South Cumbria (formerly Morecambe Bay) Integrated Low Vision Service

End of project conclusion and recommendations

1. Introduction

Cumbria (formerly Morecambe Bay) Primary Care Trust has been working in partnership with Cumbria Adult Social Care (ASC) and South Lakes Society for the Blind (SLSB) to pilot an integrated low vision service in the rural areas of Kendal and Windermere. This pilot project was funded by the Department of Health through the National Eyecare Services Programme. It began in December 2005 for 12 months under the ‘plant and nurture scheme.

2. Project Aims

The aims of the project as outlined in the Project Initiation Document have been successfully completed as follows.

2.1 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.

A fully integrated service providing low vision assessments alongside rehabilitation and support services under the one roof has been successfully developed.

2.2 Provide services locally, thereby reducing the need for people to travel outside their community.

The service is based at two sites. In Kendal the service is based in SLSB’s Sight Advice Centre and at the Goodly Dale Health Centre in Windermere. Both of these sites are centrally based and fully accessible.

2.3 Include a domiciliary service when appropriate

Home assessments have been provided for a small number of frail elderly people who have been unable to get to either centre.

2.4 Design a low vision service with equality of access for all

The service is fully accessible and has been used by people with physical disabilities and people with learning disabilities. 2.5 Involve clients in the setting up and ongoing evaluation, making it user centred and based on individual need

Service users were involved in all stages. The two user consultations ensured service users were involved in the design and service users have been involved in both the Steering Group and the Project Team which developed and implemented the service.

3. Project Objectives

Successful completion of the project aims has also resulted in the five project objectives being achieved as follows.

3.1 Develop an innovative service in line with low vision service standards

The service has developed in line with the standards as defined in the following documents.  Progress In Sight: National Standards of Social Care for Visually Impaired Adults  1st report from the National Eyecare Services Group

3.2 Build on the benefits of multi-agency working

Positive user feedback has shown that being able to access a multi-agency service can benefit people living with low vision. In particular, service users have appreciated the time given to them during their assessment and felt better supported in coping with their sight loss.

3.3 Improve choice and accessibility to low vision services

Choice and accessibility have been improved because this is a locally based community service, catering for the needs of all, with simple and direct referral routes.

3.4 Help meet the National Services Framework by improving general health and independence

The integrated service adheres to the principles cited in the NSF for Older People promoting person-centred care and independence. In addition, positive user feedback has shown maximising residual sight can enhance quality of life.

3.5 Develop an equitable and sustainable service

A low vision training programme has been developed to ensure an equitable service can be delivered and sustained in the long term.

4. Project Outline

The project began in December 2005, suitable venues were found and communication strategy was implemented to ensure all visually impaired people in the Kendal and Windermere areas were aware of the new service. An eligibility criterion was agreed which requires all service users have been seen by an optician (optometrist) within the last six months. This provides an eye health check and a current prescription which may be needed if spectacle mounted aids are prescribed. A referral protocol was produced with the Community Patient Contact Centre (CPCC), a low vision practitioner was recruited and the service started in March 2006.

Initially the project focused on Kendal and Windermere and their rural communities. However, the hospital based low vision service at Westmorland General stopped in February 2006 and this project has accepted all referrals from across South Lakes to avoid unnecessary delays for service users who are vulnerable and elderly people.

The project has developed a new care pathway for low vision and rehabilitation services. The simple and direct pathway, including self referral, reduces the need for people to be referred to the hospital eye clinic for a low vision assessment and then wait again for referral to the rehabilitation and support services. The waiting time for the low vision assessment has been reduced from 3 to 6 months to within 28 days of receipt of the referral at the CPCC. The service is locally based thus reducing the need for people to travel outside their community and a domiciliary service is available when appropriate. A low vision training programme has been developed to ensure an equitable service can be sustained and extended to other areas of South Cumbria. To date four optometrists have received low vision training.

5. Benefits of the Project

 An integrated low vision and rehabilitation care pathway has been developed which people find easy to access at any stage  The new pathway provides opportunities for crucial earlier interventions increasing positive rehabilitative outcomes  Provides access to a wide range of low vision aids, practical and emotional support and information in accessible formats  Provides locally based and easily accessible service reducing the need of people to travel  Improves quality of life by maximising the best use of remaining sight enabling people to read, watch television, go shopping etc. All of which impact on general health and well being. (NSF standards)  Provides a footprint for transferring hospital service into a community setting.  Raises awareness of low vision to many health and social care professionals including optometrists and dispensing opticians. (Some local optical practices have sent pre- registrars to shadow and observe the low vision team and attend courses run by SLSB for newly registered blind and partially sighted people).

6. Value for money

It has not been possible to assess value for money due to  The difficulty in getting accurate costings of the hospital based service (currently only at Furness General) to make cost comparisons  This pilot project integrates low vision with rehabilitation and support services and is not a comparable service.  The short time span of the pilot – 12 months

In the long term the benefits of this multi-disciplinary approach will have a wide impact on health and social care provision. The integrated low vision service  enhances people lives  promotes independent living  supports people to remain at home  potentially playing a significant role in preventing falls  potentially reducing the demand for residential and nursing home places  potentially reducing the pressure on both primary and secondary care

It is strongly felt that bringing a multi-agency team together in one place adds value to those services in terms of cohesion, prevention of duplication and holistic approach to service users.

7. Recommendations

With the experience gained from this project extend the service across South Cumbria from April 2007.

Continue to monitor and evaluate the service through the user led South Cumbria Low Vision Group.

With the experience gained from this project and from other projects from the National Eyecare Services Programme develop a low vision care pathway for children and young people.

8. Conclusion

The project has provided a locally based low vision and rehabilitation service. It has addressed the concerns identified in the users’ consultation about the inequality of equipment and service provision, the difficulties in accessing the service and the fragmented approach of and health and social care services. The project provides the opportunity to transfer the hospital based low vision provision to a community based integrated low vision service across South Cumbria and would be the next stage in developing an equitable service across Cumbria.

December 2006 Appendix 1

Age range

18 – 40 41 – 60 61 - 70 71 - 80 81 – 90 90+ 3 2 13 35 58 11

Currently children and young people (under 18) are not able to access low vision services through this pilot project.

Gender Female 81 (66%) Male 41 (33%)

Main causes of sight loss

Primary Eye Condition Nos Age related macular degeneration – dry 83 Age related macular degeneration – wet 14 Cataract 5 Glaucoma 5 Diabetic retinopathy 1 Other 14

Appendix 2 Patient experience – findings from 1st survey (June)

94% of service users reported that they had received a very good service, with 97% felt better supported with coping with their sight loss. 94% felt they were given time to discuss the emotional impact of sight loss. 82% found the information easy to understand and 85% thought it accurately reflected the service. 88% reported that it was very easy to book their appointment 62% found it very easy to get to the clinics, 26% found it fairly easy and 9% found it difficult. People used a variety of transport methods including public transport and 32% of people walked to their appointment. 68% found it very easy to get into the buildings, 26% found it fairly easy. 47% of service users were able to read the information sent, 41% were unable to read it and 12% couldn’t remember. 44% reported that their transport needs were discussed

Additional comments

Very good to have it so near, easy to get in touch.

I can see things I haven’t been able to see for years, it’s given me confidence. This is the best help I’ve had for thirty years.

I can do things I couldn’t do before, much more convenient in Windermere rather than at the hospital.

The whole package is wonderful.

I hope this service continues, a perfect system, couldn’t be better.

Better than at the hospital, very pleased to have someone from social services to discuss things with.

Appendix 3

Adult Social Care (ASC) Perspective (written by Simon Eamonson)

The low vision pilot, whichever way it is looked at, has been a positive experience. ASC has always felt that there has been an over-reliance on the certification/registration process in identifying and providing a service for persons having a visual impairment, both in terms of them accessing lighting and magnification, and for assessment by a suitably qualified rehabilitation worker at the most appropriate time.

The ability to access the written word or carry out detailed tasks is more often than not, the first thing someone with a visual impairment loses. The fact that it is not until ophthalmic intervention is complete that the person is assessed for low vision means, that in some cases, people may have not been able to access print for over 12 months.

Referral to ASC, has traditionally been at approximately the same time (certification/registration), meaning that our assessment is very often pre-low vision, which for many people at that time, regaining the ability to access the printed word, is their main focus.

The resultant assessment is therefore more difficult, as low vision solutions have not been assessed for, and due to the delay in referral, levels of dependency have increased.

The low vision pilot has helped to identify a number of individuals who are at the beginning of their ophthalmic treatment, or in a few cases, prior to it, which the low vision pilot has been able to provide advice, equipment and support to during this worrying, often emotionally difficult time.

In addition to this, the low vision pilot has been able to identify persons, who were previously known to ASC, perhaps through registration a number of years ago, whose visual function had deteriorated and new needs have arisen, and in these cases, an up to date assessment has been offered.

Overall the benefits of the low vision pilot are centred on the early intervention and information that can be provided to individuals who may need support at that time, and just as importantly, for those people who may need support in the future due to further deterioration of their visual abilities.

The unique blend of the voluntary sector provider (SLSB), health/PCT (Low Vision Therapist), and ASC (ROVI) has allowed for and promoted a far more cohesive service to individuals in a less clinical setting with purposeful reviews, excellent linkage and diminishing overlaps.