Select Committee on Scottish Affairs Minutes of Evidence

APPENDIX

Memorandum submitted by the Scottish Office (8 April 1998)

CARE OF THE YOUNG CHRONICALLY SICK

  1. This memorandum outlines the Government's policy in Scotland for the health and social care of the young chronically sick. In the National Health Service, the phrase "young chronic sick" refers to the age group 16-64, that is people defined as neither children nor elderly.

  2. The NHS's responsibility to provide services and to treat those who are chronically sick is the same regardless of age. The NHS recognises that services need to be responsive to the needs of individual patients and to the preferences of the public at large. This memorandum addresses issues relating to people suffering from Huntington's disease (who are normally in the 16-64 age group). These issues will be relevant to other groups of chronically sick patients, such as those suffering from Multiple Sclerosis, acquired brain injury and early onset of dementia.

HUNTINGTON'S DISEASE

  3. Huntington's disease is an inherited, progressive neurological degenerative disease for which there is no cure. The main impact on suffers is in adult life. Each person who carries the gene will develop Huntington's disease and this usually occurs between the ages of 30 and 45. Some people (around 5 per cent) may present under the age of 20 and another five per cent present over the age of 60 years. Exceptionally, patients may present after the age of 70.

  4. Sufferers of the disease are supported, and their disease managed in a variety of ways throughout the country depending on the stage of the disease progression and individual family and social circumstances. General practitioners generally first refer patients displaying symptoms to neurologists or psychiatrists depending on the symptoms presented and the severity of those symptoms. A range of treatment and types of care is then provided in various settings depending on the patient's needs. In the years immediately following diagnosis, patients are not so sick that they require conventional hospital based care, nor is their intellect deteriorating at such a rate that they need to be continuously cared for by consultants in psychological medicine. Treatment and support rests with their general practitioner with crisis assistance available when required.

EFFECTS ON CHILDREN

  5. The Offspring of those who carry the Huntington's gene have a 50 per cent risk of inheriting it. Children, that is those under the age of 16, do not themselves suffer from the disease but it is essential not to ignore the effects on them. So far as they are concerned, the main impact is related to the dynamics within the family situation, the effect of the disease on their parent or carer, and the possibility that the child will require genetic counselling and testing in the future, and the subsequent management of the disease. In terms of Huntington's disease, children are often carers within the family and the specific needs and stresses of carers have been well documented. When counselling is carried out, there is very often a realisation that not only is the family unit under stress because of a parental chronic disease, but the possibility of that disease being suffered by the child him or herself at a large stage of development with inevitable psychological effects. Counselling services seek to reassure and educate such children, but this requires sensitive and comprehensive management.

  6. Support for children who may be or are at risk must be flexible and responsive to individual needs. This includes support from child and family psychiatry and psychological services as well as close collaboration with other agencies including education and social work.

NHS PROVISION

  7. Long term institutional care of people with Huntington's disease has traditionally been provided within psychiatric hospitals. It is acknowledged that this is not always appropriate, particularly when the patient is a younger sufferer of the disease. Furthermore, the needs of patients required to be met on an individual basis as assessed by the professionals involved in their continuing care.

  8. In Scotland as a whole, the number of patients presenting with Huntington's Disease is small. Health Boards and NHS Trusts have to meet all the health needs of their resident population within the resources made available to them. This has sometimes meant patients being treated in sub-optimal surroundings. For example, when their disease has progressed significantly, some patients have been cared for in wards shared with geriatric patients. This should be avoided wherever possible, but such facilities sometimes offer the only accommodation available with access to the kind of treatment and care that these patients need.

  9. There are, however, examples in Scotland where it is possible to provide a better focused specialist service. In the Grampian Health Board area, for example, once a diagnosis has been made, patients are offered referral to the Huntington's management clinic which is based in Aberdeen Royal Infirmary. This is a dedicated clinic which has input from a clinical psychologist and clinical geneticists. The clinic provides a regular review service as well as management of drug treatment and co-ordination of care with onward referral to other clinicians and therapists as required.

  10. It is clear that provision for those suffering from Huntington's disease is determined by a range of health, social and other factors, and the type of service that is available in any one area of Scotland. The Scottish Office recognises that provision is patchy. In order to provide a clearer picture of the number of sufferers, the service provision available and the impact of the disease on carers and families, the Scottish Office has asked the Scottish Needs Assessment Programme to consider undertaking a needs assessment to look at this particular group of sufferers. The outcome of that study will be used to inform the plans of the National Health Service in Scotland. Furthermore, the Scottish Office has recognised the need for clear guidance on the care of sufferers. With the support of the Scottish Intercollegiate Guidelines Network, a Huntington's disease care pathway is being developed with a view to its early publication.

  11. In addition, the Scottish Health Advisory Service (SHAS) will be conducting a review of disability services looking at the provision of services for sufferers of diseases such as Huntington's disease. As part of their review they will be undertaking inspection visits to inform them of current service provision.

RESPITE CARE

  12. Respite services, particularly residential respite care, is important to patients and to those who care for them. In 1997-98, the Government allocated resources totalling more than £1 billion to local authorities to help meet the social work needs of their local populations, including respite provision. An additional £40 million is to be made available in 1998-99.

  13. The Scottish Office has issued guidance on respite care. It underlines the importance of respite care to the success of community care generally, to those who will receive services and to those who care for them. It seeks to extend the range and flexibility of available respite services, and to move away from the idea that respite is only provided in a residential often hospital, setting.

  14. As well as social work provision, the NHS provides respite care in appropriate circumstances. In general, however, lead responsibility rests with local authorities since normally the prime purpose of respite care is social rather than medical care. But the NHS and local authorities have to agree arrangements to ensure sufficient provision has been established and is available before any change in the pattern of services or responsibility for providing them takes place.

JOINT WORKING

  15. Effective joint working lies at the heart of successful delivery of community care services. Close links therefore have to be developed between the agencies involved, particularly health and social work, in the management and care of sufferers and their families. Joint working has improved significantly since the community care reforms, but more can be done. The Scottish Office is developing a consultation paper on ways to encourage closer, more integrated working between all agencies involved in community care.

  16. The Care Programme Approach (CPA) aims to ensure that people with severe and enduring mental health problems, including dementia, who have complex health and social needs, receive continuing care and supervision in the community. This is achieved through the co-ordinated delivery of an appropriate package of care and accommodation by all the relevant agencies. Guidance on CPA issued in 1992, but some problems arose in its implementation. Two pilot projects were therefore established in 1995, in Glasgow and Stirling, to test a model framework, and revised guidance issued in 1996. Monitoring has confirmed that every area in Scotland is developing structures for the implementation of CPA some of which are already in place and working well.

VOLUNTARY SECTOR

  17. As well as the statutory agencies, the voluntary sector plays an important part in the care of, and development of services for, people suffering from chronic illness. The Scottish Office acknowledges the valuable work of the Scottish Huntington Association and similar organisations by providing funding under Section 10(1) of the Social Work (Scotland) Act 1968 and Section 16(B) of the NHS (Scotland) Act 1978. Since April 1995, the Huntington Association has received £25,000 per annum under Section 10(1) and £14,500 under Section 16(B).

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Prepared 27 May 1998