TOWARDS A MODEL SERVICE FOR PEOPLE WITH IMPAIRED VISION

by

Wendy Jack, Sensory Impairment Team, Social Work Department

West Dunbartonshire Council

Shelagh Palmer, Development Officer,

Glasgow & West of Scotland Society for the Blind

John Womersley, Consultant in Public Health Medicine,

Greater Glasgow NHS Board,

350 St Vincent Street, Glasgow, G3 9YU

TOWARDS A MODEL SERVICE FOR PEOPLE WITH IMPAIRED VISION

Introduction

Although sensory impairment is extremely common and disabling, the needs of people with serious vision loss have not been addressed in any systematic way. This is despite an abundance of reports and recommendations which, in general, are soundly based on the findings of focus groups and other forms of user/patient involvement. The main reasons for this failure are probably the low profile of sensory impairment and the large number of services involved - embracing health, social work and voluntary organisations. This report describes the experience of developing a coherent service for visually impaired people in Clydebank, Scotland (population 47,000, West Dunbartonshire local authority).

Methodology

Exploratory discussions led to funding being provided by a Health Board (Greater Glasgow NHS Board) to a voluntary organisation (Glasgow & West of Scotland Society for the Blind) to employ a researcher. The aim of this work was to explore the views of providers and users on the gaps in current service provision and develop services to meet these needs. The researcher linked with the development worker attached to the Sensory Impairment team and good working relationships were forged. This small team made recommendations from the research evidence and implemented the actions. These staff met with a Health Board representative every month to discuss progress and options for the way forward.

The first step was to identify those in Clydebank with a responsibility for, an interest in, or direct experience of visual impairment. This encompassed social work services, homecare services, education services, primary care services, voluntary sector groups and local people with a visual impairment. From these interviews, the gaps in service provision became evident. These are best summarised in terms of the patients journey. Fig 1 illustrates the main pathways for people with a visual impairment through services. The dotted lines represent new pathways and developments.

Principal findings

It can be seen that there are several points where people may become lost to the system, which means that they are not receiving the support, equipment and benefits that might make everyday living easier.

Loss of vision is devastating and as well as needing practical help, emotional support is very important. This type of support should be easily accessible and provided by a specialist. Many people want to talk about how to cope with their deteriorating vision and about where they might go for help.

DIAGRAM 1

DIAGRAM 2

People who are experiencing difficulty with their vision have to undergo a protracted referral and assessment process (complicated, and with considerable delay at each stage) before they receive help and support. During this period of time, they are living with failing eye sight and their independence and quality of life may have become unnecessarily compromised. Supplying the relatively simple aids, equipment and many other forms of information, advice and support should happen as early as possible and not be dependent on the gate keeping referral processes.

Other issues included access and awareness of the wide range of aids and equipment available, support and encouragement in the use of low vision aids, meeting the needs of visually impaired people who are housebound (or almost so) or living in care homes; and providing a proactive service for those not currently accessing services.

Developments established

(1) Out-patient support service

The most urgent and universally agreed need was for support for people attending the eye clinic appointments and the first development was to negotiate the appointment of a ‘support worker' at the ophthalmology out-patient clinic, Gartnavel General Hospital – this being the hospital attended by most Clydebank residents. The person appointed had led a social work sensory impairment team for many years. The service is based in a small room within the clinic where patients can discuss their needs in privacy and in a non-medical environment. A small range of aids and equipment is available for demonstration purposes. A network with social work staff from the main six local authorities in the hospital catchment area has been established in order to assist with information provision and facilitate referral. The support worker also participates in teaching sessions, seminars and conferences. Medical and nursing staff at the clinic state “the service is now a key strand of the department and gives patients information on the social and functional aspects of their sight loss which they are unequipped (and have no time) to give.”

Almost 100 contacts are made each month – just over 10% of which are second or third contacts made by the same individual. Over 45% of contacts are by telephone, the remainder being personal visits. Just under 25% are adults aged 59 years or below. About 50% are already registered blind or partially sighted, 20% about to be registered and 30% unregistered. About 20% are self-referrals, the remainder being referred by health service staff. Nearly all the patients express feelings of a loss of independence and skills and the need to talk to someone about how they feel. About 60% of patients display strong emotions ranging from anxiety, upset, being frightened, worried and angry and for many they want to talk about the future, and what might happen next. In a third of the interactions the patient is visibly upset. 

The most common support given is reassurance, comfort and providing a ‘listening ear'. Fundamental to the interaction is that t it should be patient led giving them the opportunity to articulate their needs and concerns. In most cases information is provided about local social work visual impairment services, so that the people themselves know where help and support can be provided in their locality. However in 10% of cases, and with the permission of the person, the support worker makes direct contact with social services because of the urgency of the situation. Patients can also receive practical advice about daily living, lighting and any equipment that is available. If needed advice is also given about travel, blue badges, telephones, benefits, housing, employment, hobbies and leisure activities, clubs and organisations, self-help groups and further education.

(2) Sensory Impairment Resource Room

The need to increase access to local services was highlighted so that people with a sensory impairment and/or their families could access for advice and support without having to formally engage with the social work department. It was decided therefore to establish a resource room within Clydebank Health Centre, staffed by the resource assistant for West Dunbartonshire Council Sensory Impairment Team. The service is designed to provide information and advice and to increase access to services for people whom would not generally be in touch with social services. No appointment is required. On average there are 5-10 people attending every fortnightly afternoon session for equipment to aid them in daily living. The equipment most often provided is smoke alarms for the deaf, visual doorbells, demonstration of a large button phone, and talking equipment such as watches and clocks. 

The service acts as a link with other services such as to the sensory impairment team, the Hearing Aid repair service and the Welfare Rights service. The service also helps to raise the profile of needs of people with sensory impairment and as health centre staff become more aware of the service, patients are referred directly to the resource room where they can be seen immediately and if necessary can be sign posted to other services. This is an ideal opportunity to obtain practical support at an early stage and is irrespective of registration status. The service is still in its early stages and needs to be publicised more widely.

Work in progress

(1) Low vision aids

The main service providing low vision aids (LVAs) in the West of Scotland is based in Gartnavel Hospital. About 50 patients a month attend the service, but evidence suggested that as many as 60% of patients do not use the device(s) prescribed. In order to find out why, twenty-five patients were each interviewed on two occasions: two weeks and 10 weeks after attending the clinic. Most were using their magnifiers, but with some difficulty, for reading short scripts (eg bills or instructions) but not for longer material or books. The need for more training and follow up support in the use of magnifiers was evident. This should be easily accessible and could be provided on a group basis. It should involve a trained worker and much can be learned from the model of low vision specialist posts.

(2) Unmet needs of people with a visual impairment

The aim of this project is to identify people with a serious visual impairment, not known to specialist services and to assess their needs. People are identified from a variety of sources. These include people registered blind and partially sighted who may not have had contact for some period of time; people known to other services such as opticians, the older people's team and home care organisers; people attending local groups such as lunch clubs and churches; a general practice in which attempts have been made to identify those with a visual impairment; and possibly local advertising to invite people to come forward.

Although this work is in its early stages, it would appear that there is a need for practical and psychosocial support for visually impaired people who are not currently in touch with specialist services. This mirrors the needs being articulated by people attending the patient support service at Gartnavel. There are particular issues for elderly visually impaired people living on their own, and / or confined to their homes.

Another observation is the potential of the optician to provide basic practical advice on lighting, contrast in the home, use of magnifiers etc – as a “health promoting optician”. The potential of the opticians could also be developed if the new system of registration, which is to be introduced in England and Wales, were to be introduced in Scotland. In this model, opticians can refer to local visual impairment services.

Conclusions

Each of the developments described are subjected to a comprehensive and ongoing evaluation and the early indications are, that not only are the intended aims being delivered but also the developments have had additional impacts. Many have resulted in improvements in communication between patients and professionals, between professionals themselves and across professions / organisations (e.g. health services and social work). There is a much better understanding of the pathways for visually impaired people, the complexity of those pathways, the role of different professionals / organisations. Of particular importance is the patient support service in the department of ophthalmology, Gartnavel General Hospital. This project has been so successful in bridging the gap between the health services, social services and voluntary sector. Consultant ophthalmologists have a better understanding of the role of registration in providing support to people and many staff are now more aware of the social and functional impact of sight loss. Patients have a better understanding of the pathways and where they go to for support. The project has established links with the sensory impairment teams of each local authority in the Gartnavel catchment area in order to expedite and improve access to sensory impairment/social work services in the communities where the patients live.

The main challenge is now to ensure that all those with a visual impairment who need services are able to access them with the minimum of delay and minimum amount of procedures and assessments. This will require services to become more proactive in their approach. There are obviously resource implications but before these can be quantified, it is necessary to ensure that current resources are being used efficiently and that people are helped and encouraged to participate in the management of their own care. Making services readily accessible and information available to everyone with a visual impairment and to their families/carers will be an essential part of this process.

Recommendations

1. People with visual impairment need ready access to sources of help and support as soon as they feel that they need help. Services should become more proactive in their approach to service provision.

2. There is an urgent need to address the long and tortuous process of registration/certification before referral to social work as during this period many people loss their independence and the skills of daily living.

3. An effective way of providing ready access to support at an early stage is to establish an open-access information, advice and resource facility. A Health Centre provides a suitable setting for this and removes the stigma of social services.

4. People newly diagnosed with serious loss of vision, irrespective of registration status, need practical and psychosocial support from a specialist practitioner. This should be an integral part of the outpatient eye department so that support is available at the point of diagnosis.

5. There is potential for opticians to provide additional services such as providing practical advice on low vision aids and lighting at home, referring clients to the social work sensory impairment team and possibly making direct referrals to hospital ophthalmology departments should be considered.

6. Follow up and support for those prescribed with low vision aids should be available at a local level.

7. People with learning difficulty have specific needs which should be identified and addressed. This applies also to people with dual sensory impairment (deaf-blindness).

8. The psychosocial needs of people living in care homes or confined to their own homes should be addressed.

9. The procedure for registration/certification requires a major overhaul and consideration should be given to the new system BD8 in England and Wales.

10. Key element for success has been staff with a dedicated remit for facilitating the development of pilot projects and joint working across all community partners.