APPENDIX 15
Memorandum by Headway Cornwall (H31)
Services for the Management of Traumatic
Brain Injury in Cornwall
Introduction
Demography
The Evolution of the Cornwall Brain Injury Services
Hosptial in-patient Services
Health Authority Initiative
Alternative Funding from:
Provision from the RCH Trust
Posts that have been lost due to lack of funds:
Posts that have been disestablished:
Facilities Closed:
Loss of Community Rehabilitation Teams
Conclusions:
Recommendations
Appendix 1
Appendix 2
Appendix 3
Appendix 4
Appendix 5
INTRODUCTION
The present situation in Cornwall in 2001 is
that the services for people who have suffered brain injury are
patchy and inadequate, very much as they were in 1983. The purpose
of this memorandum, produced by Headway Cornwall, is to show that
there had been a much more comprehensive service, which developed
and flourished until about 1997, which has now disintegrated and
run down through lack of funding and direction. If the draft report
commissioned by the Cornwall Health Authority and Social Services
in 1997 were implemented now it could start the restoration of
a credible service.
DEMOGRAPHY
Earlier demographic studies suggested that about
1,500 patients suffer TBI in Cornwall each year. The figures produced
during the National Traumatic Brain Injury Survey v.i.
showed there were 4,700 patients who went through one or other
of the two A & E Departments in Cornwall between March 1993
and the end of November 1996. This represents about 1,700 new
attendances annually. Of these, 50 had very severe injury, 45
had severe injury, and 110 moderate. The remaining 4,497 were
mild (definitions at Appendix 1). Other studies show that 30 per
cent of patients recorded as having mild or moderate TBI may have
cognitive and executive problems severe enough to keep them off
work for more than three months. Most patients with TBI are young,
1995 of the Cornish cohort were under 25. Two thirds were male.
These figures substantiate the view that though
there is a low incidence of new severe and very severe cases,
they are mostly young, survive the initial danger period and then
have a lifelong disability and handicap with a normal life expectancy.
Therefore there is a growing prevalence of survivors with the
long term effects of severe TBI. This has a major and growing
impact on their families and the community services and is a perceived
unmet need. There is also a much larger group with milder, but
still significant injury, often left to find their own way, and
many fail. This pattern is not likely to have changed recently
and is another unmet need.
THE EVOLUTION
OF THE
CORNWALL BRAIN
INJURY SERVICE
Hospital in-patient Services
The development of the hospital brain injury
services started in approximately 1983 when Marie Therese House
(MTH), a Young Disabled Unit in Hayle was opened and the Cornwall
Stroke and Rehabilitation Unit (CSRU) developed in Tehidy Hospital,
Camborne. Both Units had a remit that included managing the effects
of traumatic brain injury (TBI). Even in 1986, 20 patients with
severe or very severe TBI were being admitted annually through
the Intensive Treatment Unit (ITU) to the CSRU. The operational
policy of the CSRU was maintained when it moved to the City Hospital
in Truro and the links with the ITU at Treliske were strengthened.
The cohesion of the Service was greatly enhanced
by the appointment of a Liaison Nurse between 1992 and 1997. At
that time the staffing on the CSRU included specialised Nursing
and Medical staff, Specialist Social Worker, two Physiotherapists,
two Occupational Therapists (OT), Speech and Language Therapist,
Art Therapist, and regular visits by an Optometrist and Dietician.
The Senior Clinical Neuro-psychologist worked from the same building
and the assistant Clinical Psychologists worked between CSRU and
MTH.
Community Services
By 1987 the concept of Community Rehabilitation
Teams (CRTs) had developed in Cornwall, and been published[3][4].
These teams integrated the work of Social Services and the Health
Authority personnel and were coterminous with Social Service areas.
They dealt with the consequences of TBI as well as disabling conditions
such as Stroke, Multiple Sclerosis and Paraplegia, especially
in the younger population.
In 1992 there were two more OTs and four more
part time Physiotherapists (PatH) based in the community and closely
linked with both the CSRU, MTH and the CRTs. Throughout this time
the CRT co-ordinated the work between Social Services and Health
Authority. This work was also published[5].
Headway Cornwall
Headway Cornwall was originally based at Tehidy
Hospital. It has moved to St Austell in the grounds of a school.
In April 2000 the unit was severely damaged by an arson attack
and it has now opened at a Leisure Centre in Lostwithiel where
at this stage of its development it is only able to offer a minimal,
though important, social rehabilitation centre. It is open two
days a week, but is difficult to get to for clients living in
mid and West Cornwall.
Cornwall Social Services
Social Services ran Kerensa, a Unit in St Austell,
which provided vocational rehabilitation from an excellent workshop
complex, and also respite and residential care as well as being
a base for community support. This has now closed. Although small
satellite centres have been opened they have little experience
in dealing with TBI and no specialist staff.
Nurisng Homes
There were, and still are, some Nursing Homes,
notably the Cheshire Home in Marazion, Kenwyn in Truro and Fairholme
in Camborne who take younger patients with TBI but this is not
always appropriate as the Rehabilitation input is small and most
residents old.
HEALTH AUTHORITY
INITIATIVE
The Cornwall and Isles of Scilly Health Authority
employed Sheila Coia, to assess the situation and to make recommendations.
She assessed the situation in 1997 and produced a practical draft
report. She included a list of the facilities for TBI available
then. (annex 2). The final version of the report has not been
seen by Headway but the report was submitted to the Health Authority
and Social Services. It has not been implemented.
ALTERNATIVE FUNDING
Research and Education
In 1992 Mark Sansom, an OT was appointed as
Research Worker at MTH to study the long-term consequences of
TBI. It was funded by the Nuffield Provincial Hospitals Trust.
In 1994 he prepared a paper[6]
describing an outcome study of patients with severe TBI and comparing
them with an earlier cohort from the Armed Forces. He specifically
looked at the stress on carers as well as on the patients. (Summary
at annex 3).
In 1994, a further grant was obtained through
the European Social Fund (ESF) to develop the Horizon project
in which educational resources for survivors of TBI were developed
in Cornwall through the Open Learning Centres in conjunction with
the rehabilitation services. Mark Sansom, again supported by Nuffield
Provincial Hospital Trust looked at the effects of this initiative.
He found that patients using the facilities offered through the
Open Learning Centres did better than those who did not, and there
was less stress perceived by their carers. [7](Summary
at annex 4).
Between 1992 and 1997 the Department of Health
undertook the National Traumatic Brain Injury Survey (NTBIS).
Twelve units in England and Wales were chosen out of over 80 applicants
and were given extra funding in order to develop their service.
The Cornwall Stroke and Rehabilitation Unit, in association with
the Intensive Treatment Unit, were successful in this bid and,
as a consequence, were able to appoint a Nurse co-ordinator, two
assistant Clinical Psychologists and secretarial support for the
principal Clinical Neuro-psychologist. These latter posts were
at the Stroke and Rehabilitation Unit at the City Hospital. The
nurse co-ordinator covered all the new admissions through West
Cornwall Hospital and The Royal Cornwall Hospital Treliske, and
Cornish patients who had been seen in Derriford Hospital, Plymouth,
assessed them and ensured that they were managed appropriately.
(Summary at annex 5).
Local Charities
A local charitable trust funded the four part-time
Physiotherapists in the community (PatH) for several years. This
service was ultimately taken over and funded by the Health Authority.
The Art Therapist post was funded for three
years and a community OT were funded by the same charitable trust
also for three years, but these four full time posts were not
extended.
European Social Fund
The European Social Fund had funded one Community
OT through the Horizon project. For a time this post lapsed, but
it now may be filled with money from the Guide Project, which
succeeds the Horizon project. This will be one facility in the
community available for people with TBI, though it is not now
exclusively for the group but by anybody with a disability, and
only a few people with TBI are now on the project.
PROVISION FROM
THE RCH TRUST
Pheonix ward (successor to the CSRU) together
with the core of therapists were, and remain, the responsibility
of the Royal Cornwall Hospital, now a Trust. Marie Therese House
was run privately, but is now also part of the Royal Cornwall
Hospital Trust. Marie Therese House continues to provide day care
and assessment for patients in its area in the Southwest tip of
Cornwall. They include some patients with TBI.
Posts that have been lost due to lack of funds:
Head Injury Liaison Nurse
2 Assistant Clinical Psychologists
1 Community Occupational Therapist
Art Therapist
Posts that have been disestablished:
Specialised Social Worker (as part of the withdrawal
of all Social Workers in the hospitals.)
Posts difficult to fill: Clinical Neuro-psychologists
Facilities Closed: Kerensa.
Community Rehabilitation Teams survive in only
two places; Kerrier in mid-Cornwall and Liskeard in the North.
Conclusions:
The consequences of TBI have never been given
sufficient priority by Social Services, Health Authority or Trusts.
All the service developments that took place were funded either
by research grants, charitable donations or the European Social
Fund. There is an urgent need to restore and develop the service.
At the moment, although there is a committee that has been set
up, no funds have been allocated or plans being made as far as
Headway can find out.
Recommendations
Re-examine the joint research sponsored by the
Health Authority.
— Appoint a Head Injury Liaison Nurse.
— Restore the Clinical Neuropsychology
Service, for mild as well as severe TBI.
— Develop the concept of Case Management,
from acute care into the Community to provide an integrated service.
— Look at links with employment and
developing the Guide project.
— Identify other activities for those
who may be unemployable.
— Re-establish Community Rehabilitation
Teams, or an equivalent integrating service.
Examine the reports from Mark Sansom to identify
unmet needs.
Annex 1
Definitions
Some of these definitions are derived from a
report from the Working Party of the British Society of Rehabilitation
Medicine (BSRM). This was first published in 1988 (McLellan 1988)
and second edition in 1998. (McLellan 1998).
Traumatic brain injury (TBI)
"Diffuse damage to the brain caused by
trauma to the head including the effects of the immediate consequences
of trauma such as lack of oxygen or low blood pressure. This definition
includes collapse during anaesthesia or after cardiac arrest".
Diffuse acquired brain injury
"Diffuse damage to the brain caused by
a wide range of medical conditions including such as encephalitis,
acute oxygen lack, subarachnoid haemorrhage and toxic encephalopathy.
Unconsciousness
In earlier studies the definition of unconsciousness
by Plum and Posner (1972) was "when communication returns
to better than "yes" or "no" allowing for
local impedimenta (eg tracheostomy, jaw injury)".
More recently unconsciousness is defined as
when "the level of consciousness scores 9 or less on the
Glasgow Coma Score (GCS)". The GCS has become accepted as
the standard measurement and is in use throughout the world.
Post-traumatic amnesia
"The time between the injury and the restoration
of continuous day to day memory is re-established". This
is different from the first remembered event or "islands"
and it implies the ability to acquire and retain new information.
It is difficult to apply universally because some sequelae of
head injury may mean that memory never returns to what it was
before, but it would not be likely that post-traumatic amnesia
(PTA) was an indefinite event.
Minor (Mild) brain injury
"An injury causing unconsciousness of 15
minutes or less or post-traumatic amnesia for less than six hours
and a GCS after original resuscitation of 13-15". This group
is often neglected as though most get better, a significant percentage
have problems after six months and help for this group to prevent
unnecessary loss of work should be available.
Moderate brain injury
"An injury causing unconsciousness for
more than 15 minutes, (but less than six hours) and a GCS, after
initial resuscitation, of 9-12". The older definition adds
"or a post-traumatic amnesia of between 6 and 24 hours".
Severe brain injury
"An injury causing unconsciousness for
more than six hours, but less than two days and a GCS, after initial
resuscitation of 3-8". The older definition includes "or
a post-traumatic amnesia for more than 24 hours, but less than
a week" (but see above for contemporary difficulties in definition).
Very severe brain injury
"An injury causing unconsciousness of more
than 48 hours or a post-traumatic amnesia of more than seven days."
Permanent (Persistent) vegetative state
"A profound form of brain damage where
the patient although having a sleep-awake pattern responds only
in a reflex way and shows no evidence of meaningful response to
the environment".
Annex 2
Extract from Provisional Report by Sheila
Coia on the Joint Health and Social Services Strategy for People
Suffering from Traumatic Brain Injury. 1997
"A framework of services for the head injured
already exists in Cornwall. Briefly, this comprises:
GP surgeries; relatively few TBI sufferers present
at their GP surgery in the first instance, and, for obvious reasons,
these tend to be the minor cases. GPs will often advise attendance
at A&E if they believe the patient would benefit from further
assessment and investigations.
Accident and Emergency Departments; these exist
at Treliske, West Cornwall and Derriford Hospitals.
Rehabilitation Units; the major centre is at
City Hospital, Truro, which provides treatment on both an in-patient
and day-care basis. The CSRU (Stroke and Rehabilitation Unit)
has a total of 16 beds, of which an average of three are occupied
by TBI patients. There is also a monthly head injury clinic for
patients referred by their GP or for follow-up and monitoring
of patients who have previously been under the care of the Consultant
in Rehabilitation Medicine.
In addition, Marie-Therese House provides in-patient
and day care services at Hayle, as well as respite care. The Rowans,
in Plymouth, provides services similar to those at Marie-Therese
House. St Teresa's, the Leonard Cheshire Home at Long Rock, provides
rehabilitation services although, at present, they have relatively
few TBI cases; there are plans to develop these services. The
Brain Injury Rehabilitation Trust (BIRT) are preparing to establish
a specialist rehabilitation long stay unit in Devon. (now open)
Voluntary sector; the only specialist voluntary
sector provider for this group of patients is Headway Cornwall.
The small centre, based in Lostwithiel, is open two day a week
and provides recreational activities, some learning activities,
social activity and day respite for carers. This is a much valued
service which is limited by its location, and by funds, in what
it can provide.
Community services; community hospitals provide
some rehabilitation services but there is a shortage of specialist
physiotherapists. People suffering from TBI require the services
of Neuro-physiotherapists, rather than (or as well as) the more
readily available musculo-skeletal physiotherapists. Neuro-psychology
services are provided by Cornwall Healthcare Trust; these services
are at present significantly stretched.
Nursing homes; a small number of patients are
discharged into nursing homes from acute care at City Hospital.
There is a widespread view that such placements are not always
appropriate, given the relative youth of most TBI victims, and
that were more short-term in-patient rehabilitation services available
at community hospitals, this would benefit patients significantly.
Social Services; Social Services provide personal
and domestic care in the home, support for carers and some day
care facilities. The contribution social workers are able to make
increases as patients move from acute to community care and their
aim will be to provide close supervision in community settings,
focussing on enhancing the quality and productivity of life. Discharge
planning into the community from City Hospital takes place with
the resident social worker, an essential member of the rehabilitation
team. It is important that this post continues to be funded. Social
Services also provide some occupational therapy support to patients
in the community."
Annex 4
Development and Evaluation of Educational
Resources for Survivors of Head Injury
Thirty three survivors of severe head injury,
and 20 people with other acquired brain damage enrolled in a special
programme of adult education designed to meet their individual
learning needs. They were followed up 18 to 24 months later with
postal questionnaires to measure functional, health and psycho-social
status. Comparisons were made with a control group of 66 severely
head injured people who did not enrol on the programme. Twenty
one survivors of severe head injury and 15 people with acquired
brain damage who had participated in the education programme returned
questionnaires. 62 people in the control group returned questionnaires.
At the time of starting educational programmes,
three head injured survivors were employed, seven in training
and education and 11 were unemployed or incapacitated. At follow-up,
five people were employed, ten in training and education and six
remained unemployed or incapacitated. The general health and psycho-social
status of the participants had improved at follow-up. In comparison
the control group had generally deteriorated in functional, psycho-social
and general health status. When comparisons were made between
unemployed or incapacitated participants in the educational programme
and controls, statistically significant differences were reported.
Participants (n=11) had significantly reduced pain, and improved
mental health and general health status, and were more assertive
than non-participants. Unemployed or incapacitated controls (n=23)
had deteriorated in their general health and psycho-social status.
There were no significant differences between participants and
controls at the beginning of the study.
Although the population for the study was limited
in size, there is preliminary evidence that educational programmes
for survivors of head injury improve "quality of life"
in areas of general health and psycho-social status. The study
also revealed that for survivors of severe head injury who do
not return to their former employed status, "quality of life"
continues to deteriorate for many years.
Annex 5
Cornwall Head Injury Research for the
NTBIS
Cornwall was one of 12 sites in England and
Wales chosen to be part of the National Traumatic Brain Injury
Survey. This was a study, sponsored and funded by the Department
of Health, and managed by the school of Business Studies of the
University of Warwick. Its first aim was to define centres, which
could carry out specific tasks in the management and organisation
of brain injury. There were two main tasks for the Cornwall sites.
1. To make an epidemiological study of all
the patients who were admitted through Casualty Departments with
a diagnosis of traumatic brain injury. Over 4,700 patients were
seen and screened.
2. To evaluate the advantages of having
a quick referral system between the Intensive Treatment Unit and
the rehabilitation ward; attempting to by-pass wherever possible
the need to go on to an intermediary ward after leaving the ITU
service.
The Departments directly involved with this
service were the ITU as well as the Cornwall Stroke and Rehabilitation
Unit. Liaison with Warwick University was primarily through John
Stillwell and Carol Hawley.
In order to facilitate the work five members
of staff were recruited. The first was Mrs B Holmes who was in
charge of the Neuropsychology Department and came on to the study
part-time, and two trainee clinical psychologists under her supervision.
The final member of staff recruited was Mrs L Berriman who was
the Liaison Nurse linking with the A&E Departments. She was
responsible for locating all the patients and recording them.
Her work was written up and presented to the Department of Health.
The Clinical Psychology Department additionally
undertook a study in which patients who self-selected received
further advice about the implications and the consequences of
minor brain injury and who were reviewed to see whether their
outcomes differed. This study data is available but has not been
analysed.
3 Evans C D, 1987, Rehabilitation of head injury in
a rural community. Clinical Rehabilitation 1 133-137. Back
4
Evans CD and Skidmore B, 1989, Rehabilitation in the Community
(Chapter). Models of Brain Injury Rehabilitation (Wood & Eames
eds). Chapman & Hall, London. Back
5
Evans C D, 1995, Developing Rehabilitation in the Community (Chapter),
Traumatic Brain Injury Rehabilitation. Services, Treatments and
Outcomes. (Chamberlain, Neumann and Tennant eds.) Chapman &
Hall, London. Back
6
Sansom M and Williams M, 1994 The Cornwall Head Injury Research
Project Nuffield Provincial Hospitals Trust, London. Back
7
Sansom M and Williams M, 1995, The Development and Evaluation
of Educational Resources for Survivors of Head Injury. Nuffield
Provincial Hospitals Trust, London. Back
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