Patients with learning disability in the community

Over the past 20 years we have witnessed the closure of large residential hospitals for adults with mental handicap and an exodus from these institutions into community care. This move was motivated by a desire to give people with handicaps the opportunity to live as normal a life as possible.¹ However, concerns have been expressed by the Department of Health,² some psychiatrists,³ and patients themselves⁴ about the change.

Adults with learning disability are more prone than the rest of the population to chronic health problems, including epilepsy, dementia, hepatitis, peptic ulcer, dysphagia, and problems related to sensory impairment.⁵ Age related diseases such as stroke, cardiovascular disease, and malignancy will also be of growing concern as life expectancy increases. Many may be surprised to learn that in the Netherlands mental retardation is the greatest single source of healthcare costs (8.1% of total).⁶

In the past hospital psychiatrists specialising in learning disability catered for the health needs of adults living in institutions. These doctors developed skills in managing many of their health problems, including epilepsy, depression, and behavioural disorder. More recently, general practitioners, employed as hospital practitioners and clinical assistants, have worked in residential hospitals, providing general medical care and developing skills in dealing with the particular problems of adults with learning disability. Indeed, many units established their own acute medical treatment facilities, and general hospital admission was rarely needed. Local district general hospitals often offered continuity of specialist input, including dental, orthopaedic, and gynaecology clinics on site.

This system was far from perfect. However, the care of these individuals has now moved to the community, and there is a danger that specialist knowledge and related skills will be lost. People with learning disability must now register with local general practitioners, who are unlikely to have any special interest in learning disability and are ill prepared to deal with some of the complex mixtures of physical, psychiatric, and developmental problems of these patients. Specialist psychiatrists now work largely in outpatient services, where the support that they can offer may be restricted.⁷

Difficulties in providing medical care have been highlighted in the BMJ recently, with further examples in this week’s correspondence (p 536).⁸ Poor uptake of screening for cancer has been reported in women with learning disability.⁹,¹⁰ Cognitive difficulties may prevent some of these patients appreciating the benefits of screening, and even those with more independence may be unaware of available medical services.¹¹ There are also practical obstacles to providing screening tests.⁸ However, doctors may also fail to recognise and treat medical problems in these patients. We have recently reported that osteoporosis is common in adults with learning disability¹² but that underlying causes of bone loss may not be treated.¹³

How might the problems of adults with learning disability in the community best be addressed? Much research in learning disabilities has been on service delivery, particularly in the community, but it now needs to address broader issues and it needs to be published in journals where it can be read by all those offering care, including general practitioners, gynaecologists, dentists, and geriatricians, and not just psychiatrists. One suggestion has been to devolve responsibility for providing services to primary health care, with advocacy¹⁰ and the appointment of case managers¹⁴ helping within this model. In England the new primary care groups, responsible for medical care in the local community, should be in a good position to tailor services for these patients. However, liaison will be required with mental handicap services and agencies representing patients and families, such as MENCAP. Finally, the training of doctors in medical and social issues related to learning disability should be a priority.⁴ The inclusion of these subjects in undergraduate teaching should be the responsibility of the medical schools, and the royal colleges of psychiatrists, general practitioners, and physicians should collaborate on higher professional training.

Care in the community should promote greater autonomy and improve patients’ quality of life. In achieving these grand objectives we must include patients’ priorities in the delivery of primary health care. Unless the medical and emotional needs of those with learning disability are addressed we risk replacing institutional care with community chaos.

Letters p 536