Memorandum by The Stroke Association (DD
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
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
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
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
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;
rehabilitation providing an alternative to hospital admission
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
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
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.
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.