APPENDIX 9
Memorandum by Southern Derbyshire Head
Injury Service (H24)
EXECUTIVE SUMMARY
Southern Derbyshire (population 540,000) has
gone someway towards providing an integrated service for the rehabilitation
and reintegration of local people with head injury. This has been
possible by the active and ongoing collaboration of the local
Health Service, Derbyshire County and City Social Services, Derby
Headway and the Leonard Cheshire Foundation.
The present services, although comparing favourably
with most health districts that have no dedicated head injury
service, are a long way short of what could be considered adequate.
Experience over the last eight years (since
we have had a service) has demonstrated:
1. A huge amount of previously unmet need,
beyond what our small service can meet. The needs reflect the
nature of the impairments resulting from head injury: ie cognitive,
emotional and interpersonal problems (rather than physical disability).
2. The need for a range of services which
are where flexible, rapidly responsive and inter agency where
necessary. Also the need for these services to be available life
long ie to allow regular or spasmodic contact with specialists
in Head Injury.
3. Gross service inequity in areas adjacent
to Southern Derbyshire. There is a complete absence of services
in Burton-on-Trent and much better developed services in another
adjacent health district (Nottingham). A more general source of
inequity exists between statutory services of all kinds often
a far superior level of service is available to people with access
to personal injury compensation funds.
4. The value of a specialist Health Service
case manger with a co-ordinator role, working within a multi-skilled
team. The role needs expanding and is probably the key to successful
services. Our colleagues in the Nottingham head injury team strongly
support this view.
5. The value and cost-effectiveness of non-professional
workers. They can be highly effective provided they have professional
support and direction.
6. The need (as yet unmet) for a family
support worker. This is currently our highest priority within
our service.
7. The need to improve the environment,
and to improve rehabilitation and care services for head injured
patients in hospital on acute general wards, while in the early
stages of recovery. At this stage one-to-one supervision may be
required, as well as input from professionals knowledgeable about
head injury rehabilitation.
8. The tendency for statutory services to
lack personal focus. In this respect Headway services are valuable
since they are targeted towards people with head injury and have
the additional advantage of being in the voluntary sector, but
with good Health and Social Service links.
9. The need to be able to occasionally fund
from statutory sources comprehensive specialist community support
packages for those who have serious impairments following Head
Injury, who will not receive personal injuries compensation.
10. The need for improved vocational rehabilitation
(as described in the recent British Society of rehabilitation
Medicine report). Funds and access must be available for local
vocational rehabilitation services but can be provided by specialist
agencies such as Rehab UK.
11. The desirability of extending the service
for people with traumatic brain injury to those with other forms
of acute acquired brain injury, such as anoxic brain injury following
cardiac arrests, anaesthetic misfortunes, drownings and encephalitis/meningitis.
The problems these people have are often similar to those experienced
by people who have head trauma. We have inadequate resources for
this purpose. Inequities arise from services, which are diagnosis-based
rather than needs-led.
12. Head injured patients with mental health
needs are often unable to access mental health services. Patients
who are a danger to themselves or others and who refuse treatment
can often not be treated under existing Mental Health Act legislation.
Furthermore, some such patients treatment needs are unable to
be met within existing statutory or private sector resources.
INQUIRY INTO
HEAD INJURY:
REHABILITATION
Southern Derbyshire was fortunate to be one
of the 12 sites in England and Wales to receive DOH funding in
the National TBI initiative of the early 1990's. This funding
allowed for the establishment of a specialist case management
post and a small dedicated therapy team for people with head injury.
The project was supported from the outset by Derbyshire Social
Services and the Southern Derbyshire Health Authority and the
funding was subsequently picked up jointly by both Health and
Social Services. There is a well-established care pathway within
Southern Derbyshire (Appendix 1).
The Nature and Size of the Problem in Southern Derbyshire
Every year in Southern Derbyshire (population
540,000) some 500 patients with head injury are admitted to the
Derbyshire Royal Infirmary for at least 24 hours. Over 70 stay
in for 72 hours or more and some 40-50 each year will need ongoing
rehabilitation input and support following discharge from hospital.
Only 10-15 will actually access the in-patient rehabilitation
unit and the majority of head injury rehabilitation and recovery
therefore takes place in the community and is concerned with reintegration
back into ordinary every day life and resumption of social, family
and employment activities. The majority of head injured people
do not have physical impairments and their problems are of a cognitive,
emotional and interpersonal nature and are therefore complex and
frequently very distressing and disabling with a major impact
on the lives of their families.
The Nottingham area (population 600,000) immediately
adjacent to Southern Derbyshire and 13 miles to the east of the
city of Derby, has a comparatively well developed head injury
service, whereas the Burton-on-Trent area (122,000) also immediately
adjacent to Derby and some eight miles to the west has no services
at all. There is therefore a considerable inequity in provision
of services to this client group. Even allowing for these variations
those patients who receive personal injuries compensation can
expect to receive a very much superior service especially with
regard to the funding of ongoing personal support packages or
specific targeted rehabilitation. Arranging specialist services
or care/support packages thus becomes a lottery, dependent upon
where patients live, and how they received their injury.
2. HEAD INJURY
REHABILITATION SUPPORT
SERVICES IN
SOUTHERN DERBYSHIRE
These currently comprise:
1. Head injury case management and therapy
with only one full-time post (a case manager) and part-time therapy
staff (currently 2.35 WTE's) for a very high intensity, difficult
workload.
2. A rehabilitation medicine consultant (0.2
WTE) providing a roving service for in and out patients and an
out-patients clinic.
3. A clinical neuropsychologist (0.5 WTE
available for head injury).
4. Access to a general neurological rehabilitation
unit when there is a bed available (admission is often delayed).
5. Leonard Cheshire support workers from
a local day service provide a total of 37 hours a week for community
reintegration work, and have been remarkably effective (see Anna
Bristow's evaluation report) (Appendix II).
6. Derby Headway provides a Headway House,
a drop in centre with social activities, a befriending service,
counselling and confidence building activities. This has been
invaluable, helping people who are being discharged from rehabilitation
services and supporting individuals and their families. People
with head injuries do not fit in well with local authority provision
in day centres, as these services can be inappropriate to their
needs.
3. CURRENT PRESSURES
ON SERVICES
1. There is the usual wide dispersal of
patients in the early stages of recovery from head injury throughout
the acute general and specialist wards in the Derby hospitals.
There is a lack of consistent informed management and currently
little or no neuro rehab therapy is available.
2. There is often a lack of routine one-to-one
supervision/reassurance of patients who are acutely disorientated/confused
and distressed (such patients will occasionally inappropriately
receive medication in order to "quieten them" and make
management easier). The situation is improving but needs constant
vigilance because one-to-one supervision is costly.
3. There is a lack of ability to make a
rapid response by Social Services to support families when a patient
who is still confused is suffering from short term memory loss
or is agitated to some extent, and insists on going home. There
are not large numbers of such patients and the problems will be
transient usually over a matter of weeks, but are very difficult
to manage in hospital. The patients are often much more settled
at home but need supervision and the families need considerable
support both of which at present is not available. The situation
if not managed will present potential risks of accidents, eg falls
down stairs, crossing the road.
4. Inability to fund adequate community
support packages (or any support package at all) in a timely fashion.
This is usually due to funding disputes over which agencies should
contribute and to what extent. Also people with head injuries
often need specialist carers which increases the costs of any
agreed packages. This leads to huge delays both in hospital discharge
and into the provision of a package to a person who is already
in the community. This produces a high-risk situation both from
self-harm by the patient, harm to others and to avoidable accidents.
It also increases the stress on the family carer which can lead
to family breakdown. The introduction of a lead PCT locally should
facilitate availability of funding from the health sector, but
fragmentation of funding arrangements in social services continues.
5. Having a service raises expectations
and stimulates referrals, but due to the small size of the team
it is difficult to offer a timely service and this has led to
rationing and a waiting list. We have identified that this results
in stress to families and individuals and can result in relationship
breakdown, job loss and longer treatment times. Lack of appropriate
services to pass patients onto makes discharge difficult and compounds
waiting list problems. A priority system has been introduced.
It is interesting to note that nearly 90 per cent of those seen
within one month of referral during 1999-2000 have been discharged,
whilst only 27 per cent of those seen within two to six months,
have been discharged, the remaining 73 per cent are still receiving
therapy or support.
TABLE TO SHOW INCREASE IN REFERRALS AND LENGTH
OF TIME AWAITING INTERVENTION
| Year (April to April) |
Number of Referrals | % Increase (on previous year)
| No. Clients waiting more than recommended time for assessment
| Min/Max wait |
| 1997-1998 | 71 |
| No waiting list | 1-4 weeks
|
| 1998-1999 | 82 | 15.5 per cent
| 7 (introduced January 1999) | 1-18 weeks
|
| 1999-2000 | 101 | 23 per cent
| 15 | 6-24 weeks |
Figures for 2000-01 indicate a similar trend and the waiting
time has increased to 31 weeks.
6. The lack of a family support worker means staff become
embroiled in trying to cope with the problems of distressed families
and therefore have less time to focus on the patients' problems.
Families are often under intolerable stress or strain and have
different needs from the patient. Research has shown that the
level of stress experienced by this group is more than any other
disability group and that failure to support families leads to
less successful outcomes. (Johnson 1991)
4. SERVICE PLANNING
ISSUES
1. In head injury each case is unique, and it is impossible
to predict service and support needs in advance of clinical contact
on the basis of demographic or medical details, making service
planning difficult.
2. People with severe head injuries require long-term
specialist support from people experienced in head injury work,
who are aware of their individual history and problems. Some patients
require ongoing regular contact or review, whilst some can be
supported on an ad hoc basis by telephone. These characteristics
of the varying needs of different patients are illustrated by
the local clinical neuropsychologist's current caseload. His 59
current open cases include people injured from March 1981. 14
per cent of the caseload are due to injuries occurring more than
five years ago. The neuropsychologist recently had a telephone
consultation with the wife of the first patient he saw in Derby
11 years ago. One patient still being seen regularly for psychotherapy
in connection with the consequences of his head injury in July
1998 has been seen for a total of 86 sessions to date, whilst
several are likely to only require between two and five sessions
of assessment and advice.
3. Services around the country comment on the difficulties
caused by the artificial boundary between mental health and head
injury services. It is often difficult to access psychiatric support
either acutely, or long term, when head injured patients present
with frank mental disorder or challenging behaviours, as such
patients are seen as "non-psychiatric" if they have
a neurological history. Of further concern is how to contain the
behaviours of people known to be, or potentially be, a risk to
themselves or others, if they are unwilling to voluntarily submit
themselves for treatment. Even if they are willing to have treatment,
some specialist interventions are often not available. We have
several local examples both of extreme incidents of deliberate
or inadvertent self-harm, and of harm to others, which were predicted
or predictable. These include suicide, and a sexual assault on
a minor.
4. Local, national and international experience suggest
that even if specialist head injury rehabilitation is expensive
and labour intensive, its provision saves the treasury more money
overall than it costs. These savings accrue from areas such as
reduced uptake of state benefits, carers or patients returning
to productive work and becoming taxpayers, or from patients requiring
lower levels of support from other services. Some patients require
access to specialist vocational rehabilitation elsewhere, such
as at Rehab UK, a charity operating in Birmingham, among other
sites. We have occasionally been able to fund such rehabilitation
via compensation claims, but have been unable to access this via
health, social services or employment resources.
5. Current criteria do not allow for follow up of those
who sustain a Minor Head Injury. A pilot review of orthopedic
patient statistics indicated that about 23 per cent did not meet
current criteria but were identified as also receiving a head
injury reported typical head injury symptoms and may therefore
be experiencing ongoing social and vocational difficulties. The
same review highlighted that 13 per cent of patients over 65 would
benefit from further assessment.
6. In addition the small size of our local service prevents
us from helping people with other forms of acute acquired brain
injury, such as anoxic brain injury following cardiac arrests,
anaesthetic misfortunes, drownings, and encephalitis/meningitis.
The problems these people have are often quite similar to those
experienced by people who have head trauma.
February 2001
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