House of Commons - Scottish Affairs

Select Committee on Scottish Affairs Minutes of Evidence

Memorandum submitted by Scottish Head Injury Forum (22 April 1998)

EXECUTIVE SUMMARY

1. Traumatic Brain Injury (TBI) is a condition predominantly affecting young men. Survivors have a normal life expectancy so the problems are long term. In June 1997 Brain Injury was recognised as a specific disability group on the decision of Sam Galbraith MP.

2. TBI is much more common than often thought. In Scotland there were more than 17,600 children and adults with injuries serious enough to require hospitalisation. Some 6,000 are likely to have moderate or severe injuries.

3. Services at the acute state are generally effective but are concentrated in 4 centres. Post acute specialist rehabilitation for adults is concentrated in the central belt. Even there only a minority of potential beneficiaries actually get the service.

4. Community reintegration and vocational services are of limited availability. Usually they are funded via Mental Illness Specific Grant which has been frozen for the past three years. New services are hard to develop in consequence.

5. There remains a problem of responsibility as between health and social work in some areas. Local government reorganisation has led to the disaggregation of budgets and difficulties with some services.

6. There are no specialist multi-disciplinary rehabilitation services for children with brain injury in Scotland. This is unacceptable and requires urgent attention.

Proper planning, co-ordination and development of services requires a multi-agency approach with co-operation between planners, purchasers and providers. There is a need for them to become more aware of the issues arising from head injury.

7. S.H.I.F. recommend that the Scottish Office convene a multi-agency and cross departmental working group to consider and make concrete proposals and recommendations on planning, commissioning and funding of services for adults and children with a TBI or similar needs. This will include post acute rehabilitation, community reintegration services and those which support return to school, college and work.

This working group should include representatives of all relevant agencies probably including Scottish Office Health Department and Social Work Services Group, Employment Services, Local Authority social work, education and housing departments, Health Boards and Trusts, Independent and Voluntary Sector providers.

It should be asked to report within a short timescale.

BRIEFING PAPER—BRAIN INJURY SERVICES IN SCOTLAND

1. INTRODUCTION

1.1 The Scottish Head Injury Forum (SHIF) is the umbrella body for all those concerned with the development of services for people with acquired brain injury in Scotland. It is very broad based incorporating health professionals, service providers, head injured people and their carers.

1.2 S.H.I.F. has produced a general Information Document which has been circulated to Local Authorities, Health Boards and others. A copy is attached[1].

1.3 This briefing has been prepared to provide additional general background information and to highlight key issues for future services in Scotland.

2. NUMBERS

2.1 Data produced by the Scottish Office Information and Statistics Department (ISD) show discharges by parliamentary constituency in 1995. (Appendix 11)

This shows 13,379 patients aged 14 years and over discharged alive with a diagnosis of skull fracture (4,164) or intracranial injury (9,215), excluding deaths. SHIF estimates that some 5,700 have moderate to severe injuries, of whom 800 are categorised as severe.

5,225 children aged 0-13, predominantly (3,665) with intracranial injury, were discharged in the same year, excluding deaths.

2.2 Approximately 10 per cent of acute admissions are likely to require referral to a neurosurgery unit. It is assumed for the purposes of this document that as the more severe cases, they are also likely to include those most likely to require rehabilitation. Thus on this basis in 1995 the potential demand for specialist rehabilitation services was up to some 1,300 places. This is probably an upper limit, however. Given that many with simple skull fractures may not require such services a lower estimate of the order of 600 may be more accurate.

2.3 A substantial number of those who do not require specific medical rehabilitation experience problems reintegrating into the community and getting back to work. West of Scotland research (Brook et al 1987) showed no more than 29 per cent returning to work unaided. Allowing for retirement and permanent incapacity, there is a need for community reintegration and return to work services for some 2,000 people annually.

3. HEALTH SERVICES

3.1 Acute services

Acute Brain Injury is treated initially at District General Hospitals (DGHs). Normally these do not have neurospecialists. Those requiring specialist services (specifically surgery or neurosurgical intensive care) are transferred to one of four regional units at:

— Southern General Hospital, Glasgow.

— Western General Hospital, Edinburgh.

— Dundee Royal Infirmary.

— Aberdeen Royal Infirmary.

3.2 After investigation and surgery, as required, they will be referred back to the DGH whence they came. Whether they receive rehabilitation thereafter is something of a lottery since it seems to depend largely on other injuries.

3.3 Rehabilitation Services

In 1990 bids were invited for the provision of specialist rehabilitation services for people with a brain injury. Seven bids and two "expressions of interest" were submitted and contracts were awarded to:

Scotcare.

Astley Ainslie Hospital.

Robert Fergusson Unit.

3.4 The services were subsidised originally from 1991-92 to 1993-94, but this was extended by one year to March 1995. The extent of the subsidy, which ranged from 16 per cent to 21 per cent is shown on the attached (source Scottish Office). (2) Costs are per week.

3.5 Even with the (small) subsidy, some Health Boards appeared reluctant to refer people. Referral mechanisms were unclear, for example to GPs. and could take months. Follow through was weak, so even after time in a specialised unit, transition to community based services was unclear (partly because there were not a lot of services). There have been some improvement in these aspects, but nonetheless there are continuing problems.

3.6 Figures provided by the national units (3) to the Scottish Office show that in 1996-97 a total of 225 people used the national units. It may be that this represents the total real demand but this seems unlikely. It is less than half the minimum estimate of 600 given in paragraph 2.2 above. It is also apparent that access to these services is geographically uneven.

3.7 This is particularly concerning since it appears that access to specialised services depends not on clinical need but rather on where the person lives and whether they have the luck to be involved with professionals who have a particular interest in the field.

3.8 A further problem is geography. All the units are in the central belt, within 30 miles of each other. If a patient comes from a distance, it can be difficult to travel. Rehabilitation is about reintegration. It is clearly more of a problem to achieve this where the service is provided hundreds of miles from where the person actually lives.

3.9 The Scott Report (Rehabilitation Service in Scotland, Scottish Health Services Advisory Council 1993) made a number of comments (see attached extract) (4) They also remarked that, for all disabilities:

"Rehabilitation is more about getting back to work, golf and sex, (although not necessarily in that order!), than it is about getting home from hospital. Unless these and other aspects of a patient's life have been considered and managed, the patient cannot truly be said to have been fully rehabilitated; nor can Health Boards that ignore these aspects be said to have a rehabilitation service".

3.10 More recently, some hospitals have developed teams specialising in Brain Injury rehabilitation. This really depends on local interest. In some areas, particularly more remote ones, there are major problem with resources. Thus the Aberdeen (ARI) Neurosurgery Unit covers the whole of the Highlands and Grampian. Their response has been to keep people longer e.g., up to three months, rather than discharging within a week, which is the norm in the central belt.

3.11 At local level, the lack of specialists means a lack of service, Aberdeen provides a Neuropsychologist 2 days every two months to Raigmore Hospital in Inverness. The waiting list to see him is now 18 months.

4. SOCIAL WORK AND COMMUNITY SERVICES

4.1 The recent Social Services Inspectorate for England and Wales Report A Hidden Disability (Department of Health, July 1996) provides useful background information. The "Hints and Tips" provided with the full report provide a reasonable summary (copy attached). (5) The Report emphasises that attempts simply to map the needs of brain injury survivors onto existing provision for other groups are inappropriate and ineffective and that joint health/social work commissioning and purchasing of services is essential if a proper seamless continuum of services is to be provided.

4.2 Community based services in Scotland for this group where they exist are generally ahead of England. This is for three reasons:

(1) Availability of Mental Illness Specific Grant (MISG) following decision of August 1991 to allow its use for head injury.

(2) Decision by Strathclyde Regional Council to top slice MISG providing 10 per cent for brain injury. A Strathclyde Forum for Brain Injury Service Development was created by SRC, including the four Health Boards and voluntary and private sectors (Scotcare) providers together with Social Work.

(3) Existence of the "National Units" created a demand for follow through.

4.3 The attached (six) summarises the position of Scotland to the end of 1995-96. (Source: Scottish Office).

4.4 It is clear that services have developed rapidly. Principal users of MISG have been:

Rehab Scotland

Vocational and Prevocational services

Head Injuries Trust for Scotland

Community Rehabilitation, Information Resource and Counselling Service.

Headway

Headway House, Edinburgh, Dumfries.

Development Worker, e.g., Ayrshire.

Social Work Departments

Development Workers, e.g., Tayside, Lanarkshire.

"Throughcare" projects. Southern General Hospital and Glasgow Royal Infirmary.

Home support workers, Kilwinning.

Housing Associations

Edinvar H.A.—domiciliary support service.

Because of the funding decision by SRC (and its scale) the bulk of services are in that (former) region.

4.5 MISG was frozen for 1996-97 and 1997-98 at 1995-96 cash levels because of local Government reorganisation. Lord James Douglas Hamilton said at a SHIF meeting on 21 October 1996, that it was secure until the end of 1998. The new Minister, Sam Galbraith MP announced no cash increase for 1998-99. The funding is being evaluated and a decision on its future is expected before the end of this year. Clearly this is a major issue for services.

4.6 Community Care Planning

All those concerned with Brain Injury issues have worked to get specific reference included in the Community Care Plans. This has been successful in some but not all cases. A good example is Glasgow (copy attached(7)). A specific target of S.H.I.F. has been to have Community Care Planning Guidance amended to recognise brain injury as a specific group. At the S.H.I.F. AGM on 13 June Scottish Office Minister, Sam Galbraith MP, agreed to this change (copy attached (8), 3rd page). This is very welcome.

4.7 There continues to be a difficulty in some areas where the boundaries between health and social work responsibilities are rigid. In addition the disaggregation of former regional budgets and the high cost of specialist services for perceived small numbers have exacerbated funding difficulties of some services.

5. SERVICES FOR CHILDREN WITH TBI

5.1 The absence of a specialist multidisciplinary rehabilitation centre for children with TBI in Scotland is a glaring gap in service. The nearest such service is in Lancashire, while most children from Scotland attend services south of London. It is believed that a relatively small number of children actually get such treatment (10-12 per annum) and it is not known how many would benefit from treatment at a less intense level. Given that nearly 3,700 children were discharged from hospital following intracranial injuries in 1995, it seems likely that the number accessing services is only a tiny proportion of the real demand.

5.2 There is limited outreach work carried out from the Southern General Hospital, but this operates with minimal resources.

5.3 There is also a need to develop a service to support children in school and back into the community. The effects of TBI on children are lifelong and may not appear for many years. Because the effects of TBI are poorly recognised or understood by teachers, such children's problems may be misinterpreted. In 1997 SHIF proposed a pilot project to the European Commission for the creation of a low intensity support service to schools, teachers and individual pupils for the reintegration of children back into mainstream school. Unfortunately due to the level of competition, it was not successful.

6. RESEARCH AND PILOT PROJECTS

6.1 The Department of Health set up 12 innovating projects in England for head injury from 1992-1997 (£1 million per year for five years). Now that their funding has ended, some projects have closed. No pilots were set up in Wales (see Welsh Affairs Committee Report: ref: HC103 I and II) or in Scotland. The evaluation report is with the Department of Health and it is understood that it may be published later this year.

6.2 Some other research is going on at various levels but these tend to be small scale or academic. there are two pilot projects funded under the E.U. Horizon programme. As always with European funding, the problem is to secure match funding and to pay for the service once the ESF funding ends.

6.3 A number of hospitals based research teams, for example at the Southern General Hospital, are engaged in research and follow up studies.

Recent research by Professor G M Teasdale and Professor J McEwen (Hospitalised Head Injury, Sequelae, Rehabilitation Service and Outcome 1998) has now been accepted by the Chief Scientist's Research Committee. This one year follow-up study showed that even in cases of severe disability on 39 per cent had received any rehabilitation service or social work support.

7. KEY ISSUES

7.1 Availability of Services

7.1.1 Overall the total provision of services is inadequate and woefully so in some key aspects, e.g., neuropsychology in North/North East Scotland.