Memorandum by Philippa Stilwell (H 77)
I was a member of the Warwick University Team
which evaluated the National Traumatic Brain Injury Study, and
which reported to the Department of Health in October 1997. I
was also a member of the Social Services Inspectorate team which
produced the report on personal social services for people with
head injury, entitled A Hidden Disability (DoH 1996).
Three main points are made in this memorandum:
(a) The absence of suitable outcome measures
for evaluating the success of community-based rehabilitation services.
(b) The importance of assessing cross-sector
benefits when evaluating community based rehabilitation services.
(c) Concern about the absence of a specific
user group to include people with head injury, in the Supporting
1. Factors influencing outcomes of traumatic
brain injury are extremely complex, and the characteristics and
social circumstances of those undergoing rehabilitation are extremely
diverse. It is not possible to identify a single method of rehabilitation
which could be held up as a model for all teams.
2. The Warwick Team identified a dearth
of suitable outcome measures to assess the benefits of rehabilitation
following community re-entry, and developed their own measure
based on the patient's assessment of the resolution of "problems"
following interventions by community based teams. Many of these
problems were not directly within the remit of the rehabilitation
teams, but nevertheless had a huge impact on recovery: a fact
which is now acknowledged in the move towards "Joined up
thinking" between organisations. Many of the teams evaluated
proved themselves to be highly responsive to the problems of individuals,
and were prepared to negotiate with Education and Housing departments,
and with employers, in order to facilitate community re-entry
for their patients.
3. Given the impact of head injury on the
life of an individual, it is important to acknowledge the cross-sector
benefits provided by community based rehabilitation: without help,
patients and families often become extremely isolated and the
accident is often followed by family breakdown. Children may suffer
inordinately. Professional intervention, though not necessarily
able to prevent family breakdown, can offer support through the
process. It is likely that, without help, many people become involved
with the courts or the probation or prison services following
head injury. Therefore it is unrealistic to assess the benefits
of head injury rehabilitation solely in terms of benefits to the
health services, and as far as possible outcome measures should
take account of these cross sector benefits.
4. I am currently working in Local Government,
and have been doing some work on implementing the Government's
initiative Supporting People. Under this initiative, support services
will no longer be paid for through Housing Benefit, but via a
separate pot of money, currently being calculated by scrutiny
of the current arrangements for tenancy and other support. The
services included are to a great extent the sort of early intervention
and preventative servicesbefriending, advocacy, tenancy
supportof particular benefit to people with head injury,
and the move is greatly to be welcomed as these services will
no longer be tied to housing tenure.
5. For this reason, it is of great concern
that the user groups outlined in the Supporting People proposals
largely follow the old Social Services user groupsservices
for Older People, People with Mental Ill Health, and People with
Physical Disability, with the addition of other vulnerable groups
such as drug users and people suffering domestic violence. As
part of the Warwick Team, and also as a member of the Social Services
Inspectorate team responsible for the report "A Hidden Disability"
(DoH 1996) I am aware that people with head injury are often excluded
from accessing personal social services because they do not fit
the main eligibility criteria. Some authorities, such as Worcestershire,
have developed a separate user group of People with Complex Care
Needs: this includes people with cognitive problems but no obvious
physical disability or mental illness, and also people with degenerative
disease which progresses erratically. I think it is very important
that such a user group should be defined within the Supporting
People initiative, because without that head injured people may
again find themselves unable to access suitable services.