APPENDIX 10
Memorandum by Headway Lincolnshire (H26)
Headway Lincolnshire are submitting this memorandum
to the Health Select Committee and hope it will add to the political
debate and ensure that Rehabilitation following Head Injury receives
the recognition and resources it deserves.
It will include:
1. A resume of the branch and the area it
serves.
2. Lincolnshire Health Authorities stance
on Acquired Brain Injury.
3. Factual information on Rehabilitation
which is taken from the working draft of the Joint Investment
Plan for Physically Disabled Adults 18-65 in Lincolnshire 2001-2004.
4. Recommendations for actions by the Government
and Health Authorities.
5. A brief history of a brain injury survivor.
1. Headway Lincolnshire
1(a) Headway Lincolnshire is a small branch
of Headway—the brain injury association—and provides
information and support for people with brain injuries, their
relatives and carers. It endeavours to increase public awareness
and understanding of brain injury. The branch comprises mainly
of people who have had a brain injury, family members and sometimes
carers who, because of the lack of care, treatment and information
they received, want to help others have a better chance of recovery
after brain injury. There is a helpline for advice and counselling
and monthly meetings where anyone can come and discuss their problems
and seek help.
1(b) The branch caters for the whole of
the area within the Lincolnshire County Council boundaries. It
is a very large rural area with a high rate of deaths and injuries
from accidents on the poor road systems. Also, as in other parts
of the country, the number of people requiring treatment for head
injuries from assaults is on the increase. There are no neurological
specialists in the county, no head injury co-ordinator, no specialist
head injury team of O.T's, physiotherapists, speech therapists,
psychologists, social workers etc, no specific rehabilitation
facilities for head injuries (in-patient or out-patient) and very
few day centres. More lives are being saved in ICU's out of the
county with the advancement of medical skills and better trained
paramedics and this creates greater need for in-patient constant
care and intensive rehabilitation when they return to Lincolnshire.
2. Lincolnshire Health Authorities Stance
on Acquired Brain Injury
2(a) Lincolnshire Health Authority state
that they have not prepared a strategy for the provisional improvement
of acquired brain injury services. They do plan to do so as part
of their joint development work with social services and are in
the preliminary stages of this work. They have a joint Development
Manager funded by both the Health Authority and the Social Services
department who is leading this work.
2(b) There are no current plans to commit
any new or additional resources to acquired brain injury rehabilitation
services in 2000-2001 or 2001-2002. The situation is under constant
review through the annual priority setting cycle; as with all
other Health Authorities they re-assess their investment decisions
based on various competing national and local priorities.
It is very frightening that Brain Injury does
not appear to rate very highly on Lincolnshire Health Authorities
agenda especially as it is very apparent in the county. When approached
they say that it is not a priority on the Government or NHS guidelines
and they have to keep in line with them.
3. Factual Information on Rehabilitation
which is taken from the working draft on the Joint Investment
Plan for Physically Disabled Adults 18-65 in Lincolnshire 2001-2004.
(3a) Day facilities for rehabilitation
Day services are not currently available or
accessible equitably across the county. There are insufficient
resources in the county to deal with the Rehabilitation Agenda.
There is a shortage of therapists within the Community Trusts.
(3b) Rehabilitation Medicine Services
Ashby Rehabilitation Centre offers specialised
inpatient rehabilitation based at the Old St George's Hospital
site and is the only facility of this kind in Lincolnshire. BUT
THE INPATIENT FACILITY HAS NO DEDICATED BEDS FOR HEAD INJURY.
It has a low ration of physio and O.T. to amount of rehabilitation
beds as per Royal College Guidelines.
Unfortunately this unit has to be relocated.
A business plan for the reprovision of Ashby Rehabilitation Centre,
with 16 beds at Lincoln County Hospital has been forwarded to
NHS Executive Trent. No decision has yet been made on this. Ashby
Centre will no longer be able to offer intermittent rehabilitation/respite
care.
(3C) Head Injury Rehabilitation Service
This service pertains mainly to 16-55 year olds
and is part of the Rehabilitation Medicine Service. It includes
traumatic and non-traumatic brain injury.
The current inpatient facility is too distant
from acute services and has no dedicated beds for head injury.
There is an outpatient Head Injury Clinic once a month in Lincoln
and four times a year in Sleaford.
The community team consists of one session of
CNS Physical Disability per week, Community Liaison Occupational
Therapist and Neuro-physiotherapist. This is part of their generic
role. Neuropsychology includes specialist in neuropsychology.
Art Therapist ( four sessions per week for all services). Psychological
Therapist in Head Injury for family support (two session per week).
There is a lack of structured brain injury care pathway for the
whole county. There is a lack of facilities for brain injured
patients with severe behavioural problems within the county. A
deficiency in service provision for children with brain injury.
There are limited day care facilities with links to educational
and vocational training.
There is no head injury co-ordinator but there
is currently a research project to evaluate the impact of a H.
I. Co-ordinator supporting people following moderate or severe
head injury.
N.B.
Lincolnshire Health commissioned a Health Gain
Programme for Head Injury in 1995 and it was identified that a
Head Injury Co-ordinator was the first priority and should be
employed in year one of the programme. The role of the Co-ordinator
would be to see, assess and help manage patients on acute wards,
arrange follow up as needed, develop and co-ordinate plans with
a multidisciplinary team in relation to all aspects of rehabilitation
and longer term care. The post was never filled because there
was no funding available.
(3d) Residential/Nursing Care
There is an acknowledged lack of Specialist
residential/nursing care for people under 65 across the county.
People with Head Injuries can be inappropriately placed.
(3e) Deaths records analysed by Lincolnshire
Health Information Department
Another startling fact revealed in the Joint
Investment Plan was that there were 122 deaths from brain and
head injury in the period January 1995—December 1999. How
many of these may have been saved if there had been proper specialist
care?
4. Recommendations for Action by the Government
and Health Authorities
4(a) The first priority is for the Government
to recognise Head Injury as a separate disability. At the moment
it doesn't fit into any of the categories of disabilities and
the local Health Authorities say it is not a Government or NHS
priority therefore is not included in their budgets.
4(b) Once prioritised the Government could
then make recommendations to Health Authorities to include brain
injury services in their own right and make funding available.
There would have to be a significant financial input because rehabilitation
can be very expensive—especially inpatient rehabilitation.
Rehabilitation should start at day one after a head injury and
is often needed for life to maintain the stability reached by
a brain injured survivor. Survivors of severe brain injury have
a normal life expectancy.
4(c) Were funding available then the Health
Authorities would be in a position to engage a Head Injury Co-ordinator
who would organise and lead a full multi-disciplinary team of
therapists to deliver services to Head Injured people for all
aspects of rehabilitation and long term care. The Co-ordinator
should also have access for specialist neurological input and
be able to work with families and social workers. There will also
be a need to support and train nursing staff who will require
specialist skills when working with Head Injuries.
4(d) There is a definite need for inpatient
rehabilitation for some of the most seriously injured who require
constant care and rehabilitation after their lives were saved
in intensive care. A recommendation would be for a 20-30 bedded
inpatient Rehabilitation Unit to be built, as centrally as possible,
in each Health Region, eg, one in the Newark area in the Trent
Region.
4(e) To be cost effective in some cases
Head Injury Rehabilitation could be linked with Stroke Rehabilitation.
Often the outcome from a head injury and stroke are very similar.
In Lincolnshire, as stated in the J.I.P. working draft, under
65 stroke services are very lacking. The review of stroke services
in all settings are against the Royal College of Physicians Guidelines.
There is a lack of specialist teams that work across acute/community/social
services boundaries. Also there is a lack of outpatient/community
rehabilitation facility for stroke sufferers with high dependency
needs.
5. A Brief History of a Brain Injury Survivor
in Lincolnshire to Highlight the lack of Services.
A young man was severely brain damaged when
his car was stopped dead in its tracks after a large fish van
had a blow out, lost control, slewed across the road, overturned,
rolled over his car and trapped him inside. He was released and
taken by ambulance to Hull R.I. in a deep coma. His life was saved
there and he was returned to Lincoln County Hospital after six
weeks for constant care and rehabilitation. At this stage he wasn't
fully conscious, was incontinent, couldn't sit or stand, was fed
by a tube, couldn't speak, was paralysed down the right side,
his right eye was closed and he had a tracheostomy tube. He was
literally dumped in a surgical ward and the staff didn't have
the know-how or time to look after him properly. Between them
the family spent at least 12 hours a day looking after him. They
taught him to eat, cleaned his trachestomy tubes, saw to his personal
hygiene, stopped him pulling out tubes because no restraints were
allowed, sat with him for hours keeping him propped up and holding
his head up because there were no appropriate chairs. It was recommended
from Hull R.I. that he be properly examined and X-Rayed in Lincoln
to see if there were any other injuries but this didn't happen.
After complaints from the family about the lack of care and attention
and the intervention of his MP, the young man was moved to Ashby
Rehabilitation Unit. But this proved little better because the
majority of the staff had little knowledge of head injury and
convenience nursing was the order of the day. Although requested
by the family examinations and x-rays were still denied. The family
still spent many hours looking after him and tried to encourage
him to do things. He started to show signs of awareness and make
progress but this was soon stemmed after he was given Haloperidol.
He had many undetected injuries and couldn't communicate properly.
When the staff lifted his arms to try and help him stand and walk
he was in great pain. The only ways he could communicate to stop
the staff hurting him were by biting or pulling hair. He was immediately
branded aggressive and punished by drugs. He went all floppy,
sleepy, incontinent and very weak. After finally noticing the
damage the drugs were doing and receiving complaints from the
parents they were stopped. Progress then started to be made again
but for no reason whatsoever Carbamazepine were prescribed. These
had a devastating effect and after many complaints by the parents
were changed for Clopixil. The consultant stated that by trial
and error they would find a drug that suited him. The young man
was very confused, he had hallucinations and thought everyone
was going to be killed. After complaining again the parents were
given an ultimatum—stay in the hospital and be drugged or
take him home. His parents opted to take him home but at this
stage he couldn't walk, could hardly talk, didn't think the world
was real and had completely lost three years of his memory. The
promised follow up of therapies didn't materialise until complaints
were made but then they were rationed. The determined parents
refused to give up and eventually got more therapy sessions even
though it meant a round trip of 45 miles everytime. They also
managed to prove to the Social Services that they qualified for
help after initially being refused. With much added input from
the parents, friends and carers who covered the night shifts the
young man eventually believed the world was real—he thought
he had died and come back to a second life. He started to walk
and talk, he had to learn to read and write again, in fact he
virtually had to re-learn everything again. He still has many
on going therapies and will need them for the rest of his life
if he has to maintain the state he has reached.
February 2001
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