APPENDIX 11
Memorandum by Headway Bristol (H27)
SUMMARY OF EVIDENCE
1. Lack of funding for the Private Finance
Initiative Brain Injury Rehabilitation Unit
2. Lack of consultation by Avon Health or
North Bristol NHS Trust with local Headway Group who had the knowledge
and experience to help when setting up new units
3. Lack of experienced staff at rehabilitation
units
4. No seamless service
5. No Clinical Psychologist available
6. Non acceptance of strategic plan for
brain injury by Avon Health
7. Difficulty of funding from Social Services
RECOMMENDATIONS
1. More funding for brain injury rehabilitation
2. A further brain injury rehabilitation
in-patient unit be set up in addition to the PFI
3. Appointment of a Rehabilitation Consultant
to present the seamless service
4. Urgent appointment of a Clinical Psychologist
5. Urgent action by Avon Health on the strategic
plan already presented
6. A greater liaison between Health and
Social Services
7. Consultation with Headway who have a
great deal of knowledge and experience
EVIDENCE
1. The first Private Finance Initiative,
Frenchay Brain Injury Unit, was set up at Frenchay Hospital. Since
opening it has been almost empty most of the time because Avon
Health has, until recently, only funded four out of the 27 beds.
However, because of pressure, this has now been increased to eight.
Lack of funding is the biggest problem with this unit.
2. There are now at least six patients on
the waiting list and it has to be said that there is little appropriate
rehabilitation outside this unit. Why are more beds not purchased
by Avon Health Authority—is it lack of resources or commitment
on their part? Maybe there should be a separate rehabilitation
inpatient service post acute care set up in Avon for brain injured
survivors.
3. The Medical Director, appointed when
the unit opened, resigned a short time after and staff have been
continuously leaving. Why are they leaving, we are never told
but those leaving tell us it is bad management? We feel it is
a mixture of the way the unit was set up, lack of number of patients,
lack of training for staff to understand the brain injured, the
original criteria of admission and the poor management.
4. The unit was set up for behaviour difficulties
because this service had cost Avon Health a great deal of money
using specialised units in Northampton. Had Headway been consulted
it could have advised that the number of patients with behavioural
difficulties were getting less and less. In fact over the past
four years we know of only four head injured who have had severe
behavioural difficulties.
5. Whilst the criteria for admission to
the unit has now changed it is felt so much has been lost, such
as time, patients not having good rehabilitation, families coping
with the fact there is no room for their loved ones because of
funding plus, the loss of good therapists. Therefore, it is felt
that the unit was set up and has been used inappropriately.
6. There was a lack of consultation with
Bristol Headway at the setting up stage and since, even though
they had the knowledge and experience to help.
7. At Headway House, where we undertake
social rehabilitation and stimulation we have had very little
bad behaviour because the patients are treated as normal, are
loved and wanted. Like everyone else, if this happens they are
usually not unreasonable. Added to this professional rehabilitation
is necessary. It can and does work and Headway can provide many
examples of good recovery with this menu. The NHS should be able
to provide the rehabilitation.
8. The Leonard Cheshire Home, in the grounds
of a small local hospital, has NHS patients but has social problems;
the patients are lonely because having lived in active wards they
are now in their own rooms, with little company. Headway House
takes three patients from this unit for the Sensory Day so we
have feedback from those able to communicate and from relatives.
9. This unit was again set up without consultation
with Headway who had the expertise and knowledge of how head injured
patients would react to circumstances and surroundings. The patients
are many years out of their accidents and have bad contractures
and speech problems. Most have had no physiotherapy and certainly
no speech therapy for many years. The families, as well as the
patients are becoming despondent. Maybe it is too late for these
patients but Headway is providing as much as they possibly can.
Please bear in mind the feelings of these families when their
loved ones have been passed over and are still being passed over
for any rehabilitation at all. The Cheshire Home provides good
care and tries very hard but these young people suffer from lack
of understanding and lack of trained staff have added to difficulties.
10. We talk of a seamless service when in
the Avon Health area it is fragmented with no one who seems able
to bring it all together. We have good services but they are not
working with each other. It is understood that they are considering
employing a person for a Pathway of Care for Brain Injured patients,
this should improve the situation.
11. Previously I have talked about severe
to moderate head injury but I have omitted, as do most Health
Authorities, mild head injury. The small bump on the head, which
can result in a family man finding it difficult to cope with his
job, unable to cope with his children and any noise they make
and a wife trying to live with what is now a different husband.
I would refer to two research articles Thornhill et al, (2000)
Disability in young people and adults one year after head injury:
prospective cohort study, BMJ: 320: 1631-5, Shoumitro (1999) ICD—ten
codes detect only a proportion of all head injury admissions,
Brain Injury: vol 13, no 5, 369-373). My own personal experience
confirms the findings.
12. There is the Head Injury Therapy Unit,
a day unit for rehabilitation, where again it is difficult to
be accepted. The number of patients dealt with at this unit is
very small and it takes from such a wide area. It is run by a
trained Clinical Psychologist who spends little time at that job
because she manages the unit and is responsible for 12 part time
staff, which is not providing the appropriate care to its patients.
13. At Frenchay Hospital, apart from the
Clinical Psychologists at the Brain Injury Unit and the Head Injury
Therapy Unit, we have no general Clinical Psychologist. It is
left to Headway to assist families who beg for someone to counsel
their loved ones who find life difficult. 15 years ago we had
a Clinical Psychologist who, when he left, was never replaced.
A Clinical Psychologist is a necessity with the brain injured
and their cognitive problems.
14. For all that has been provided and put
in place the majority of brain injured and their families are
worse off than they were 15 years ago.
15. Provision made with good intentions
by the Department of Health and the North Bristol NHS Trust over
the past ten years are:
Good Neurosurgery
Good Intensive Care Unit
Head Injury Therapy Unit—Day Patient
Brain Injury Rehabilitation Unit—Private
Finance Initiative
Barbara Russell Children's Unit—in patient
Cheshire Home—Cossham Gardens—Home
for life
It sounds a good service and many Headway Groups
are envious of the services we have but the fragmentation makes
a seamless service almost an impossibility.
16. The Neurosciece Department at Frenchay
Hospital prepared and researched a strategic plan for brain injury
and presented it to Avon Health almost a year ago, it has not
been implemented. No one seems prepared to tell the families why.
Those at Frenchay dealing with brain injuries are becoming despondent
as well as the families.
17. Headway Houses are providing social
rehabilitation and stimulation for the brain injured in a structured
and happy environment. However, Health and Social Services are
still not working together, as they should. It is becoming a battle
to get a small contribution from Social Services in a lot of cases
and when several unitary authorities are involved the position
is even worse. We have no difficulty with Bristol City and North
Somerset but a great deal of difficulty with South Gloucestershire.
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