Review of the NHS Eyecare Services Programme, Low Vision Associate Pilot SitesJanuary 2007

Pritti Mehta, RNIB

ContentsAcknowledgements1. Executive summary1.1 The main findings1.2 Longer term review recommendations2. Introduction2.1 Low Vision3. Method and approach4. The review findings4.1 Background4.2 Main aims and objectives of the pilot projects4.3 Defined method of approach4.4 Structure and organisation4.5 Patient pathways4.6 Multi-sector involvement4.7 Patient involvement4.8 Professional feedback 4.9 Service user/patient experience4.10 Choice, accessibility, patient centred care and integration of services4.11 User and professional communication strategy4.12 Training provided during pilot projects4.13 Knowledge sharing4.14 Feasibility and future sustainability issues5. References

Acknowledgements

I would like to thank all the project managers and staff members involved in the pilot projects for providing relevant documentation and giving up their time to be interviewed for this project.

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1. Executive summary

The NHS Eyecare Services Programme was set up as part the NHS Improvement Strategy to develop and improve national eye care services. It consists of 4 pathways: cataract; glaucoma; age-related macular degeneration (ARMD) and low vision. The low vision pathway offers a multi-disciplinary approach – involving collaboration between health, social and voluntary sectors – towards the delivery of clinical and non-clinical low vision services. Its main aims are: to develop an integrated low vision and rehabilitation

assessment pathway (by an optometrist or dispensing optician (trained in low vision) and a rehabilitation officer respectively)

to provide services locally within community settings to involve patients in the setting up and on-going evaluation of

the service.

The pathway was originally piloted across four sites, and has since been rolled out across a further eight associate sites. – These associate pilot projects are currently in different phases of development. Some have evolved in to mainstream services, while others have yet to start seeing patients.

This short-term review, funded by the Department of Health, was undertaken to report on the NHS Eyecare Services low vision associate pilot projects. Its aim was to inform the future development and delivery of low vision eye care services.

The key objectives were to:

1. Summarise the background, aims and objectives underpinning the development and delivery of the NHS Eyecare Services low vision associate pilot projects.

2. Review the structure, organisation and patient pathways highlighting any variation in approach and delivery.

3. Consider the level of health, social, voluntary sector, and patient involvement, identifying any key opportunities and challenges created by working across such partnerships.

4. Review professional and patient experience across the pilot projects.

5. Where possible, comment on the level of service integration, patient centred care, choice and accessibility offered by the pilot projects.

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6. Summarise user and professional communication strategies implemented across the projects.

7. Explore the type of training provided and review how knowledge had been shared across the Eyecare Services low vision projects.

8. Explore feasibility and sustainability issues.9. Apply review findings to inform and improve future development

and delivery of NHS low vision eye care services.

The research methods were a literature survey, examination of project materials, consultation with project managers, and, where feasible, key staff members involved in the pilot projects.

1.1 The main findings

Associate low vision projects have been piloted across a number of locations selected to give a range of presenting issues. These represent rural, semi-rural and urban environments, and also include areas with a higher than average national prevalence of elderly people, chronic illness and economic deprivation.

While all projects have developed a multi-agency approach towards the delivery of low vision services and share a common set of aims and objectives, they each demonstrate significant variation in delivery and approach. This results, partly, from their response to local geographical differences, but also due to the variation in health, social and voluntary sector emphasis and input.

Service models include: "one-stop-shop" low vision and rehabilitation clinics based in local voluntary society premises that also include a resource centre; optometry based satellite low vision and rehabilitation clinics; and, separate low vision and rehabilitation services delivered from different locations.

Subtle variations in the pathway also exist, such as, in one project, the inclusion of a home based pre-rehabilitation assessment prior to the clinic assessment. There are also differences with respect to professional participation, such as in the involvement of an out-reach worker to integrate services between low vision and more general voluntary services, or an

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eye clinic liaison officer to help provide information, emotional support and co-ordinate appointments.

The elderly adult population, which represent the majority of blind and partially sighted people, are the main focus of these pilot projects. Services have been generally designed to respond to this specific client group's health and social needs. One project, however, has also piloted a specific children's pathway, which it has developed through partnership between the health, social and education sectors. This pathway is provided in a specialist residential college for blind and partially sighted students.

The projects demonstrate significant innovation such as: in the integration of low vision and rehabilitation services with voluntary sector services; the conversion of a community building into a purpose based clinic; the training of nursing and residential home staff in order to raise awareness about low vision; and, in the development of volunteer programmes.

Significant opportunities and challenges have been reported through the multi-agency approach, and value of the support in service delivery from the voluntary sector is demonstrated. Patient involvement is also a key characteristic of these pilot projects and again opportunities and challenges have been realised.

Multi-sector staff involved in the pilot projects emphasise the value of low vision services and highlight the wider issues with respect to low vision. Their feedback confirms the devastating consequences of low vision such as the loneliness and depression that is experienced, the need for early intervention and holistic approaches that include information and emotional support, particular issues with respect to the elderly and the need to raise awareness among user and professional groups.

Patient experience of the pilot projects has been positive. Comments from patient satisfaction surveys include the following:"the whole package is wonderful""haven’t been able to see for years, its given me confidence""the support is a life line – had difficulty dealing with social services - now there is plenty of support through the society,

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particularly in finding friends""most thorough eye examination ever had""feel that we are being valued."

There is thus strong indication of improved opportunities and outcomes for patients, and evidence of improved waiting times, early intervention, integration of services, and provision of patient centred care. Equality of access is however, still a key concern, particularly with respect to minority ethnic groups and people with learning disabilities. Children’s services are also under-developed.

A range of user and professional communication strategies have been developed through the programme, however professional consultation suggests that this will require an ongoing commitment and is likely to depend on a national strategy.

Knowledge transfer between projects is considered to be effective through the co-ordination of national meetings. However improved communication through the web is recommended.

Main factors reported that are likely to present challenges to the future sustainability and development of the programme are: PCT reorganisation; insufficient resources; lack of professional awareness; barriers within professional community; and the national shortage of rehabilitation officers.

1.2 Longer term review recommendations

Over a longer-term period, this report recommends the following investigations to further support the future development and delivery of low vision eye care services:

Identification of the main referral routes and waiting times across the associate low vision eye care pilot projects.

Comparative assessment and evaluation of the different service models and patient pathways that have been piloted.

Exploration of the level of integration between primary and secondary health services.

Further piloting of children’s services in mainstream environments, and extending of low vision services towards

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people with learning disabilities and people from ethnic minorities.

2. Introduction

The NHS Eyecare Services Programme was launched in 2004 and is in line with wider NHS policy change towards the development of accessible, community based, patient centred services. Set up to help manage the changing population demographics – the ageing population – the programme consists of 4 eye care pathways: cataract, glaucoma, age-related macular degeneration (AMRD) and low vision.

2.1 Low visionIn March 1998 a wide cross-section of organisations met to consider the state of low vision services in the United Kingdom. The group highlighted a number of problems, such as: the fragmentation of services for people with low vision; a lack of a multi-disciplinary approach; and wide disparity in access to, and the quality of, services in different parts of the country. A national framework was prepared by a working group to address these issues and to set out recommendations for future service delivery. Their first report, which sets outs proposals towards the low vision pathway, was published in April 2004.

The low vision pathway offers a multi-disciplinary approach - involving collaboration between health, social and voluntary sectors – towards the delivery of clinical and non-clinical low vision services. Its main aims are: to develop an integrated low vision and rehabilitation assessment pathway, to provide services locally within community settings and to involve patients in the setting up and on-going evaluation of the service.

In the proposed pathway low vision and rehabilitation assessments are carried by an optometrist or dispensing optician trained in low vision, and a rehabilitation officer, respectively. The rehabilitation assessment generally considers three key areas: orientation and mobility, daily living and communication needs. The patients also have the opportunity to take away low vision aids, such as magnifiers, and there is opportunity for follow up and home visits.

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Referral can be from health, social sectors, and sometimes from voluntary and self-referral, and patients may have a low vision Letter (LVL), a referral for visual impairment (RVI), or certification of visual impairment (CVI).

The low vision pathway was originally piloted across four sites. These were Gateshead, Barking, Dagenham and Havering, Sutton and Merton and Wandsworth and Waltham Forest. It has now also been extended across a further eight associate sites. These are Brighton and Hove, Hartlepool, south west Lincolnshire and Northumberland, Morecombe Bay, Devon, Worcester and New Forest.

The University of Birmingham has conducted an independent evaluation of the original pilot projects. The main findings will be presented in 2007 at the Delivering the Vision conference.

This report provides a review of associate low vision pilot projects and its main objectives are presented on page four. The report considers all projects except the Devon pilot, which at the time of this review was experiencing delays, and subsequently had difficulties in providing the relevant information.

3. Method and approach

A focused literature survey.

Examination of associate low vision eye care pilot project documentation, including business cases; project initiation documents; and highlight and project reports. The aim was elicit information about each project, and level of social, voluntary and patient sector involvement. These documents also provided evidence relating to staff and patient experience, and baseline information relevant to the other objectives highlighted above.

Consultation with project managers or lead contacts across the pilot sites – via site visits – to further inform understanding of key issues and gain greater insight into staff and patient experience of the programme.

If time was permitting these were followed by semi-structured interviews with key staff members across the pilot projects.

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Observation of an adult and child low vision and rehabilitation assessment at Morecambe Bay and Worcester respectively.

4. The review findings

4.1 BackgroundAssociate low vision projects have been piloted across eight different geographical locations. These include: Kendal, Hartlepool, Northumberland, south west Lincolnshire, New Forest, Brighton and Hove, Devon and Worcester. The locations represent rural, semi-rural and urban environments, and also include areas with a greater than average prevalence of elderly people, chronic illness and economic deprivation. Consistent with national findings, local service provision was found to be fragmented and there was evidence of inequality in access.

Hartlepool for example is characterised with areas of high rates of chronic illness and economic depravation, and low vision needs are considered to be significantly underserved in its regions. There is also evidence of long waiting times and patients having had to travel.

Northumberland Care Trust has the lowest population density of any English county. Service delivery in these rural parts is considered challenging with low vision services thought to be no exception. There has also been evidence of patients presenting in optometry practices requiring non-optical services, which were not locally available. Waiting times at the city hospital have also been particularly long with travel to a hospital outside of the area often leading patients to decline onward referral.

The Morecambe Bay pilot has focused on adults (over 18s) living in the rural area of South Lakeland where the current service was considered in need of improvement and development.

The New Forest pilot is set in a predominantly rural area with a population of 171,000. Over 23 per cent of this population are over 64 years. This is high in comparison with the national (UK) figure of 16 per cent. Department of Health figures from 2003 showed people over the age of 64 to make up 77 per cent of the registered

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blind and partially sighted population in the UK. There was also evidence of significant unmet need for low vision services.

In Worcestershire, low vision services were thought to be patchy with referral pathways that were neither efficient nor timely. User feedback had also indicated that there was significant need for improvement.

4.2 Main aims and objectives of the pilot projectsThe following aims and objectives, which underpin the original low vision pathway model, are common to all the pilot projects:

To develop an integrated, multi-disciplinary, low vision and rehabilitation pathway.

To provide services locally within community settings, thereby reducing the need for people to travel outside their community to obtain low vision services.

To include a domiciliary service (where appropriate). To design a low vision service with equality of access for all. To involve clients in the setting up and on-going evaluation of

the service, making it a user centred service based on the needs of the individual.

Within this framework there is of course variation across each project in its approach and delivery. There is also innovation, such as in the utilisation of the voluntary sector and towards the raising of low vision awareness across nursing and residential homes. The key characteristics of each pilot project are outlined below highlighting some of the main variations. South west LincolnshireSouth Lincolnshire Society for the Blind worked in partnership with Lincolnshire PCT, Lincolnshire County Council and Lincolnshire Visual Impairment Services (LVIS) to pilot a low vision service for adults living in Grantham and Sleaford areas.This pilot, which has now evolved into a mainstream service, was based at the South Lincolnshire Society for the Blind. Its chief aim was to be fully integrated between the low vision service, the rehabilitation service, and the local voluntary society, enabling a seamless, one-stop shop for all aspects of low vision support. One of its main objectives was to also develop a patient database and recall system in order to ensure patient re-assessments were carried out (where necessary) appropriately.

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The Morecambe Bay Integrated Low Vision PilotThis pilot involved partnership between the South Lakes Society for the Blind, Morecambe Bay PCT and Adult Social Care Directorate. It was again based in the voluntary sector premises, but the project also ran a separate clinic from a local health centre in Windermere. The focus again was on adults (over 18s), living in the rural area of South Lakeland where the current service was considered to be in most need of improvement and development. Kendal and Windermere and their rural communities were chosen initially for this project. Again, as in the south west Lincolnshire project, its main purpose was to be fully integrated between the low vision service, the rehabilitation service, and the local voluntary society.

Northumberland Sight Enhancement Service (NSES)Northumberland Care Trust is currently working in partnership with local optometrists, Northumberland County Blind Association and the RNIB to pilot a low vision service for the residents of Northumberland, to be known as Northumberland Sight Enhancement Service (NSES). Northumberland is predominantly rural, and as already stated, it has the lowest population density of any English county. To address these challenges, the pilot has developed four community based satellite services for people with sight impairment, thereby reducing the need for extensive travel in order to access services. The project has also planned to create an electronic management plan for each service user.

HartlepoolHartlepool PCT is currently working in partnership with Hartlepool Borough Council, RNIB, City Hospital Sunderland and Action for the Blind People to pilot improved low vision services for the people of Hartlepool. Although its main focus is on the adult population, it also plans to eventually to improve the provision of services for people with learning/physical disabilities (potentially year 2). Its main aims are to improve: the quality of services to visually impaired people in nursing and residential care; and the level of training available to both professional and non-professional groups that provide advice and support to the visually impaired. The project has also planed to integrate low vision care as part of the first locality team developments.

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Brighton and Hove The Brighton and Hove City PCT worked in partnership with the Sensory Impairment Team of the local Social Services, to pilot an integrated low vision and rehabilitation services for the people of Brighton and Hove city. This project represents yet another example of a pilot that has now evolved into a service. The most innovative development in this project was the conversion/renovation of part of a community day-centre into a new one-stop low vision and rehabilitation clinic, which consisted of two consulting rooms, a fully equipped training kitchen plus a waiting area. The project also aimed to provide access to appropriate information and advice about the services available for both health professionals and users.

During the pilot period Bright and Hove City PCT was also piloting a new ARMD pathway. The provision of low vision services within a community based setting was considered an essential component of this pathway. As the ARMD pathway developed, the need for community based low vision services that could also be available to people who were not part of the ARMD pathway was realized to give equity of access.

New ForestThe New Forest project was identified as a potential associate site and involves partnership between the Sensory and Strategic Team in Hampshire, Optometry Services and the PCT. Given its rural location, the main aim was to provide a locally delivered, accessible service through the provision of satellite clinics and rehabilitation services in three areas. The project also aimed to create a volunteer programme that would make contact with people shortly after their assessment by phone or home visit, to find out how they were coping with issued equipment and to support re-referral to the service, if necessary.

WorcesterWhile the main focus of all other pilot projects was the adult population, and particularly the elderly adult population, the Worcester pilot aimed to develop service models that catered specifically for the needs of discrete groups including children and young people (and people of working age groups). Among its key objectives was to establish a seamless care pathway incorporating the NHS, Worcestershire County Council’s Social Care and Education Services and the voluntary sector. It is

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based in the establishment of a dedicated assessment suite in an existing property on the New College campus, which is an educational institute for children who are blind or partially sighted.

4.3 Defined method of approachThe method of approach for the management and control of these projects was PRINCE2, which provided structure, planned implementation, monitoring and evaluation.

4.4 Structure and organisation of the pilot projectsClearly, there are shared similarities, but also significant differences across the pilot projects. With respect to the physical structure and the organisation of the pilot projects, the main differences are summarised below.

As indicated already the south west Lincolnshire and Morecambe Bay projects have run similar "one-stop-shop" low vision and rehabilitation assessment clinics from their local voluntary society premises. Facilities include an on site resource centre and additional services such as "talking newspapers" and "talking books" which might not have been available in a typical hospital setting. The location of these projects has also provided opportunities for signposting and participation in social activities.

The Brighton and Hove, and Worcester pilot projects have also offered "one-stop-shop" based facilities, where the low vision and rehabilitation assessments are carried out jointly, under one roof. Additionally, the New Forest pilot project plans to mirror this approach, but by offering three satellite low vision and rehabilitation clinics. The Northumberland pilot also offers satellite clinics (four), although it differs slightly, in that it offers an initial rehabilitation assessment which is carried at home. However, the most divergent structure, perhaps, is that of the Hartlepool project where the low vision and rehabilitation assessments are carried out separately across different premises – in one of four community based optometry practices, and a Sight Loss Support Centre based at a local voluntary organisation, respectively.

4.5 Patient pathwaysWith respect to the patient pathway there is convergence across all the pilot projects in that they each offer a multi-disciplinary assessment of low vision and rehabilitation needs. There are,

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however, some significant points of variation, both in terms of the steps within the pathway, and with respect to the type of professional involvement. The following paragraphs illustrate some of the main differences.

In the low vision pathway model as proposed in the First Report of the National Eye Care Services Steering Group iii, the patient is first seen by an optometrist for the clinical part of the low vision assessment and then by a rehabilitation officer to assess rehabilitation needs. (The rehabilitation assessment generally considers three key areas: orientation and mobility; daily living; and communication needs. There is also the opportunity to take away low vision aids, such as magnifiers, and for follow up and home visits).

This model has been applied in the Brighton and Hove project, where patients are offered a dual appointment with a dispensing optician (specialising in low vision) and rehabilitation officer. In this pathway, however, all referrals are initially co-ordinated via an eye clinic liaison officer (ECLO), and patients are also provided with an information pack. Domiciliary visits are sometimes offered and there is opportunity for follow up advice in the home.

Patients of the Morecambe Bay pilot also begin their consultation with a low vision assessment carried out by a dispensing optician (specialising in low vision). However the patient is then seen jointly by a rehabilitation officer, but more uniquely, by an out-reach worker. Follow up is carried out as needed (60 -70 per cent)

The out-reach worker’s general role is to take the advice centre out to people who can’t reach it. They are usually the first point of contact and works closely with adult social care where they can usually refer if a person is found to be in need of extra services. The out-reach worker also runs a group three times a year looking at issues such as registration, mobility services, how to use equipment properly as well as on benefits and concessions; and eight support groups. For those that do not wish to join, they also co-ordinate a network of volunteers that would make home visits. The specific low vision role involves taking equipment out and the loaning of magnifiers in Kendal and extended areas. This has improved access to low vision aids and has enabled more people to be seen from a wider spectrum.

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Clearly, the involvement of an out-reach worker during the low vision pathway is thus likely to generate additional benefits for the patient including integration between low vision services and more general voluntary services.

In the south west Lincolnshire model the patient is initially contacted via telephone by a low vision co-ordinator to book the appointment. On arrival, however, before being seen by the optometrist, the patient first receives a pre-assessment of rehabilitation needs with a rehabilitation officer. Following the low vision assessment with the optometrist the patient is again seen by the rehabilitation officer – for training and assistance on issues such as lighting and CCTV. The project manager’s description of this pathway is provided below:

"People need time to discuss general issues around sight loss and problems such as those associated with mobility, reading and light perception, prior to their clinical assessment. Then the optometrist can look at certain areas during the examination and tailor the service. It is important that the service is not rushed, so that the right diagnosis is made and the prescription is correct, and that there is time to talk to patients about the clinical condition and recommend follow up appointment. The person - then has knowledge about aids, magnifiers, coloured glasses, writing aids etc. There is then time with the rehabilitation officer – so that the person can get the maximum usage/ use properly their aids. It is essential that the process goes through in this way. Then they can go into the resource centre and look at literature … this is the full package of a service that is ongoing."

In the Northumberland pilot social care, low vision, and health registers are cross-referenced to pool information about particular patients. The patient pathway is similar to that of south west Lincolnshire in that there is a pre-rehabilitation assessment, but, as already highlighted, it is carried out at home. This provides opportunity for on the spot solutions with regard to independent living, agrees goals to be met, and enables the rehabilitation officer to develop a care plan, and arrange for other help and support as appropriate. Some tasks may also be delegated to rehabilitation assistant staff from Northumberland County Blind Association (NCBA). The patient then visits the clinic, where the rehabilitation officer advises the optometrist regarding areas of difficulty. The optometrist then carries out the low vision assessment and advises

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on prescription of magnifier(s) (where applicable). Finally, the rehabilitation officer demonstrates use of magnifier(s) and issues from stock held in the clinic or makes a special order. On receipt of equipment either the rehabilitation officer will instruct patient or the task is delegated to the NCBA’s rehabilitation assistant staff with a care plan to follow.

As already indicated the Hartlepool projects provide rehabilitation and low vision assessments from different premises, and patients can access the services in any order. The Sight Loss Support Service based at a local voluntary society provides the rehabilitation assessment, with involvement of one rehabilitation officer and two voluntary sector staff. When a patient is referred to the service they are automatically registered with social services. Low vision assessments are carried out across four community optometry practices.

Finally, in the Worcester New College children’s pathway, the student support liaison officer provides a link between the low vision clinic and the College. Their role is to identify and prioritise children for referral to the clinic. There, they receive an initial rehabilitation needs assessment with a specialist paediatric rehabilitation officer, which is followed by a low vision assessment with a specialist paediatric optometrist. This is then followed by an additional assessment with the specialist paediatric rehabilitation officer. The student support liaison officer and the specialist paediatric rehabilitation officer may also work together to develop a specialist school package: e.g. using magnifiers and mobility training. After the clinic-based assessment, the student support liaison officer feeds information back to the College. The opportunity for follow up and assistance in developing fluency of use of low vision aids is also potentially available.

4.6 Multi-sector involvementSelf-evidently, all projects have developed multi-agency approaches towards the delivery of low vision services. In most cases, this has included partnership between health, social and voluntary sector organisations.

Such partnerships have challenged professional boundaries and highlight the value in multi-agency working. Reported opportunities include: promoting better understanding of low vision services and increasing awareness of each partners’ role and involvement;

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gaining a broader knowledge base and perspectives; and in promoting closer working relationships, e.g. between rehabilitation officers, optometrists and volunteers. Some quotes are presented below:

"It enables the exchange of knowledge between different sectors and the building of mutual respect.""Optometrists are very experienced, but now they are aware of the whole experience.""Social services recognises the pilot as providing the opportunity for early intervention.""Working together allows for the better utilisation of services and avoids duplication.""Working together – works. We are all united by a common cause and passion."

Of course, challenges were also reported, such as with particular organisations pulling out of projects, or being unable to meet their project commitments. Such challenges have reportedly had knock on effects on relationships between respective partner organisations, and have created significant barriers. Less dramatic, but equally important, were issues such as getting everyone together, communication between different partners and in being able to understand different partners’ perspectives and how this impacts on their commitment to the project.

4.7 Patient involvementThere has also been significant user/patient involvement and consultation across the programme, which has informed its development and delivery. Reported opportunities include: allowing service users and professionals to work together by removing the service user to professional boundaries; enabling service models to be developed in response to user needs; and in providing opportunities to evaluate services.

In the Hartlepool project, for example, a focus group held with patients during the developmental stages, found significant value in the community based approach, as patients would not have to attend the hospital unnecessarily and in the potential for re-assessment within the service model. The group felt, however, that while an integration of services may be desired some people might not wish to accept help immediately. It also raised issues and concerns around the uptake of services.

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In the Worcester pilot, two discrete groups – one consisting of adults (including older people) and the other of children and young people – had been formed and consulted during the project. Their views, reportedly, had fed into the design and layout of the various rooms that have been converted or adapted to house the service.

Unsurprisingly, however, there were also a significant number of challenges reported with this approach. In the Northumberland pilot for example, where patient involvement has taken shape through a horizon event, quarterly Low Vision Services Committee Meetings, the Project Steering Group, and in volunteers to test out the pathway, it was found that there was need for a wider representative view. This feeling was also echoed in the New Forest pilot, where although user and professional partnership was considered necessary to ensure that the project was developed to meet user needs, and not the professional view of user needs, challenges were reported in trying to find the 'right service user', such as an elderly person, or someone that could think analytically, or someone that was unable to access the service. There were also concerns about service users sometimes getting the "wrong end of the stick."

4.8 Professional feedbackDuring some of the sites visits it was possible to consult with key workers involved in the development and delivery of the pilot projects/services. These included optometrists and dispensing opticians, rehabilitation officers, support workers and low vision co-ordinators. A number of common issues and themes emerged through their feedback. These included: the devastating consequences of low vision such as loneliness and depression; the need for early intervention and holistic approaches that include information and emotional support; issues with respect to the elderly; and the need to raise awareness among user and professional groups. Their feedback also indicated how some of those issues/needs were being met through the pilot projects. Here are some examples of their comments.

Eye clinic Liaison Officer (Brighton and Hove) "The pilot has taken low vision out of the hospital context – and

made it more community based." "Originally there was no space, and low vision aids were posted

out. This raised issue around battery-use. There was also no

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system to provide information. We now have a mechanism (through the eye clinic liaison officer) to provide patient information and help regarding social needs. We can help to build confidence and also link people up with other organisations."

"We see a lot of loneliness, depression and people that are suicidal. It’s terrifying to loose one’s sight...particularly with MD [macular degeneration]. When you’re elderly - it’s usually the last straw."

"Many patients – don’t know their diagnosis. Macular degeneration for example is very common but awareness is low. However, patients are now receiving more information."

"We need to raise profile among health workers and particularly GPs of specialist rehabilitation services."

Low Vision Co-ordinator (south west Lincolnshire) "There are several age-related problems. Patients require more

levels of help particularly in getting them through the door. There is also a significant time commitment associated with this."

"One of main the challenges associated with the elderly is dealing with other family members. Filling the 9am appointments is also difficult because elderly people usually find it hard to get up early in the morning. Missed appointments are usually due to health reasons."

Rehabilitation Officer (Morecambe Bay) "When a patient is seen by optician/ophthalmologist – they are

usually told that there is nothing that can be done. There is also no consideration of the spectrum of blindness."

"There are also significant issues around ophthalmic care and patient information. The patient usually can not read and this raises issues around access. The pilot enables early access to information and the ability to keep re-accessing the service."

"Prior to the pilot, rehabilitation was post registration. People would normally wait until they had had a medical assessment before they would consider non–medical intervention. This process, however, could take up to 2 years."

"Now [with the pilot] we are picking people up at earlier opportunities. There is also the chance to review existing patients."

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"Links with society for blind allows for the identification of gaps and the forging of better links. We also find people are happier to come through a local society."

Dispensing Optometrist (Morecambe Bay) "Clinicians often say that there is very little that can be done. In

fact patients usually have three negative experiences. One, their vision has dropped. Two, the optician can provide no new spectacles and refers them to the hospital. And then three, the hospital says that there is nothing that can be done."

"During registration people are usually shocked/devastated." "I’ve always seen low vision as an holistic service providing

emotional support and counselling. It is to facilitate service users to look forward, not back."

"Low vision services can help to build confidence, generate hope, and provide positive encouragement towards the use of low vision aids. It is about increasing people’s motivation and dealing with the psychological impact of low vision. There are many things happening and a lot of time is needed to meet these needs."

"How you say something can really impact … It needs valuable communication skills. Low vision support involves 80 per cent communication and good psychological handling skills and 20 per cent other. It is about building trust and enabling patients to share more information."

Optometrist’s perspective (Northumberland) "Low vision is the poor stepdaughter – it has low priority." "The hospital does not consider rehabilitation as a treatment

option. Patients are often told that there is nothing that can be done. They then drop out of the system and can go from being partially sighted to blind. There is a need to develop a more holistic approach."

"Optical input is only a small element of the low vision services. Most optometrists are badly informed about rehabilitation needs and think that we don't need a low vision service."

"The strength of this pilot is that we can sometimes see a patient identified with low vision, and then channel them to rehabilitation."

Rehabilitation Officer (Worcester) "The biggest problem is around follow up - as there is

insufficient time. Most kids however are very aware of their

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situation. They are confident, and follow up is not always necessary."

"In terms of rehabilitation input, there is a need to decide how to maximise the role of the rehabilitation officer. Could the student support liaison officer carry out this function?"

"The college is good at supplying resources that are needed. It is about developing skills for the future."

4.9 Service user/patient experienceAt the time of this review patient/service user satisfaction surveys had been conducted across four of the pilot projects. Here is some of the feedback, which in the majority of cases was very positive.

Morecambe Bay "The whole package is wonderful." "…Haven’t been able to see for years, it's given me

confidence." "The support is a life line: had difficulty dealing with social

services: now there is plenty of support through the society; particularly in finding friends."

South west Lincolnshire "'Most thorough eye examination ever had." "Ability to talk in an open manner." "Feel that we are being valued."

Hartlepool - Sight Loss Support Service "The staff at the blind welfare were excellent." "They explained the service and the equipment on offer and

introduced many things that would help me." "…it was a relaxed atmosphere and I was shown how

everything worked so I could understand it." "The one-to-one conversation made me feel someone was

caring about my predicament."

Hartlepool - Community Low Vision Service "…it was very good – Mr X was very kind." "I was very satisfied with the excellent services. Many options

were explained but unsuitable for my personal use."

Brighton and Hove "Very satisfied with staff and facilities." "Information about visual aids & tax allowance mentioned."

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"...lots of info, info about St Dunstan (a local voluntary organisation)."

"Very supportive and understanding." "No waiting, clean and tidy rooms, happy staff." "All service were excellent." "Left feeling very confident." "Bright and well lit, good atmosphere."

4.10 Choice, accessibility, patient centred care, and integration of servicesUnderstanding how and to what extent the projects deliver choice, and accessible, patient centred and integrated services, will be an ongoing activity, requiring careful evaluation. However important staff and patient feedback has already been gained with respect to these important issues. Here we provide a summary of the key findings.

Increased opportunities for patients are reported across the associate low vision eye care programme. The Morecambe Bay pilot indicates, for example, that waiting times have been significantly reduced and this experience is echoed across a number of other pilot projects, including south west Lincolnshire and Brighton and Hove. Several pilots have also said that while there used to be limited joint working between health and social services, and that referrals to low vision rehabilitation services were only made when a person was registered as being blind or partially sighted, people were now being picked up much earlier and being referred.

Staff at the Morecambe Bay pilot described their project as offering an integration of services: a complete service. It was also thought that having the services all under one roof increased opportunities for patients, and that they seemed much happier attending a local society rather than a hospital setting. Such sentiment, which is also reported across south west Lincolnshire, Brighton and Hove and other pilot projects, is echoed in the patient feedback.

The New Forest also reports that greater patient-centred care is likely to be offered through opportunities generated by the volunteer programme and facilities such as the league of friends. Patient-centred care is also considered to be offered particularly with respect to the time spent on each individual.

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Several pilots have also indicated that previously aids were sent through the post and the choice was limited. Now reportedly, this has significantly improved and there is opportunity for re-appointment, information and emotional support.

The Hartlepool project reports however that as the service runs its low vision and rehabilitation services from different locations there are likely to be issues with respect to service integration and that these will need constant attention. The New Forest project also reports that integration will depend on more fundamental issues such as overcoming boundaries in systems and procedures, funding, politics and clinical/social models of disability.

With respect to patient choice, the Hartlepool project reports that this has been increased through the provision of four optometrist practices, thus providing more options and better access. However, the New Forest project reports that even with the potential provision of different satellite clinics, patients referred through a hospital setting are still likely to choose a hospital based service.

With respect to physical access, Morecambe and south west Lincolnshire projects have highlighted mechanisms such as a sight action bus or a voluntary care scheme, to help people with mobility problems or travel difficulties, to get to and from their premises. Other projects have however reported difficulties, or that these were issues still in need of development and improvement.

In terms of reaching particular groups such as ethnic minorities and people with learning disabilities, all projects were significantly undeveloped, although the Hartlepool project was planning to develop services models for people with learning difficulties in the second year of its pilot. Children’s services were also in need of development.

Finally, one of the projects had also indicated that its service crossed many boundaries and enquiries were frequently made from people outside of its operating area. It argued that due to lack of resources it had had to scale down its service area and that it is was acutely aware of significant unmet needs in its near vicinity. While it had the capacity, it did not have the resources available to extend its services. It highlighted that it therefore had to operate on a postcode lottery basis.

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Integration between primary and secondary careAlthough the issue of integration between primary and secondary care has not been considered in any detail in this review, and is a recommended area for future investigation, here we highlight the experience reported across three projects, which indicate success and failure towards engaging secondary and other health services.

South west LincolnshireA patient with Macular Degeneration in right eye had been referred by hospital to the low vision service. By the time of the low vision assessment, the patient had also developed macular bleeding in the left eye. Due to the relationship between the hospital ophthalmic service and the low vision service, it was possible to fast track re-referral to the hospital. The patient was re-referred as an emergency.

Additionally, the hospital service has recognised that there is a significant level of unmet need for low vision services and is able refer directly to the low vision service. This is considered to highlight the success of service and its ability to build relationships with secondary care.

NorthumberlandThe Northumberland pilot has identified a person with previously undiagnosed Charles Bonnett Syndrome which causes hallucinations. This has led to the development of links with mental health services. Mental illness can impact across a range of eye conditions.

WorcesterThe Hospital had not recognised the college as operating a parallel service, which would work along side the hospital eye care service. It also had significant concerns about the quality of the low vision service. As a result, hospital referrals to the low vision service were considered unlikely.

4.11 User and professional communication strategyProject managers were also consulted about their approaches towards user and professional communication. This found that with respect to the user a number of projects had developed strategies through, TV, radio, local press and monthly newsletters. Some projects had also tried to raise user awareness through social

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clubs, their local MP and by targeting (with leaflets) local optometrist practices, GP surgeries, nursing homes, social services, and relevant voluntary sector organisations. At the time of this review, the Worcester and Northumberland pilots were still in the process of developing their project information. The Worcester project however had indicated that its user communication strategy was being phased, so as to limit the number of patients in the initial stages of the pilot.

Most projects had also provided a range of patient information. Brighton and Hove had a specially developed information pack, while the other projects had provided leaflet information on eye conditions (often obtained from organisations such as RNIB and Macular Disease Society) and other relevant information regarding benefits, registration and services. At the time of this review, however, the New Forest project was unclear about what patient information it was going to include. It was currently looking at the other initiatives to see whether they could be integrated into project/programme.

Most projects had also developed communication strategies towards professionals, by targeting local optical committees; occupational therapists, consultants, nurses, volunteers and social workers in hospitals; and patient and nursing groups.

The Hartlepool project has taken this a step further by offering professional training programmes to raise awareness about sight loss, and low vision services. They have been open to nursing and residential home staff, opticians, and receptionists, and also to GP practice staff, community nurses, and rapid response teams. The programme, which also provides communication skills and information about falls, is carried out at the Blind Welfare Association. It is run once per month, and at the time of this review it had so far seen over 77 people from 55 nursing homes and was fully booked until December 2006. While information packs had been delivered to every nursing home in the locality (22), knowledge had reportedly also spread by word of mouth. Feedback from individuals attending these training courses has been very positive, and examples of comments are provided below. Also, as a result of Hartlepool’s project work around falls, members of the team have been asked by the Falls Rehab Unit to give talks to patients on "Falls Day". The project has also managed to incorporate general eye information into a falls leaflet.

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Feedback from individuals that attended the Hartlepool professional training courses:

"Very educational." "We are moving into a new nursing home soon and the training

will come in very handy when organising the move." "Very eye opening." "Excellent – hope to send many staff on future sessions." "I would recommend anyone to attend the training session and

would like something available on other similar things."

4.12 Training provided during pilot projectsProject managers were also consulted about the type of training for professionals working within the pilot projects. In most cases low vision training had been provided by RNIB, and this includes theory lectures and accredited exams. Peer review was also cited as a mechanism where staff could discuss different case models.

Some projects had also developed specific training for volunteers, and this included the New Forest pilot. This package aimed to develop three levels of volunteers: those that would be able to co-ordinate appointments by phone, those that would also provide advice and those that could supervise and induce new volunteers. As reported above the Hartlepool project had also extended its training towards people outside the project, as part of its strategy to raise awareness and improve services for people in nursing homes.

4.13 Knowledge sharing In this review it was felt that it would be useful to reflect how and to what extent information and knowledge had been shared across different projects participating in the programme. Such findings may be important in helping to facilitate further roll out of low vision eye care services. Project managers were therefore asked about what they had valued, and where they thought potential improvements could be made, in this regard.

In their feedback the majority found that contact and regular national meetings between project managers had been useful in: helping to identify problems; sharing good practice; and looking for accreditation. The original pilots at Gateshead and Barking, Dagenham and Havering were also reported as being helpful and

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having informed the development of their projects. Pilot project documentation, the website and the ‘top tips’ documents had also been cited as useful, although some had mentioned that in order to facilitate future development of the programme it would be necessary to publish more information on the website. Information packs, record cards and questionnaires had been shared across particular pilot projects, thereby preventing the unnecessary duplication of effort. Links between neighbouring projects such as Northumberland and Hartlepool were also cited as providing mutual benefit and support. Contact with the eye care services team and RNIB had proved very useful. Peer review was also highlighted as beneficial. A couple of projects had however commented on there being insufficient information and support and the need for programme managers to improve on feedback after the presentation of highlight reports.

4.14 Feasibility and future sustainability issuesFinally, project managers, and other members of staff were consulted about the main factors and of issues important in terms of developing, maintaining, sustaining, and delivering low vision services. A number of points emerged from these discussions. These are presented below.

The importance of having a strong management board, and ambassadors within key organisations such as the local PCTs and social services was highlighted. Strong, national, and local, group expertise was necessary to drive the development of projects and services, with service user involvement all the way through. One project also recommend the formation of a ‘sensory team’ consisting of proactive people focused on sight loss – including a community rehabilitation officer, a rehabilitation assistant, an optometrist, a dispensing optician possible trained as a Rehabilitation Officer, a Falls collaborative and other relevant professional members.

PCT re-organisation, lack of resources, and recruitment freezes were cited by most projects as being the main block towards sustainability and development. While demonstrating value for money, and that ‘patients were happy’, many projects felt that it was important to emphasis that low vision was an extra value - quality service and not simply about getting as many patients as possible, through the door.

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It was also thought that PCTs needed to convince social services that they had a responsibility towards funding low vision services. One project had been particularly successful in securing equipment including magnifiers and task lighting, through the joined equipment loans service, which is supplied through the social care budget.

The need for PCTs to work in partnership in order to commission services to a wider area was also highlighted. One project reported that this would help it to serve its community more widely, and more equitably. Currently, it felt that it was operating on a post code lottery basis, where the experiences of people living five miles apart were considered to be significantly different.

With respect to improving cost-effectiveness, a member of one project suggested the need for a national average for price settings, in order to ensure professional confidence.

The need to raise awareness at a number of levels was also repeated across all projects. This was not only at PCT level but also at a more professional level. This of course included optical and non-optical professions. The need to engage and train other care staff – key to identifying pathways and protocols was also flagged.

Significant and specific issues with respect to optometry and optometrists were also highlighted. Clinical governance and audit procedures were considered to be under-developed, and members of the profession were thought to be ill informed about the wider issues of low vision, particularly with respect to the rehabilitation needs. A national strategy towards raising low vision awareness was thus highly recommended. Greater investment in career structure and planning to help encourage the development of specialists in low vision was also suggested.

A strong dichotomy between the clinical and more commercial aspects of optometry practice was also highlighted. Due to the competition between optometrists inter-referral of ‘patients’ to low vision service providers was seen as unlikely, and thus predicted to create a potential block to the development of the low vision programme.

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The national shortage of rehabilitation workers was also cited as a significant barrier towards future provision of low vision services. The need to raise the profile of these key workers, and provide additional functions through a rehabilitation assistant was raised. This was already having knock-on effects in particular projects and challenging the continued commitment of frontline staff "as goodwill only extends so far."

Potential problems with finding premises/clinic space have also been flagged. The specific requirements of low vision can prohibit opportunities for accommodating the service, as different rooms are needed for low vision assessment and low vision rehabilitation, and ideally a third room with a telephone. This is particularly pertinent to one project, which is having significant difficulty in finding clinic space. To avoid such problems another project has however been particularly successful in making provision for low vision services in a new primary care development centre.

Specific concerns around feasibility with respect to the length of appointment time have also been raised. Additionally, the risks associated with using volunteer staff have been highlighted, along with specific issues and concerns with respect to providing multi-agency staff with appropriate insurance and indemnity cover. Information technology was also flagged as being potentially problematic.

Finally, it was highlighted, that the long term sustainability and development of the NHS Eyecare Services low vision programme was dependant on attitudes towards eye health, public policy, and the national agenda. Raising the profile of sight loss and awareness about its devastating consequences was a necessary step. It was felt however, that the projects had made significant progress towards that process.

5. ReferencesHMSO (2006) Our health, our care, our say. Secretary of state for Health

Low Vision Services Consensus Group (1999) Low Vision Services, Recommendations for future service delivery, RNIB, London

National Eye Care Services Steering Group First Report (2004)

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