Memorandum by the Stroke Association
RELATIONSHIP BETWEEN HEALTH AND SOCIAL SERVICES
(HSS 13)
MAIN AREAS
OF CONCERN
8. Discussions within the Association have
revealed two, related, areas of major concern.
(i) Discharge planning arrangements are variable.
In many areas the basic guidance contained in the Patient's Charter
on "Leaving Hospital" is adhered to only loosely, if
at all.
(ii) Poor discharge planning compounds problems
with timely provision of services, aids and adaptations necessary
to allow people to live with dignity at home, and continue their
recovery to the fullest extent possible.
Discharge planning
9. The Patient's Charter states that:
"Before you are discharged from hospital,
you can expect a decision to be made about how to meet any needs
you may continue to have. Your hospital will agree arrangements
with agencies such as community nursing services and local authority
social service departments. You, and if you agree, your carers
will be involved in making these decisions and will be kept up
to date with information at all stages."
Note: "expect" has the specific
meaning within the Charter of "standards of service which
the NHS is aiming to achieve" with the caveat that "Exceptional
circumstances may sometimes prevent these standards being met".
It is clear from the Association's experience
that it is not only in exceptional circumstances that discharge
planning is inadequate.
10. The involvement of social workers in
discharge planning is not always regarded as essential.
While patients and carers may to varying degrees be involved in
the discharge planning process there is little recognition that
such discussions are taking place at a time of high stress for
the individuals most directly involved. This means that information
may not be retained particularly well (compounded in the case
of stroke by the possibility of communication or memory problems).
Patients are often not provided with any written summary of discharge
planning arrangements to refer to at a later date.
11. If too few discharge plans are completed
satisfactorily, still fewer are given adequate follow through.
This is especially true where there is no named person to take
ownership of the plan and its implementation. Our information
centres are often contacted by people once they have been discharged
asking for advice on how they should go about having a particular
need met. The reasons why such people contact the Association
are illuminating. They are often unclear as to which agency they
should approach to meet a particular need. They either approach
the Association at that stage or attempt to resolve the problem
themselves. The absence in many cases of a designated social worker
makes this a difficult task which often leads to a frustrated
patient calling the Association for advice. The lack of clarity
relating to agency responsibilities is a formidable barrier to
the use of services.
12. The Association would like to see greater
emphasis on properly structured discharge planning. It is the
key to the provision of a seamless service to patients moving
from hospital to home. Social workers must be involved
in discharge planning if it is to be effective. Patients, and
carers if appropriate, must also be involved and should be provided
with a plain language written summary of what has been agreed.
This written summary should form part of a discharge pack naming
a responsible professional to act as contact point for any queries
which arise once the patient has left hospital, and which also
gives clear guidance on which agencies are responsible for which
services. It should also cover arrangements for assessment of
need for, and provision of, aids and adaptations necessary for
the patient to manage at home.
Timely provision of services, aids and adaptations
13. The continuation of rehabilitation begun
in hospital is essential for the proper recovery of stroke patients.
It may, however, be several weeks before therapy is resumed in
the community. There are areas where discharge from hospital onto
a waiting list for outpatient physiotherapy is the norm. This
is unsatisfactory from the patients' point of view. Nor is it
cost effective if patients require additional treatment because
their recovery has regressed.
14. Problems with the provision of aids
and adaptations required for bathing cause great distress. Our
field staff highlight delays or non-provision of such aids and
adaptations as a particular area of concern. One staff member
remarked that "If the parameters of a patient's life have
narrowed, difficulties with personal cleanliness can become a
major quality of life issue. Having to survive on strip washes
for 12 months is unacceptable".
15. There are two sets of difficulties:
extremely lengthy waits for assessment and restrictions on provision.
(i) Lengthy waits for bathing assessment
are common. A couple of examples drawn from out regional staff
highlight the problems. A patient unable to bathe himself applied
for bathing aids in September 1996 and endured a nine-month wait
before even being assessed by social services. A bathing seat
was recommended. Only after extensive involvement by a Stroke
Association Family Support Officer was a seat finally installed
in November 1997 allowing the person to bathe himself. Another
patient—disabled and incontinent—applying for a shower
in October this year was informed of a five-month wait for assessment.
(ii) In many areas only the presence of a
particular medical condition, such as incontinence or a skin complaint,
will trigger the provision of bathing aids. Quality of life considerations
for both the patient, and often also for the carer, are often
not considered sufficient justification for the provision of aids.
16. The Association's welfare section makes
a number of grants each year to people who fall outside the criteria
used by their local social services department for the provision
of bathing aids. The grants given are relatively small, but adaptations
costing £100 or less can purchase the ability for a disabled
person to have a bath or shower.
17. Waiting times for non-bathing aids and
adaptations mirror those described above. One of our regional
staff has described the provision of stairlifts and ramping as
having "timescales so long as to make provision theoretical
rather than real". Waits of several months for wheelchairs
effectively confine a patient to home.
18. The Stroke Association believes that
action should be taken in the following areas:
(i) Discharge plans must include provision
for continuing the rehabilitation begun in hospital without any
delay which would hinder the patient's recovery. Patients should
not be discharged without such arrangements in place.
(ii) At a practical level, a properly organised
programme for recovery of aids which have proved unsuitable for
patients, or which are no longer necessary, would provide short-term
alleviation of some waiting problems. However, a thorough review
of the provision of aids and adaptations is necessary if community
care is to be an effective means of meeting the needs of those
who return home from hospital with a degree of disability.
(iii) The Stroke Association considers that
the criteria for supplying bathing aids must be widened, and applied
consistently across the country. Cleanliness is essential to personal
dignity and this should be taken into account in the criteria
used for assessing need, and in the priority given to assessments
and provision.
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