Learning Disability and Autistic Spectrum Disorder …...Learning Disability if their IQ score is...
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Page | 1 Learning Disability and Autistic Spectrum Disorder Health Needs Assessment Authors: Nick Germain, Carys Williams Acknowledgments: Karen Bielby, Natasha Mercier, Victor Joseph, Bronwynn Slater. Version Date Comments 1.0 Oct 2014 Final draft for submission to the core group
Transcript of Learning Disability and Autistic Spectrum Disorder …...Learning Disability if their IQ score is...
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Learning Disability and Autistic Spectrum
Disorder Health Needs Assessment
Authors: Nick Germain,
Carys Williams
Acknowledgments: Karen Bielby, Natasha Mercier, Victor Joseph,
Bronwynn Slater.
Version Date Comments
1.0 Oct 2014 Final draft for submission to the core group
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Contents
Executive Summary ...................................................................................................................................5
Recommendations .....................................................................................................................................8
1 Introduction ........................................................................................................................................... 10
1.1 Objectives ....................................................................................................................... 10
1.2 Background .................................................................................................................... 10
1.3 National Policies and Strategy ..................................................................................... 10
1.4 Local Policies and Strategy ................................................................................................ 11
2 Methods ................................................................................................................................................. 12
2.1 Methods in this needs assessment ................................................................................... 12
2.2 Limitations of this needs assessment ............................................................................... 12
3 Local Demography and Context ........................................................................................................ 14
3.1 Age structure of the population .......................................................................................... 14
3.2 Future Age Trends ............................................................................................................... 14
3.3 Life Expectancy .................................................................................................................... 14
3.4 Healthy Life Expectancy ..................................................................................................... 15
3.5 Ethnicity ................................................................................................................................. 15
3.5.1 Language in Doncaster....................................................................................... 16
3.6 Deprivation ............................................................................................................................ 16
4 Prevalence of Learning Disabilities and Autistic Spectrum Disorders ......................................... 18
4.1 Children known to schools ................................................................................................. 18
4.2 Young people transitioning into adult services ................................................................ 19
4.3 Adults known to NHS primary care ................................................................................... 20
4.3.1 Gap between known and estimated numbers ................................................. 20
4.3.2 Adults known to NHS primary care with co-morbidities ................................. 21
4.4 Adults known to acute and community NHS services .................................................... 21
4.4.1 People known to RDaSH Learning Disability services .................................. 21
4.4.2 People with learning disabilities admitted to hospital ..................................... 22
4.5 Adults in receipt of NHS Continuing Healthcare Funding .............................................. 22
4.6 Adults known to social care services ................................................................................ 23
4.7 Hospital Passport / ‘My Traffic Light’ ................................................................................ 23
5 Screening for ill-health and diseases ................................................................................................ 25
5.1 Annual Health Check........................................................................................................... 25
5.2 Disease specific screening programmes ......................................................................... 25
6 Mortality in people with learning disabilities ..................................................................................... 27
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7 Community supports, Housing and Employment ............................................................................ 28
7.1 Community-based services ................................................................................................ 28
7.2 Personalised care ................................................................................................................ 28
7.3 Housing and accommodation ............................................................................................ 28
7.3.1 Placements ........................................................................................................... 28
7.4 Employment and Day Opportunities ................................................................................. 29
8 Carers .................................................................................................................................................... 31
8.1 Overall number of carers .................................................................................................... 31
8.2 Age of person cared for ...................................................................................................... 31
8.3 Age of the carer .................................................................................................................... 31
8.4 Assessment of carer need .................................................................................................. 31
8.5 Carer health in the 2011 Census ....................................................................................... 31
9 Expenditure on services ...................................................................................................................... 33
9.1 NHS Programme spend ...................................................................................................... 33
9.2 Adult Social Care spend ..................................................................................................... 33
10 Service User and Stakeholder Voice .............................................................................................. 34
10.1 The voice of service users ............................................................................................... 34
10.2 The voice of professionals ............................................................................................... 35
10.2.1 Placements ......................................................................................................... 35
10.2.2 Continuing healthcare ....................................................................................... 36
10.2.3 Data ..................................................................................................................... 36
10.2.4 Funding ............................................................................................................... 37
10.2.5 Transition ............................................................................................................ 37
10.2.6 Employability ...................................................................................................... 37
10.2.7 Training ............................................................................................................... 38
10.2.8 Community Services ......................................................................................... 38
10.2.9 Primary care ....................................................................................................... 38
Appendix ................................................................................................................................................... 39
References ............................................................................................................................................... 50
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Abbreviations
AMHS Child & Adolescent Mental Health Services
CCG Clinical Commissioning Group
CHAD Choice for All Doncaster
CHC Continuing Health Care
DCCG Doncaster Clinical Commissioning Group
DH Department of Health
DMBC Doncaster Metropolitan Borough Council
DVTU Doncaster Vocational Training Unit
EHC Plan Education Health & Care Plan
GP General Practitioner
HLE Healthy Life Expectancy
HSCIC Health & Social Care Information Centre
ICD10 International Classification of Disease Version 10
IHAL Improving Health and Lives (the Learning Disability Observatory)
IPC Institute for Public Care
LSOA Lower Super Output Area
NEET Not in Education Employment or Training
ONS Office for National Statistics
SEC Social Education Centre
SEN Special Educational Need
TLA Traffic Light Assessment
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Executive Summary
Definition of Learning Disability
The Department of Health (DH) has defined a Learning Disability as the presence of a
significantly reduced ability to understand new or complex information and to learn new
skills (impaired intelligence), along with a reduced ability to cope independently (i.e.
impaired social functioning) which started before adulthood and has a lasting effect on
development (DH, 2001). Someone is also classed as having a Learning Disability if
their IQ score is less than 70 (DMBC/NHS Doncaster, 2010). It should be noted that
Learning Disability does not include all those who have a 'learning difficulty' which is
more broadly defined in education legislation.
Population and Epidemiology
Doncaster is a diverse and vibrant Borough, with a population of 302,500 at the 2011
Census. Compared to the England average, Doncaster has a smaller proportion of
adults aged 20 to 44 and a higher proportion of older people aged 50 and above.
In January 2013, 1,350 pupils in Doncaster had a statement for an Autistic Spectrum
Disorder or a learning disability (Department for Education, 2014). Of the 474 pupils
with autism, 47% were in primary schools, 33% in secondary schools and 20% in
special schools. Combining all 876 pupils with a learning disability, 34% were in
primary schools, 28% in secondary schools and 37% in special schools.
The number of patients registered for a learning disability stands at 1,313 patients, or
5.4 per 1,000 patients aged 18 years and above. This is significantly higher than the
England average (4.7 per 1,000) (HSCIC, 2013). An estimate of the true number of
people with a learning disability is available (IPC, 2014), calculated by applying rates
from an academic study (Emerson & Hatton, 2004) to the population aged 18 years and
above. The diagnosis rate for people with learning disabilities is 23% (1,313 registered
patients out of an estimated total of 5, 610).
Service utilisation
On the 11/07/2014 nearly 200 patients within DCCG were in receipt of funding (DCCG,
2014). This equates to 10% of patients known to NHS Primary Care. Around three
quarters of these people are fully funded by the NHS, with the remaining quarter jointly
funded by health and social care. Approximately a quarter of these recipients were
located outside the Doncaster area. At March 2013, the number of people funded either
fully or jointly stood at 155 (DMBC, 2013).
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A low proportion of patients with learning disabilities are registered for coronary heart
disease compared to all patients (12 per 1,000 compared to 52 per 1,000 for all
patients). Recorded prevalence of diabetes is roughly the same (75 per 1,000
compared to 72 per 1,000 for all patients), while identification of asthma is actually
higher in people registered for a learning disability (99 per 1,000 compared to 69 per
1,000 in all patients).
In the last year, 81% of eligible patients received a health check (IHAL, 2014) which is
significantly above the England average of 52%. At the end of 2012/13, coverage for
cervical smears was especially low for people with learning disabilities compared to the
general population (DMBC, 2013). Coverage for breast cancer screening was slightly
lower than for the general population, and comparable for bowel cancer screening.
Data on elective and emergency hospital admissions were supplied by DCCG. The
numbers were very low suggesting that people with learning disabilities are not reliably
identified through the use of ICD 10 codes.
Approximately 900 people with learning disabilities are receiving services or support
through Adult Social Care (HSCIC, 2014a). In the last 5 years there has been a marked
shift towards community based services over residential and nursing care.
Service User and Stakeholder Voice
Consultation with service users highlighted a number of services and sources of
support which included peers, family, friends, support groups and staff, and health
professionals. During transition, an initial loss of routine and lack of support were
identified as some of the bigger changes associated with leaving school. Access to
employment and training opportunities were viewed as important, gave a sense of
independence and helped people to feel valued.
One of the key issues highlighted in consultation with professionals was the need to
continue work to increase local provision to keep more people with learning disabilities
in Doncaster, although some progress has already been made. Issues with data
sharing across organisations were discussed in length as a barrier to providing key
support in some cases, such as when patients with learning disabilities are referred to
hospital. Work to address this will enable care to be adapted as appropriate to better
meet their needs.
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Threats to funding and a government reduction in spending were identified as having a
large impact on care, whilst the need to increase some training provision with staff
groups such as GPs was also highlighted. Some current training provision and work
with professionals was acknowledged as a positive and opportunities to develop this
further were discussed. Employment opportunities were again seen as a key priority
and an opportunity to continue to build on current work and models was also identified.
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Recommendations
The following recommendations are intended to inform strategic development, future
commissioning priorities and working practice.
Recommendation 1 – Education professionals require the skills to screen and
refer children where necessary, and health organisations need to participate fully
in the implementation of Education, Health and Care Plans.
Recommendation 2 – There is a need for case finding of patients with learning
disabilities and Coronary Heart Disease.
Recommendation 3 – Acute hospitals require an effective system to flag people
presenting or referred to hospitals with learning disabilities.
Recommendation 4 – Efforts to provide Health and Social Care professionals with
the skills to screen for learning disabilities need to be continued.
Recommendation 5 – Work should be carried out to clarify whether there is
benefit to conducting an audit of ‘primary care needs’ for patients receiving
Continuing Health Care to identify trends and possible prevention.
Recommendation 6 – There is a need to differentiate between learning disabilities
and Autistic Spectrum Disorders in adults during data collection and recording.
Recommendation 7 – Work should continue to increase the number of people
with learning disabilities participating in voluntary activities and paid
employment. Evaluate initiatives such as Project Search, expanding these where
possible and engaging new employers.
Recommendation 8 – Establish a carers’ forum and raise awareness of the formal
and informal services available to people caring for someone with a learning
disability.
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Recommendation 9 – Continue work to increase local provision to keep more
people with learning disabilities in Doncaster.
Recommendation 10 - There is a need to explore options related to linking up IT
systems across the health and social care sector to enable data sharing where
possible to improve service provision and planning.
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1 Introduction
1.1 Objectives
The aim of this Health Needs Assessment is to understand the profile of those in
Doncaster with Learning Disability and Autistic Spectrum Disorder, identify current gaps
in service provision and to inform local strategy.
Specifically the objectives are:
i. To review literature on the health needs of those with learning disabilities,
including an overview of the policy context and definitions of Learning Disability
and Autistic Spectrum Disorder;
ii. To describe the local epidemiology of Learning Disability;
iii. To consider and review current service provision;
iv. To make recommendations to inform/influence local strategy and commissioning
needs.
1.2 Background
Definitions of Learning Disability are broad and encompass those with range of
disabilities. The Department of Health (DH) has defined a Learning Disability as the
presence of a significantly reduced ability to understand new or complex information
and to learn new skills (impaired intelligence), along with a reduced ability to cope
independently (i.e. impaired social functioning) which started before adulthood and has
a lasting effect on development (DH, 2001). Someone is also classed as having a
Learning Disability if their IQ score is less than 70 (DMBC/NHS Doncaster, 2010). It
should be noted that Learning Disability does not include all those who have a 'learning
difficulty' which is more broadly defined in education legislation.
1.3 National Policies and Strategy
‘Valuing People’ (DH, 2001) set out a new commitment by Government to improving the
lives of those with Learning Disabilities by working with Local Authorities, health
services, voluntary organisations, people with Learning Disabilities and their families.
This new vision for people with Learning Disabilities focussed on four key principles:
Rights, Independence, Choice and Inclusion. It set out a new national objective for
services for people with Learning Disabilities, supported by new targets and
performance indicators, to provide clear direction for local agencies. It also highlighted
problems including poorly co-ordinated services, transition to adulthood, insufficient
support for carers, unmet health needs, limited housing choice and employment
opportunities. This focussed priorities for local agencies in delivery.
‘Valuing People Now’ (DH, 2009) maintained the vision set out in 2001 and set the
challenge for public services and everyone working with people with Learning
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Disabilities to take a personal approach. This approach starts with each individual, their
wishes, aspirations and needs, and which seeks to give them control and choice over
the support they need and the lives they lead. By delivering a personalised approach,
the priorities are to enable people to take control of their lives, have employment and
educational opportunities, have choice over what they do during the day, have better
health and have improved access for housing. The priorities set out in this strategy take
account of the responses to wide consultation.
1.4 Local Policies and Strategy
This Health Needs Assessment will help inform a refreshed local strategy and
commissioning needs. The previous strategy ‘Being Valuable, Being Valued’
(DMBC/NHS Doncaster, 2010) set out the plans for 2010-2013 and covered some key
priorities including:
Continuing work on the development of ‘supported living’ priorities;
Continuing to create more work opportunities for people with Learning
Disabilities (both paid and voluntary)
Improving quality and experience of Health Care services;
Ensuring people with Learning Disabilities have a greater say in how support
services are organised.
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2 Methods
2.1 Methods in this needs assessment
This assessment identifies need using quantitative (numeric) and qualitative
(consultative) methods. The numeric data describes the demography of Doncaster, the
number of people with learning disabilities and their use of services, comparing
Doncaster against other areas. Supporting tables and charts are located in the
appendices.
The numeric data is from a variety of local and national sources including;
Census 2011 (Office for National Statistics)
Public Health Outcomes (Public Health England web-based tool)
Department for Education Statistical Release 2013 (Department for Education)
NHS Quality Outcomes Framework 2012/13 (Health and Social Care Information
Centre)
National Adult Social Care Intelligence Service (Health and Social Care
Information Centre)
Self-Assessment Framework for Learning Disabilities 2012/13 (Doncaster MBC)
Health Check and Screening Projects (Improving Health and Lives, Learning
Disabilities Observatory)
Projecting Adult Needs and Service Information (Institute of Public Care)
These data sources have been aligned with consultations to capture the views of
service users and professionals. The consultation took the form of a workshop with
professionals and a focus group with service users through Choice for All Doncaster
(CHAD). The questions for the focus group were also sent electronically to groups
working with people with learning disabilities. The consultation methods are described
in more detail in section 10.
2.2 Limitations of this needs assessment
The number of people known to services does not reflect the true number of people
with learning disabilities. Estimates have been used where possible but readers should
be mindful of the significant population that are not captured by the data, numbering in
the thousands.
Some systems rely on paper records, or were not able to aggregate and report data –
therefore some stakeholders were not able to provide data when requested.
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Local NHS systems do not flag whether a person has a learning disability, i.e. when a
person presents or is referred to hospital. Hospital admissions were only identifiable
where the person had an explicit diagnosis with an ICD10 code (and these numbers
were very low).
Databases for adult services do not differentiate between autism and learning
disabilities – much of the analysis had to consider these issues in unison.
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3 Local Demography and Context
Doncaster is a diverse and vibrant Borough. It is of medium size compared to other
Boroughs in Yorkshire & Humber, with a population of 302,500 at the 2011 Census.
Some areas within the Borough are relatively affluent compared to the national
average, though other areas are amongst the most deprived in the country. No
Doncaster communities are free of lifestyle or social problems but some areas have
multiple and persistent issues afflicting people across the life course.
3.1 Age structure of the population
Compared to the England average, Doncaster has a smaller proportion of adults aged
20 to 44 and a higher proportion of older people aged 50 and above. The number of
children and teenagers are similar to the national trend. Since 2001, Doncaster’s
population has increased by 5.4% (or 15,600 people) and is now estimated to be
around 302,500. The population is presented as a pyramid by gender and five year age
band in Chart 1 in the appendices (ONS, 2012).
3.2 Future Age Trends
Doncaster`s population is expected to grow by approximately 3% (up to 312,500) by
2020 according to estimates based on the last Census. Notably, there are predicted to
be increases in all age groups from 55 years and above. The largest increase is
expected to be in the population aged 75 years and above, by 16% or an additional
4,000 people. Population projections are presented in Table 1 and Chart 2 in the
appendices (IPC, 2014).
People with learning disabilities experience poorer health and die at an earlier age (see
section 4) though their longevity may increase alongside trends for the general
population. This would have implications for health and social care services striving to
maintain people in community settings.
3.3 Life Expectancy
For the general population in Doncaster, life expectancy at birth is 77.5 years for men
and 81.7 years for women. Both are significantly lower than the national average
though life expectancy has increased over the last decade. These increases in life
expectancy means more people in Doncaster will reach very old age and extreme old
age, resulting in the ageing population identified in section 3.2. Chart 3 in the
appendices details the increase in life expectancy for Doncaster and England over the
last 10 years (PHE, 2014).
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These inequalities between local and national life expectancy are a result of local socio-
economic determinants and lifestyle behaviours. People with learning disabilities within
Doncaster may experience similar inequalities, having poorer health compared to
people with learning disabilities in other parts of the country.
There is variation in life expectancy within Doncaster. For males, there is a 7 year
range from 73.4 years in Central Ward to 80.4 years in Edenthorpe, Kirk Sandall &
Barnby Dun. For females, there is a 7 year range from 78.2 years in Adwick to 85.2
years in Torne Valley. Life expectancy for people with learning disabilities may also
differ within the Borough, so that some areas have greater need than others. Chart 4 in
the appendices details life expectancy by the 21 Electoral Wards (Doncaster Data
Observatory, 2012).
3.4 Healthy Life Expectancy
Both males and females have significantly low healthy life expectancy (HLE) compared
to England. On average, males in Doncaster experience ill-health from the age of 58.0
years and females from the age of 59.6 years. This means that people in Doncaster
typically spend the latter 20 years of their life without good health. It is reasonable to
assume that people with learning disabilities experience even lower healthy life
expectancy. Chart 5 in the appendices compares HLE in Doncaster to Upper Tier
Manufacturing Towns. Other similar areas, such as North East Lincolnshire and
Dudley, have a HLE that is 4 to 5 years higher (PHE, 2014).
3.5 Ethnicity
In the 2011 Census, the Doncaster population was 91.8% White British compared with
85.5% for Yorkshire & Humber and 79.8% for England. Though less ethnically diverse
than the regional and national average, the proportion has increased in recent years –
in 2001 the population was 96.5% White British. The minority ethnic groups in
Doncaster are detailed in the table below;
Table 2 - Minority ethnic groups within Doncaster (ONS, 2013a)
Count % of the
population
White: Other White 8,556 2.8%
Asian/Asian British 7,614 2.5%
Asian/Asian British: Indian 1,865 0.6%
Asian/Asian British: Pakistani 2,728 0.9%
Asian/Asian British: Bangladeshi 117 0.0%
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Asian/Asian British: Chinese 1,121 0.4%
Asian/Asian British: Other Asian 1,783 0.6%
Black/African/Caribbean/Black British 2,337 0.8%
Black/African/Caribbean/Black British: African 1,309 0.4%
Black/African/Caribbean/Black British: Caribbean 778 0.3%
Black/African/Caribbean/Black British: Other Black 250 0.1%
Other ethnic group 1,064 0.4%
Other ethnic group: Arab 231 0.1%
Other ethnic group: Any other ethnic group 833 0.3%
Doncaster has low ethnic diversity though there are concentrated areas of diversity with
the Borough. There are significant non-white British populations in the urban centre
and surrounding areas, namely Balby (16%), Belle Vue (26%), Bennethorpe (18%),
Hexthorpe (24%), Hyde Park (46%), Intake (16%), Lower Wheatley (37%), Town Moor
(20%), and Wheatley Park (20%).
3.5.1 Language in Doncaster
96% of Doncaster’s population (aged >3 years) speaks English as their first or preferred
language – compared to 94% across Yorkshire & Humber and 92% across England &
Wales (ONS, 2013b). 2.1% (approx. 6,300) speak ‘Other European’ languages as a
first or preferred language, of which 1.6% (approx. 4,800) speak Polish. No other
language accounts for half a percentage in Doncaster though 0.3% (approx. 900) speak
Urdu and 0.2% (approx. 600) speak Punjabi. There will be low numbers of people with
learning disabilities that have an alternate preference to English, though health and
social care services need to cater for these through translation services.
3.6 Deprivation
The Index of Multiple Deprivation 2010 provides a composite measure of deprivation
across multiple domains including income, employment, health and disability,
education, skills and training, housing, crime and living environment. Doncaster is
ranked the 39th most deprived of the 326 Local Authorities in England. This measure is
available down to Lower Super Output Area (LSOA) and can be mapped within
Doncaster.
Map 1 – Indices of Multiple Deprivation by Doncaster by LSOAs (DCLG, 2011)
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There are concentrated areas of deprivation around the urban centre but also in all four
corners of the Borough. Forty one LSOAs in Doncaster are in the 10% most deprived
in England – areas of particular note include Balby (5 LSOAs), Mexborough (4 LSOAs),
Stainforth (4 LSOAs), Bentley (3 LSOAs), Denaby Main (3 LSOAs) and Dunscroft (3
LSOAs). People with learning disabilities in Doncaster may experience a
disproportionate level of deprivation compared to other parts of the country.
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4 Prevalence of Learning Disabilities and Autistic Spectrum Disorders
4.1 Children known to schools
All children with a learning disability or Autistic Spectrum Disorder should, if additional
support is required, receive a statement of Special Educational Need (SEN). It is
important that these needs are properly identified; according to a report for the Learning
Disabilities Observatory, ‘89% of children with moderate learning disabilities, 24% of
children with severe learning disabilities and 18% of children with profound and multiple
learning disabilities are education in mainstream schools’ (Emerson et al, 2011, p.40).
Analysis by the Department of Education found the most common primary need for
those with statements of SEN was autistic spectrum disorders and moderate learning
disabilities. It also found that boys were 2.5 times more likely to have a statement in
primary school and 3 times more likely in secondary school (Foundation for People with
Learning Disabilities, 2011)
In January 2013, 1,350 pupils in Doncaster had a statement for an Autistic Spectrum
Disorder or a learning disability (Department for Education, 2014). Of the 474 pupils
with autism, 47% were in primary schools, 33% in secondary schools and 20% in
special schools. Combining all 876 pupils with a learning disability, 34% were in
primary schools, 28% in secondary schools and 37% in special schools.
Table 3 – Pupils with a School Action Plus or Statement level need in Primary,
Secondary and Special schools (Department for Education, 2014)
Total
number
Primary
school
Secondary
school
Special
school
Autism Spectrum
Disorders 474 224 154 96
Specific Learning
Disability 140 70 68 2
Moderate Learning
Disability 598 274 238 86
Severe Learning Disability 232 24 8 200
Profound & multiple
Learning Disabilities 46 4 0 42
Grand total 1,490 596 468 426
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Converting the number to a rate per 1,000 pupils allows for a comparison against
England. According to this comparison, presented in Chart 6 in the appendix,
Doncaster has;
A significantly high number of pupils with autism and severe learning disabilities.
A significantly low number of pupils with moderate learning disabilities and
overall number of pupils with learning disabilities
Note - the Department for Education is transferring from a statement of SEN to an
Education, Health & Care (EHC) plan. From September 2014 young people in further
education will be able to request an EHC plan, and by September 2016 all those in
further education should have transitioned. By April 2018 all children will also have
moved to EHC plans following a transfer review.
4.2 Young people transitioning into adult services
The table below details children and young people statemented for learning disabilities
and autism in each year of Secondary school. The younger cohorts contain fewer
statements - if the figures are accurate and most children receive a statement in the first
few years of Secondary school, then it could be predicted that fewer people will be
transitioning from education into adult services in five to ten years’ time.
Table 4 – Number of children statemented for learning disabilities and autism in each
school year in mainstream and special schools
2014/15
Year 7 (11-12
years) 50
Year 8 (12-13
years) 58
Year 9 (13-14
years) 53
Year 10 (14-15
years) 64
Year 11 (15-16
years) 72
Year 12 (16-17
years) 111
Year 13 (17-18
years) 141
Year 14 (18-19
years) 109
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Fewer statements in the younger cohorts may reflect a general decrease in the number
of children being statemented for learning disabilities and autism. There has been a
year on year decrease from 1,605 in 2010 to 1,443 in 2014, a decrease of 10% over 5
years. In turn, this may be a result of demographic changes. Chart 1 in the appendices
shows there are fewer children and young people compared with previous decades -
there were 53,400 people aged 5-19 years in the 2011 Census compared to 57,400 in
2001.
In reality it is likely that the table above also reflects that some young people receiving a
late diagnosis – especially where the figures jump between Years 11 and 12. There is
anecdotal evidence that autism is underreported and that some young people receive a
late diagnosis in Doncaster.
The new EHC Plans require a more explicit consideration of the health of a child or
young person. The Plans will introduce new thresholds and processes which may help
address underreporting.
Recommendation 1 – Education professionals require the skills to screen and
refer children where necessary, and health organisations need to participate fully
in the implementation of Education, Health and Care Plans.
4.3 Adults known to NHS primary care
The number of patients registered for a learning disability has increased year on year.
The latest figure stands at 1,313 patients, or 5.4 per 1,000 patients aged 18 years and
above. This is significantly higher than the England average (4.7 per 1,000). This trend
is presented in Chart 7 and Table 4 in the appendices (HSCIC, 2013).
4.3.1 Gap between known and estimated numbers
An estimate of the true number of people with a learning disability is available (IPC,
2014), calculated by applying rates from an academic study (Emerson & Hatton, 2004)
to the population aged 18 years and above. The diagnosis rate for people with learning
disabilities is 23% (1,313 registered patients out of an estimated total of 5,610)
Doncaster sits in the middle of the range of upper tier manufacturing towns as
presented in Chart 8 in the appendices. The diagnosis gap does not need to be closed
entirely as people with a milder disability may not want or need support, but the rate is
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significantly lower than five of the other authorities in Barnsley, Rotherham, North East
Lincolnshire, Wakefield and Stockton-on-Tees.
4.3.2 Adults known to NHS primary care with co-morbidities
Doncaster’s Joint Self-Assessment Framework for Learning Disabilities captures the
number of people on GP disease registers (DMBC, 2013). This gives an indication of
co-morbidities and/or the under-identification of diseases in people with learning
disabilities.
A low proportion of patients with learning disabilities are registered for coronary heart
disease compared to the all patients (12 per 1,000 compared to 52 per 1,000 for all
patients). Recorded prevalence of diabetes is roughly the same (75 per 1,000
compared to 72 per 1,000 for all patients), while identification of asthma is actually
higher in people registered for a learning disability (99 per 1,000 compared to 68 per
1,000 in all patients). These rates are compared in Chart 9 in the appendices.
Recommendation 2 – There is a need for case finding for patients with learning
disabilities and Coronary Heart Disease.
4.4 Adults known to acute and community NHS services
4.4.1 People known to RDaSH Learning Disability services
The Solar Centre is a day service for adult with learning disabilities and associated
health needs. The sessions deliver sociable experiences and develop an individual’s
specific skills and interests. Access is via a single point of access through referral and
assessment by a multidisciplinary team.
In November 2014 the Centre had 82 service users with an even gender split. In terms
of health needs, 11 have Autism, 22 have Epilepsy, 36 use a wheelchair, 61 have
Dysphagia (including the need for meal support) and 6 are fed through a PEG system.
Trend analysis is not possible due to difficulties combining data from two previous units
that merged.
Referrals are largely for adults with profound and multiple learning disabilities, complex
epilepsy requiring nurse oversight, or adults with a history of challenging behaviour who
have not been successful within the Social Education Centres.
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The Community Health Team provides healthcare professionals such as Community
Nurses and Occupation Therapists. Most work is with people with high individual
support needs. The numbers using the Community Health Team has increased
consistently from 47 new referrals in 2010 to 135 in 2013. In 2014 there have been 316
new referrals up to November. See Chart 10 in the appendix.
4.4.2 People with learning disabilities admitted to hospital
Data on elective and emergency hospital admissions were supplied by Doncaster
Clinical Commissioning Group. The numbers were very low suggesting that people with
learning disabilities are not reliably identified through the use of ICD 10 codes
(International Classification of Disease 10).
Recommendation 3 – Acute hospitals require an effective system to flag people
presenting or referred to hospitals with learning disabilities.
Recommendation 4 –Efforts to provide Health and Social Care professionals with
the skills to screen for learning disabilities need to be continued.
4.5 Adults in receipt of NHS Continuing Healthcare Funding
Records for Continuing Healthcare are reported at a point in time. On the 11/07/2014
nearly 200 patients within NHS Doncaster CCG were in receipt of funding (DCCG,
2014) – this equates to 10% of patients known to NHS Primary Care.
Around three quarters of these people are fully funded by the NHS, with the remaining
quarter jointly funded by health and social care. Overall, approximately a quarter of the
recipients were located outside the Doncaster area.
Table 6 – People with a learning disability in receipt of Continuing Healthcare funding
(DCCG, 2014)
Within
Doncaster
Out of
Area Total
Total number of patients
with learning disabilities
receiving Continuing
144 54 198
Page | 23
Healthcare
Number with a Primary
Health Need (fully funded) 101 42 143
Number with Joint Funding
(Health & Social Care) 43 12 55
There has been little change on last year, though this number is liable to fluctuation as
people are assessed and added or removed from the programme. At the 31st March
2013 the number of people funded either fully or jointly stood at 155 (DMBC, 2013).
It would be useful to identify the domain of people’s ‘Primary Care Need’, e.g.
continence, psychological needs, breathing et cetera. However, this is not possible with
the system held by NHS Doncaster CCG – it would require the interrogation of paper
records which is not possible at this time.
Recommendation 5 – Work should be carried out to clarify whether there is
benefit to conducting an audit of ‘primary care needs’ for patients receiving CHC
to identify trends and possible prevention.
4.6 Adults known to social care services
The number of people with a learning disability receiving services or support through
Adult Social Care has remained fairly consistent over the last 6 years – approximately
900 per year (HSCIC, 2014a). However, there has been a change in the type of
support with a shift towards community-based services over residential and nursing
care. Five years ago 65% of people received community-based care, in recent years
this has increased to 85%. The trends in community and residential and nursing care
are presented in Chart 11 in the appendices.
Recommendation 6 – There is a need to differentiate between learning disabilities
and Autistic Spectrum Disorders in adults during data collection and recording.
4.7 Hospital Passport / ‘My Traffic Light’
The Hospital Traffic Light Assessment (TLA) was devised by Gloucestershire NHS
Trust and has been adapted and used by many acute trusts in England. This document
should be brought to hospital on all occasions, and remains the property of the patient,
so should go home with them on discharge. It assists people by providing staff with
Page | 24
important information about them and their health. ‘My Traffic Light’ can be kept at
home in case of an emergency admission or deterioration in the individual’s health, or
can be completed prior to a planned admission when it may also be used to aid
assessment and planning.
Hospital Passports are available to people with learning disabilities in Doncaster. It has
not been possible to quantify the number though there is a consensus that they should
be expanded. It would also be beneficial to communicate a person’s learning disability
status to the Yorkshire Ambulance Service.
Page | 25
5 Screening for ill-health and diseases
5.1 Annual Health Check
People with learning disabilities typically experience poorer physical and mental health,
often because they have difficulty recognising illness and communicating their needs.
Since 2009 GPs have received extra payments, through a Direct Enhanced Service, to
provide health checks to eligible patients – broadly speaking eligibility requires that the
person is registered with primary care for a learning disability and is known to social
services primarily for their learning disability.
Chart 12 in the appendices details patients with a learning disability that received a GP
health check as a % of those eligible for a health check. In the most recent year, 81%
of eligible patients received a health check (IHAL, 2014). This is significantly above the
figure for England (52%) and places Doncaster in the top 1/5th of Primary Care Trusts
(future updates will align with CCG geographies).
5.2 Disease specific screening programmes
Screening programmes for people with learning disabilities are reported as part of the
Joint Health & Social Care Self-Assessment Framework. At the end of 2012/13,
coverage of cervical smears was especially low for people with learning disabilities
compared to the general population (DMBC, 2013). Coverage of breast cancer
screening was slightly lower than the general population while bowel cancer screening
was comparable.
Table 7 – Coverage of screening programmes for people with learning disabilities
(DMBC, 2013)
Number with
learning
disabilities
eligible
Number with
learning
disabilities
screened
Coverage in
the Learning
Disabilities
population
Coverage in
the general
population
Cervical smear
454 125 28% 72%
Breast cancer
screening
192 127 66% 75%
Bowel cancer
screening
114 29 25% 24%
Page | 26
Administering a cervical smear to women with learning disabilities can be a sensitive
issue and a higher proportion may be exempt, but reasonable adjustments should be
made to make the programmes as accessible as possible. Chart 13 in the appendices
presents the coverage of people with a learning disability alongside the national rates
for people with a learning disability. In fact coverage for cervical and bowel cancers are
comparable to the England average, and coverage of breast cancer is significantly
higher.
Page | 27
6 Mortality in people with learning disabilities
Research shows that over half the mortality in people with a learning disability can be
attributed to respiratory diseases - 52% compared to just 25% in the general population
(see Chart 14 in the appendices). Within these respiratory diseases, the specific
causes included pneumonia, pneumonitis (inflammation of the lung tissue) due to solids
and liquid, and other unspecified infections.
Other conditions that differ notably from the general population include nervous system
diseases (5.3% versus 1.3%) and congenital and chromosomal conditions (4.0% versus
>1%). People with learning disabilities are less likely to die from circulatory diseases
(12.1% versus 28.9%) and cancer (3.8% versus 22.0%), perhaps because people with
learning disabilities die at a younger age. These rates are presented in Chart 15 in the
appendices.
These figures are from a report by Learning Disability Observatory - How people with
learning disabilities die (Glover & Ayub, 2010), analysing all deaths in England from
2004 to 2008. The authors highlight that only half of death certificates include learning
disability relative to the probable true number based on research and expert opinion.
This data quality impacts the validity of the research but it still provides a useful basis
for this assessment.
Page | 28
7 Community supports, Housing and Employment
7.1 Community-based services
Specific community-based services can be identified from a snap shot reported on the
31st March each year (HSCIC, 2014b). Most of these services comprise home care and
day care. The increase in community services identified in section 4.5 can be attributed
to increases in home care and, to a lesser extent, direct payments. The trends in these
community-based services are presented in Chart 16 in the appendices.
7.2 Personalised care
There has been a significant increase in personal budgets over the last 5 years,
reaching 355 clients in 2013/14 (HSCIC, 2014c). This increase mirrors the trend in
personal budgets for England as a whole. However the figure as a rate per population
is lower in Doncaster – approximately 150 budgets per 100,000 compared to 210 per
100,000 across England. The increase in numbers is presented in Chart 17 and the
comparison of rates is presented in Chart 18, both in the appendices.
7.3 Housing and accommodation
The number of working age adults in settled accommodation has increased consistently
in Doncaster from a low of 32% in 2008/09 (HSCIC, 2014d). Last year eight in ten
people with a learning disability were in settled accommodation - 615 out of the 755
known to adult services. Those in settled accommodation reside in diverse settings
though the majority live with friends/family (315, 51%) or in supported accommodation
(220, 36%). This trend is presented in Chart 19 in the appendices.
The non-settled figure, equating to 110 people, is probably inflated by those in
residential care. These may be long term or permanent arrangements but for reporting
purposes, and a standardised definition, these are counted as unsettled. Around 140
people (combining settled and unsettled definitions) are located within residential care
each year (HSCIC, 2014e). Nearly all of these are a permanent arrangement, and
there are around 10 new permanent admissions each year. The trend of those in
residential and nursing care is presented in Chart 20 in the appendices.
7.3.1 Placements
There are 32 residential homes in Doncaster for adults with learning disabilities,
including 7 provided by RDaSH and the South Yorkshire Housing Association. These
homes provide 371 beds which are purchased by Doncaster Council and other Local
Authorities. There has been an increase in residential care beds – at any one time half
Page | 29
of beds are funded locally, 40-45% are funded by other Local Authorities and 5-10% are
void.
Doncaster Council fully or part funds 23 adults with learning disabilities out of the area
(as at August 2014) – a figure subject to change depending on CCG funding. The topic
of placements featured prominently in the consultation with health and social care
professionals in section 10.2.1.
7.4 Employment and Day Opportunities
Employment for people with learning disabilities increased from 4.1% in 2008/09 to
7.3% in 2011/12 and has remained at this level for the last few years (HSCIC, 2014f).
This trend and rate is comparable to that of England and is presented in Chart 21 in the
appendices. Converting these rates to numbers, 2013/14 equates to 55 people out of
the 1,300 known to NHS Primary Care and 900 known to Adult Social Care. The
breakdown of hours (Chart 22) shows that the majority are working a handful of hours
per week – often an intentional decision to ensure other benefits are not affected.
The number of young people with learning disabilities Not in Education, Employment or
Training (NEET) is comparable to that of the general population – both at 6-7% of
young people aged 16 to 18 years. A high proportion of young people with learning
disabilities are retained in education beyond 16 years.
A higher number of adults work as unpaid volunteers, around 70-80 per year in recent
years (HSCIC, 2014f), but the numbers are low compared to total known to Adult
Social Care and NHS Primary Care.
Employment was important to the participants of the consultation (sections 10.1 and
10.2.6) but this is dependent on the infrastructure to facilitate volunteering, training and
employment. Many people receive support from the Doncaster Vocational Training Unit
and this service will continue. A reduction in Social Education Centres (SECs) and a
general reduction in the Council workforce will limit direct employment by the Council -
alternative options needs to be developed outside the structure of the SECs. Doncaster
Council has established Project Search with Next Distribution Centre. 8 young people
in the last year of college have an internship with Next to learn new skills and aid their
employability. Feedback from the host organisation has been positive though no formal
evaluation has taken place yet.
Recommendation 7 – Work should continue to increase the number of people
with learning disabilities participating in voluntary activities and paid
Page | 30
employment. Evaluate initiatives such as Project Search, expanding these where
possible and engaging new employers.
Page | 31
8 Carers
8.1 Overall number of carers
The number of carers receiving support has increased in recent years from 90 in
2008/09 to 185 in 2013/14 (HSCIC, 2014g). The majority of carers (175 / 185 carers)
accessed a specific service as opposed to just seeking information (HSCIC, 2014h).
The numbers are low compared to the likely number of family and friends caring for the
people registered across Adult Social Care and NHS Primary Care – though some
carers may prefer less formal peer networks and other forms of support.
8.2 Age of person cared for
The vast majority of carers in 2013/14 supported someone of working age between 18
and 64 years (HSCIC, 2014g). Only a handful of known carers support older people
aged 65yrs and above. This may be linked to premature mortality in people with
learning disabilities or because people with learning disabilities are more likely to enter
residential or nursing care in older age.
8.3 Age of the carer
The National Adult Social Care Intelligence Service cannot quote the age of carers
specific to people with learning disabilities, but in the general terms there has been an
increase in older carers aged 75yrs and above (HSCIC, 2014g)(see Chart 23 in the
appendices). However this is more likely a result of caring for physical and sensory
impairments, and mental health conditions such as dementia, rather than older people
with learning disabilities.
8.4 Assessment of carer need
All the known people caring for someone with a learning disability received an
assessment/review in 2013/14 (HSCIC, 2014g). The vast majority (165 / 185 carer)
were carried out jointly alongside the needs of the dependent, which is recognised as
good practice.
8.5 Carer health in the 2011 Census
Carers often experience poorer health themselves. In Doncaster, the 2011 Census
showed that 14% of people providing intensive unpaid care (above 50hrs per week)
reported bad or very bad health (ONS, 2014). This compares with just 7% of people
who do not provide unpaid care.
Page | 32
Recommendation 8 – Establish a carer’s forum and raise awareness of the formal
and informal services available to people caring for someone with a learning
disability.
Page | 33
9 Expenditure on services
9.1 NHS Programme spend
In Doncaster NHS spend per head of population has decreased year on year - in
2011/12 (£55 per head) it was nearly half the level in 2009/10 (£106 per head)(HSCIC,
2014i). However spend in Doncaster is still above the rate for Manufacturing Towns
and England as a whole, which are both around £30 to £40 per head. These figures
are presented in Chart 24 in the appendices.
9.2 Adult Social Care spend
Expenditure on adults with learning disabilities aged under 65 years has increased
markedly over the last eight years, exceeding £29m in 2012/13 (HSCIC, 2014j). In the
last couple of years, spend per head of population has been similar to England at
approximately £1,200 per 10,000 people. These figures and trends are presented in
Chart 25 in the appendices.
The National Adult Social Care Intelligence Service provides a breakdown of these
figures. Spend per person per week is lower in Doncaster than England across all
types or care – nursing and residential care, home care, day care and direct payments.
These figures are presented in Chart 26 in the appendices. However this may be due
to the lower cost of supplying these services relative to other areas (e.g. staffing costs)
rather than a comparable difference in the amount spent.
Page | 34
10 Service User and Stakeholder Voice
10.1 The voice of service users
A total of Ninety seven people with learning disabilities such as Mild/moderate learning
disabilities, Downs syndrome, Cornelia De Lange Syndrome, Autism, Asperger’s and
Prader-Willi took part in the consultation. Consultation with service users took two
forms:
Focus group with members of the Choice for All Doncaster (CHAD) group;
Questionnaires sent out via email to support groups for people with learning
disabilities.
All service users were asked the same set out questions which focussed on five key
questions:
1. What does ‘healthy’ mean to you?
2. What do you think helps people to be healthy?
3. Who keeps you healthy?
4. What changed for you when you left school?
5. Tell us which groups you go to.
The key themes to come out of consultation with service users are summarised below:
Perception of health People were able to identify healthy eating/5 a day, weight
control, physical activity and personal
cleanliness/appearance as elements of ‘being healthy.’ A
positive attitude, feeling happy, keeping busy and being
independent were also linked to ‘being healthy.’ Attending
health checks and other check-ups (e.g. dental, opticians)
was also seen as an important part of staying healthy.
Support/services A number of services and sources of support for people
staying healthy were identified. These included peers,
family, friends, support groups and social networks. Key
people seen to help keep healthy were both support staff
and health professionals, notably Doctors, Nurses, Dentists
and Opticians. Having a Wellness Recovery Action Plan
was also seen by some participants as aids to keeping
healthy. A personal responsibility to staying healthy was
also identified by a number of service users.
Transition An initial loss of routine and lack of support were identified
as some of the bigger changes associated with leaving
school. Some also identified that they missed the social
aspects that school brought, although for others leaving
Page | 35
school was seen as more positive if they were no longer
bullied or were moving onto further training or employment.
Employment/training Working and access to employment opportunities were
seen to give a sense of independence, and allowed people
to save for things such as holidays which were linked to
happiness. Volunteering, training and employment
opportunities were also seen as important in helping people
to feel valued.
Information Key sources of information on how to be healthy included
various media sources such as TV, and reading. Access to
easy read materials were viewed as important, and pictures
were also identified to be useful for those that had reading
difficulties.
10.2 The voice of professionals
Consultation with health and social care professionals working with those with learning
disabilities took the form of a workshop where activities and discussion were centred
around four key areas:
I. Current strengths and assets;
II. Weaknesses or gaps;
III. Opportunities for improvement;
IV. Current and potential risks.
Attendees were asked to note their thoughts on these areas in relation to the current
local picture in Doncaster in small groups. These areas were then discussed in more
detail as a wider group. Further one to one discussions were carried out with some
learning disabilities professionals that were unable to attend the workshop and have
been added into the themes.
Nine key themes were identified from consultation with professionals, which are
summarised in the following sections.
10.2.1 Placements
Professionals at the workshop were able to identify that parents appeared to find the
experience of private providers positive. Progress had also been highlighted where the
number of people placed in supported living has increased, which has helped to keep
people local.
Page | 36
A number of areas for development and current gaps were discussed. These mainly
centred on the need to keep more people local. For example, it was identified that
commissioners need to work more closely with providers to reduce costs to be able to
respond to more complex needs locally and that although there have been marked
improvements, there are still too many people placed in residential care. Learning from
other Local Authority areas that have pathways in place to keep those with more
challenging behaviours out of residential care and within the local area, was also
identified as an area of future development.
Recommendation 9 - Continue work to increase local provision to keep more
people with learning disabilities in Doncaster.
10.2.2 Continuing healthcare
Changes to eligibility for funding and government reductions in spending have been
identified to have caused issues and increasing pressures to continuing healthcare.
This is also believed to have caused disruptions to work patterns. Continuing with joint
working between DMBC, Doncaster CCG and other relevant partners was identified as
an element to rectifying current issues in relation to continuing healthcare.
10.2.3 Data
Data quality and data sharing were discussed as significant current barriers. The quality
of currently available data means there is a poor understanding of the needs and
number of people with learning disabilities in Doncaster. Issues with data sharing
across organisations were discussed in length as a barrier to providing essential key
support in some cases. Examples of this include needing to be able to ‘flag’ patients
with learning disabilities when they are referred to hospital so that approaches can be
adapted to better meet their needs e.g. by issuing easy read letters for appointments.
Sharing details of patients that did not attend appointments was also thought to be
important in order for these to be appropriately followed up, and it was discussed that IT
systems across the sector would need to link up to ensure data can be shared.
See Recommendation 3.
Recommendation 10 – There is a need to explore options related to linking up IT
systems across the sector to enable data sharing where possible to improve
service provision and planning.
Page | 37
10.2.4 Funding
Current threats to funding and a government reduction in spending were identified as
having a large impact on care. This includes losses of independent living fund and
funding of specialised packages in the home, and loss of funding for some patients due
to changes in classifications. Lack of clarity over who is responsible for funding when
someone is placed out of area was also identified, along with increased demands on
services with funding being reduced and an increase of people with
challenging/complex forensic issues.
10.2.5 Transition
Positive aspects to transition were discussed and identified which included the ability of
residential providers to give continuity from childhood through to adult life. Family
support such as increasing numbers of short breaks to support families, accessibility in
the mainstream were identified and the positive effect and opportunities for employment
in transition were also noted.
Current areas for development were discussed. These included the Education Health
and Care (EHC) plan which was implemented in September 2014, although more
information and knowledge is required for both professionals and parents in order to
develop these further. An increase in educational psychologist involvement in
supporting early intervention with robust outcomes monitoring was also discussed as an
area for improvement, along with a lack of Autistic Spectrum Disorder specific services
and support, especially for Asperger’s, at transition. The need to tie up school leavers
with opportunities for training and employment, and the need to be more aspirational for
young people using employment as a goal, was also highlighted as an area for
development.
10.2.6 Employability
Doncaster Vocational Training Unit was noted as accessible and continuously
developing and improving. A further strength in this area was the strong momentum
behind employment through partnerships groups and boards and more is starting to be
achieved as a result of this. ‘Project Search’ is currently providing internships with local
employers and feedback so far appears positive. It was however noted that this needs
to be expanded and pursued with the current model being replicated with other
companies to provide more opportunities. The need to increase the delivery of
employment outside of Social Education Centres was also highlighted as these centres
are currently reducing in numbers which will affect the number of opportunities
available.
Page | 38
See Recommendation 7.
10.2.7 Training
Good support for professionals and parents through courses and training was identified
as a current strength, along with the strong knowledge and skills of those professionals
providing specialist learning disability services. Some gaps however were also
discussed. These included the need to increase training provision with GPs, particularly
around identifying patients with learning disabilities in referral letters, and some
unavailability of training in CAMHS when it’s required. Changes in funding that could
impact on the resources and training opportunities going forward was also identified as
a risk.
10.2.8 Community Services
That there are now many people placed in supported living was identified as a current
strength in community services. Additional support and work with communities were
also noted as needing attention. This included the idea that aging carers in the
community are no longer able to provide the same level of support, and therefore
additional support would be required. The need to ensure a clear health action plan is
completed in the early stages was also noted as being beneficial to reducing the
number of emergency admissions in those with learning disabilities. Community culture
was discussed in relation to having a reactive or proactive approach to health and care.
Work with communities and carers to take a more proactive approach to health were
noted as a development.
10.2.9 Primary care
A number of strengths to primary care services were discussed which included the high
number of annual health checks being completed and the specialist training that is
currently offered to GP practice staff. The continuous improvement in the links between
GPs and specialist learning disability support was also noted, although there is further
work to be done in this area to continue to develop.
Page | 39
Appendix
Chart 1 – Population pyramid for Doncaster by five year band (ONS, 2012)
Chart 2 -Population Projections to the year 2020 by age bands (IPC, 2014)
10 8 6 4 2 0 2 4 6 8 10
0-4
5-9
10-14
15-19
20-24
25-29
30-34
35-39
40-44
45-49
50-54
55-59
60-64
65-69
70-74
75-79
80-84
85+
Percentage of the population Eng & Wales Male Eng & Wales Female
Doncaster Male Doncaster Female
65,400 66,100 66,400 66,900 69,200
26,400 25,400 24,100 22,900 21,900
39,100 40,600 41,500 41,700 41,500
38,900 37,100 36,300 36,200 37,100
43,800 43,800 43,900 43,700 40,600
36,800 37,000 38,100 39,500 41,000
28,500 30,200 31,400 32,300 32,700
24,500 25,400 26,200 27,000 28,500
0
50,000
100,000
150,000
200,000
250,000
300,000
350,000
2012 2014 2016 2018 2020
75+
65-74
55-64
45-54
35-44
25-34
18-24
0-17
Page | 40
Table 1– Percentage change between 2012 and 2020
Age band Change 2012 to
2020
0-17 +6% increase
18-24 -17% decrease
25-34 +6% increase
35-44 -5% decrease
45-54 -7% decrease
55-64 +11% increase
65-74 +15% increase
75+ +16% increase
Chart 3 - Life expectancy gap for males and females (PHE, 2014)
Chart 4 –Life expectancy for males and females by Doncaster Electoral Wards
(Doncaster Data Observatory, 2012)
70
72
74
76
78
80
82
84
20
00
- 0
2
20
01
- 0
3
20
02
- 0
4
20
03
- 0
5
20
04
- 0
6
20
05
- 0
7
20
06
- 0
8
20
07
- 0
9
20
08
- 1
0
20
09
- 1
1
20
10
- 1
2
Doncaster Male England Male
Doncaster Female England Female
Page | 41
Chart 5 – Comparison of healthy life expectancy between Doncaster and other Upper
Tier Manufacturing Towns (PHE, 2014)
Chart 6 – Rate per 1,000 pupils with a School Action Plus or Statement level need
comparing Doncaster and England (Department for Education, 2014)
68
70
72
74
76
78
80
82
LE in
ye
ars
74
76
78
80
82
84
86
LE in
ye
ars
57.3 58.0 58.2 58.3
59.6 59.9 61.2
61.8 62.1 62.1
52
54
56
58
60
62
64
Bar
nsl
ey
Do
nca
ster
Ro
ther
ham
Wak
efie
ld
Wig
an
Telf
ord
an
d W
reki
n
Sto
ckto
n-o
n-T
ees
No
rth
Lin
cs
Du
dle
y
N.E
. Lin
cs
HLE
in y
ear
s
57.1
58.7 59.4 59.6 59.9
61.0 61.5 63.0 63.6 64.1
52
54
56
58
60
62
64
66
Bar
nsl
ey
Telf
ord
an
d W
reki
n
Wig
an
Do
nca
ster
Ro
ther
ham
Wak
efie
ld
Sto
ckto
n-o
n-T
ees
No
rth
Lin
cs
Du
dle
y
N.E
Lin
cs
HLE
in y
ear
s
Page | 42
Chart 7 – Patients registered for a learning disability with a Doncaster GP (HSCIC,
2013)
Table 4 –Number and rate of patients registered for a learning disability with a
Doncaster GP (combining HSCIC, 2013 and IPC, 2014)
Number of
patients
registered for
Learning
Disabilities
Number per
1,000 patients
aged 18+
2007-08 1,046 4.3
2008-09 1,128 4.7
2009-10 1,213 5.0
2010-11 1,240 5.1
2011-12 1,295 5.3
2012-13 1,313 5.4
Chart 8 – Learning disability diagnosis rate for upper tier manufacturing towns
(combining HSCIC, 2013 and IPC, 2014).
10 12
5
1
18
9
17
4 1
22
0
5
10
15
20
25
Autism Moderate LD Severe LD Profound LD All LD
Pe
r 1
,00
0 p
up
ils
Doncaster England
0
1
2
3
4
5
6
2007-08 2008-09 2009-10 2010-11 2011-12 2012-13Lear
nin
g D
isab
ility
pat
ien
ts p
er
1,0
00
Doncaster CCG England
Page | 43
Chart 9 – Rate of people with learning disabilities on other disease registers with NHS
Primary Care (combining DMBC, 2013 and HSCIC, 2013).
Chart 10 – Patients registered with the RDaSH Community Health Team (RDaSH,
2014)
32%
27% 27% 26% 26% 23% 23% 22%
20% 18%
0%
10%
20%
30%
40%
12
75
99
52
72 68
0
40
80
120
CHD (>18yrs) Diabetes (>17yrs) Asthma (All age)
No
. pe
r 1
,00
0
Patients registered with LD All patients
47 66
132 135
316
0
100
200
300
400
2010 2011 2012 2013 2014 (toNovember)
Nu
mb
er
of
pat
ien
ts
Page | 44
Chart 11 – Learning disability clients aged 18 and above by Adult Social Care service
type (NASCIS, 2014a)
Chart 12 – Coverage of the GP Annual Health Check (IHAL, 2014)
Chart 13 – Coverage of cancer screening for people with learning disabilities,
comparing Doncaster to the England (DMBC, 2013).
0
200
400
600
800
2008/09 2009/10 2010/11 2011/12 2012/13 2013/14
Nu
mb
er
of
clie
nts
Community-based services Resitential & Nursing Care
0
25
50
75
100
2009/10 2010/11 2011/12 2012/13
%
Doncaster (% eligible) England (% eligible)
28%
66%
25% 27%
38%
26%
0%
20%
40%
60%
80%
Cervical smear Breast cancer screening Bowel cancer screening
Doncaster England
Page | 45
Chart 14 - Top causes of death for people with and without a learning disability (Glover
& Ayub, 2010)
Chart 15 – Median age at death for people with and without a learning disability (Glover
& Ayub, 2010)
Chart 16 – Community-based services used by learning disability clients (HSCIC,
2014b)
0%
20%
40%
60%
Re
spir
ato
ry
Cir
cula
tory
Infe
ctio
us
dis
ease
Ner
vou
s sy
stem
Oth
er s
ymp
tom
s
Co
nge
nit
al
Can
cers
Gen
ito
-uri
nar
y
Inju
ry
Dig
esti
ve
Learning disability population General population
10
35
38
53
56
65
80
0 10 20 30 40 50 60 70 80 90
Microcephaly
Cerebral palsy
Hydrocephalus / Spina bifida
Nerofibromatosis
Down's syndrome
None specific condition
No learning disability
Median age a death in years
Page | 46
Chart 17 – Clients receiving self-directed support or direct payments during the year
(HSCIC, 2014c)
Chart 18 – Clients receiving self-directed support or direct payments per head of
population (HSCIC, 2014c)
0
200
400
600
Mar-0
6
Mar-0
7
Mar-0
8
Mar-0
9
Mar-1
0
Mar-1
1
Mar-1
2
Mar-1
3
Mar-1
4
Nu
mb
er
of
serv
ice
use
rs
Home Care Day Care
Direct Payments Professional Support
0
100
200
300
400
2009/10 2010/11 2011/12 2012/13 2013/14
Lear
nin
g D
isab
iliti
es
dir
ect
p
aym
en
ts
0
50
100
150
200
250
2009/10 2010/11 2011/12 2012/13 2013/14
Bu
dge
ts p
er
10
0,0
00
Doncaster England
Page | 47
Chart 19 – Accommodation status of working age adults (18-64yrs) with a learning
disability known to services at the time of their last review (HSCIC, 2014d)
Chart 20 – Residents supported by the Local Authority in residential care and nursing
care at the 31st March each year (HSCIC, 2014e)
Chart 21 – People with a learning disability known to Adult Social Care and in paid
employment at least weekly (HSCIC, 2014f)
0%
25%
50%
75%
100%
2008/09 2009/10 2010/11 2011/12 2012/13 2013/14
% o
f p
eo
ple
kn
ow
n t
o L
A s
erv
ice
s
Settled Non-settled Unknown
0
90
180
20
05
/06
20
06
/07
20
07
/08
20
08
/09
20
09
/10
20
10
/11
20
11
/12
20
12
/13
20
13
/14
Nu
mb
er
of
resi
de
nts
wit
h le
arn
ing
dis
abili
tie
s
Residential Care Nursing Care
0%
2%
4%
6%
8%
2008/09 2009/10 2010/11 2011/12 2012/13 2013/14
% o
f th
ose
in e
mp
loym
en
t
Doncaster England
Page | 48
Chart 22 – Number of working age clients with a learning disability known to Adult
Social Care, by the number of hours worked (HSCIC, 2014f)
Chart 23 – Age of all known carers in Doncaster (i.e. not specific to carers of people
with learning disabilities (HSCIC, 2014g)
Chart 24 - Doncaster CCG spend per head of population on learning disabilities,
excludes social care expenditure by the NHS (PHE, Spend & Outcomes Tool)
45
0
5
5
0 to <4 hours / wk
4 to <16 hours / wk
16 to <30 hours / wk
30+ hours / wk
0
400
800
1200
1600
2005/06 2006/07 2007/08 2008/09 2009/10 2010/11 2011/12 2012/13 2013/14
Nu
mb
er
of
care
rs
Carer 18-64yrs Carer 65-74yrs Carer >75yrs
£106
£68
£55
£0
£30
£60
£90
£120
09/10 10/11 11/12
Doncaster Manufacturing Towns England
Page | 49
Chart 25 – Doncaster Council gross annual expenditure and spend per 10,000 for
people with learning disabilities aged under 65 years of age (HSCIC, 2014i)
Chart 26 – Doncaster Council spend per person per week for residential and nursing
care (specific to learning disabilities) and home care, direct payments and day care
(generic to all service users) (HSCIC, 2014j)
£0
£200
£400
£600
£800
£1,000
£1,200
£1,400
£0
£10m
£20m
£30m
20
05
/06
20
06
/07
20
07
/08
20
08
/09
20
09
/10
20
10
/11
20
11
/12
20
12
/13
Spe
nd
pe
r 1
0,0
00
po
pu
lati
on
Gro
ss a
nn
ual
exp
en
dit
ure
Donc. £'s Millions England £'s per 10,000 Donc. £'s per 10,000
£1,289
£154 £189 £158
£1,341
£214 £213 £217
0
400
800
1200
1600
Residential andnursing care for LD
Home care Direct payments Day care
£'s
pe
r p
ers
on
pe
r w
ee
k
Doncaster England
Page | 50
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