THIRD REPORT
The Health Committee has agreed to the following
Report:—
HEAD INJURY: REHABILITATION
Introduction
1. Head injury is the foremost cause of death and
disability in young people. In an age of increased motorisation
and violence, head injury is a healthcare problem which is not
going to go away. There is a growing population of head-injured
people in this country, as improved medical techniques have led
to many head-injured people now surviving their accident and living
into old age, with a normal life expectancy. However, a head-injured
person is likely to require long term rehabilitation to live his
or her life in society.
2. We decided to undertake a short inquiry into head
injury rehabilitation when we received some alarming stories about
this area of service provision from individuals and from Headway
- the Brain Injury Association. Our call for evidence attracted
such a large quantity of material for such a short inquiry that
it became obvious that this was an area of some considerable concern
to a great many people. As such, it would benefit from a wider
inquiry, but time was not available to extend the inquiry. We
have managed to look at some key issues, but we believe that this
is an area which would benefit from a wider inquiry.
3. Our terms of reference were as follows:
"The Committee will
examine the availability, organisation and resourcing of rehabilitation
services for head-injured adults following medical stabilisation.
The Committee will consider rehabilitation services in the hospital
and in the community, and wishes to establish the extent to which
agencies in the statutory and non-statutory sectors collaborate
to provide seamless care."
By a happy coincidence, the single oral evidence
session of our inquiry on 15 March took place in National Brain
Injury Week, "which hopes to draw attention to the problems
that may face the million patients each year who attend hospitals
with head injuries, and the families of those patients".[8]
4. We heard oral evidence from Mr Kevin Curley, the
Chief Executive of Headway-The Brain Injury Association, Ms Jenny
Garber, Mrs Angela Hicks, Mr Peter Wheeler, Dr Lynne Turner-Stokes,
Director of the Regional Rehabilitation Unit at Northwick Park
Hospital, Mr John Pope, Chief Executive of The North West London
Hospitals NHS Trust, Dr Keith Andrews, Director of Medical and
Research Services at the Royal Hospital for Neuro-Disability,
Putney, Dr Brian Moffit, Medical Director of St Andrews Hospital,
Northampton, Yvette Cooper, MP, Parliamentary Under-Secretary
of State, Dr Sheila Adam, Deputy Chief Medical Officer and Ms
Judy Sanderson of the Department of Health (DoH).
5. We also received around 100 written memoranda,
which were extremely helpful. We are grateful to all who have
submitted written and oral evidence.
6. We would also like to thank our specialist advisers,
Lindsay McLellan, Professor of Rehabilitation at the University
of Southampton, Dr Neil Brooks, Director, Rehab without Walls
and Mr Chris Vellenoweth, an independent adviser on health policy
and former special projects manager, NHS Confederation, for their
invaluable contribution to our inquiry.
Definitions
7. The following definitions are widely used in this
area.
| Head Injury: often used synonymously with Traumatic Brain Injury (TBI). Strictly, however, not everyone who suffers a head injury will sustain a brain injury.
Traumatic Brain Injury (TBI): injury to the brain caused by trauma, ie. a blow to the head.
Acquired Brain Injury (ABI): "An injury to the brain that has occurred since birth... The term acquired brain injury includes traumatic brain injuries... and non-traumatic brain injuries... the term does not include brain injuries that are congenital or produced by birth trauma".[9]
Rehabilitation: "the use of all means to minimise the impact of disabling conditions and to assist disabled people to achieve their desired level of autonomy and participation in society".[10] Rehabilitation may be needed at any point in a patient's care pathway, may be long term, and spans a wide variety of interventions aimed at relieving both physical and cognitive difficulties.
The Glasgow Coma Scale: the assessment tool widely used to classify the initial severity of traumatic brain injuries. This, together with other criteria, allows subjects to be categorised as being in a Vegetative State, or as having had a Severe Injury, Moderate Injury, or Mild Injury, based on the level of responsiveness of the patient after initial resuscitation.
There is also a Glasgow Outcome Scale that categorises subjects who have recovered into very broad groups mainly according to physical functions but there are limits to its usefulness; patients classified as having made a 'Good Recovery' may still have considerable cognitive and behavioural deficits and be unable to work.[11]
|
Incidence and prevalence of head injury
8. Head Injury is the commonest cause of death and
disability in young people and children, and occurs mainly as
a result of road traffic accidents, falls and assaults. The head-injured
population is predominantly young and male, although elderly people
also suffer above average incidence.
9. Establishing the numbers of head injuries every
year, and the number of people disabled as a result, not to mention
the overall numbers of head-injured people living in the population,
is not easy. The data systems that are used to identify figures
are inadequate in a number of ways. Numbers are based on hospital
admissions and diagnoses in hospital. This misses the many mildly
head-injured people who never attend Accident and Emergency (A&E)
in the first place, but who may still be adversely affected long
term. Initial diagnosis is also not a reliable predictor of long
term outcome, so analysis by diagnosis does not necessarily represent
an adequate profile of actual incidence of long term problems.
10. Even the data collected by hospitals are not
necessarily accurate in terms of admissions. The data on hospital
admissions are based on the classification of the patient at the
hospital, according to the International Classification of Diseases
(ICD) 10 Codes. Some have cast doubt on the reliability of this
method of classification to identify victims of head injury, including
Shoumitro Deb, clinical senior lecturer and Honorary Consultant
in Neuropsychiatry at the University of Wales College of Medicine,
who concluded from a research project he undertook, that:
"By using ICD-10 codes,
less than 50% of all head injury admissions could be detected...
It is worth mentioning that the ICD codes are often completed
by the less experienced trainee doctors working in the unit and
sometimes by other non-medical staff".[12]
11. Confusion can also be caused by attempting to
separate incidence of Traumatic Brain Injury from Acquired Brain
Injury. Indeed, a recent Parliamentary written answer to a question
on Acquired Brain Injury statistics found the DoH itself quoting
Traumatic Brain Injury statistics.[13]
12. We put our concerns about the robustness of the
data to Yvette Cooper MP, Parliamentary Under-Secretary for Health.
She told us "We would accept that there are difficulties
with the figures and there are difficulties with the way in which
they are collected or the diagnosis is made at the time".[14]
We recommend that the DoH finds ways of improving the methods
of data collection on incidence, prevalence and severity of head
injury and subsequent disability, as a matter of urgency. In particular,
we recommend that all health authorities are required to collect
data on head injury and that an estimate of the incidence and
prevalence of head injury informs planning.
13. With all these qualifications, some estimates
of numbers can be made. The Department of Health's memorandum
states that more than 1 million people attend A&E with a head
injury every year and that of these 100,000 need inpatient treatment.
It makes no estimate of overall prevalence - the total number
of people living with the effects of head injury at any one time.
The Department of Health's National Traumatic Brain Injury
Study (see paragraph 35) estimated that over 100,000 people
a year are discharged from hospital with a diagnosis of head injury,
at least 2000 adults a year suffer serious impairments which remain
with them forever and prevalence was between 50-75,000 in 1990.
14. The British Society of Rehabilitation Medicine
(formerly the Medical Disability Society) says that incidence
has changed little since their report of 1988 - according to this
report incidence is 300 per 100,000. The report divides this up
into annual rates of 8 cases of severe head injury per 100,000,
approximately 18 moderate injuries per 100,000 and between 250-300
mild head injuries per 100,000. However, deprived urban areas
have higher rates and incidence is up to four times higher amongst
children and elderly. Assuming a UK population of sixty million,
this would make for national incidence figures of 180,000 per
year. Figures for prevalence of disabled survivors of head injury
are estimated to be100-150 per 100,000 or 60,000 in the population
as a whole.[15]
15. The most recent relevant study, by Thornhill
et al, looking at the incidence in Glasgow, suggests a
much higher incidence than the DoH estimate (about 4.5 times higher)
and also records a much higher level of unrecognised problems
on discharge than had hitherto been supposed.[16]
16. Whatever the exact numbers, it is clear that
head injuries are common, and that prevalence is high and rising.
Most head-injured people are young, and as life expectancy is
usually unaffected, there is a growing population of people living
with the long term consequences of head injury. In addition to
this there is the suspicion that the identified group misses out
a significant number of mildly head-injured people, the long term
problems of whom are only now beginning to be identified.
17. The reasons for the growing population of head-injured
people are fairly simple. Apart from increased use of the motor
car and the numbers of assaults, medical advances since the 1970s
have meant that head-injured people who used to die as a result
of their injury are now surviving in large numbers. The group
of needy people has therefore not been great until relatively
recently, and it may be for this historical reason that the statutory
services are so ill-designed to cope with their needs.
Effects of head injury
18. The Glasgow Coma Scale is the tool used most
widely to assess the severity of brain injury, by the level of
responsiveness of the patient after initial resuscitation (see
Definitions). However, this classificatory system does not accurately
predict the long term consequences for the head-injured person.
An individual having suffered a mild head injury may suffer symptoms
for the rest of his or her life; another who has been severely
injured may make a good recovery. This causes problems planning
services for head-injured people.
19. At the extreme end of the scale, the consequences
of head injury are death, persistent vegetative state or severe
physical and mental disablement. For the large majority of victims,
however, on a sliding scale, effects include cognitive, emotional
and behavioural difficulties including impairments of memory,
understanding, judgement, and control over emotions and behaviour.
While some may be physically disabled, the large majority of victims
have only these "hidden" disabilities, which are less
easy to observe, and as a result, lead to misunderstanding. One
head-injured person described this in evidence in the following
terms: "I don't know who I am - there are two persons - one
before the accident and one after the accident - and they don't
seem to be the same person and they don't integrate with each
other".[17]
A head-injured person may find it very difficult to relate to
people, to carry out tasks which make him or her employable, and
to remember life before the accident, and may well seem a different
person to those around him or her. The patient may even lack the
insight to understand the seriousness of what has happened to
him or her; Mr Peter Wheeler, who suffered a head injury in 1994,
told us that "the first year I was not well enough to do
anything. My memory loss was terrible and I was not well enough
to appreciate the seriousness of the accident".[18]
20. The results of head injury are not, however,
limited in impact to the head-injured persons themselves. The
family and friends of the individual, especially where they take
on the main caring roles (as is often the case in the absence
of satisfactory statutory help) are placed under immense emotional
- and often financial - strain as they struggle to look after
and relate to a person who may be very different from the one
they used to know. Moreover the stress on families after severe
injuries tends to increase progressively for at least the first
seven years after the injury. Thus the impact of a head-injured
parent or sibling upon children in the family can be immense:
Ms Jenny Garber, a brain injury case manager with a background
in social work, told us "What you are looking at is later
on in life disrupted schooling, disruptive behaviour and quite
serious signs of stress". She added that she did not know
of anywhere in the country that would focus on these children's
needs.[19]
21. Mrs Angela Hicks, who came to give evidence to
us about her experiences since her husband's head injury in October
1999, emphasised to us the importance of involving the family
in the rehabilitation of the head-injured person, for the patient's
and their own sake:
"you have to recognise
that ultimately the family is hopefully going to take care of
the person and work with the person that has the head injury.
If you exclude them and do not involve them then you are likely
to set up long term problems... the family is part of the solution,
not part of the problem".[20]
22. Where family support is not available, or gives
way under the emotional burden, statutory services are often inadequate,
leading to family break-ups, divorces and the head-injured person
becoming homeless or even entering the criminal justice system.
Such is the lack of understanding of head injury, and the "hidden"
nature of its symptoms, that victims often do not receive the
recognition and help they need. We recommend that the statutory
services re-evaluate their procedures to ensure greater involvement
of the families of head-injured people in the person's recovery
and rehabilitation, and the provision of support systems for the
families independently of the treatment of the head-injured person.[21]
Treatment and care pathways
23. It is important to recognise that just as there
are different levels of severity of brain injury, so these different
levels will require correspondingly different levels of treatment.
While the most severely injured will require a high volume of
rehabilitation, they will show less gain for it; the greatly larger
number of victims of moderate and minor head injury also need
treatment, albeit at a lower level, and are likely to respond
better. Providing head injury rehabilitation must not be a case
of disenfranchising one group to help another: different levels
of treatment must be provided for different levels of need. Moreover,
a proportion of those with mild and moderate injury, if missed,
are likely to experience long term problems which will be much
more difficult and costly to resolve later down the line.
24. Those who have suffered a severe accident usually
first access the statutory services in the A&E department
of the nearest hospital. Many, especially if their injury has
been caused by a road traffic accident, have other, physical injuries
which need to be dealt with on admission, and as a result may
end up on general or orthopaedic wards. The recent report from
the Royal College of Surgeons on the management of head injury
describes this course of action as very undesirable, since staff
on these wards are not trained in the management of head-injured
people, and the other (more apparently immediate) care needs of
the person may lead to staff missing or failing to give the right
priority to the treatment of the head injury.[22]
The difficulty of accurately ascertaining the level of brain injury
that has occurred may also lead to mistakes. Angela Hicks described
to us the consequences of inappropriate placement and treatment
on her husband: "He then spent four months on a general hospital
ward where his emotional vulnerability was acute because the nursing
staff did not have the time, expertise or knowledge to know how
to deal with a severely brain-injured patient".[23]
She described this ward in the following terms: "It was loosely
termed the rehabilitation ward. It was predominantly elderly people.
I could not really match the word 'rehabilitation' with the death
rate".[24]
It is imperative that people with a suspected brain injury
are assessed by specialist staff and nursed in a location appropriate
to their needs.
25. The early stages of recovery from head injury
are the optimal time for rehabilitation interventions which may
not be possible in a general ward, and which may even be compromised
by staff who are not trained in dealing with brain-injured people.
It is much better if head-injured people are transferred to rehabilitation
beds as soon as possible, as recommended both by the Royal College
of Surgeons' report and by the report of the British Society of
Rehabilitation Medicine. The resources needed for this stage of
treatment have been clearly set out in the report of the Royal
College of Physicians, Medical Rehabilitation for People with
Physical and Complex Disabilities, of May 2000. We recommend
that guidance should be issued to all acute trusts to ensure that
head-injured people are treated, as soon as possible after medical
stabilisation, in appropriately resourced rehabilitation beds
where specialist rehabilitation staff can care for them and begin
their rehabilitation interventions. This may require extra resources,
but we believe this course of action will yield long term savings,
as well as benefits to patients.
26. After medical stabilisation and the end of surgical
or medical interventions, depending on the perceived severity
of the head injury, the head-injured person is transferred to
a rehabilitation unit, or simply discharged into the community.
There may be several problems at this stage. People are often
discharged when in fact they need further inpatient treatment
in a unit. Long delays may occur before a move to an intermediate
unit can be effected, with the result that patients receive inappropriate
care at a crucial period for rehabilitation interventions, and
also that acute beds are
"blocked" for other patients.[25]
Many of those who are simply discharged are lost to the statutory
services, despite the fact that they may well develop long term
needs, as they are not always followed up and there is often no
system whatsoever to offer ongoing rehabilitation for them in
the community.[26]
We recommend that all health authorities and trusts plan care
pathways for head-injured people so that they can move through
the system as quickly as is appropriate, thus releasing acute
beds for other patients and increasing their own potential to
improve. It may also be necessary to increase capacity of specialised
staff. To do these things health authorities and trusts must improve
their data on the incidence and prevalence of head injury in their
catchment area, by better collation and maintenance of data (see
paragraph 12).
27. Even something as simple as the provision of
information to head-injured people and their families about how
they can expect life to change following a head injury, is rarely
made available by statutory services to those who are discharged
straight to their homes. The DoH's evidence remarks that:
"systems should be in
place to identify such cases. Good practice solutions include
issuing leaflets giving advice... and creating a register of head-injured
patients".[27]
28. In practice, it is usually left to charitable
bodies to pick up whatever individuals they can before people
are forced into crisis situations by their problems, much later
along the line. Headway National in fact run an inquiry phone
line which receives more and more inquiries every year, almost
all of which are from people contacting Headway for the first
time, and nearly a quarter of which are from professionals, mainly
from the statutory sector, trying to find out about available
services.[28]
Angela Hicks echoed many of our written memoranda when she told
us:
"I found it was very
rare that information was ever offered to me within the health
service, social services setting. I had to seek it; I had to find
it; I had to make appointments; I had to badger people".[29]
She added:
"I felt extremely excluded;
I felt that I had very poor information. There was a lack of communication
between professionals and to me. I felt extremely isolated. That
is a theme which has run right through from the beginning to where
we are now and continues to date. The most supportive area I have
had has been Headway which has been the only consistent source
of information and support and advice throughout our experience".[30]
We recommend that the Government requires the
statutory services to improve their supply of information on head
injury to head-injured people and their families; such information
should be given to these people in written and verbal form during
their stay in hospital, should be available to GPs and should
include the literature produced by Headway-the Brain Injury Association.
29. As patients recover they face progressively more
difficult life situations and choices each of which may need a
different pattern and emphasis of treatment. Although it has been
claimed that there is an optimal period of two years for effecting
improvement in the head-injured person's condition, the many patients
with moderate or severe injuries who have not fully recovered
by this stage will require continuous monitoring and intermittent
specialist input for considerably longer in order to make a good
transition to independent living in the community. With this in
mind, the effect on a head-injured person of being discharged
into the community without any long term care plan or any system
in place to deliver this, can be devastating. The adverse consequences
on the patient's morale and self-image, and upon their family
and social support networks, can permanently destroy the capacity
of the individual to realise their rehabilitation potential. We
recommend that the acute sector takes responsibility for planning
the onward care journey of a head-injured person on discharge
from the hospital, and issues care plans to patients and families
of patients which make clear where they should go next.
30. The head-injured person's problems may be extremely
diverse, and no two cases will have the same needs. Moreover,
it is difficult to predict the long term needs of a head-injured
person from the acute stage of treatment; assessments need to
be made and treatment adjusted on an ongoing basis. While most
rehabilitation provided by the statutory services is in terms
of a finite care package, many head-injured people need life long
support and more than one rehabilitation intervention in the course
of their lives.[31]
For these reasons, the rehabilitation interventions available
to a head-injured person after discharge from the hospital need
to be in the form of a multi-disciplinary outreach team. For those
people with a head injury who did not attend hospital in the first
place, these services need to be accessible too, and known to
GPs. The lack of community support and care networks to provide
ongoing rehabilitative care is the problem area that has emerged
most strongly in the written evidence (see paragraph 49).
31. People with more serious problems may be referred
to a private tertiary facility. Many inappropriate placements
are made, for example young people are put into old peoples' nursing
homes, and adults put in nursing homes which do not have the expertise
to manage brain-injured people. According to the charitable organisation
Leonard Cheshire, residential placements given to head-injured
people are "over 70% inappropriate".[32]
The Association of Serious Injury Solicitors makes the point that
care homes are of variable quality, citing one care manager's
report that a girl in Persistent Vegetative State became pregnant
while in a Young Disabled Unit.[33]
Services for those with severe behavioural problems are even fewer
and further between - as Headway East London puts it, "it
is certainly my experience that health authorities are very reluctant
to purchase these services".[34]
We recommend that health authorities and trusts plan care pathways
for seriously head-injured people and locate tertiary facilities
which they can be sent to if need be, without delay. These facilities
must be well-regulated to ensure standards of care are high and
appropriate for head-injured people. Patients should only be referred
on to such facilities after skilled assessment by specialised
rehabilitation staff with expertise in brain injury, in the hospital.
32. Problems also occur frequently at the interface
of treatment for head-injured people and mental health facilities.
Some head-injured people may be treated, inappropriately, as psychiatric
patients, and medicated in a way which hinders the progress of
their rehabilitation. Conversely, head-injured people who have
psychiatric problems in addition to their head injury find it
difficult to access mental health services. Mental health services,
including medication, should be offered to head-injured people
when, and only when, appropriate, and such intervention should
be directed by a neuropsychiatrist.
The importance of rehabilitation
33. Rehabilitation is concerned with helping an injured
person to recover, as far as possible, the functions that they
used to have before the injury. Where this is not possible, it
aims to help the individual to achieve the highest possible level
of independence. Rehabilitation may be needed long term simply
to help a person to maintain a level of improvement. Mr Wheeler,
whose accident was nearly seven years ago, told us, "though
I have made a good recovery and I look a hundred per cent to everybody
around this table, it is very important to have ongoing treatment
and care... I feel fine but there are still a lot of psychological
problems there".[35]
He went on, "the ongoing help provided by Headway is essential.
I can go back to them because although my confidence is probably
about 80 per cent, it is still very brittle and I need that support".[36]
Rehabilitation goals will therefore be different for every individual
depending on their particular problems and capacity to improve.
The need of the majority of head-injured people is not for physical
rehabilitation but cognitive rehabilitation.
34. Despite the detailed guidance provided by the
Royal College of Physicians in its report of May 2000, it appears
that the importance of rehabilitation has not really yet been
recognised by many members of the medical profession in this country.
It is perhaps unsurprising, therefore, that it also appears to
be hardly recognised by the Government and not given appropriate
prominence in the priorities of health authorities. Evidence of
the efficacy of rehabilitation is difficult to evaluate, given
the relatively small numbers of people involved, the diversity
of rehabilitation interventions and the difficulty of establishing
measurable and consistent outcomes. However, Dr Turner-Stokes,
one of the witnesses before us, has published a critical evaluation
of the evidence of the effectiveness of rehabilitation, in which
she was able to conclude: "We can effectively dismiss the
statement: 'There is no good evidence that rehabilitation works'".[37]
She told us in oral evidence:
" There is good evidence
that post-acute rehab can both reduce length of stay [in hospital]
and increase functional independence. There is evidence for cost
effectiveness in randomised control trials and evidence that more
intensive therapy can both reduce length of stay and produce net
cost savings".[38]
35. The DoH maintained in its evidence to us that
good evidence of the efficacy of rehabilitation for head-injured
people is not available. It appears to base this proposition almost
entirely on its own study, the National Traumatic Brain Injury
Study.[39]
Many witnesses, however, claimed that this study was very flawed
and did not represent a reliable standpoint from which to argue
the weakness of scientific evidence on rehabilitation. The study
describes itself in the following terms:
"In 1992, the Department
of Health provided seed-corn funding for initiatives at twelve
National Health Service sites to develop community rehabilitation
services for adults who had suffered a traumatic brain injury.
Funding was for five years, and ten of the sites participated
in a case register exercise in order to chart the progress of
patients and the rehabilitation services which were delivered.
This would yield data for an observational study designed to examine
the relationship between the clinical severity of patients' injuries,
the interventions provided and outcomes at 18 and 36 months. If
possible conclusions were to be drawn about efficient management
and scale of services.[40]
36. As the DoH points out in its evidence, the researchers
were "unable to establish a statistically significant link"[41]
between the amount of rehabilitation input given and the outcome
for the patient. However, according to our evidence, this study
would never have been able to deliver this sort of evidence because
of its basically flawed design. Dr Turner-Stokes was eloquent
in her description of its flaws -
"it was a very poorly
designed study in very many ways... If you take a mixed bag of
head injuries, anything from two months to ten years down the
line, and you collect some arbitrary measures like sometimes GCS
[Glasgow Coma Score] or sometimes post-traumatic amnesia and sometimes
you do not collect those at all because the information is not
available, and you collect a certain amount of information on
records of therapy but probably not a lot and none of that in
relation to actually what the patient might need, and you may
collect those measures on three different occasions bearing no
relationship to the time of the injury... and you bung it in a
database and you see what comes out then the answer is not a lot".[42]
37. Dr Keith Andrews of the Royal Hospital for Neuro-disability
qualified this by describing some of the things which did come
out of the study, but concluded "the fact that we managed
to demonstrate anything at all I think is amazing".[43]
Dr Sheila Adam, the Deputy Chief Medical Officer, conceded, "To
my mind it is not surprising that the project did not reveal the
results, did not prove the hypothesis it was set up to prove"[44]
because of the impossible nature of the task it set itself , and
Ms Sanderson, Team Leader of Neurology and Disability services
policy development, told us that "we were not quite so focused
on things like clinical evidence in 1992" and "were
we to set it up now we would set it up in a different way".[45]
38. What is disturbing about this is not that the
study was not able to say much about what it had been set up to
look at; people seem to agree that some useful things did come
out of it. What is disturbing is that, even though the DoH agree
the study was not properly designed to elicit answers about the
relation between rehabilitation and outcomes, it seemed to insist
in evidence that, because the study had not revealed a statistically
significant link, therefore there was no statistically significant
link. If it is accepted that the study could never have shown
a link, then the fact that it does not is immaterial. Absence
of evidence is not the same as evidence of absence.
39. Moreover, the Department did not seem to think
there was evidence anywhere else to show the significance of rehabilitation.
The only research they referred to in written and oral evidence
was the National Traumatic Brain Injury Study, the recent
report of the Royal College of Surgeons, and the report Safe
Neurosurgery 2000 from the Society of British Neurological
Surgeons.[46]
While these last two reports are no doubt useful on the acute
end of management of head injury, the long term rehabilitation
of head-injured people is not the preserve of surgeons. As we
were told in evidence of the existence of good research evidence
on head injury rehabilitation, which is summarised in Dr Turner-Stokes'
Clinical Effectiveness in Rehabilitation, we find it surprising
and alarming that the DoH did not refer to any of this material;
did not seem aware of it even. It was particularly surprising
that the DoH did not even mention two recent reports specifically
about this subject area: the Royal College of Physicians report
Medical Rehabilitation for people with physical and complex
disabilities, and the British Society of Rehabilitation Medicine's
report Rehabilitation after Traumatic Brain Injury. While
more research is certainly necessary, our impression was that
enough already existed for more to be done by the Government to
support, provide and develop rehabilitation services for this
group. Dr Turner-Stokes affirmed:
"if we can take the
lead from stroke research in particular, where we now know there
is good evidence that rehabilitation in another condition that
gives you severe complex neurological disability... is an effective
way of managing that, then I would say that looking at future
evidence in head injury you would have to take the null hypothesis
that... says 'We have to show that it does not work in head injury'
because there is every reason to suppose that it should".[47]
40. In 1995, the Welsh Affairs Committee conducted
an inquiry into Rehabilitation for Severe Head Injuries in Wales.[48]
This report collected together a useful set of data and experiences
regarding the treatment of head-injured people. The Minister told
us that this report had had a minimal impact on services in England.
While we would not expect the DoH to have implemented in England
the report's recommendations for Wales, the report is a useful
collection of facts also pertinent to head injury rehabilitation
in England, and the DoH did not appear to have used it or even
be aware of what the report said.
41. Despite the amount of research which has been
already carried out, more research is "urgently required"
and the NHS R&D budget does not at present take account of
this.[49]
There is no research grant funding body allocating funding solely
for research into traumatic brain injury, which makes pilot and
start-up projects, which may lead to more major programmes, more
difficult to initiate than for other complaints.[50]
We recommend that the DoH allocates more of the R&D budget
to research into traumatic brain injury rehabilitation.
Multi-disciplinary rehabilitation
42. Rehabilitation for head-injured people spans
a wide spectrum of possible interventions, given that the needs
of different individuals vary widely, and change over time for
each individual. Interventions needed may include any or all of
the following: speech and language therapy, physiotherapy, cognitive
and behavioural therapy, social support, neuropsychology, changes
to the home and installation of certain equipment, and vocational
rehabilitation. Individuals may need various interventions over
the years as crises emerge in normal life. It follows from this
that a multi-disciplinary team will be needed to be able to attend
to the disparate needs of this group of people. The rehabilitation
needs of head-injured people overlap with those of sufferers of
other disorders and complaints, and an effective way of targeting
the majority of these needs would be by grouping provision for
several conditions together, in a generic rehabilitation service.
Many have compared rehabilitation for TBI with stroke rehabilitation
- however, Mr Curley told us that "if you started to compare
where we are in terms of services for people with traumatic brain
injury, say, to people who have had strokes, we are light years
behind".[51]
43. Some head-injured people who go back to live
in the community, and for whom family support is not an option,
also have sheltered housing needs. The recent Government initiative
Supporting People may exclude head-injured people, as it
is aimed at groups identified according to Social services categories-which
have traditionally been difficult for head-injured people to access-people
with "Learning Disability", "Mental Ill Health",
"People with Physical Disability" and "Older People".[52]
In Sussex, Health and Social services have collaborated to set
up a Head Injury Housing Scheme for those with and without compensation
monies - a project which was referred to as an example of best
practice in the annual NHS review of 1994-5.[53]
Vocational rehabilitation
44. Many head-injured people find it very difficult
to return to employment after their injury. Mr Wheeler explained
to us some of his psychological difficulties when he attempted
to return to his former job:
"The problems at work
were the shop floor. Everybody I felt was against me, which they
were not... I just found it impossible to cope with the work place
and the bickering and the backbiting that you get everywhere I
think in the work place. I thought it was all being aimed at me".[54]
In psychological terms, return to some kind of work
is very important for the head-injured person. Moreover, as disabled
people on benefits and requiring various assistance from statutory
agencies over their lives, head-injured people can incur large
costs to the state. It is clearly in the interests of all concerned
that as many people as possible are helped back into employment,
and in fact this is possible for a significant proportion of people.
Indeed, Rehab UK, a charity with several vocational rehabilitation
centres around the country, places "50 per cent of clients
into paid competitive employment, and a further 20-25 per cent
into positive community based outcomes". The charity estimates
that "completion of our specialist programme will generate
a saving to the Exchequer in less than a year after the client
has finished the programme". However, the charity receives
three referrals for every one place and, despite the success rate,
several of its centres are at risk of closure due to lack of financial
support from statutory agencies.[55]
In the NHS, Mr Curley told us about the service in Aylesbury Vale,
where
"the community head
injury service... for the past three years has co-operated with
the Employment Service, with social services and with Headway...
and no less than 64 per cent of the patients with severe head
injury who have been through their vocational rehabilitation programme
in Aylesbury Vale went on to either full time or part time employment
and were still in employment at the one-year follow up stage...
the NHS awarded a Nye Bevan Award to the Aylesbury Vale service
last year."[56]
There seems no good reason why this good practice
cannot be developed and spread.
45. There is very little vocational rehabilitation
available in the UK. This is partly because the NHS does not
see return to work as a health goal. The Employment Service has
some provision for helping disabled people, through Disability
Employment Advisers, but according to a memorandum from a former
Head of Profession (Employment Rehabilitation Service: Department
of Employment Group) the Disability Service within the Employment
Service is wholly inadequate for addressing this kind of need.[57]
Mr Curley of Headway told us:
"Even when you have
disablement employment advisers and people go through the Employment
Service process there may be a lack of understanding of exactly
what that client is going to need in terms of structuring a work
place to make it viable for them. Secondly, there is a really
difficult problem with the length of work placements that the
Department of Employment can find for people attempting to return
to work because they work on a six-week placement maximum. That
is barely long enough for a person with cognitive difficulties
to have got their way round that system at all. Then they have
to leave and they cannot return to that place, they have got to
go to another one, so you start the process all over again".[58]
46. The DoH evidence describes how DoH, DfEE and
DSS are planning Job Retention and Rehabilitation Pilots to test
ways of helping people with prolonged illness or disability to
remain in their jobs and asserts that "this will, of course,
benefit people following head injury".[59]
It is to be hoped that the departments will collaborate closely
with statutory and charitable agencies such as Rehab UK, which
already have expertise in getting head-injured people back to
work. We recommend that the Government learns from the work
that has already been done on helping people with complex neurological
disorders back into work, and formulates vocational rehabilitation
services with sufficient flexibility to be of real help to these
people as well as those with physical disabilities.
47. For those who are not able to return to any kind
of work, the eligibility criteria for Disability Living Allowance
and Incapacity Benefit/Severe Disablement Allowance seem to take
insufficient account of the complex difficulties of a head-injured
person.[60]
Some head-injured people have even been put through the All Work
Test unnecessarily after the cancellation of long term Incapacity
Benefit, as the assessing agencies do not understand the nature
of neurodisability, and the benefits system is not designed to
take account of head injury.[61]
Mr Curley from Headway explained:
"all too often the Benefits
Agency shows it has very little understanding of brain injury.
This is particularly noticeable where general practitioners carry
out assessments for disability living allowance. All too often
we hear of cases where people with a brain injury are either refused
a disability living allowance or have been receiving it and then
the allowance is withdrawn. The commonest problem there is that
the assessor and the assessment process do not enable the person
to express the huge cognitive problems they have got".[62]
48. We recommend that those assessing brain-injured
people for disability living allowance have specialist skills
which enable them to understand the complex combination of physical,
cognitive and behavioural impairments characteristic of this type
of neurological disability; and that the assessment process is
adjusted to allow the input of a patient's advocate, be it a carer,
relative or case manager.
Rehabilitation in the community
49. Different models for the delivery of rehabilitation
interventions exist. Patients can be grouped together in regional
centres which allow for the pooling of expertise amongst professionals
but put pressure on families and patients who have to travel long
distances to reach the centre, and pose problems for the transferral
of skills learnt by patients in the centre back to their home
environment. The alternative is for local provision of fairly
generic services, with only the most specialised services being
located in regional or subregional centres. This would be a step-up,
step-down model, so that people can move between the tiers as
their needs change, accessing specialised help in a centre when
they need it and returning to the community when they can. The
large majority of head-injured people do not need residential
placements or highly specialised inputs, but rather support systems
of information, social interaction and home-based help. Many health
authorities, however, do not provide any such service, and, according
to information provided by Southern Derbyshire Head Injury Service,
"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".[63]
50. Ms Sanderson, from the DoH, told us, "People
need rehabilitation [to get] to the best state of function they
possibly can, but once someone has been rehabilitated and goes
back home they then need the support within the home. This support
should look to give a good quality of life, to try and minimise
some of the deficits people suffer after brain injury".[64]
She seemed to imply that rehabilitation was a short-term intervention
which could be delivered away from the home, as a closed episode
of treatment, before the patient was discharged from a clinical
setting. We find this very disturbing, as it seems to demonstrate
a lack of understanding of the nature and the time-scale of the
rehabilitation that many head-injured people need. Rehabilitation
is carried out in any setting, but if a person is "rehabilitated"
away from his or her home, it is much more difficult for them
to carry over what they have learnt once they go back home: the
"support within the home" is therefore a key part of
rehabilitation, not a separate caring process. Rehabilitation
is also an ongoing process which is rarely tidily finished but
needs to go on long term, perhaps sporadically, and flexibly as
a person's rehabilitation needs change. The phase of rehabilitation
which is so often missed out, according to our evidence, is long
term rehabilitation carried out in the patient's community and
home, and the fact that Ms Sanderson did not seem to classify
this kind of service as "rehabilitation" at all casts
worrying messages about what the DoH think they are providing
and need to provide for head-injured people. We recommend that
health authorities are required to provide rehabilitation in the
community which includes the needs of neurologically disabled
people who have a combination of physical and cognitive impairments.
We further recommend that DoH takes responsibility for the long
term rehabilitation of head-injured people and consults with members
of the professional rehabilitation community on the best shape
of such services.
51. Those who have been discharged home without any
follow-up and for whom a community service does not exist, may
find it very difficult to access whatever limited rehabilitation
possibilities that do exist as outpatient facilities from a hospital
or unit. This is because most GPs have a very limited understanding
of the realities of head injury and its consequences, and so may
not pick up on the needs of head-injured people. We recommend
that GPs are made aware of the nature of head injury and of the
services which are available to cater for head-injured people,
and that these services are made accessible through primary care
not just through emergency acute care. Long term rehabilitation
plans need to be co-ordinated by clinicians in the acute sector,
whose responsibility they should be as part of discharge planning.
We recommend that every head-injured person admitted to hospital
should leave hospital with a clear care plan mapped out for him
or her. The trust will need to be able to access the services
of a manager with a remit to co-ordinate brain injury services
(see paragraph 60) in order to plan services in this way.
52. Much community rehabilitation work would seem
logically to fall within the remit of social services departments.
It appears, however, that social services are ill-equipped to
take on this responsibility. Ms Garber told us that "social
services departments tend to have very limited understanding of
brain injury".[65]
Mr Curley described how Headway had conducted a survey of social
services departments to establish the level of expertise for the
handling of brain injury:
"Headway wrote to every
social services department in England in the second half of last
year and we got a 62 per cent response rate. In response to the
question, 'Do you have one or more specialist brain injury social
workers?', the answer was yes in the case of 27 per cent of those
departments. However, when you analysed those responses it turned
out that something like half of those people are in fact social
workers within physical disability teams with quite widespread
caseloads. Our best guess would be that something like 13 per
cent of social services departments in England have some kind
of specialist social worker".[66]
53. One reason why social services provision is so
uneven, is the ill-defined nature of head injury and lack of good
planning mechanisms for provision of services. The Social Services
Inspectorate Report of 1995 noted that most social services departments
route brain-injured people inappropriately through physical disability
services.[67]
However the report did not specify which department would provide
a more appropriate route. The two main alternatives would be mental
health services and learning disability. The route taken impacts
on the service the individual is likely to receive, in the opinion
of Guy Soulsby, secretary of the brain injury social work group:
"in a recent survey
I did of the type of services members of the brain injury social
work group can offer, I found that those from physical disability
teams were more likely to be limited to providing practical help
within the home whereas those from mental health teams were more
likely to be able to offer support to help people to do a wider
range of things in and outside the home. It is this type of enabling
support which is, in my view, more appropriate for most people
with a head injury".[68]
54. The problem with this, however, is that patients
are often disinclined to engage with mental health services because
of the social stigma felt to attach itself to psychiatric problems.
55. We recommend that social services departments
use an additional classification of user group, to plan services,
which explicitly includes complex neurological problems such as
those resulting from head injury. We believe that the Community
Care Plan should have a section within which these problems are
explicitly considered.
Organisation of services
Case management and co-ordination
56. One of the most difficult problems for head-injured
people and their families is the number of different services
they have to access and communicate with along the care journey.
There seems to be so little co-ordination of services that patients
and their carers, who are likely to be under a great deal of stress,
often have to rely on their own initiative to find out about and
attempt to access services.
57. There are two strands to this problem - inadequate
management of an individual patient's rehabilitation package,
and inadequate management of the district's services and resources.
It is no good having lots of facilities if they are not co-ordinated
and if care pathways are not planned. As the Chair of Headway
Bristol told us of the service in his area, "it sounds like
a good service... but the fragmentation makes a seamless service
almost an impossibility". A recurrent problem in the evidence
is the elusiveness of health authorities when patients and families
are trying to communicate with them to secure the treatment they
need. Headway Bristol also described how clinicians too experience
this frustration: in Bristol clinicians at the Neurosciences department
at Frenchay Hospital prepared and researched a strategy plan for
brain injury and presented it to Avon Health a year ago but it
has not been implemented and there is a feeling of great frustration
at the health authority's unwillingness to communicate.[69]
58. The first problem might be mitigated through
use of a case manager. This means that on presentation, each head-injured
person would be assigned to an individual who would co-ordinate
and manage their programme of rehabilitation following discharge,
through the maze of multiple agencies who may be approached to
provide rehabilitation interventions of various kinds. This would
also give the patient an identified point of reference throughout
his or her care journey, someone with responsibility to help them.
Ms Garber described her experience of such a system in Sheffield;
a team of two people
"who met the family
at point one, as soon as possible after injury and then were able
to follow across hospital boundaries, so you were not tied to
a particular hospital; you could move with your client, through
to outpatient rehabilitation and then on into the community. You
will appreciate that that actually gives you as the worker a good
idea of the resources of each of the service and treatment areas
that your client is going through but enables the family to have
a person to help them through with transitions. You have a person
who can manage those transitions and referrals on".[70]
59. The case management system could have marked
benefits for families too - "if there was one single thing
which would greatly enhance the long term outcomes of people with
brain injuries it would be the provision of a Co-ordinator to
support their families from when they first enter the medical
care setting". [71]
It does not appear to matter from which professional discipline
the case manager comes; however they should not be compromised
by the priorities of their own department. To provide such individuals,
is, however, a considerable commitment; in Ms Garber's words:
"Where you come up against
a great difficulty is the length of time that the difficulty is
going to be with the client. We are talking about a lifetime access
to services, not necessarily of the same intensity".[72]
We recommend that health authorities, trusts and
local authorities are required to put in place a case management
or equivalent system which gives head-injured patients and carers
an identifiable guide and advocate through the whole care pathway.
60. The second problem could be solved fairly straightforwardly
by having a named manager in every NHS trust with responsibility
for rehabilitation services for head-injured people: "where
there are clearly identified individuals with properly defined
roles the relationship between sectors improves drastically".[73]
Obviously, this responsibility could be grouped with another service
area, such as generic rehabilitation services for other user groups
- the important thing is to have someone taking responsibility
for co-ordinating all the agencies involved in providing rehabilitation
services to patients of the trust. The present situation, conversely,
seems all too often to be characterised by agencies passing the
buck and vulnerable people falling through gaps between agencies,
unless they are spotted and rescued by charitable organisations.
We recommend that every NHS trust should
be required to identify a named manager with responsibility for
rehabilitation services for head-injured people.
He or she should liaise with services, case managers and patients
to help co-ordinate the service with the need.
61. We received evidence from the Acquired Brain
Injury Co-ordinator of East Sussex, who describes his job as "aiming
to assist individuals access appropriate services, inform providers
of shortcomings and collate information".[74]
His remit is not restricted to TBI but includes other brain injuries
with similar morbid conditions and symptoms, which seems a sensible
way of using finite resources. This model of service is referred
to by other memoranda with some envy.[75]
The Bodily Injury Claims Management Association: Code of Best
Practice on Rehabilitation, Early Intervention and Medical Treatment
in Personal Injury Claims (September 2000) says of brain injury
case managers, "Obviously, if a specialist case manager can
be obtained then the first hurdle is cleared".[76]
The DoH itself agrees in its evidence that "it is recognised
good practice that each patient should have a case manager".[77]
In reality it will need to be more directive about "good
practice" if local statutory agencies are to implement such
systems.
Collaboration and joint working
62. As effective rehabilitation means a multi-disciplinary
approach, planning a rehabilitation package will have to involve
a variety of agencies. In the statutory sector, this means primarily
health and social services, although it also includes, importantly,
the Employment Service. However, social services and health seem
unable to agree over their respective responsibilities in regard
to rehabilitation, which is perhaps understandable since the necessary
interventions will not always be medical. What is less easy to
understand is how the statutory services can allow their indecision
and differences to obstruct the delivery of vital services to
needy people. As the wife of a head-injured man told us, "the
NHS had been our biggest disability for a long time"; she
went on to say "it is not a lack of money that drives the
problems of rehabilitation per se, but... poor management"
- the health authority in her area had been prepared to fund a
more expensive but less appropriate package than the one she wanted
for her husband.[78]
One problem with the provision of funding by social services,
is that head-injured people do not fit into their categories for
classifying disabled people, since their main disability is neither
physical nor classified as a mental health problem (see paragraph
53). Social services also seem to purchase care home services
from agencies which place the lowest bid, often at the cost of
quality.[79]
63. In fact, in many locations, the statutory sector
is in no position to tackle head injury rehabilitation on its
own, and the independent sector provides a large tranche of available
services. The contribution of the independent sector is large
in this field partly because of the significant gaps in statutory
services, and partly because some victims of head injury win compensation
monies with which they can buy private care packages. Services
provided by the independent sector include specialist services
such as behavioural units, residential units and community networks
of social support such as those provided by Headway. Of the 93
responses received by 28th February to our call for evidence,
18 were from branches of Headway, and Headway was mentioned in
nearly all of the other memoranda, a notable exception being that
from the Department of Health. Headway and other charitable organisations
clearly play a major role in plugging the gaps and providing core
services where the statutory services are inadequate. Angela Hicks
told us, "I can say that if it was not for Headway I would
not be in a fit state to talk to you today".[80]
She described her first meeting with Headway as "the beginning
of tremendous support in terms of reading material, help lines,
professional counselling, art therapy workshops for my children,
advice with solicitors and seeking compensation, knowing what
questions it was you needed to ask".[81]
Despite the important role of the independent - charitable and
commercial - sector, according to our written evidence, the statutory
services neither collaborate with each other nor with independent
agencies in the provision of rehabilitation for head-injured people.
Statutory agencies even refuse to refer patients to providers
in the independent sector, despite the major role of these agencies
in the field. The evidence from the Department, in fact, entirely
omits mention of the charitable and commercial agencies which
provide so many of the services available to head-injured people,
particularly in the community, a fact we find disturbing.
64. Statutory services also seem extremely reluctant
to recognize the potential benefits of collaboration with the
voluntary and charitable sector in the planning of services. A
good example of this has been provided in evidence to us. The
Neuro-rehabilitation Project at Hope Hospital sent us a very detailed
copy of their recommendations for the redesign of neuro services
in Greater Manchester. We also received a memorandum from several
very concerned head-injured people and carers, as well as from
Rehab UK, describing the imminent collapse of Rehab UK's Greater
Manchester Brain Injury Vocational Rehabilitation Centre due to
lack of funding support from the statutory agencies, despite its
track record of success.[82]
The "inter-professional, inter-agency group" which had
compiled the large number of recommendations for the future of
neuro-rehabilitation services in Greater Manchester did not mention
the activities of this charity, nor did the membership of its
group include any representation of independent agencies. Rehab
UK highlights the point that
"ironically in Manchester
the need for these community based services are written into the
Neurosciences Plan, but this has not been fully implemented...
the threat is that a specialised and highly trained team will
be dismantled only to find that in two years time when the restructuring
of the Neurosciences Initiative is complete, the need for the
services will be even more apparent".[83]
65. This kind of lack of communication is very
wasteful of the efforts made by staff of the statutory and charitable
sectors to meet the needs of head-injured people and their families.
66. According to Priory Healthcare, "there is
an untested hypothesis, among some facilities, that independent
providers enjoy the least favourable relationship with their host
health authority".[84]
Leonard Cheshire described to us how it has been used irresponsibly
by health authorities which have initiated research in which the
charity has invested time and money and then taken no further
action.[85]
67. We recommend that the statutory services recognise
the contribution in this field of the independent sector, and
that they collaborate actively with them to provide the best possible
service for the patient.
68. Where statutory services contract with charities
to provide core services, they pay the minimum fee and do not
help charities to improve and develop what they provide. Mr Curley
said,
"the problem for many
local Headway groups is that although the social services department
will contract with them and pay them a daily rate for providing
activity and long term rehabilitation... they invariably will
not or cannot provide the necessary funds for the development
of new services".[86]
69. We recommend that the DoH should help charitable
organisations, where they are providing core services, to develop
these services further.
Planning
70. Planning of services for brain-injured people
is extremely important, for two main reasons. First, brain injury
is a high volume problem. Although the incidence of head injury
is fairly low, life expectancy is normal and hence, over time,
what seems like a low volume problem becomes a high volume one.
Planning helps authorities to provide services more economically.
Second, a lack of planning leads to ad hoc arrangements
and delay for the patient in accessing services. For brain-injured
people this delay can have significant consequences, in terms
of losing the short optimum period in which they can improve the
most from rehabilitation interventions, and even regressing if
the patient is placed in inappropriate surroundings.[87]
71. This lack of planning also seems to prompt health
authorities to avoid providing services where possible, and to
delay as long as possible buying these services for individuals.
The evidence submitted also provides many examples of health and
local authorities' social services departments delaying provision
of services by arguing between themselves about whose responsibility
it is to provide rehabilitative care to head-injured people. These
responsibilities need to be defined centrally to avoid such lengthy
and costly disputes.
72. Health authorities have also been known to avoid
buying out of area treatments which they do not themselves provide,
insisting instead that a patient use the (inappropriate) rehabilitation
service that is provided within the area. Mr Curley:
"it is... an arrogance
on the part of the health authorities that because they have something
called the rehabilitation service, that can cater for everybody
who needs rehabilitation, even though the rehabilitation service
may well be geared up principally to deal with physical rather
than cognitive rehabilitation".[88]
73. We recommend that responsibilities to provide
different kinds of rehabilitation are defined between health and
social services, and that named managers are identified within
both health and social services departments. We further recommend
that health and social services departments collaborate locally
to map out care pathways for head-injured people with clearly
allocated responsibility at each level of care. These care pathways
should include agreements with services out of the catchment area
if the service is not provided within the catchment area of the
health authority.
74. In order to plan meaningfully, authorities need
access to accurate data on the numbers of people needing services.
This is another reason why health authorities must be required
systematically to collect data on the incidence and prevalence
of head injury and subsequent disability (see paragraph 12).
75. Planning is also made difficult by the apparent
lack of knowledge about what resources and services actually exist.
Many memoranda made this point, and it appears that although up
to two years ago a UK-wide directory of TBI rehabilitation units
was produced by a leading Scottish rehabilitation centre, the
future of this invaluable resource is now in doubt due to a lack
of funding.[89]
We recommend that the Government subsidises a publication of
all resources available to head-injured people and circulates
this to health authorities.
76. One reason why authorities do not plan as well
as they should is that the mechanisms for doing so are poor. Rehab
UK tells us - " the criteria established under the Community
Care Plan excludes people with ABI because the assessment instruments
used are biased towards those with physical impairments or mental
health problems, and unable to assess the impact of more complex
cognitive problems".[90]
We recommend that Health Improvement Plans and Community Care
Plans have a section for planning services which will include
the rehabilitative services needed by those with complex neurological
conditions such as head injury.
77. We heard of several examples of money wasted
on badly planned services. The Chairman of Headway Bristol described
the Frenchay Brain Injury Unit in Bristol in fairly pejorative
terms - "for all that has been provided and put in place
the majority of brain-injured and their families are worse off
than they were fifteen years ago".[91]
It was also depressing to hear of good services which had been
allowed to wither, as has been the case in Cornwall, according
to Headway Cornwall -
"the present situation
in Cornwall in 2001 is that services... are patchy and inadequate...
there has 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".[92]
None of the service developments which took place
were supported by the local health authorities but were instead
funded by various grants.
78. There also seems to be a lack of co-operation
between statutory agencies when a wider sub-regional or regional
plan is needed, for example for the provision of specialised services.
It is debatable at what level strategic planning of head injury
services should take place. With the advent of PCG/Ts, the worry
is that these bodies will be
even less well equipped than health authorities to take on planning
of specialised services. Dr Andrews suggests
that "consideration should be given to the appointment or
a Complex Neuro-disability Co-ordinator to regional health authorities
or consortia of PCTs".[93]
The cost of specialist Acquired Brain Injury services will place
a great strain on PCT budgets if there is even a slight increase
in incidence one year - it would make more sense, therefore to
give planning and budgets for these services to a higher tier
of management.[94]
This problem was described by Mr Curley:
"we discovered when
looking at the report of the National Specialist Commissioning
Group annual report that the one subject which most regional specialist
commissioning groups have chosen to look into after they have
dealt with the ones they are required to examine by central Government
was neurological services and that arose from a particular concern
about how brain injury rehabilitation in some of these regions
was going to be funded, because the word coming from primary care
trusts is that this is not something that they are going to be
able to budget for because the costs can be so enormous".[95]
We recommend that the Government makes explicit
the level at which responsibility for planning different levels
of rehabilitation for head injury should be located.
Deprioritisation
79. Perhaps one reason why health authorities do
not prioritise head injury or its rehabilitation is that the Government
does not either. As Lincolnshire Headway writes of the health
authorities, "when approached they say it is not a priority
on the Government or NHS guidelines and they have to keep in line
with them".[96]
Mr Pope of North West London Hospitals trust told us quite clearly
that "one of the things that will undoubtedly concentrate
your mind [as a Chief Executive of a trust] is you would get another
priority or something that you are trying to focus on".[97]
80. On 28th February, the Secretary of State announced
that the DoH would be developing a National Service Framework
(NSF) for people with long term conditions, which will cover neurological
disability and head and spinal injury.[98]
They added "we expect it to cover rehabilitation activity".[99]
It is to be hoped this will be the case and that this will make
a difference to the planning of rehabilitation services in the
localities. However, this NSF will only be ready for implementation
in 2005. When, in oral evidence, we tried to pin the Minister
down to making a commitment as to whether or not the NSF would
definitely include brain injury rehabilitation, it was impossible
to elicit anything firmer than "that would be the intention".[100]
Inequity
81. Services vary in quality across the country to
a large degree, depending on facilities and resources. Services
also vary according to whether or not the head-injured person
has a claim to compensation monies. If this is the case, they
will often purchase private facilities and bypass NHS ones, and
may, as a result, have a far superior level of rehabilitation
to that of an individual without a claim to compensation. They
are also more likely to obtain the services of a Case Manager,
with all the advantages that that entails.[101]
82. Most rehabilitation units operate age restrictions
above the age of 65, even though there is no reason to suggest
older people cannot benefit from rehabilitation. According to
Headway, "anecdotally there is strong reason to suppose rehabilitation
is not made as accessible to older head injury survivors, particularly
those over 65 years, as it is to younger survivors".[102]
As a clinical psychologist and manager of Headway Southampton
wrote, "when brain-injured people reach the age of 65, even
though their problems are related to brain injury not ageing,
social services remove them from their day provision and place
them in older adults day centres, which are not appropriate"
but cost much less to run.[103]
Government Action
83. Modernising Health and social services: National
Priorities Guidance 1999/00-2000/01 states "Two key objectives
are to: treat people with illness, disease or injury quickly,
effectively and on the basis of need alone; and to enable people
who are unable to perform essential activities of daily living,
including those with chronic illness, disability or terminal illness,
to live as full and normal lives as possible".[104]
Only very recently has any action come from the centre to attempt
realise these principles, as regards head-injured people. On 16
November 2000, the Government announced that NICE had been commissioned
to produce guidelines on the "handling" of brain-injured
patients. The guidelines are expected to take between 12 and 18
months to produce. Headway said they "would attach enormous
importance" to these guidelines, with reference to the difference
guidelines have made to stroke services.[105]
However, Yvette Cooper made quite clear to us that, for various
reasons, the guidelines would not include long term rehabilitation.
Asked whether the guidelines would include rehabilitation, she
said "the answer is no if you are talking about long term
rehabilitation".[106]
She emphasised that the guidelines would be concerned exclusively
with acute management of head injury, and so might include very
early rehabilitation interventions within the acute setting. The
reasons why long term rehabilitation was not to come within the
remit of the guidelines, were that "the evidence base is
much stronger for the immediate clinical management of head injury
than for longer term rehabilitation. Secondly, because rehabilitation
must be tailored to the needs of each individual, it just may
not lend itself to NICE clinical guidelines in the same way".[107]
84. Yvette Cooper was clear in oral evidence that,
while the NICE guidelines would not include long term rehabilitation,
the NSF was the place to look for this work to be done. She said,
"Certainly the intention has been for the NICE guidelines
to set up those clinical referral patterns, but for the National
Service Framework to pick up on the detailed work around the rehabilitation".[108]
However, it was impossible to get an unequivocal assurance from
the Minister that the NSF would definitely include rehabilitation.
While we can appreciate that the scoping of the NSF for long
term conditions is yet in its early stages, we would ask Ministers
to clarify whether or not it will include rehabilitation for head-injured
people. As the NICE guidelines do not appear to be relevant to
long term rehabilitation, some assurance is necessary that consideration
of this area will enter into some policy work as a matter of urgency.
85. We were also assured that although the NSF will
not be ready for implementation until 2005, this does not mean
that nothing will be happening before then - "It may be that
some of the work that is commissioned as part of the NSF may lead
to more rapid progress" and "It will not simply be we
tell people at the end of the process in four years' time or five
years' time what happens, we will need to draw people into the
process of development... as we go along. That does provide us
with the opportunity to raise the profile of rehabilitation across
the board".[109]
This seems to us a rather weak assurance, especially since it
is not clear whether or not rehabilitation will figure within
the NSF. We recommend that the Government spells out clearly
what steps it will take to improve the situation in the provision
of rehabilitation services for head-injured people, and that it
instigates plans for action which will come into place long before
2005.
86. The Minister and officials also assured us that
useful work on rehabilitation was being done through the new concept
of intermediate care. Dr Sheila Adam, the Deputy Chief Medical
Officer, told us "as you will know rehabilitation is a major
component of that, with a view to helping people move through
hospital and possibly preventing the need for long term institutional
care - although it is not linked specifically to head injury we
have been very clear that intermediate care, although primarily
focused on older people, will be there for anyone who can benefit
from it".[110]
When asked what guidelines were currently given to health authorities
on rehabilitation, Dr Adam went on to say "I think probably
the best answer is the detailed guidance which has just gone out
to intermediate care, which includes a section on rehabilitation.
That is certainly the most recent statement we have made".[111]
We would be very perturbed to imagine that Dr Adam was implying
that the guidance on intermediate care constituted the best guidance
given to health authorities about rehabilitation. The health service/local
authority circular of 19th January 2001 on Intermediate
Care makes quite clear that intermediate care is predominantly
aimed at older people - it begins "Intermediate care is a
core element of the Government's programme for improving services
for older people".[112]
The guidance does mention other groups: "Service planning
and investment should, however, take into account the needs of
all potential service users, especially younger disabled people
or chronically ill patients and their carers", however the
emphasis throughout is on older people.[113]
Head injury occurs typically to young males, at a time of life
in which they are likely to be establishing themselves in careers
and in starting a family. It is clear that they would derive little
benefit from care and rehabilitation that is so obviously skewed
to the needs of elderly people.
87. Moreover, the guidance makes clear that intermediate
care interventions are short term. In its definition of intermediate
care, the guidance states that "intermediate care should
be regarded as describing services that meet all the following
criteria" - which includes the criterion that services must
be "time-limited, normally no longer than six weeks and frequently
as little as 1-2 weeks or less".[114]
We have already established that rehabilitation for head-injured
people is a long term commitment, and may be for life. We believe
that the Government cannot rely on intermediate care, as so defined,
to provide comprehensive rehabilitation services to head-injured
people. Given the problems surrounding the NICE guidelines, the
NSF on long term conditions, and intermediate care, we recommend
that the Government with urgency formulates policy which does
cater for the long term rehabilitation of head-injured people.
8
The Times, 15.3.01. Back
9 Mental
Health Services: Heading for Better Care, Health Advisory
Services, 1996, p.15. Back
10
Rehabilitation After Traumatic Brain Injury: A Working Party Report
of the British Society of Rehabilitation Medicine, British
Society of Rehabilitation Medicine, 1998, p.8. Back
11 Mental
Health Services: Heading for Better Care, p.189. Back
12 "ICD-10
codes detect only a proportion of all head injury admissions",
Deb S, 1999, in Brain Injury, 13 (5): 369-373, cited in
Ev., p.12. Back
13 Official
Report, 5.2.01, 393w. Back
14 Q95. Back
15 Rehabilitation
After Traumatic Brain Injury, pp.9-10. Back
16 "Disability
in young people and adults one year after head injury: prospective
cohort study" Thornhill et al, 2000 in BMJ
320: 1631-5, cited in Ev., p.3. Back
17 Appendix
25. Back
18 Q14. Back
19 Q23. Back
20 Q11. Back
21 Informal
carers have the right to an assessment of their needs under the
Carers (Recognition and Services) Act 1995. Back
22 Report
of the Working Party on the Management of Patients with Head Injuries,
Royal College of Surgeons, 1999, p.3. Back
23 Q4. Back
24 Q7. Back
25 Appendix
24. Back
26 Appendix
9. Back
27 Ev.,
p.57. Back
28 Ev.,
p.6. Back
29 Q13. Back
30 Q2. Back
31 Ev.,
p.7. Back
32 Appendix
7. Back
33 Appendix
16. Back
34 Appendix
14. Back
35 Q38. Back
36 Q39. Back
37 "The
effectiveness of rehabilitation: a critical evaluation of the
evidence", ed. L. Turner-Stokes, 1999, Clinical Rehabilitation,
Vol 13, Supplement 1, p.19. Back
38 Q71. Back
39 Report
of the National Traumatic Brain Injury Study, Centre for Health
Services Studies, University of Warwick, 1998. Back
40 Ibid.,
Summary of Report, p.4. Back
41 Ev.,
p.57. Back
42 Q70-71. Back
43 Q71. Back
44 Q110. Back
45 Q111-112. Back
46 Safe
Neurosurgery 2000: a report from the Society of British Neurological
Surgeons, 1999. Back
47 Q71. Back
48 Third
Report from the Welsh Affairs Committee, Session 1994-95, Severe
Head Injuries: Rehabilitation, HC 103-I. Back
49 Ev.,
p.34. Back
50 H87
(not printed). Back
51 Q42. Back
52 Appendix
27. Back
53 Appendix
20. Back
54 Q39. Back
55 Appendix
28. Back
56 Q47. Back
57 Appendix
5. Back
58 Q46. Back
59 Ev.,
p.58. Back
60 Appendix
6. Back
61 Appendix
4. Back
62 Q44. Back
63 Appendix
9. Back
64 Q107. Back
65 Q17. Back
66 Q20. Back
67 A
Hidden Disability: Report of the SSI Traumatic Brain Injury Rehabilitation
Project, SSI and DoH, 1995, cited in Appendix 17. Back
68 Appendix
17. Back
69 Appendix
11. Back
70 Q27. Back
71 Appendix
12. Back
72 Q27. Back
73 Appendix
19. Back
74 Appendix
1. Back
75 For
example, Appendix 14. Back
76 Cited
in H65 (not printed). Back
77 Ev.,
p.57. Back
78 H33
(not printed). Back
79 Appendix
7. Back
80 Q11. Back
81 Q16. Back
82 Eg.
Appendix 8; H41 (not printed). Back
83 Appendix
28. Back
84 Appendix
19. Back
85 Appendix
7. Back
86 Q39. Back
87 Ev.,
p.6. Back
88 Q37. Back
89 Ev.,
p.9. Back
90 Appendix
28. Back
91 Appendix
11. Back
92 Appendix
15. Back
93 Ev.,
p.40. Back
94 Appendix
29. Back
95 Q33. Back
96 Appendix
10. Back
97 Q78. Back
98 DoH
Press Notice (16.11.00). Back
99 Ev.,
p.58. Back
100 Q96. Back
101 Appendix 18. Back
102 Ev., p.5. Back
103 Appendix 26. Back
104 Cited in Appendix 23. Back
105 Q50. Back
106 Q98. Back
107 Ibid. Back
108 Ibid. Back
109 Q100, Q102. Back
110 Q101. Back
111 Q103. Back
112 Intermediate Care, HSC 2001/01: LAC (2001)1, 16.1.01, p.5. Back
113 Ibid. Back
114 Ibid., p.6. Back
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