Published: 28/02/2002, Volume II2, No. 5794 Page 20
To gain respite from the downtrodden, underfunded, value-driven NHS, and experience a different part of the welfare state, I am working with a voluntary organisation.
Surprisingly, I have found parallels with the NHS.
The voluntary organisation (if you can call five employees an organisation) is Carousel. It works with people with learning difficulties across the South East, using artistic media - from drama and dance to painting and sculpture - to celebrate the unique art which people with learning disabilities can produce.
This helps clients express themselves, gain confidence and 'self-advocacy skills', enjoy themselves and provide others with role models for the way people with learning disabilities (sometimes very severe, and complicated by physical disabilities) can live in society.
Among Carousel's 'products' are a touring dance company which integrates dancers with and without learning difficulties seamlessly into a programme devised by the dancers in collaboration with nationally renowned choreographers. Other ventures include evening and residential programmes allowing clients to express themselves in a secure and safe environment.
There are training programmes for volunteers and staff from companies and care organisations wanting to work with people with learning disabilities. Carousel also has a research agenda aimed at distilling effective ways of working with clients; and even runs the Blue Camel Club, a popular club night in trendy Brighton produced by and for people with learning difficulties.
What are the parallels, and what can the NHS learn from them?
First, semantics. Is it learning difficulties, or learning disabilities? Keeping one step ahead of politically correct jargon is as laden with symbolism as it is with the practicalities of staying in tune with potential funding agencies.
What is it about 'Cinderella' services that makes their names become expressions of disparagement? We cope by introducing euphemisms whose life-expectancy gets ever shorter.
Mental retardation becomes mental handicap, becomes learning difficulty, becomes learning disability (or is it the other way around? ). Every change highlights the group's marginalisation more explicitly.
In the NHS, geriatrics gives way to services for the elderly, senior citizens, people of the third age, and eventually maybe even those with an ageing difficulty. . Why do we find it so hard to deal with special groups? is not there a healthier way?
Second, how voluntary is the voluntary sector? Although unpaid volunteers work in many Carousel projects, few people work as hard as the (paid) employees. Their workload is huge but not their pay - the organisation survives on the goodwill of its staff. Does that sound familiar? Let NHS workers count their blessings.
Just like the NHS, there is an increasing risk in today's individually focused society of that goodwill wearing thin as staff consider personal welfare above their organisation.
Opportunities for staff training, personal development and the other marks of approval and caring in any dynamic grouping are even rarer in the voluntary sector than the NHS, so staff throughout feel exhausted and undervalued. Is that the way to keep people motivated? Is that the way to keep people at all?
Third, finding funds.As with other welfare organisations, funding lies at the heart of most voluntary sector issues.Carousel survives on money from bodies such as the Arts Council, the Lottery, local authorities, NHS and non-statutory sources including charitable trusts and corporate donations. Few bodies seem prepared to fund the underlying costs of running voluntary organisations, and much effort is spent bidding for every pound earned.As with the NHS (perhaps more so), there are pressures to discount the cost and value of staff, to consider the short-term hit at the expense of the long-term benefit (the urgent over the important), and to reward large bureaucratic organisations to the detriment of small, locally sensitive ones.
The word 'charity'now conveys to me a sense of hard-working, value-driven people surviving difficult conditions in thousands of tiny organisations.Their future must be in doubt: the 'valuedriven'bit is under pressure, and the difficulties show no signs of easing.We need to value welfare in the public and voluntary sectors, or lose it.
Only by showing staff that their efforts are noticed, their goodwill rewarded and the gain is genuinely worth the pain will they continue to 'give of their all' in any part of the welfare state that depends on people.That is the whole of it.
Dr Jonathan Shapiro is a senior fellow at Birmingham University's health services management centre.
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