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What patients and their carers want from neurological services
  1. Mary Baker
  1. Parkinson’s disease Society, 22 Upper Woburn Place, London WC1 0RA, UK

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    People in the United Kingdom who are now aged about 40 or more expected that they had been born into a welfare state that would take care of them from the cradle to the grave. However, the legislative changes introduced by the Thatcher government has transferred the responsibility for that care to our families and our communities and away from the state.

    The voluntary sector has also changed. At the beginning of this century, “the Charities” took money in from the great and the good, and disbursed it through a series of committees, using value judgments and their perceptions of what people ought to receive. That is not the case today. The voluntary organisations, as they are now called, exist to bring to the forum what their “customers”—and I use that word deliberately—really want—and if they do not do that then it is hard to understand why they exist!

    Dr Perkin’s article draws attention to the impact of the predicted demographic changes. Today we have 10 million people over the age of 65 in the United Kingdom. By the millennium we will have one million people over the age of 85. Estimates are that over half of the this group will be unable to walk unaided, one in five will be demented, and many will be incontinent. These problems will be inadequately considered by community care. Many of us may agree with the concept of community care, but at the moment 5% of that care is delivered by district nurses, 5% by residential care, and 90% by people we choose to call “informal carers”—relatives and friends of the person in need.

    A major threat to the present situation is the changing role of women. With a falling birth rate and many more opportunities for the employment of women, far fewer informal carers will be available in the future. As an illustrative statistic, in the 1920s, a couple in their 80s in the United Kingdom could have expected to have had an average of 44 female relatives alive, and 14 of them would not have been engaged in any work other than within their own household. A couple in the 75 age group at the millennium will have only 11 female relatives alive, and only three of them will not be engaged in any work outside the home. Demographic change and other career opportunities for women are also causing severe difficulties in the recruitment of health professionals such as nurses and physiotherapists.

    The key question is “Do the patients and families know what they want?” I think that they do. They ask for five principles of care. People want to be referred to a doctor who has a specialist interest in their disorder—not any old doctor. They want to be informed about the diagnosis and prognosis of their disorder. They want multidisciplinary help. They want continuity of care. They want to participate in the management of their illness.

    How can patients voice these principles? We have tried to arrange strategic alliances between our neurological charities, both in the United Kingdom and in Europe, to get the voice of the patient to policy makers. Partners in the Neurological Alliance want more neurologists, more imaging facilities, more education for the caring professions, more recognition of carers, and more respite care.

    Although the United Kingdom has a strong system of primary care, the referral procedure to neurologists is quirky, and is not driven by any common principles. Referrals within multidisciplinary teams should also be based on more explicit principles. How people are told about the implications of their diagnosis is not well done. I do not think that any of us understand the true impact of a disease process until it actually hits us. I have likened it to the beginning of a journey into the unknown. For any journey you need a map. We know from talking to patients that some of them set off with half a map, some with no maps, and some with medieval maps with dragons roaring of terrible things that could possibly overtake them. Surely we can do better than this.

    Patients want to participate in the management of their illness. They could do that very effectively if you give them better information. They have a part to play, and it is not just therapeutic.They could relieve the pressure on neurological clinics if they understood that they did not have to make an appointment to see the neurologist for their problem of constipation.

    I identify seven key questions for patients, neurologists, purchasers of care, and policy makers.

    • Do the customers know what they want?

    • How can we focus more sharply on the needs of the families of people with neurological disorders?

    • How do we get purchasers of health care to engage more with the customers, to improve consultation?

    • How do we ensure that policy decisions are based on sound evidence?

    • How do we ensure feedback to the purchasers that needs are being met?

    • How can we improve the dissemination of information to enable the customer to make informed choices?

    • How can we persuade policy makers to switch resources into the community, where people want to remain?