Select Committee on Health Appendices to the Minutes of Evidence


Memorandum by The Stroke Association (DD 23)


    —  The Association's delivery of support to those who have had strokes, and their carers, gives a broad hands-on perspective of the provision of integrated treatment and care. The nature of stroke, which starts as an acute medical emergency, presents complex care needs and may lead to long-term disability, collapses the need for assistance into a shorter timescale than many other conditions and demonstrates the need for the co-ordination of health and social care services.

    —  Organised stroke care provides an example of how an integrated multi-disciplinary service can facilitate a smooth transfer of care from hospital to the community and provide a continuum of care for the patient. Early implementation of the stroke standard within the National Service Framework for Older People, which applies to stroke patients of all ages, would address many of the issues around delayed discharge.

    —  Community-based rehabilitation teams offer an alternative to hospital rehabilitation but providers need to be clear about what of kind team is required to meet their needs.

The Stroke Association

  1.  The Stroke Association is the country's leading charity solely concerned with stroke. Every year about 110,000 people in England and Wales have a first stroke and 30,000 go on to have further strokes1. It is the third largest cause of death2 and the largest cause of severe disability3. Over 300,000 live with severe disability as a result of stroke4. We provide support to people who have had strokes, their families and carers. We campaign, educate and inform to increase knowledge of stroke at all levels of society. We run an information and education service, provide publications and welfare grants.

  2.  The Stroke Association also funds and promotes research which will enhance knowledge both of the frequency, causes and outcomes of stroke; and of the effectiveness of interventions aimed at stroke prevention, diagnosis, treatment, rehabilitation and care.


  3.  Stroke is a unique condition. It starts as an acute emergency, presents complex care needs and may lead to long-term disability. The effects of stroke can vary enormously and depend on which part of the brain has been damaged and the extent of that damage. Stroke can lead to physical, communication, psychological, cognitive and perceptual impairments, or combinations thereof. The health and social care needs of those affected by stroke are diverse.

  4.  It has been estimated that stroke patients occupy around 20 per cent of all acute hospital beds and 25 per cent of long-term beds (including nursing homes)5. People who have had strokes accounted for £2.3 billion, 5.8 per cent of NHS and social services expenditure in 1995-96. This figure is expected to rise by 30 per cent in real terms by 20236.

  5.  The treatment and care of stroke patients will involve medical, nursing and therapy staff. Many of those affected by stroke will be left with long-term care needs, which will span both health and social services. The co-ordination of a number of agencies will be required in order to bring together a package of care to enable stroke patients to leave hospital and to receive, or continue, rehabilitation in the community to maximise their independence. In our experience, arrangements and services are not always in place to facilitate timely transfer of care from one setting, or agency, to another. The Stroke Association therefore welcomes the Select Committee's investigation into delayed discharge. For those affected by stroke, the discontinuity of treatment and care between hospital and home is a major source of concern.

  6.  This submission is based both on the results of research and evaluation, and on the experience of work undertaken by The Stroke Association. It examines aspects of current service provision and aims to identify good practice. We would be willing to provide further information, or to present oral evidence, should the Committee consider this helpful.


  7.  The term "discharge" is often, for the patient, associated with feelings of abandonment. This is particularly true for patients who have experienced a life-changing event such as a stroke, who have to overcome or cope with the damage the stroke has caused and the difficulties this creates for daily living. The term "discharge" is also unhelpful in promoting a whole systems approach between secondary and primary health care teams and social care agencies.

  8.  The use of the term "transfer of care" in place of "discharge" would address these concerns. The patient would feel confident that the continuum of care was being maintained. The language would also reinforce the idea that health and social care services are part of a coherent whole. Planned discharge from hospital is, after all, about transferring care from one setting to another.

  9.  The Audit Commission undertook a review of rehabilitation services for older people. Their report The Way to Go Home7, published in June 2000, took stroke as a tracer condition, and made recommendations for improving the economy, efficiency and effectiveness of services provided by local authorities and the NHS. They stressed that individual services should not operate in isolation, and that a strategic approach and understanding between different parts of the health service and between health and social care is important. The Stroke Association would reinforce the need for the report's recommendations to be implemented in full. District audits of stroke services have now been completed in every health economy. The results are expected to inform further recommendations for improvements to service.


  10.  Organised inpatient stroke unit care is characterised by coordinated multidisciplinary rehabilitation, programmes of education and training in stroke and specialisation of medical and nursing staff. An integral part of organised stroke care is the early and coordinated planning for the transfer of care from hospital to the community, or to another care setting.

  11.  A systematic review of all the randomised trials which compared organised inpatient stroke care with contemporary conventional care demonstrated that stroke units reduced death, disability and institutionalisation. Researchers also found that there was no systematic increase in the use of resources in terms of length of stay, which was reduced (by 8 per cent) in some instances8. The Royal College of Physicians' sentinel audit of stroke services (second round) carried out in 1999, found that only 26 per cent of stroke patients were being managed on stroke units9. The College's third audit is now in progress.

  12.  The National Service Framework for Older People10 sets standards for stroke treatment and requires general hospitals who care for people with stroke to have a specialised stroke service by April 2004. Recent work carried out by The Stroke Association has identified 188 stroke units in England, which means significant gaps in provision exist. Of those acute trusts reporting no stroke unit in one or more of their general hospitals, only half had plans in place to develop a unit by the target date. In addition, it was also apparent that in many cases, existing stroke units are still not able to treat all stroke patients within their area and expansion of current provision is required to ensure that patients of all ages who have had a stroke have access to this type of care.

  13.  The Stroke Association wishes to see all patients who have had a stroke treated within an organised stroke service. The admission of patients to stroke units would not only ensure they were receiving this life-saving care, accessing multidisciplinary teams and participating in a coordinated programme of rehabilitation, but would smooth the way to better co-ordination of their transfer of care from one setting to another with the potential to reduce length of stay as well as improving the outcome for patients.

  14.  We would urge that priority be given to the implementation of the stroke standards within the National Service Framework for Older People at the earliest opportunity. It is shocking that stroke has not been named as an area for action in the Department of Health Priorities and Planning Framework for 2002-03. The allocation of funds to pump-prime the reorganisation of stroke services, set up stroke units and to train staff would not only use existing resources more effectively but also address many of the problems surrounding delayed discharge for stroke patients. The Stroke Association is concerned at the apparent lower priority given to the NSF for Older People when compared to the Cancer Plan and other existing NSFs.


  15.  Home-based community rehabilitation for people with stroke has recently come to be regarded as offering potential benefits over hospital rehabilitation such as saving money, allowing patients choice and improving outcome. While research continues to evaluate outcome, relatively little attention has been paid to variations in structure, methods of working and organisation that exist among such organised community teams.

  16.  An opportunity to examine such variations was provided by a competition organised by The Stroke Association, which recognised that while existing services for stroke were largely provided in hospitals, need extended far beyond acute hospital care. Six community rehabilitation teams providing co-ordinated, multidisciplinary rehabilitation for people with stroke have been evaluated11. A taxonomy of four types of community-based rehabilitation have been identified:

    —  early-supported discharge rehabilitation aimed to reduce length of hospital stay and offering an alternative to hospital rehabilitation;

    —  post-discharge rehabilitation providing additional rehabilitation and aiming for a seamless transfer of patients from hospital to community;

    —  General-practitioner-oriented post-stroke rehabilitation providing an alternative to hospital admission and rehabilitation;

    —  late community rehabilitation providing patients with the opportunity of an autonomous service, unconnected with hospital or GP referral.

  17.  Researchers have identified factors which contribute to the smooth running of such teams including the integration and involvement of the team in the discharge process to ensure a smooth transfer of care. The researchers undertaking this evaluation have concluded that purchasers need to decide what sort of team may be required to address their particular problems.


Family Support Service

  18.  Family Support is a visiting service which provides practical information and emotional support for the families and carers of people who have had a stroke. It aims to help prepare families and carers for the changes they will have to make as a result of the stroke, and to ensure they are able to cope and have the best possible quality of life.

  19.  Pioneered by The Stroke Association, the service is delivered by family support organisers. The organiser will visit stroke patients while in hospital and then make at least two home visits before and after discharge. The organiser also provides support to families of stroke patients who are not admitted to hospital.

  20.  The family support organiser, with the patient, carer and the health team, is actively involved in the planning for transfer of care of the patient from hospital to the community. They offer practical advice, emotional support and information at various stages of recovery, to enable patient and carer understand what has happened and come to terms with the life-changing effects of the stroke. If appropriate, the organiser will refer the family to more specialised sources of help, such as centres for aids and equipment. This service is provided under contract to the NHS. In many cases, the family support organiser is an integral member of the multi-disciplinary stroke team.

  21.  The involvement of a family support organiser smooths the way for a better coordinated transfer of care from hospital to community, supporting families and carers, often overlooked in this process, to better cope with the changes that stroke brings. Those receiving this service confirm that access to clear and timely information provided by the family support organiser is key to this process. We would stress the importance of providing patient and carer with information at every stage of their treatment and recovery.


  22.  The Stroke Association's Home Therapy Service was launched in October 1999, and had teams based in Sunderland and Bishop Auckland. Its objective was to provide a home-based service for stroke patients, developing the skills and confidence of stroke patients in their home environment and the wider community, by focusing intensively upon practical domestic and social activities.

  23.  Referrals were made at the point of transfer of care from hospital to home. Those patients who were accepted into the service received up to eight weeks home-based service provided by occupational therapists and assistants. The intensity of the therapy depended on the individual needs of each patient, who was involved in setting and prioritising their own goals.

  24.  The two-year project is being evaluated, focusing on the patient's level of independence in daily living tasks, together with patient and carer quality of life. Emerging findings suggest that eight weeks of occupational therapy intervention can increase levels of independence in patients with stroke on transfer of care from hospital, speed up hospital discharge, decrease stress on carers and work in partnership with other community services. The pilots have now been absorbed into mainstream services.

January 2000


  1.  National Service Framework for Older People. Department of Health, 2001.

  2.  OPCS 1995.

  3.  Health Survey for England 1995.

  4.  Prevalence from Geddes, 1996. Population OPCS mid year estimates 1994.

  5.  Wade DT. Stroke (acute cerebrovascular disease). Health care needs assessment. Vol 1. Oxford: Radcliffe Medical Press 1994: 111-255.

  6.  Stroke care: reducing the burden of disease. The Stroke Association 1998.

  7.  The Way to Go Home. Rehabilitation and remedial services for older people. The Audit Commission, 2000.

  8.  Stroke Unit Trialists' Collaboration. BMJ 1997; 314:1151.

  9.  Rudd AG, Lowe D, Irwin P, Rutledge Z, Pearson M. National stroke audit: a tool for change? Quality in Health Care 2001;10:141-151.

  10.  National Service Framework for Older People. Department of Health 2001.

  11.  Home-based rehabilitation for people with stroke: a comparative study of six community services providing co-ordinated, multidisciplinary treatment. Geddes JML, Chamberlain MA. Clinical Rehabilitation 2001;15:589-599.

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