Social care: a better way?
Jonathan Griffith offers a creative solution to a pressing social need
I have quite severe cerebral palsy but I am determined and creative. Around the Christmas before last I was overdoing the struggle to get out of the bath and gradually lost the use of my right arm – which is essential to my independence – having trapped the nerves in my neck. Lacking enough support at home (I live alone) I had to go into a nursing home. At the end of that April the NHS decided to fund my care and I returned home in May.
I am in my eightieth year. I find myself in an invidious position: very healthy but almost completely physically helpless. All I can do is steer my electric wheelchair and tap on various electronic devices – none of which feed me, toilet me, wash me, dress me, put me to bed, or wipe my nose. Human intervention to perform these tasks is essential, but currently rationed and wasteful. I’m living in my bungalow supported by four visits a day from a domiciliary care agency which is paid by the NHS (instead of my being in a nursing home) under a scheme intended to allow people with a few weeks to live to die in their own home environment. Beneficiaries should be reassessed every three months. The person responsible for reassessing me is avoiding doing so, for I have been well and stable for at least eight months.
It is clearly wrong that I am using NHS funding when I am not ill, but if I was reassessed and lost that financial support normally I would be put back in a nursing home, which would be a waste of my abilities and soon drain my assets in general. I do not feel safe and it deeply troubles my Quaker honesty! There must be a truthful way forward. I can’t afford to pay for the kind of help I need, but I could give free board and lodging, pocket money, a pension and insurance, and my concern for their welfare, to someone with similar interests who is working or studying at home and who could pause to give me the help I need. My aim is very much a two-way companionship rather than an employer-employee formality.
For example, I need someone around to do the little jobs and a few bigger ones, giving me a better level of care, such as helping me use the toilet when I wish so I don’t have to wear incontinence pads. I also need someone to drive my car to take us shopping and to exhibitions, films and meetings; and, of course, to do simple housework and cooking. Of necessity, they’ll become very familiar with my body. It’s old, thin and a bit twisted – and feels marvellous! Although my hands and right arm can only feel some things, the rest of me is exquisitely sensitive. I love my sense of touch, delicate or firm. Maybe massage could coax more movement from my joints and muscles. If the idea of giving intimate help and care is repellent, that’s natural at first, but shyness and fear soon go. It is only me! My hope to find a resident companion, if realised, would free my clinical commissioning group (CCG) to fund elsewhere, or pay less interest and possibly free my companion from seeking an unwanted job, plus make fuller use of my facilities, as well as providing me with the support I need.
There may be many people, alone and struggling, or in nursing homes, who could be paired with students, writers, researchers, craft workers, artists or someone who just enjoys providing one-to-one care, perhaps with a part-time job.
To be successful, a national resident companion scheme will need recognition and the right publicity. By recognition I am thinking of a space on the government’s job search website on which to advertise; agreement by HM Revenue and Customs that this kind of arrangement is not ‘back door’ employment; police checks on both parties at a reduced rate; training for care managers so that this can be a legitimate and valuable ‘care option’; a new care classification box on local government databases; ‘next of kin’ privileges in confidentiality situations; and so on. It would not cover twenty-four hour care for people lacking mental capacity for a two-way relationship. There may already be informal partnerships like this scattered across the country. The main requirements in this proposal are a spare room, enough income and a friendly nature.
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