 3.4% Black African and 2.7% Afro-Caribbean. As indicated in this report, the Bangladeshi population has high indices of social deprivation, unemployment, impairment, ‘ill health’ labels and poor housing. Similar problems affect the extensive Somali population. Research cited in this report as well as other studies and surveys not cited here, indicate that both Somali and Bangladeshi people experience high levels of racial discrimination and harassment. This is compounded by ‘disability discrimination and harassment’ for Disabled People in these communities.

2.114 Tower Hamlets PCT has shared with the authors of this report the results of its first Equality Audit of the individual services it provides

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encompassing ‘disability’. These had not been collated and the report authors have not had the opportunity to do this. It is impossible therefore to draw detailed or conclusive findings. Nonetheless, it seems apparent from a brief study of these individual results that preliminary indications suggest that none of the Trust’s ‘service areas’ appear yet to record or monitor consistently ‘disability’ or ‘impairment’, beyond the areas of primary clinical treatment for individual services. If these preliminary indications are borne out when the Audit results are thoroughly analysed by the Trust, this is likely to constitute a key finding on which the Trust will need to act without delay if it is to meet both its statutory and strategic service planning imperatives.

2.115 A few of the responses from individual service areas indicate, erroneously, that the need to conduct Equality Audits does not apply to them. A number of ‘service areas’ which fund, commission and/or conduct research, indicate that they neither monitor nor undertake ‘disability’-related research. This is likely to be an unsatisfactory response if the Trust is to address gaps in current research identified in this report. Some individual service responses to queries about their equality monitoring, indicate potentially problematic approaches to recording equality areas other than ‘disability’/’impairment’. Some service areas identify shortcomings in information communication technology (ICT) as the reason for their inability to conduct consistent equality monitoring. These somewhat disparate initial findings, when taken together, appear to indicate an urgent need for the Trust to address potential understanding and resourcing deficits across its services.

2.116 The PCT in its 2005/2008 Local Delivery Plan [48] states that “as a Spearhead PCT, THPCT will set more demanding targets especially in key areas aimed at reducing inequalities. The PCT has already established the key principles that will underpin this work. These are:

Informed choice Personalisation of care Better working together”

2.117 The PCT identifies that boys born today in the borough can expect to live 3.2 years less than boys on average in England and Wales and

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girls for 1.7 years less than average. Life expectancy differentials are significant with a gap of 7.7 years between wards for women and 11 years for men. It is estimated that there are 8-9000 people with diabetes and 4-5500 people with Chronic Obstructive Pulmonary Disease (COPD) living in Tower Hamlets – twice the national rates. Two thirds of all deaths are due to cancer and Coronary Heart Disease (CHD).

2.118 The Trust has identified that the most immediate impact on increasing life expectancy and reducing inequalities in health will be gained through delivering more and better primary care mainly through structured disease management programmes for Disabled People with long-term condition labels. In its plan, the Trust says that it will:

support more people to look after themselves prevent more people with long-term conditions falling ill on a

regular basis

2.119 Health and Well-being in Tower Hamlets: A Strategy for primary and community care services 2006 to 2016 [49] is a collaborative strategy drawn up by public health and social care providers in the Borough. Its key objectives include:

A bigger role for the voluntary sector. This sector, it is recognised, has the knowledge and expertise to provide services designed to meet the needs of specific groups

Preventing ‘ill health’ and offering early assistance when people become ill or develop an impairment

A broad co-ordinated approach to ensure the well-being and independent living of young people and those it describes as ‘vulnerable groups’

More primary and community services closer to home

2.120 The plan goes on to cite the Borough’s diverse and growing population as a key factor in determining the shape and character of future service development. 48% of the population is drawn from minority ethnic groups. There are high numbers of children and young people in the borough, with the number of births expected to rise by 57% over the next 10 years. Current estimates are that the borough’s population will grow from 220,500 to 270,000 over the next

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ten years. Much of this growth will come as people move into the borough as part of the regeneration and development of areas such as the Lower Lea Valley, the City fringe and the Isle of Dogs. The redevelopment of the older housing estates across the borough may also increase population densities.

2.121 As clearly identified earlier in this literature review, Tower Hamlets’ population is deprived in comparison with other parts of the country. This means lower levels of employment, poorer housing, a higher incidence of disease and reduced life expectancy caused in the main by cancer and CHD. In Tower Hamlets:

15,000 people are recorded as having high blood pressure 8,200 have diabetes 10,000 have asthma 5,000 have a label of ‘depression’ 37% smoke 20% of children are obese and one third are overweight more people are dying earlier of CHD than elsewhere (the

borough’s standard mortality rate shows 49% worse health than average)

2.122 The PCT has as a key goal to help make Tower Hamlets a better place for excellent public services – improving public services for local people to make sure they represent good value for money and are provided in ways that meet local needs. The PCT and social services, according to their joint strategy document, aspire to being able to offer equal access and choice to every single person in the borough, ensuring that services more closely reflect the diversity of the population. They have also undertaken that, in the future, health and social care services in the Borough will be overwhelmingly staffed by local people whose profile reflects the community they serve. Critically for the Borough’s Disabled population, the PCT and social care providers plan to ensure that care is experienced as if it were provided by one organisation in a completely co-ordinated and seamless way, irrespective of the actual organisational arrangements in place. In their joint plan, the PCT and Social Services state that their aim is to make sure that the great majority of care and support will be provided in the communities in which people live, not in hospital and not in institutional settings. It will however be supported

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by the highest quality secondary care services, with maximum ease of access. They say it will be largely delivered in or close to people’s homes, using modern technology to reduce travelling and to ensure prompt response.

2.123 The City Council and the Trust seek to arrive at a point at which services and the way they are delivered is geared, above all, to preventing ill health and institutional care, ensuring that people receive support early, promoting independence and choice.

2.124 Services related to employment, assistance with benefits, education, housing, environment and leisure each have a critical role in improving health and reducing health inequalities. This intention to move towards seamless service provision will underpin the creation of an environment which will truly empower Disabled People living and/or working in the Borough.

2.125 Professor Peter Beresford has analysed current trends towards ‘user involvement’ in health research [50] with a view to exploring how such involvement can contribute to tackling health inequalities. Many of the conclusions he reaches can be applied equally to consulting with and involving Disabled People in all aspects of services other than research. Beresford concludes that participatory research approaches are likely to have particular benefits in developing new knowledge about health inequalities and ways of challenging them. Unless attention is paid to addressing diversity in user involvement in research, it is likely, he claims, to reinforce rather than cast light on existing exclusions and marginalization, to the detriment of any attempt to understand and address health inequalities.

2.126 There is now strong and increasing pressure for such ‘user involvement’ in research and evaluation from government, research funders and health and social care service users. NHS research and development (R&D) established Involve (formerly Consumers in NHS Research) to take forward such involvement in health, public health and social care. New statutory research networks, like the Cancer and Mental Health Research Networks, have provisions for such involvement in their own processes and require evidence of it in research applications. Funders, such as the Joseph Rowntree

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Foundation (JRF) and Big Lottery (BL) have taken a lead in supporting such ‘user involvement research’.

2.127 A range of degrees of user involvement in research along a number of dimensions has begun to emerge. Service users/research participants may be involved in any of these dimensions. They include:

identifying the purpose and potential benefits of research identifying the focus of research and research question(s) commissioning research seeking, obtaining and controlling research funding designing the research undertaking the research (as researcher, interviewer, etc) managing/controlling the research collating and analyzing data producing findings writing up and producing publications/outputs developing and carrying out dissemination policies deciding and undertaking follow up action (Beresford and

Evans, 1999) [51]

2.128 These suggestions for comprehensive service user involvement throughout the research process, can and should be applied to consultation with and meaningful involvement of Disabled People in all aspects of PCT services.

2.129 Beresford goes on to suggest that service users may also be involved in the broader processes and structures of research. There are examples of all the following expressions of such involvement, which can include being involved in:

identifying and setting research agendas research institutions/organizations purchasing research the development of research methods and methodology selection of research projects for funding the recruitment and promotion of researchers research training and education

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peer reviewing for and on editorial boards of journals and other publications

2.130 Again this approach to involving people who use services in strategic, commissioning, planning, recruitment and other management functions, can and should be applied equally and flexibly to meaningful participation by disabled People and other seldom heard voices in the management of the services delivered by the PCT. If this is to be achieved, a sustainable contractual arrangement for the provision of such ongoing participation, involvement and community support for the work of the Trust, will need to be developed with user-led organisations in the Borough. In particular, taking into account the current very limited capacity of such organisations, which is mainly due to funding restrictions and linked resource limitations, the PCT will need to play a strategic role in supporting Disabled People’s organisations in Tower Hamlets to build their organisational capacity. This will need to include the investment of resources in equipping Disabled People with the necessary skills and knowledge to contribute meaningfully to the work of specific service areas in which they are asked to participate. Any protocol developed for the involvement of Disabled People in the work of the Trust will also need to take fully into account the need to meet the access needs of those participating.

2.131 If a sustained approach to achieving ongoing participation by Disabled People is not adopted by the PCT, it will be unrealistic for the Trust to expect that it can call upon this important resource within the voluntary sector to assist it in making services accountable and responsive to Disabled People in the Borough.

2.132 The combined findings of the primary and desk-based research conducted for this report, lead the authors to propose a significant number of practical changes which the PCT could begin to implement in the short and medium term. Besides the conclusions drawn from the research and the strategic recommendations in this report, Tower Hamlets, which aspires by the year 2016 to be “the best trust in the Country” [52] needs to achieve a sea change in how its services are experienced by Disabled People, in its human and other resource management strategies, if this aspiration is to be attained.

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2.133 DCIL [53] as early as 1992, prior to the passing into law of the DDA [54] indicated the importance of paying careful attention, in consultation with representative Disabled People, to matters such as adjacent parking, arrangements which are welcoming and helpful to people with visual or hearing impairments and to fixtures, fittings, aids and equipment which promote independent functioning rather than dependence on staff. In its guidance to healthcare services [55] the DRC points out that, under the DDA [56], hospitals and other health services must provide ‘reasonable adjustments’ for Disabled People to enable them to access their services. ‘Reasonable adjustments’ should include, but not be limited to:

2.134 Changing policies, practices and procedures

o Letting someone bring their assistance dog into the hospital

o Allowing people to make appointments by e-mail, fax or letter if talking on the telephone poses them with barriers to communication

o Ensuring that a patient has the option of giving the receptionist initial details in a confidential environment such as a private side room

o Looking at policies and procedures about who can accompany patients into clinical areas. A Disabled Person may wish to be accompanied by a friend, family member or advocate

o Ensuring that manual lifting and handling policies are not causing difficulties for Disabled People

2.135 Providing auxiliary aids and services

o Going directly to somebody who is hearing impaired rather than calling their name in the waiting area

o Having large print as standard so that service users can more easily read forms without having to ask for help. This also helps people who otherwise need to use reading glasses

o Providing communication support such as qualified British Sign and minority ethnic community language interpreters

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to enable Deaf and other Disabled People to access services in the same way as non-disabled people

o Providing discrete assistance to people with access needs when reading or writing

2.136 Providing an alternative service where the usual service location is not and cannot be made accessible

o A hospital or other primary care providing service such as phlebotomy, may be situated at the far end of the building, a considerable distance from the entrance and the lift. For Disabled People who have an ambulatory or other impairment which means that walking more than short distances is impossible for them, the service could arrange for a phlebotomist to be available in a part of the building nearer the entrance

2.137 Removing, altering or avoiding barriers in the premises

o Removing steps to make an entrance levelo Altering steps to provide a ramp as wello Avoiding the need to use steps by providing another

accessible entranceo It can also be as simple as keeping building entrances

and other areas clear of rubbish or hazards

Cross-service activities where ‘reasonable adjustments’ can and should be made by the Trust include:

2.138 Making an appointment

o Any requirements can be determined discretely at this point e.g. “Will you need any help when you arrive here?” Determining such needs, recording them, passing them on and acting upon them is critical for ensuring high service quality to Disabled People

o People who are Deaf or hearing impaired quite often use a textphone or Type Talk. Ensure that all staff understand fully how these work, as typed messages are

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often in abbreviated forms. Advertise such facilities along with other contact details for services

o When making appointments it is useful to be able to provide details of local transport, particularly that which is accessible

o When booking appointments, staff should allow for any possible delays due to difficulties a Disabled Person might face, particularly if they are using the service for the first time

2.139 Arriving at the service

o Someone with a learning difficulty label might want some assistance finding their way around

o People experiencing high levels of anxiety might want someone to support and/or accompany them

o Wheelchair users are likely to want to use their own wheelchairs. Appropriate arrangements will therefore need to be in place to support and assist anyone who may have to transfer from their chair if this is necessary

o Good, clear head-height signage can help people with hearing impairments, visual impairments and wheelchair users as they arrive. More detail is provided about this later in this section

o Staff should monitor in order to prevent mis-use of reserved parking for Disabled People and help if this is full of vehicles authorised to park in this area

2.140 Reception areas

o Be flexible and find out about the requirements of visitors so that, where appropriate, these can be recorded (if consent is given) and passed on where necessary

o Allow people sufficient time to give their detailso Good signage, which is easy to read, is necessary.

Picture symbols enable people whose first language is not English, users of sign language, people with learning difficulties and others to find their way more easily

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o Reception desks should be fully accessible to Disabled People. They need to be at the right height for people using wheelchairs. This will also be better for adults with restricted growth and for children

o Glass screens should not be used at counters as they can reflect light and cause communication difficulties

o An induction loop should be fitted and in working order at reception areas

o Reception staff need to be aware of the Type Talk facility if a textphone is not available

o Some people may need a calm waiting area, perhaps due to anxiety

o It is a priority for all reception staff to receive disability equality training

o If there is a security door, staff need to be able to identify when someone might need help getting in. Someone with a hearing impairment may not hear instructions given from an intercom, someone with a visual impairment may not locate any call buttons or someone with an ambulatory impairment may not be able to operate the door. Such barriers also pose obstacles to people with pushchairs and prams

2.141 Waiting areas

o Waiting areas should be calm, welcoming environments. An atmosphere like this is less intimidating to both Disabled People and non-disabled people

o It is important for staff to occasionally and discreetly check the comfort or requirements of service users. If in doubt, it is always best to ask

o There might need to be a designated quiet area in some larger waiting areas

o The waiting area should have been assessed to ensure that it can meet the needs of people with different impairments, for example good lighting, contrast, flexible seating, good signage

2.142 Initial assessment or treatment areas

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o By the time a Disabled Person has reached these areas, their requirements should have been ascertained and, where appropriate, passed to treatment staff

o Always communicate directly with service users o When someone is shown into the treatment or

consultation area, the health professional should introduce themselves and check how they wish to be examined

o If at any time a hoist or any other assistive equipment is required by a Disabled Person, please ensure all staff are trained to use it

o Health professionals should avoid using complicated language or jargon when giving a diagnosis or explaining a treatment procedure and should take time explaining these. There is more detailed guidance on use of plain English later in this section

o If it is essential to leave someone in the middle of their treatment for any length of time, make sure they know why and regularly check to see if they need anything. Someone may need to change their posture, want to communicate a personal care need or be experiencing anxiety

o Make sure that auxiliary aids are available for people who need them. A portable induction loop system will be needed if the needs of hearing aid users are to be met adequately. Staff will also need to learn how to set up and use it

o Deaf People will need a sign language interpreter and people whose first language is not English may need an interpreter who speaks their own language

2.143 Referral on to wards and other treatment areas

o If a Disabled Person is going to be referred on to other services, consent will need to be obtained with regards to passing on any information about their access requirements

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o It is important that people are kept fully informed of why and to where they are being referred. People should also be given realistic information about how long they should expect to be there. This should include informing people about facilities such as nearby toilets, refreshments and any access issues

o Someone might want assistance from a member of staff in finding or getting to another service or part of the building

o Someone may need a member of staff to describe or write down clear directions for them. Use clear and straightforward language. Avoid using terms such as ”up there” or ”the next block”

o Consider the likely route someone will take who has been referred on to another service or part of the building. Routes need to be accessible. Some people will not be able to follow colour-coded way finders. If the route is not short, there should be somewhere to stop and rest along the way

o When treatment is described, it is important to make sure that the person receiving the treatment understands it. It can be confusing for anyone to be told about several things at once.

o The location of equipment, such as any alarm buttons or plug sockets, nearby facilities or information about the need to use any specific equipment, such as an IV drip should not be explained whilst someone is still too nervous to question or absorb details

o Consider how some forms of treatment might further impair a Disabled Person. An IV drip can, if badly located, hamper effective sign language

o Check that someone whose movement may be restricted due to the treatment they are receiving has any equipment they require within reach

2.144 Discharge

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o Standard discharge arrangements may need to be amended in order to take account of the individual needs of Disabled People

o Additional support or equipment may be needed by a Disabled Person who is a new parent

o Ask people being discharged whether or not they need any assistance with making transport arrangements. Someone may need a taxi booking or assistance in finding the bus stop

o People may not always consider fully any changed needs they may have if they have a newly acquired or temporary impairment. It is useful to have accessible guides to services available. Staff can also use a straightforward checklist to help someone think through the issues that may arise for them. All primary care service providers should have established close working relationships with social work staff

o It is important that staff do not assume that Disabled People have support at home. Disabled People may themselves have caring responsibilities

o Make sure people know who they can contact if they have any questions about post-discharge arrangements

o Regularly seek to audit the way services are delivered. A feedback form for people to complete should ask how any access requirements were recognised and addressed. This feedback should be collated and used to improve services and to assess what is working well

o Help someone who has access needs when reading or writing on a standard form, for example due to visual impairment, dyslexia or limb weakness after a stroke, to fill it in

o Ensure that people are asked if all necessary arrangements are in place for when they arrive home. The property may not have been heated adequately during periods of cold weather

2.145 Additional facilities

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o Disabled People should be able to access clearly signposted telephones without difficulty. Ways of achieving this might include telephones at different heights, with seats alongside them. Good practice also suggests that telephones should be placed so as to facilitate access for all, including in-patients and visitors in a hospital environment. Access to a minicom telephone should also be available for people who want to use a text input phone

o Toilets will be easier for all to use if the male/female indicators are clear, contrasting and preferably embossed (tactile)

o Ensure that accessible toilets are not used for storageo Access to toilets is a vital facility for those required to

wait, so this is a priority when a professional access audit is conducted

o In the event of the emergency button being used in the accessible toilet, staff should have been trained to recognise the sound of the alarm and to know the appropriate action to take

o Cafe areas, shops, and vending machines should be equally accessible to disabled service users

o Tables in cafe areas should be capable of rearrangement. They should not be so low as to form a trip hazard. Heavy, wide shin-level tables can cause serious injuries. If the use of tables which are too low for wheelchair users is unavoidable, the service should have ‘blocks’ available. These should simply be placed under the legs of the table without fuss. Unsuitable furniture should however be replaced with accessible substitutes as soon as resources permit and in any event when furniture is being upgraded or replaced as part of any investment plan or rolling program of capital works.

o Seating at a café should again cater for different requirements. Some chairs should have high backs and arms

o The counter needs to be low enough so that staff can easily and safely serve any customer

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o Flexibility is always the best policy with services like catering. Menus should always be kept up-to-date and available in different formats such as large print and Braille. A staff member should, where appropriate, assist customers to select and get refreshments

o Staff working in self service cafés or shops should offer to assist Disabled People to select items, and be willing to carry items to people’s tables

o There should be signs or symbols in strategic places to point out areas where welcomers or other assistance staff can be found

2.146 Staff training

o Adequate disability equality training for all staff is an important part of meeting the requirements of the DDA [57]

o Training can be delivered through specialist courses or incorporated into existing training programmes. Such training should always be included in staff inductions, but existing and senior staff should also receive disability equality training appropriate to and customised for their specific roles in the organisation

o Issues covered in training need to be relevant to staff, and staff need to ensure that practice in the workplace reflects what they have learned

o All disability equality training is based on the social model of disability [58]. This approach will best equip staff with practical tools to bring about change in the unequal treatment of Disabled People. Disability-related training which attempts to simulate experience of impairments or which focuses upon the personal feelings of participants to the exclusion of practical changes in individual and organisational behaviours, is very likely to be counter-productive

o Disability equality training focuses upon the social, behavioural and environmental factors that Disabled People deal with and is concerned with taking positive action to remove the barriers that Disabled People face at an institutional as well as an individual level. This type of

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training is designed and run by Disabled People. The DRC recommends this training for all staff

o It may be necessary to prioritise training programmes and stage this process over several years

o Senior clinicians, management and board members will need appropriate training

o Priority groups for receiving disability equality training are usually those who have initial contact with patients such as receptionists, switchboard operators, triage nurses and doctors

2.147 General advice

o Staff motivation to improve services for Disabled People needs to be led from the top by managers who are determined to offer a high quality service to all. Commitment needs to be reinforced with policies, practices and procedures which recognise and value good service quality

o Find out how Disabled People want you to assist them first. Never simply take hold of someone

o Use an everyday tone of voice. Do not shout at or patronise people

o Never attempt to guide or pull anyone backwardso Enable and support people to communicate in their own

way, and in their own timeo Take the time to explain to people what is going on and

check that they understand, to avoid unnecessary anxietyo Don’t make assumptions

2.148 In 2002, Dr. Laurence Clarke wrote a report for the Liverpool Central Primary Care Trust about producing accessible health information [59]. Part III section 21 of the DDA [60] which came into effect in October 1999, specifically requires service providers, such as the health service, to make ‘reasonable adjustments’ in order to ensure that any information provided is accessible. The findings presented by Dr Clarke indicate that this law is currently not being complied with.

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2.149 The health service should provide documents in large print, large print with pictures and symbols, Braille, computer disc, website, audiotape and videotape with plain, spoken language, audio description and British Sign Language. Plain English should be used at all times, together with a 14-point sans serif font. Phone calls and face-to-face meetings should be available alternatives to written communication.

2.150 Dr. Clarke recommends that service providers, when using plain written English, should:

keep sentences short – 15 to 20 words make only one main point in a sentence write active, positive sentences avoid abstract thought, figurative language and metaphors be direct to the reader – use I, we, you try to make writing sound like speech use everyday words be consistent and repeat words not use jargon, acronyms or abbreviations explain complex ideas give the reader the chance to comment on the information

2.151 When service providers are considering typeface and font size for documents Dr. Clarke recommends that:

a sans-serif font is always used - Adobe Frutiger for professionally printed material and Arial for documents produced in-house

block capitals, italics and underlining should never be used. Bold type can be used instead

standard print should use a font size of no less than size 14-point

large print should be at least of size 20-point

2.152 When service providers are designing and installing signage, Dr. Clarke recommends that they should:

ensure it adheres to the NHS ‘Identity Guidelines: Capital Build Projects’

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2.153 When service providers are printing and laying out text, Dr. Clarke recommends that they should:

use matt paper that weighs over 90 grams per square metre (gsm) and make sure that the folding would not stop the document being scanned.

not justify the right-hand margin ensure that lines are neither too long nor too short - 65

characters maximum not place text in columns avoid reverse type - white writing on a coloured background use good quality matt paper and either a cream or tinted

background to avoid glare not break up words with a hyphen at the end of a line never let sentences run onto the next page break up the text into small paragraphs that succinctly make

a point use bullet points to make the main points clear denote Sections with clear headings and colour coding ensure that the leading (the space between each line) is

approximately 1.5 times the font size use only pictures which are large, illustrate a point and

placed a sufficient distance away from the text not use patronising Illustrations only use symbols to indicate the sort of information given, not

as a replacement for text ensure that where columns of text are unavoidable, they

have sufficient space left between them use generous amounts of space on forms for people to fill in

a response use a consistent layout for different ranges of leaflets

2.154 To ensure appropriate access to alternative formats by those who need them, DR. Clarke recommends that service providers ensure that:

availability of alternative formats is clearly displayed in large print on the front cover of all leaflets

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alternative formats are available in hospitals, waiting rooms, libraries and other public buildings

an accessible catalogue is produced listing every leaflet and the formats in which it is available

electronic Healthcare Records are used to record people’s information access needs

2.155 When service providers are designing and constructing websites, Dr. Clarke recommends that:

sites conform to the W3C Web Accessibility Initiative guidelines – this can be checked using the W3C validator (www.w3.validator.org) and the Bobby automated checker (www.cast.org/bobby)

all images and sound clips are accompanied with alternative textual descriptions

video clips are captioned or an alternative transcription provided

there is a good contrast between the foreground and background colours

links are always clearly identifiable by means other than colour alone, for example underlining

reliance is not placed upon video, Flash movies and Java applets to convey information - always provide a way to skip them and an alternative textual description

Portable Document Format (PDF) files are created using the latest version of Adobe Acrobat with the accessibility option enabled

there is a mechanism to change the colour scheme, font typeface and size to suit individual needs

a text-only option is always available frames and tables are either avoided, or tags used to indicate

the order in which the text should be read important information is available as an on-line signed video

clip

2.156 When service providers are issuing prescriptions and medication, Dr. Clarke recommends that:

large clear print is used on prescription notes

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the reverse side and repeat prescription forms are redesigned to make them accessible

a system where a prescription and a patient’s exemption details are passed directly to their chemist of choice by the practice would eliminate the need for prescription notes altogether

the ‘speaking medication label’ is made available the information that comes with medication is accessible

2.157 When service providers are setting appointments Dr. Clarke recommends that:

all National Health Service premises and family doctors have a textphone o the NHS UK website directory of family doctors in

accessible buildings is publicised better the system in the waiting room for informing patients of when

their appointment is due is audible, visual and tactile doctors come and escort patients to their room in order to

show people where to go and strengthen the doctor-patient relationship

2.158 For face-to-face communication, Dr. Clarke recommends that service providers ensure that:

everyone who has contact with patients or strategic responsibility for service provision receives disability equality training

disability equality training provided by health service organisations has accreditation from a reputable body, run and controlled by Disabled People

other appropriate methods of education are used, including posters and displays, items in regularly circulated newsletters, videotape material, integration with induction training, and periods of disability equality training during other training programmes

there is a dedicated sign language interpretation service that ensures that interpreters are readily available for appointments and emergencies

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sign language interpreters are at least of level 3 registered trainee standard

services that require confidentiality, such as counselling, have trained workers who can sign to a high standard

Deaf People who have sign language as a first or preferred language are recruited proactively and trained by primary health care service providers, to increase its number of workers who sign

everyone who has contact with patients learns at least basic Sign Supported English

2.159 DCIL [61] recommends that people's own names are used in the form they prefer - with no value judgement imposed when such a choice is made. No one should be referred to as if they are a condition, for example, "this one's a Spina Bifida" or "we've got a back coming in today!" They point out that the common use of such terms is only superficially innocuous: they form part of the many patterns of distancing which reinforce the controlling element of the health provider role. In turn they add to the process of power stripping of Disabled People.

2.160 DCIL reminds us that Disabled People and wheelchairs are NOT interchangeable. A person's wheelchair is intimate to posture, comfort, safety and identity. To remove it can produce an extreme sense of powerlessness, resentment and frustration.

2.161 DCIL points out that for Disabled People, undressing and dressing can be an extremely difficult, sometimes painful and often time-consuming process. Careful thought needs to be given as to whether routine procedures of this kind are really appropriate.

2.162 People should be able to take their own pressure relieving equipment or any other helpful aids, including familiar continence equipment. Personal regimes of pressure sore prevention and continence care have in many cases been painstakingly worked out by Disabled People over many years, and it is fundamental that these should be respected and adhered to by staff. The consequences of not working with the Disabled Person to her or his regime could have dire health consequences.

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2.163 Relatives who would normally care for Disabled People or for their children should be supported in providing the same care in hospital if they wish. This expertise is often wasted and dismissed by 'professionals'.

2.164 Finally, DCIL powerfully reminds readers that the needs and preferences of individuals should be valued. In certain areas of knowledge, Disabled People's understanding of their own bodies should be seen as, understood and accepted to be superior to that of medical staff.

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A Qualitative Consultation – Views & Voices of Disabled People from Tower Hamlets Interviewed as part of the consultation exercise.

3.1 This section presents a number of extracts taken from telephone interviews conducted with disabled people as part of the consultation exercise conducted for the PCT in preparation of their Disability Equality Scheme.

3.2 A total 20 disabled people were interviewed as part of this consultation exercise during November 2006. This consisted of 13 Females and 7 Males, aged between 18 and 74 and included people experiencing, Physical Impairments, Visual Impairments, Mental Health Issues, Head Injuries, Learning Difficulties and/or Chronic Illnesses; in many cases participants reported more than one of these impairments. The ethnicity of participants included Bengali, British, Caribbean, European, Somali & Turkish.

3.3 The 20 interviewees were selected by their response to publicity information distributed via the ‘dito’ mailing list which is made up of 400+ individuals and 200+ local community focused organisations. Participants were offered £15 in vouchers or cash for taking part in the interview.

3.4 Once participants had expressed interest and consent to take part in this exercise initial contact details were passed on to an interviewer who made contact and arranged a suitable time for the interviews to take place. The interviews were conducted via telephone and the conversations were recorded and transcribed. Where participants did not want the interview recorded summary notes were made. Details of the headings / script followed with all participants is presented in the appendices and included information concerning the purpose of the research in the context of the PCT, monitoring information, details of the THPCT services, questions concerning use and experience of them as disabled people as well as asking for suggestions about future service development in terms of the disability equality duty and scheme.

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3.5 The following section presents the voices/views that emerged and is organised in such away to maximise the manner in which consultation process values & listens to the voices/views expressed during the exercise. In this way, the extracts speak for themselves and must be read thoroughly rather than skimmed over and so readers of this paper are urged to take their time with it.

3.6 It is not presumed that this report be taken as completely reflective / representative of the experience of disabled people in Tower Hamlets which would be covered by DDA legislative framework. Indeed there are a number of impairment, ethnicity and other minority groups not represented, despite publicity being distributed across a range of groups and individuals. It can be however be taken as a snapshot of voices/views from local disabled people, who responded to publicity and contact regarding this exercise.

3.7 Interview Responses

3.8 The following extracts have been taken from the transcripts of the interviews as well as summary notes where recording was not permitted or unable to be transcribed. These have been organised under the headings of Access, Attitudes, Disability and Identity, Information, Service Use & Support.

3.9 The decision to present these particular extracts is made for the purpose of presenting recurrent themes. Although some of the extracts presented may not appear to relate specifically PCT services, they are presented as relevant and important to the experience of the disabled people interviewed as part of this exercise.

3.10 Following the presentation of the extracts a summary of the common themes emerging is made as final comment to conclude this section and add clarity & emphasis to the issues arising from this exercise.

3.11 Access

3.12 ‘…Yes, I mean some buildings don’t have a ramp. Although I’m walking disabled, a ramp is better for me because I use a trolley most of the time – or a walking stick. So I find a ramp easier if it’s not at ground floor level or level access. And buses can be difficult because

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they don’t always park near the curb. I mean, sometimes they can’t. Sometimes the floor can’t be lowered if it’s not working. So it can be difficult getting on and off the bus sometimes…’

3.13 ‘…because I’m indoors a lot of the time it’s not like I’m out and about having to deal with things in public, one thing when I’m out and about, having to get up and down curbs does drive me crazy….humps in the road. It might slow traffic up but some pavements you can’t go down so you have to go in the road, and I can’t get over them, that is something that really niggles me, I mean do we have to find things so difficult…’

3.14 ‘…there's been a few problems with people's attitudes, you know, like getting on the bus and I say "excuse me" to people and then they take the hump as if they've got the right to have sole, sole standing where my priority wheelchair place is…’

3.15 ‘Access to regular smear and other tests relating to women’s health. These tests usually require women to be relaxed. Examination couches at these services are often not adjustable and are therefore inaccessible to some disabled women. How can they expect a disabled woman to be relaxed in that situation?’ (fm summary notes)

3.16 of improving access to services,

3.17 ‘…They do have lots of little one-off groups but things don’t change. There needs to be an independent long-term planning group, employing people (more than 1, say 2 or 3 disabled people) to make sure/monitor that the PCT action plan is implemented. It is evident that the PCT think disability = wheelchair user. Seems they have almost accepted that things can be accessible for wheelchair users but it doesn’t go further than that. People don’t just have to be told to do things to improve access to services, they need to understand why they are doing it…’

3.18 ‘…When people are designing buildings for wheelchair users, they have to remember no wheelchairs are the same size. You don’t get an average size. They have to remember that no two people are the same. All wheelchairs are adjusted to suit the person. I think that a

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disabled person should help design the buildings, it’s costing us more money because it has to be altered again…’of social and physical accessibility,

3.19 ‘… I’d like to see more proactive work done on accessibility. When I say accessibility, I mean physical accessibility and social accessibility. And open up more places for Disabled People to interact properly. One thing that comes to mind – and this is something that I’d be interested in – when I was at a workshop somebody with learning difficulties said “I’d like to make friends. I’d like to be able to go to places in the evenings.” I sat and thought about that. I thought ‘That’s so blindingly obvious. Why are there no centres in the evening? Why is it assumed that people who’ve got disabilities, especially learning difficulties and that: “let them out during the day” – they are still people’ They still have to from relationships and friendships, but where can you do that in a safe environment? There isn’t anywhere, is there?..’

3.20 of isolation,

3.21 ‘…Well I’ve found myself since I’ve gotten this way that I’ve found myself becoming more and more of a loner along with everything else. My friends are people I worked with have all disappeared. I don’t get any contact with people and have to stay indoors…’

3.22 of visibility,

3.23 ‘…I'm all right with places I know, but when I go to strange places I have to keep asking people.  I either get off at the wrong stop and I'm not able to read signs. sometimes its a bit frightening crossing roads, that terrifies me. I avoid places where I've got to cross a main road…’

3.24 Attitudes

3.25 ‘…People should be trained in to behave toward people with impairment. Be more considerate and understanding towards disabled people which includes people in a wheelchair (such as, me)…’

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3.26 ‘…I walk with a stick and people do talk to you like you stupid. You know, and start explaining things very slowly to you, you know, without you prompting them. That’s actually really difficult to deal with because it immediately flags up an attitude from that person. The attitude issue is the one that’s really hard to shift. That’s the one you encounter a lot. Someone’s kind of pre-judged what that means instead of listening to you as a Disabled Person – saying what you need or let you define yourself, you suddenly get slotted into a category. That happens just generally out in the community. But it happens a lot when you try and get access to services, etc. If you’re on the phone, as soon as you say that you’re disabled, people go into like ‘disabled speak mode’ and stop relating to you as a human being and treat you as a condition or case. It’s really sad actually. I don’t like it. That’s particularly true when you go into hospitals. You just become a condition, but you’re also a person as well and that kind of gets forgotten about. They are the kinds of places you’d expect people to be a bit more sussed about disability, but often the attitudes are the worst…’

3.27 ‘…I often get the impression that people are so pressured that they just kind of get through everything really quickly and sometimes that’s not the best way to deal with it. It’s not just a case of attitudes and stuff. I think those attitudes come out when people don’t have the time to think on things a bit more…’

3.28 ‘…peoples attitudes well people can be very aggressive because I mean like if you have a visual impairment they have a habit of pointing and then you cant see where they’re pointing to so like not all the people not all of them but some people have a very bad attitude but not all of them…’

3.29 ‘…Well yes, just because they look at me and assume I’m OK. And then when I can’t do something, they look surprised. Sometimes I see it in their face. Maybe they’re thinking well I aught to be able to… but I can’t… hold things of more than a certain weight, for instance...’

3.30 ‘…Sometimes bad attitudes [are barriers to using services]. [People], wont have time to listen to what I have to say, I have a speech difficulty. [They are] not very considerate, especially [to] people in a wheelchair…’

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3.31 Disability and Identity

3.32 ‘…Disability is such a wide spectrum of different things. Every person’s got a different combination of physical, mental, whatever. I think it’s really dangerous to group people together. I am disabled, but I couldn’t say what life is like for somebody who has got some sort of visual impairment…’

3.33 ‘… I: Do you consider yourself to be a disabled person? R: No, I’m just someone who can’t walk. When people look at me they see the wheel chair, they think that I can’t walk. You could say I had a disability but I wouldn’t say I was disabled…’

3.34 ‘…Well sometimes they can’t really see you, they can’t see that you’re blind or that you can’t see out of one eye. You know sometimes when you accidentally bump into somebody and they say “look she can’t even look where she’s going” and that’s because they don’t know if you’re visually impaired…’

3.35 ‘…I'm a bit of a… if there's a will there's a way. When my legs got… like when I had my hip replacement, you know, I thought 'how am I going to manage' because I've got 16 stairs in my house. It's amazing – you do manage, you do find a way. You crawl down the stairs or you just find a way, but that's just my attitude…’

3.36 ‘…Put it this way: it used to be because I've been disabled… I got arthritis when I was 19 and I'm nearly 50 and even though it's got worse as I've got older, it's got better if that makes sense because I've learned to deal with it and also to deal with other people and now I'm like really positive about being a disabled person so I sort of put that onto other people…’

3.37 Information

3.38 ‘…Well they could put it on large print and tape because obviously not a lot of people use Braille now and a lot of people have e-mail addresses which I don’t if like they could put it on large print or tape…’

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3.39 ‘…I don't really know what services are out there to be honest with you…’

3.40 ‘…You get some information about what you can do personally and they tell you it is possible for you to go and see somebody but they don’t tell you how you can get there…’

3.41 ‘…they could keep leaflets in places that disabled people go to…’

3.42 ‘…The PCT needs to produce more information about its services that is easy to find and get hold of. More flexibility is needed in terms of services…’

3.43 Of language barriers,

3.44 ‘…I was born partially sighted and because I didn’t have much treatment because I came to this country when I was 7 and I couldn’t speak English, then when I could speak English and I could understand what was going in through my eyes that’s when you know my eyes were already damaged. My daughter has the same problem and I’m doing some treatment on her now and I do understand what’s going on in her eyes now, but because I’d already damaged caused to my eyes and I didn’t know what was going on to my eyes because of the pressure in my eyes, it keeps going up and down it doesn’t stay in one place. For example 7 or 8 drops I have to use daily to keep my pressure down. I’ve had surgery done to my right one and to the left one but the left one is already damaged anyway…’

3.45 ‘Although the PCT have an interpretation service it is not 24 hour so for women whose first language isn’t English, who go in to labour in the middle of the night or at other times, sometimes interpreters aren’t available. It is not acceptable that these women should time their labour for when the interpretation service is not available’ (fm summary notes)

3.46 Service Use

3.47 generally,

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3.48 ‘…Obviously you get good service and bad service. It just really depends on if you're lucky on the day. That's how I feel. You know. So … until I find out exactly what's going on, or if, you know, so, [my counsellor] does tell me that I should speak up for myself…’

3.49 ‘…No. Id say that the actual Health Service has been quite… I’ve had the run around over the last couple of years, you know. I've been going round in circles sort of thing if you know what I mean ... You know, as in with the hospitals and the consultants. That's been quite an on-going problem. But it took nearly five years to… They diagnosed me quite early … You know I got diagnosed quite quickly but the actual treatment and what was available took quite along time to access. Finding out what could be done for me…Yeah, so only a couple of weeks ago I found out my spine cannot be operated on. So… which was quite a knock-back to me. I sort of had quite high hopes that… improving my health by that side of it, you know, so yes that was a bit of a let-down after all these years…’

3.50 ‘…[the NHS/PCT should] be aware when people go into hospital of not actually making judgements straight away on what the disability is. You’ve got to look further than that. Like, if someone has a headache, you don’t say to them “How ‘s your disability headache?” I think there should be more emphasis on sort of not what they see at the beginning, but going further into it, if you know what I mean…’

3.51 of appointments,

3.52 ‘…I mean we all know that there's like these appointment lists and long… you know and it takes time, but like, for instance, I see a doctor – a consultant in January and he asks me to be seen by another department and I'm still waiting. I haven't even had a letter yet…’

3.53 ‘…If you have an for say 2 o'clock in the afternoon, you'll be lucky if you're seen by 4 o'clock, you know…’

3.54 of hospitals,

3.55 ‘…I was in hospital for about 2 months. I went in there for something completely different – apart from my disability and he kept focussing

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on my disability rather than what was wrong with me at the time and it was completely unconnected… the disability was completely unconnected to what I was in there for. And that’s what the problem was…’

3.56 ‘Accident and emergency departments, where people go when they are not feeling their best, often do not have these adjustable couches either. The last thing one feels able to do in that situation, when you may be in a lot of pain, is to climb up on to a high couch’ (fm summary notes)

3.57 of GP’s,

3.58 ‘… My GP is fantastic the surgery is crap. When I was in a wheelchair there is a bump at the entrance and I lost control of my chair. I grabbed the wheelchair and I collapsed. Some nice person decided to steal my purse. I think that’s wrong. When I found out I went ballistic, I couldn’t believe it. I just picked up money to go shopping with … The counter in the surgery. When I’m sitting down they can’t see me, I have to shout! They know me. I have to stand up out of the chair but that bloody hurts. Even when I spoke to the manager, he said its for safety, I said what about people who can’t see. What about if I couldn’t get up I said … He said that the counter’s got to be high for security. I don’t like no one looking down at me, I feel small. You can’t do nothing. You feel two foot small. I’m lucky enough I can get out … but I think something should be done if something like that happens to someone else and they get their stuff stolen, I’d fight tooth and nail for this, it wasn’t my fault it was the doctors surgery’s fault. If I was old I wouldn’t be able to contact anyone, I would have had nothing, and everyone needs their money, its still wrong. I: Did you get an apology? Yeah but what’s sorry when you’ve had your wallet stolen? I really missed my mobile phone, everything’s on your phone…’

3.59 ‘There’s…difficulty with getting appointments at the GP and not having regular check-ups with the consultant as well as just simply not getting information about what's out there. (fm summary notes).

3.60 ‘…Because I’m disabled now, there are times when I need to phone my doctor and just leave a message for her. I might have to have

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paperwork put in connected with DLA or whatever. I don’t need to make an appointment and tie up her time, but I do need to contact her just to let her know something. I’ll phone up and I’ll get asked a ton of questions. I’ll always explain “look, I don’t need an appointment, but I do need to speak to her about *this* when she’s free. Can I just leave a message?” A few times when I’ve had to do that, on in particular that I was really upset about… the girl who took the message got it completely wrong. She pulled my GP out of an important meeting, totally unnecessarily. That was just ridiculous. It’s those sorts of things – or if I phoned up and asked for a repeat prescription, they just get it all upside down and then I’ve got to do three or four more tings to right the mistake that was made. That surgery never used to be like that. If you dare to complain or query something, God help you. The practice manager is like a rottweiler. That I find really worrying because it’s a shame when the GPs have been very supportive – and my GP has. My GP’s been a real anchor when I’ve gone from being able-bodied to disabled. It’s such a shame that the practice management doesn’t follow that…’

3.61 ‘…I’ve changed GP because [bad experiences]. I did have one that …[suggested]… that I was costing them too much for my medication…’

3.62 ‘…I'm not really satisfied with him… with the doctor's surgery because every time I ring up - they tell me that I've got to ring up at 8 o'clock in the morning - and every time I ring up I can never get them. They never answer the phone. And that's very rude. And when they do answer, they're full up…’

3.63 ‘…Well for example if I go on my own I told them look I can’t see the screen and then when my name comes up then they called me and told me which room to go in sometimes it depends on who is sitting on the reception sometimes they can be friendly and sometimes they can’t. For example you know every month when I need my medicine which is like diabetic medicine and eye drops I need to get sometimes they tell me to write on the paper but I said no because I’m partially sighted I can’t write on the paper you know the prescription you know you have to put that into the computer and they give me the reply slip and I said no and I went on and they said that’s not the law we can’t do that for you someone has to write it for you

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and you have to put it in the box yourself but I said every month I change my eye drops. You know they put it on the computer and the system has changed you have to look under eye drops and sometimes you know they give me the wrong eye drops even if they write on the computer they give me the wrong eye drops. I have to keep running to the surgery and to the chemist so it’s like you know those are the things I find difficult in the surgery…’

3.64 Of dental services,

3.65 ‘…I would like to see a dental service for people with disabilities that’s very proactive about keeping people’s teeth in good condition and making people look the best. That’s another thing that Disabled People don’t have access to. Everybody else is meant to take pride in their appearance, but there’s no encouragement for people with disabilities to be like that. I don’t see why the dental services seem really negative. You know, it doesn’t matter. “Let’s pull this tooth out now.” And I hate that. It just ostracises you a bit more…’

3.66 ‘…Well I have got a dentist, but he can't… he's refused to… not in a nasty way, but he's told me that he can't deal with me any more because the arthritis in my neck's got a lot worse so the last time I went there, which was about 2 years ago, I wasn't able to open my mouth to get the things in, you know and he said that he can't chance trying to force my mouth open, so he's asked me to go to Whitechapel Dental Hospital, and to be honest I was horrified and I said to him there's no way I'm going there. I know everyone's going to learn – it's a teaching hospital –but it just terrified me because he said I would have to be put under. Now, when I've had surgery before, they told me that if I ever have to go under, I have to make sure that I explain to them about my neck, because when they stuck the pin in my leg […] after they gave me the gas stuff, I could feel it. I was like "Ouch! What're you bloody doing, like?" And they said because of my neck, it doesn't go back enough - the stuff to knock me out wasn't working, so therefore my argument to the dentist is: they're sending me to Whitechapel, they want to put me under, that means they're going to force my neck back, so I'm worried that they're going to damage me and then afterwards everyone's going to say "well it was an accident". Because my neck has got a lot worse and it cannot go

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back, so I haven't been for two years, because I'm actually scared and I don't want to be put under…’

3.67 Of the physiotherapy service,

3.68 ‘…I used [it] for my arthritis. That was useful. They showed me how exercises could actually help to improve the movement in my joints. Not that I’ve been able to keep it up, really. Which is a shame, but it was a good service…’

3.69 Support

3.70 ‘…I think the only that could be done is to make things a general standard across the board. Because it’s what I hear from disabled people that I mix with and I’m lucky that my wife’s been there to keep an eye and remember things for me. A lot of my disabled friends especially those who are on their own do find it difficult. In many ways they could do with just keeping an eye on the person…’

3.71 ‘…I think they should take more care in what… they should prepare for people who have become disabled and, you know, they should have a better looking after period, you know what I mean? Better care for them. Because the care system at the moment I think is absolutely horrendous…’

3.72 ‘…I've sort of been left to defend myself really. You know if it hadn't been for my friends and my girlfriend, you know, I mean I don't know where I'd be I might be 6 feet under. You know because if it hadn't been for their support my depression would have just (???) me and that would have been it…’

3.73 ‘…I need someone with me all the time. Because now when I go out I can’t see the lamp especially in the dark I don’t go out because I can’t see in dark they tell me its all right but I need someone because I can’t see the lamp posts and the traffic lights and that because I’m trying to get mobility training now because I’m losing my eyesight and they say I won’t last long too long but I will lost it soon. That’s why I’m trying to get some mobility training for outside…’

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3.74 ‘…I have 3 children and they’re all under 16. They’re 8,10 and 12. I’m widowed. I lost my husband 7 years ago and when I went in for things like the operation I came out and the hospital said to me that I’m not to go out for 2 or 3 weeks for the eye to settle down and they put me in contact with my social worker who put me through to people I wanted someone, I needed someone to take my children to school and bring them back again and they could only provide it for 7 days so I was a bit upset with that service, because I only needed it because I’d had the operation and my children were even younger then. You know what children are like you don’t want them to go down where the main road is. Unfortunately they did provide it, but for only 7 days…’

3.75 ‘…I've been registered blind and I've been on low rate disability, like, I'm trying to get on a higher rate of disability because they say I'm able to brush my teeth, I can't claim the higher rate or the middle rate.  Which I don't think is fair, because I'm disabled - if I wasn't blind, I'd go to work. They don't seem to think of it…’

3.76 Summary of emerging themes

3.77 In line with the manner in which the above extracts were presented and organised a brief summary of the emerging themes follows.

3.78 Access - Many of the concerns raised not only related to the inaccessibility of the physical and/or built environment but also to the frustration and restriction this causes individuals. This is attributed to both inconsideration of design and a reluctance of administrative and management structures understanding accessibility arrangements.

3.79 Attitudes - Negative attitudes on the basis of disability are wide ranging and variable. Consistently, the disabled people interviewed as part of this exercise reported inherent negativity, isolation, prejudice and misunderstanding in reactions directed towards them on the basis of their disability. There are several issues that arise regarding disability equality that may improve awareness and understanding. These include a commitment to eradiating discrimination and improvements in services and resources.

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3.80 Disability and Identity - The identification of disability is a critical and changing issue and the promotion of its equality is one that surely requires an evidence and research focused approach to ensure quality service delivery and inclusion. As can be seen in the extracts above, self identification can be problematic and issues concerning one impairment grouping may be very different for other. Indeed, many disabled people will have dual or multiple access needs, but many not readily articulate them.

3.81 Information – Participants in this exercise raised serious issues concerning both the lack of, and commitment to providing information. A very strong theme emerges about how disabled people access information about services and several participants reported not knowing about many of the PCT services, despite being involved in other services, i.e. GP’s, Day Centres etc. This related to also people with diabetes who did not have information about chiropody services. Also, the accessibility of information is questioned. Vvisual prompts (e.g. screens) in GP surgery and hospital/other clinics (e.g. where patients take ticket and wait for their number to appear on a screen) were not accessible. Accessible methods where prompts should be oral would reduce barriers.

3.82 Service Use – The participant’s responses to this exercise were variable in terms of PCT service use. Whilst acknowledging some satisfaction in many service areas, i.e. GP’s there was also a sense that this may not be as a result of access needs being met or indeed reflective of the whole service. Concerns were raised about both the physical design as well as service accessibility, i.e. sole use of visual prompts where people with visual impairments, inaccessible couches, reluctance to issue repeat prescriptions, or do home visits etc. All of which are matters of accessibility for people who may need such accommodation for their impairment specific needs. Other responses raise concerns about the focus by services upon the person’s impairment rather than the (health) issue.

3.83 Support - Support required by disabled people is variable to both individual, environmental, context and impairment specific circumstance. This requires flexible and creative approaches beyond the design of existing provisions. Improvements in the quality of support work currently offered and a greater publicity of available

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resources may address some of the concerns raised by respondents to this consultation exercise. The organisation of community support services to assist with independent living and family life was raised as crucial at times following operations or intervention. There were also a number of issues raised about participants experiencing isolation as a result of their impairment possibly attributing to depression and changes in mental health.

3.84 Other relevant issues – There were also issues raised concerning Black & Minority Ethnic PCT service users that reported difficulties with language support & cultural sensitivity, both in direct service use and information material. These often resulted in individuals not using services, and thus the associated health inequalities.

3.85 Concluding Remarks - Although the participants included in the current consultation exercise can not be considered as completely representative of the wider population of disabled people or people with impairments in Tower Hamlets they can be taken as a snapshot of views and voices expressed in response to this consultation. The issue of disability equality and discrimination is vast and wide ranging and requires ongoing and long term consideration and commitment. Many of The issues raised during the current consultation assert the need for action that will ensure anti-discrimination measurers are developed and maintained.

3.86 As has been mentioned in part, there are limitations of current consultation exercise and so it is important to stress the need for future & further research programmes and consultation exercises driven by, not for disabled people. The approach to this current research / consultation exercise is largely qualitative and thus not to be considered statistically representative and so does not include or cover many issues that may require inclusion and action. Indeed, the current document and the work undertaken for its production has been completed in a very short space of time and does not include the broad range of impairment groups the Disability Equality Duty will cover or indeed the whole of the PCT services.

3.87 As a result a concluding recommendation asserts the need for further research, information & knowledge collation, engagement and capacity building of the local disability community so as they, as best

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placed as they are, to contribute and influence a disability equality agenda that will ensure the active and equal participation of disabled people in all aspects of life and thus satisfaction with PCT service use.

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Conclusions

4.1 In its parallel report to this one, produced for LBTH [62] DITO drew conclusions based upon the evidence contained in that report, which were designed to guide the Borough Council in its implementation of the DED [63]. A similar process has been undertaken for this report, but in addition, the conclusions reached in DITO’s report for LBTH have been referenced by the authors of this document, to ensure that maximum compatibility exists between the proposals made to the PCT and those made to the Council.

4.2 PCT Service planning processes should be informed at the highest level by an understanding of and commitment to removing the institutional, social, economic, environmental and behavioural barriers facing Disabled People in Tower Hamlets, identified in this report. The PCT needs to aspire to developing services which are premised on respect, operating efficiently with other agencies to promote ‘Independence, Wellbeing and Choice’ [64] by piloting ‘individual budgets’ in partnership with LBTH social services. By this means, the PCT can work towards its stated aim of establishing ‘seamless services’, thereby ensuring as little disruption as possible is caused to the lives of those using them.

4.3 Develop consistent mechanisms and a regular updating process for conducting and acting upon the findings of access and disability equality audits of all PCT service areas. These audits need to take fully into account broad issues to ensure that health inequalities are being tackled. These issues include: Trust policy, practice and procedure, service planning, capital works, user involvement, individual behaviour patterns of staff, implementation of reasonable adjustments, communication – including the use of plain language, complaint monitoring, human and other resource management issues – including the provision of staff disability equality training, the employment and career development of Disabled Staff and the commissioning of relevant targeted research, thorough exploration of the ethnicity, gender, age, impairment and other characteristics of those receiving services.

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4.4 Disabled People need timely information about and continuing monitoring of their health needs, both as individuals and as a community. Research and surveying of the profile of ‘disability’ and ‘Disabled People’ in Tower Hamlets based on a social model approach is needed to provide a baseline against which monitoring of the PCT’s DES can be related.

4.5 As part of a commitment to developing sustainable partnerships with local user-led organisations, the PCT should support and nurture the creation of a local independent ‘disability equality’ research forum with a broad membership, seeking proactively to conduct action research, influencing PCT practice (as a ‘critical friend’) gathering information and knowledge to inform and direct future research activity and related initiatives, linked to supporting the Trust in complying with its duties under the DED.

4.6 PCT consultation processes should be developed, regularly reviewed and tested to ensure that they are sufficiently robust to support meaningful consultation with and involvement of Disabled People. The Trust should ensure that Disabled People are represented in consultation on a range of subjects and service areas and not just on impairment specific groups or ones relating solely to the ‘disability agenda’. The Trust should also consider conducting consumer market research to identify the health needs and priorities of the Borough’s diverse disabled population.

4.7 The PCT should take steps to build partnerships which support improvements to the provision of accessible information in terms of material production in a range of formats and languages, supporting and paying attention to the need to address other issues of communication. These partnerships should concentrate on the capacity building of ‘specialist services’, which can guarantee the prompt, high quality and cost effective production of materials which meet the range of access and information needs amongst the Borough’s disabled community.

4.8 Through the development of service level agreements (SLAs) and other suitable contractual arrangements for the provision of disability equality training, consultancy and independently organised consultation, advice, research, transcription and other ‘expert

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services’, the Trust should play a pivotal role in supporting the nurturing of long-term partnerships with user-led organisations in the Borough’s voluntary sector. This direct and mutually beneficial Trust support for capacity building of local user-led and controlled community organisations will bare dividends for the PCT, ensuring that it has on-hand support to identify and tackle the stubborn barriers which perpetuate health inequalities amongst Disabled People.

4.9 The PCT needs to commit itself to the ongoing collation of information about disability discrimination incidents by way of drawing together existing data, i.e. complaints, DDA cases, and by developing an open reporting structure so as to promote the gathering of high quality intelligence and data set information.

4.10 The PCT could play a key role in supporting the production of disability equality education & information material, detailing local resources and disseminating to users of Trust services tailored information to enhance their personal independence and choices.

4.11 The PCT should ensure that it perpetuates and promotes a welcoming culture for Disabled Staff and service users. Part of doing this will occur through the creation of environments which meet the needs of Disabled People and set out proactively to tackle health inequalities. To achieve this, it will be necessary to ensure that barriers to services as well as to promotion for Disabled Staff and complaints of discrimination or harassment, either from staff or customers, are taken seriously, monitored, handled promptly and where it is found that a complaint is justified, remedied robustly. This will include being open and honest about mistakes, apologising, learning from and changing bad practice, not tolerating harassment or discrimination in service provision or in the workplace.

4.12 The PCT should make sure that its Disabled Staff and all managers are made aware of Access to Work (ATW) [65] and strong effective partnerships should be developed between ATW staff and those responsible for Human Resource Management (HRM). Gone are the days when this should be seen as a specialist or separate function or consigned to just one or two designated members of Human Resources (HR) staff. All frontline, practitioner and managerial staff should also be empowered to make ‘reasonable adjustments’ for

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customers where the need to do so is known or anticipated. This should be a proactive rather than a reactive process, as is required by the anticipatory duty in Part III of the DDA and the DED in Part V of the Act [66].

4.13 The PCT has a duty under Part V of the DDA [67] to ensure that services provided by contractors on its behalf or which it has commissioned, be they delivered by commercial or voluntary organisations, comply with all relevant requirements of the DDA. In particular, the Trust should note that such providers are deemed in law to be “standing in the shoes of Government” by dint of the fact that the Trust has contracted them to deliver services on its behalf. Submission of Access and Disability Equality Statements by such organisations, which will by virtue of their contractual relationship with the Trust acquire the status of ‘public authorities’, is mandatory and should become an obligatory part of the contracting process. This will ensure health inequalities and discrimination against Disabled People is tackled, as well as protecting both the Trust and contractors from complaints or possible investigations under the DDA or the DRC Act [68].

4.14 The Trust should review its recruitment and retention strategies with a view to planning and implementing strategic positive action to retain and increase the representation and representativeness of the Disabled People it employs, in terms of the overall number, their distribution across the workforce and the diversity of their gender/ethnicity/age profile.

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Strategic Recommendations

5.1 Below are summary recommendations for the PCT to consider. They are inspired by the key findings from the research conducted for this report and propose high level action to tackle the enduring health inequalities experienced by Disabled People. In particular, they draw upon and broaden the accessible information strategy produced for the Liverpool Central PCT [69] information for health professionals provided by DCIL [70] and the advice to PCTs from the DRC concerning improving access to primary health care for people with learning difficulties and those with a mental health label [71].

5.2 The strategic recommendations are:

5.3 Create a strategic lead in the Trust’s organisational objectives to prioritise reducing health inequalities experienced by Disabled People.

5.4 Use the Disability Equality Duty (DED) as the major framework to work towards more equal outcomes, through evidence gathering, impact assessments and involving Disabled People.

5.5 Analyse the physical health needs, experiences and views of Disabled People in Tower Hamlets area as part of the local strategic assessment of need. Use this data directly to commission services to close gaps of inequality.

5.6 Identify groups who may need outreach or new service models to ensure they get primary care to at least the same standard required for everyone. For instance, people in residential care, inpatient psychiatric units and long stay hospital provision need to receive primary care to Quality and Outcomes Framework standards.

5.7 Build robust disability access and quality standards into all contracts with providers in the public, private and voluntary sectors.

5.8 Track progress by monitoring cross-impairment trends in morbidity, survival rates, diagnosis, condition management and patient experience amongst Disabled People.

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5.9 Monitor the quality of health checks carried out for Disabled People.

5.10 Provide incentives, for instance through a Local Enhanced Service, to ensure regular health checks are provided for people with learning difficulties and others who are at present under-represented, in terms of their unequal access to health checks.

5.11 Identify people who have been removed from GPs' lists or have found difficulty registering, in order to spot and rectify any discrimination due to someone’s impairment label.

5.12 Ensure all people with learning difficulties receive a Health Action Plan and that people on the Care Programme Approach receive a physical health check as part of their care plan.

5.13 Ensure that the direct experience of representative disabled service users, who are accountable back to their own organisations, whilst remaining independent of the Trust, becomes a valued, integral and embedded part of the PCT’s structure, with proper status and adequate resources.

5.14 Ensure that user-led advocacy organisations receive sustained strategic funding and support from the PCT, with advocates for Disabled People trained and available to anyone who wants assistance to represent themselves at case conferences and other meetings with Trust staff. Advocates should be drawn from a wide variety of people to ensure that appropriate race and gender representation can be offered.

5.15 Commission a long-term rolling program of disability equality training delivered by Disabled People who are professional disability equality trainers. This should include ‘specialist training’ for targeted staff in areas such as Sign Supported English (SSE) and British Sign Language (BSL).

5.16 Ensure that Sufficient predicated central funding is earmarked to support Trust services needing to make ‘reasonable adjustments’. A register of any adjustments funded via this means should be kept as

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part of the Trust’s monitoring of its compliance with the DED and in order to spread ‘good practice’ across the organisation.

5.17 Develop a Communications Policy and Guidance, incorporating consistent use of signage, plain English, document formatting and transcription. Adherence to it should be monitored centrally to ensure its effective application by all Trust services and contractors.

5.18 Review, update and monitor the impact of the Trust’s HRM policy with a view to introducing measures designed to increase the presence of a representative cross-section of Disabled People throughout the workforce.

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Acronyms used in this report

6.1 ASR - Age Standardised RatesATW - Access to WorkBL - Big LotteryBMI - Body Mass IndexBSL - British Sign LanguageCHD - Coronary Heart DiseaseCOPD - Chronic Obstructive Pulmonary DiseaseDCDP - Derbyshire Coalition of Disabled PeopleDCIL - Derbyshire Coalition for Inclusive LivingDDA - Disability Discrimination ActDED - Disability Equality DutyDES - Disability Equality SchemeDITO - Disability Information Training OpportunityDRC - Disability Rights CommissionDWP - Department for Work and PensionsESRC - The Economic and Social Research CouncilFACS - Families and Children StudyGDP - Gross Domestic ProductGHS - General Household SurveyGLA - Greater London AuthorityGSM - Grams per Square MetreHDS - Health and Disability SurveyHR - Human ResourcesHRM - Human Resource ManagementIB - Incapacity BenefitICF - International Classification of FunctioningICT - Information Communication TechnologyJRF - Joseph Rowntree FoundationLBTH - London Borough of Tower HamletsLLTI - Limiting Long-Term IllnessNHS - National Health ServiceNS-SEC - National Statistics Socio-economic ClassificationONS - Office for National StatisticsPCT - Primary Care TrustPDF - Portable Document FormatPFI - Private Finance InitiativesPSA - Public Service Agreement

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R&D - Research and DevelopmentSEN - Special Educational NeedSLA - Service Level AgreementSSE - Sign Supported English

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References

1. The Disability Discrimination Act (1995)www.opsi.gov.uk/acts/acts 1995 / 1995 050.htm

2. The Disability Discrimination Act (2005)www.opsi.gov.uk/ACTS/acts 2005 / 2005 0013.htm

3. ibid

4. Department of Health, A Programme for Action: Tackling Health Inequalities, (2003)http://www.dh.gov.uk/assetRoot/04/01/93/62/04019362.pdf

5. ibid

6. British Council of Disabled People, The social model of disability and emancipatory disability research, (2003)http://www.bcodp.org.uk/about/research.shtml

7. British Council of Disabled People, About BCODP, (2003)http://www.bcodp.org.uk/about/index.shtml

8. ibid

9. British Council of Disabled People, The social model of disability and emancipatory research, op cit

10. The Disability Discrimination Act (1995), op cit

11. Rieser, R. Medical Model / Social Model, Disability Equality in Educationhttp://www.diseed.org.uk/Medical_Social_Model.htm

12. Disabled Peoples’ International, Position Paper on Definition of Disabilitywww.dpi.org/en/resources/pdfs/03-04-08-definition_dis.pdf

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13. Disability Rights Commission, Equal Treatment: Closing the Gap – Abstract, (2006)http://www.drc-gb.org/newsroom/health_investigation.aspx

14. Disability Rights Commission, Equal Treatment: Closing the Gap – Advice to PCTs, (2006)www.drc-gb.org/Docs/PCT_SummaryHEALTH5.doc

15. The Prime Minister’s Strategy Unit, The Department for Work and Pensions, The Department of Health, The Department for Education and Skills, The Office of the Deputy Prime Minister, Improving the life chances of Disabled People, (2005)http://www.strategy.gov.uk/work_areas/disability/

16. Derbyshire Coalition of Disabled People, Patient Empowerment, (1992)www.leeds.ac.uk/disability-studies/archiveuk/Derbyshire%20CIL/patients.pdf

17. lee Hodgkins, S. At any time. Including Disabled: The Disability Equality Duty, Tower Hamlets and Disabled People, Disability Information Training Opportunity, (2006)

18. The Disability Discrimination Act (1995), op cit

19. The Disability Discrimination Act (2005) op cit

20. Roberts, Ivaldi, Magadi, Phung and Stafford, The public sector and equality for Disabled People, Research Report no. 343, The Department for Work and Pensions, (2006)www.dwp.gov.uk/asd/asd5/rports2005-2006/rrep343.pdf

21. Office for National Statistics, Census 2001 - Health, disability and provision of carehttp://www.statistics.gov.uk/census2001/profiles/commentaries/health.asp

22. Economic and Social Research Council, Disability in the UKhttp://www.esrcsocietytoday.ac.uk/ESRCInfoCentre/facts/UK/index42.aspx?ComponentId=12640&SourcePageId=14975

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23. Office for National Statistics, Living in Britain 2001 – General

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24. Bridgwood, A. People aged 65 and over, Office for National Statistics, (2000)http://www.statistics.gov.uk/downloads/theme_social/GHS_People_65_&_over_v2.pdf

25. Secretary of State for Health, Our healthier nation, (1998)http://www.archive.official-documents.co.uk/document/doh/ohnation/ohncont.htm

26. lee Hodgkins, S. At any time. Including Disabled, op cit

27. Information Centre, The, Community Care Statistics 2006: Supported Residents (Adults) England, (2006)http://www.ic.nhs.uk/pubs/ccs06suppres/ccsadultreport/file

28. Department of Health, A Programme for Action op cit

29. Crosby and Jackson,The seven needs and the social model of disability, Derbyshire Coalition for Inclusive Living, (1988 (revised 2000))http://www.dcil.org.uk/Papers/7Needs.htm

30. Richard Berthoud, The Employment Rates of Disabled People, Research Report no. 298, Department for Work and Pensions, (2006)http://www.dwp.gov.uk/asd/asd5/rports2005-2006/rrep298.pdf

31. Department of Social Security, Family Resources Survey 1996-97, (1999)http://www.data-archive.ac.uk/findingData/snDescription.asp?sn=3957

32. Office for National Statistics, Disability: More boys than girls with disability, (2004)http://www.statistics.gov.uk/CCI/nugget.asp?ID=795&Pos=2&ColRank=2&Rank=1000

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33. Willitts, Anderson, Tait and Williams, Children in Britain: Findings from the 2003 Families and Children Study (FACS), Research Report no. 206, Department for Work and Pensions, (2004)http://www.dwp.gov.uk/asd/asd5/rports2003-2004/rrep206.asp

34. Office for National Statistics, Prevalence of mental disorders among children: by gross weekly household income and age of child, Social Trends 3, (1999)http://www.statistics.gov.uk/StatBase/ssdataset.asp?vlnk=3532&Pos=&ColRank=2&Rank=272

35. Office for National Statistics, Mental Health: Mental disorders more common in boys, (2004)http://www.statistics.gov.uk/CCI/nugget.asp?ID=853&Pos=&ColRank=2&Rank=224

36. ibid

37. Disability Rights Commission, Equal Treatment: Closing the Gap – Part 1, (2006)www.drc-gb.org/ Do cs/mainrepor t word_heal t hfi1. do c

38. Disability Rights Commission, Equal Treatment: Closing the Gap – Advice to PCTs, op cit

39. Information Centre, The, National audit highlights regional variations in undiagnosed diabetes, (2006)http://www.ic.nhs.uk/news/press/pr190906b

40. Information Centre, The, People Registered as Blind and Partially Sighted (Triennial) 2006 England, (2006)http://www.ic.nhs.uk/pubs/blindeng06

41. Piggott, G. 2001 Census: Health by ethnic group, religion and country of birth, Greater London Authority Data Management and Analysis Group, (2006)www.london.gov.uk/gla/publications/factsandfigures/dmag-briefing-2006-3.rtf

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42. The University of Sheffield, The University of Essex and Social Action for Health, Living with long-term illness: the experiences of sufferers & their families in East London, (2005)http://long-term-illness.group.shef.ac.uk/preliminaryfindings1.pdf

43. Community Health Sciences Research Group, Systematic reviews of access to and uptake of health services by ethnic groups, (2001)www.ihse.qmul.ac.uk/chs/research/gppc/Download%20Report/ethnicity_accessreview.pdf

44. Silveira, E. and Allebeck, P. Migration, ageing and mental health: an ethnographic study on perceptions of life satisfaction, anxiety and depression in older Somali men in east London, International Journal of Social Welfare, Volume 10, Issue 4, pp. 309-320, Blackwell Synergy, (2001)http://www.blackwell-synergy.com/doi/abs/10.1111/1468-2397.00188

45. Department for Work and Pensions, Incapacity Benefit / Severe Disablement Allowance Caseload (Thousands): Local Authority of claimant by Gender of claimant, (2006)http://193.115.152.21/100pc/ibsda/ccla/ccsex/a_carate_r_ccla_c_ccsex_feb06.html

46. Department for Work and Pensions, Disability Living Allowance - all entitled cases Caseload (Thousands): Working Age/Pension Age split by Local Authority of claimant by Age of claimant, (2006)http://193.115.152.21/100pc/dla_ent/ccla/cnage/ccclient/a_carate_r_ccla_c_cnage_p_ccclient_working_age_feb06.html

47. lee Hodgkins, S. At any time. Including Disabled, op cit

48. Tower Hamlets Primary Care Trust, Tower Hamlets Primary Care Trust Local delivery plan (2005/8)www.thpct.nhs.uk/uploads/strategies/Local%20Delivery%20Plan%202005.doc

49. Tower Hamlets Primary Care Trust, Health and well-being in Tower Hamlets: A strategy for primary and community care services 2006 to 2016, (2006)

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http://www.thpct.nhs.uk/uploads/(COR)_H&WB%20strategy.pdf

50. Beresford, P. User involvement, research and health inequalities: Developing new directionshttp://www2.warwick.ac.uk/fac/cross_fac/healthatwarwick/research/devgroups/socialwork/swhin/esrc_seminar_series/seminar_1/beresfordpaper.pdf

51. Beresford and Evans, User involvement in Research and Evaluation: Liberation or regulation?, Cambridge, (1999)http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=100147

52. Tower Hamlets Primary Care Trust, Health and well-being in Tower Hamlets, op cit

53. Derbyshire Coalition of Disabled People, Patient Empowerment, op cit

54. The Disability Discrimination Act (1995), op cit

55. Disability Rights Commission, You can make a difference - improving hospital services for disabled peoplehttp://www.drc.org.uk/docs/Hospital%20leaflet%20longer%20version%20270504.doc

56. The Disability Discrimination Act (1995), op cit

57. ibid

58. British Council of Disabled People, The social model of disability and emancipatory research, op cit

59. Clarke, L. Liverpool Central Primary Care Trust Accessible Health Information: Project Report, (2002)www.leeds.ac.uk/disability-studies/archiveuk/Clark,%20Laurence/liverpool%20NHS.pdf

60. The Disability Discrimination Act (1995), op cit

92

61. Derbyshire Coalition of Disabled People, Patient Empowerment, op cit

62. lee Hodgkins, S. At any time. Including Disabled, op cit

63. The Disability Discrimination Act (2005) op cit

64. Department of Health, Independence, well-being and choice, (2005)http://www.dh.gov.uk/assetRoot/04/10/64/78/04106478.pdf

65. Department for Work and Pensions, Access to Work, (2006)http://www.dwp.gov.uk/publications/dwp/2006/atwa5jp-jan06.pdf

66. The Disability Discrimination Act (1995), op cit

67. ibid

68. Disability Rights Commission Act (1999)http://www.opsi.gov.uk/acts/acts1999/19990017.htm

69. Clarke, L. Liverpool Central Primary Care Trust Accessible Health Information, (2002) op cit

70. Derbyshire Coalition of Disabled People, Patient Empowerment, op cit

71. Disability Rights Commission, Equal Treatment: Closing the Gap – Advice to PCTs, op cit

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Further Reading

Disability Living Foundation, Disability Awareness, (2006)http://www.dlf.org.uk/factsheets/pdf/Disability_awareness.pdf

Disability Rights Commission, What we dohttp://www.drc-gb.org/About_Us/What_we_do.aspx

NHS, National Prosthetics and Wheelchair Services Report 1993-

1996, (1996)

Office for National Statistics, 2002 General Household Survey, (2004) http://www.statistics.gov.uk/cci/nugget.asp?id=867

Department of Health, People registered as deaf or hard of hearing, (2004)http://www.dh.gov.uk/PublicationsAndStatistics/Statistics/StatisticalWorkAreas/StatisticalSocialCare/StatisticalSocialCareArticle/fs/en?CONTENT_ID=4098132&chk=HbF/60

Department of Health, People registered blind and partially sighted, (2003) http://www.dh.gov.uk/PublicationsAndStatistics/Statistics/StatisticalWorkAreas/StatisticalSocialCare/StatisticalSocialCareArticle/fs/en?CONTENT_ID=4082697&chk=NrtmK1

Diabetes UK http://www.diabetes.org.uk/diabetes/get.htm

The Epilepsy Research Foundation http://www.erf.org.uk/

Department of Health, 2001 Health Survey for England http://www.archive2.official-documents.co.uk/document/deps/doh/survey01/disa/disa01.htm

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Grundy et al, Disability in Britain, Department of Social Security Research Report no. 94 (1999)http://www.dwp.gov.uk/asd/asd5/94summ.asp

Office for National Statistics, Census 2001, (2004)

http://www.statistics.gov.uk/CCI/nugget.asp?ID=959&Pos=5&ColRank=1&Rank=208

Office for National Statistics, data taken from, Census 2001

http://www.statistics.gov.uk/statbase/Product.asp?vlnk=13209  

Department of Work and Pensions, Family Resources Survey 2003-2004http://www.dwp.gov.uk/asd/frs/2003_04/pdfonly/frs_2003_04_report.pdf

Eurostat, European Social Statistics, (2005)http://epp.eurostat.cec.eu.int/cache/ITY_OFFPUB/KS-DC-05-001/EN/KS-DC-05-001-EN.PDF

Department of Work and Pensions, Disabled for life? Attitudes towards, and experiences of, disability in Britain, (2002)http://www.dwp.gov.uk/asd/asd5/173summ.asp

The Disability Rights Commission, Attitudes and Awareness Survey, (2003) http://www.drc-gb.org/uploaded_files/documents/10_519_ResearchSurveyAttitudes202003.pdf

Office for National Statistics, Labour market experiences of people with disabilities, (2002)http://www.statistics.gov.uk/articles/labour_market_trends/People_with_disabilities_aug2002.pdf

National Centre for Social Research, British Social Attitudes Survey 2000, data available from www.esds.ac.uk

Joseph Rowntree Foundation, Social exclusion and the onset of disability, (2003)

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http://www.jrf.org.uk/knowledge/findings/socialpolicy/n23.asp

Joseph Rowntree Foundation, Adults ‘more likely to become disabled if they are already living on low incomes’, (2003)http://www.jrf.org.uk/pressroom/releases/191103.asp

Dunn, James, Housing and Health Inequalities: Review and Prospects for Research, Routledge, Volume 15, Number 3, (2000) pp: 341-366, http://taylorandfrancis.metapress.com/(mknpyhneenrvzn455onusw45)/app/home/contribution.asp

Hancock et al, Inequalities in the health of older people: health status and its relationship to past and present material and social well-being, The University of Essex, (2004)http://www.essex.ac.uk/hhs/research/Projects/health%20inequalities%20among%20older%20people.html

Ball, Clive, Leahy, George, Mole, Geoff, Neave, Penny, Wright, Beverley, Public Health Profile, Tower Hamlets Primary Care Trust, (2002)http://www.lifestylesurvey.org.uk/pdfs/rbank/Towerhamletshealthprofile.pdf

Bishop, T. Inspection of mental health services London Borough of Tower Hamlets August-September 2002, Department of Health (2004)http://www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsInspectionReports/PublicationsInspectionReportsArticle/fs/en?CONTENT_ID=4007911&chk=KZxhpc

Davies, T. Inspection of services for adults who are visually impaired or blind in Tower Hamlets 20-31 October 1997, Department of Health, (1998)http://www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsPolicyAndGuidance/PublicationsPolicyAndGuidanceArticle/fs/en?CONTENT_ID=4008715&chk=YXVkUn

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Editorial, Primary care for refugees and asylum seekers, British Medical Journal (2006) pp: 62-63.http://bmj.bmjjournals.com/cgi/content/extract/332/7533/62

Gray, B. Social Exclusion, Poverty, Health and Social Care in Tower Hamlets: The Perspectives of Families on the Impact of the Family Support Service, British Journal of Social Work (2003) pp: 361-380http://bjsw.oxfordjournals.org/cgi/content/abstract/33/3/361

Krieger, N. Embodying Inequality: A Review of Concepts, Measures, and Methods for Studying Health Consequences of Discrimination, International Journal of Health Services Volume 29, Number 2 (1999) pp: 295-352, http://baywood.metapress.com/(04m00a55u0oxfha04tmvrxqz)/app/home/contribution.asp?referrer=parent&backto=issue,5,11;journal,30,143;linkingpublicationresults,1:300313,1

Kudhail, P. Inspection of services for people with learning disabilities: London Borough of Tower Hamlets November 2001, Department of Health, (2002)http://www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsInspectionReports/PublicationsInspectionReportsArticle/fs/en?CONTENT_ID=4010167&chk=WKpw1y

Tower Hamlets Primary Care Trust, Our aims and priorities for 2005-2006, (2005)http://www.thpct.nhs.uk/uploads/strategies/Aims%20and%20priorities%20summary%2005-06.doc

Tower Hamlets Primary Care Trust, Improving health: your report on local health services in 2005-06, Annual Report (2003)www.thpct.nhs.uk/uploads/reports/(COR)_Annual%20Report%202006.pdf

Tower Hamlets Primary Care Trust, Transcript of the Tower Hamlets Primary Care Trust hosted conference: Work-4-Health, 11th May 2006, for details contact Cora Woodhead

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cora.woodhead @thpct.nhs.uk

Information Centre, The, Mental Health Minimum Dataset data 2004-05, (2006)http://www.icservices.nhs.uk/mentalhealth/dataset/pages/data2004-05.asp

Woods LM, Rachet B, Riga M, Stone N, Shah A, Geographical variation in life expectancy at birth in England and Wales is largely explained by deprivation, (Update), Journal of Epidemiology and Community Health, (2005) pp. 115-20

Marks L, McConnell J, Baker M, Broader skills for working with prenatal depression, Community Practitioner, (2005) pp. 280-2

Boomla K, Long-term illness is the real GP agenda, General Practitioner, (2005) pp. 34-5

Pincus T, Vogel S, Breen A, Foster N, Underwood M, Persistent back pain - why do physical therapy clinicians continue treatment? A mixed methods study of chiropractors, osteopaths and physiotherapists, Eur J Pain, (2006) pp. 67-76

Kirk L, Underwood M, Chappell L, Martins-Mendez M, Thomas P, The effect of osteopathy in the treatment of chronic low back pain - a feasibility study, International Journal of Osteopathic Medicine, (2005) pp. 5-11

Harding G, Parsons S, Rahman A, Underwood M, "It struck me that they didn't understand pain": the specialist pain clinic experience of patients with chronic musculoskeletal pain, Arthritis Rheum, (2005) pp. 691-6

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Carr J, Thom N, Rogers S, Perceptions of the nurse practitioner role, Practice Nursing, (2005) pp. 350-5

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Gelding S, Vijayaraghavan S, Davison C, Chowdhury TA, Community diabetes; an East London perspective, Journal of the Royal Society of Medicine, (2005) pp. 96-100

Chowdhury TA, Lasker SS, Mahfuz R, Ethnic differences in control of cardiovascular risk factors in patients with type 2 diabetes attending an Inner London diabetes clinic, Postgrad Med Journal, (2006) pp. 211-15

Naudé K, Hughes M, Considerations for the use of assistive technology in patients with impaired states of consciousness, Neuropsychol Rehabil, (2005) pp. 514-21

Hull SA, Boomla K, Primary care for refugees and asylum seekers, BMJ, (2006) pp. 62-3

Bickerton J, Dewan V, Allan T, Streaming A&E patients to walk-in centre services, Emergency Nurse, (2005) pp. 20-3

Spencer A, Riley AJ, Carter YH, Meads G, Underwood M, McGuire A, Costs and consequences of Personal Medical Services (PMS): A case study approach to the national evaluation of PMS in the UK, Primary Health Care Research and Development, (2005) pp. 232-43

Bose R, Jennings S, Child psychiatry in a multicultural context, Psychiatry, (2005)

Radhamanohar M, Falls and their prevention in old age, Hospital Medicine, (2004), (Update 2005) pp. 730-34

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