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Living alone despite retinitis pigmentosa

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VOL: 98, ISSUE: 03, PAGE NO: 34

Helen Sharpe, RGN, is a rehabilitation worker with Cam Sight in Cambridge

I am a rehabilitation worker for Cam Sight, the Cambridgeshire Society for the Blind and Partially Sighted. It is an independent, registered charity providing professional services for local people with a visual impairment so that they can lead independent lives. My background is in nursing and I use many of the skills I acquired then in my current role.

I am a rehabilitation worker for Cam Sight, the Cambridgeshire Society for the Blind and Partially Sighted. It is an independent, registered charity providing professional services for local people with a visual impairment so that they can lead independent lives. My background is in nursing and I use many of the skills I acquired then in my current role.

My time is divided between home visits and seeing clients at the resource centre, which introduces visually impaired people to equipment that can help them to cope with their disability. There is a specially equipped kitchen and a workshop area in which they can learn new ways of performing skills that formerly relied on good sight.

Advocacy is an important part of my role: securing financial aid for clients and standing up for them when they are unable or too daunted to do so for themselves.

One of my main objectives is to enable clients to continue to live safely in their own homes. The following case study provides an insight into the issues many visually impaired clients face.

Case study
Gerry Slater (not his real name) is 77 and has become increasingly visually impaired over the past year. He is single and lives alone in a first-floor, warden-controlled flat. A bachelor, Mr Slater is a shy, retiring, working-class man. Originally from the country, he used to enjoy long walks.

When I first went to see him he was unshaven and dishevelled, and his home was dirty. His problems began when he became unable to see well enough to attend to his affairs but was reluctant to seek help. His only relative is a frail, elderly brother who is also visually impaired and lives many miles away.

When Mr Slater first complained about sight problems his GP referred him to a consultant ophthalmologist and he was registered as partially sighted. The following year he was registered as blind, although this is a technical definition and does not necessarily indicate total loss of sight.

He was diagnosed as having retinitis pigmentosa (RP) and was experiencing tunnel vision and night blindness, which are typical symptoms of the condition.

Although there was a family history of visual impairment, it appears that Mr Slater and his brother had accepted their sight problems for some time without seeking help.

It is likely that his brother's visual impairment is also RP, as it is a hereditary condition (see box). There is no treatment to cure or even arrest the progress of the condition.

In this and similar situations, the support offered by the rehabilitation worker can be invaluable. Mr Slater needed financial aid but I had to gain his confidence and trust first. In such cases clients often have feelings that may not be obvious, such as low morale, a state of denial and a sense of bereavement at the loss of their sight. Often they have fears, both real and imaginary, about the consequences of losing their sight.

Mr Slater receives a statutory state pension and a minimal retirement pension from his previous job as a bus conductor. He has about £1,000 in savings which he had earmarked for his funeral expenses.

We sorted out his benefit entitlements, including attendance allowance and income support. I also provided him with a signature guide, a plastic card with a 'window' in which to sign his name that can be positioned by a sighted person. It allows him to draw money from his Post Office account.

He needed immediate help with the housework and preparing meals. The flat was dirty because his poor vision meant that he could not clear up an increasing number of spills and breakages. He had always taken great pride in his home and personal appearance and was becoming demoralised.

My assessment revealed various hygiene issues: he was unable to check whether he had washed his hands adequately after using the toilet and there were poorly washed plates, cutlery and worktops in the kitchen. These hygiene issues were brought to Mr Slater's attention and addressed by enlisting the help of a regular cleaning service.

To ensure his safety in the bathroom, grab rails were installed in the toilet and shower and he was given a rubber, non-slip mat to use in the shower.

I arranged a meal delivery service so that all he had to do was place a frozen, prepacked meal in the steamer provided and switch on the timer. This meant that he did not need to use the oven and gas rings, preventing a daily hazard.

To address the problem of spillages, I supplied Mr Slater with a liquid-level indicator. This is a small device containing an electronic chip that hooks on to the inside of a cup or jug: it bleeps intermittently until a certain level is reached and then bleeps continuously.

Mr Slater was no longer able to read so he spent his days listening to the radio and watching television, but he was becoming increasingly depressed and isolated. One attempt to alleviate this was by supplying him with audiotapes by post, a free service provided by the local library. We taught him how to operate a specially modified cassette player with raised fluorescent bumps fixed to the 'play' and 'stop/eject' buttons.

A volunteer coordinator from Cam Sight visited Mr Slater and was able to match him with a male volunteer. The volunteer visits him at home and takes him out in the car so that Mr Slater can enjoy walks at different locations.

He still goes out alone in his own neighbourhood but refuses to use a white stick. While this is a safety issue, many visually impaired people do not use a stick because they feel it makes them vulnerable to opportunist attacks.

A year after my first contact with him, Mr Slater is managing much better with the extra support and is more accepting of help.

He is still very independent, but in a positive way. He has come to terms with his disability, although it has been a slow process, and his quality of life has improved greatly.

Since Mr Slater has had help and attention he has become more outgoing and sociable. He probably has more friends and more of a social life now than he ever had before.

He has been on three holidays in a hotel specially adapted for disabled and visually impaired people. The holidays were in another county and he chose and booked them himself.

Meeting others in a similar position regularly means that he no longer feels like a misfit.

Without rehabilitation, he would have continued to live in unsanitary conditions and his diet would have remained unbalanced. These factors, together with his increasing isolation and depression, would eventually have led to him needing full-time residential care.

Instead, the rehabilitation package has allowed Mr Slater to maintain his dignity, privacy and independence by remaining in his own home.

It would be easy to become emotionally involved with a client such as this, but it would be unprofessional.

I believe that my nursing background enables me to step back while still caring. It is best to channel the client into local services. Calling on the help of other professionals, instead of trying to be indispensable, is a skill I learnt as a staff nurse.

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