MEMORANDUM BY DR KEITH ANDREWS, DIRECTOR,
MEDICAL AND RESEARCH SERVICES, ROYAL HOSPITAL FOR NEURO-DISABILITY,
PUTNEY (H11)
1. EXECUTIVE
SUMMARY
1.1 Severe and complex brain damage has
a major impact on family life, education, work and society as
well as on the long term resources required from health and social
services.
1.2 The difficulties of providing specialist
care for brain injured people are multi-faceted and some will
not be overcome in the short term but require long term planning.
1.3 A fundamental barrier to developing
good rehabilitation services is recruitment and retention of appropriate
staff, especially consultants in rehabilitation medicine and nurses.
1.4 There is a gross shortage of rehabilitation
beds throughout the country and some financial input to this would
have a significant impact on the management of people with brain
damage as well as releasing beds on acute units for their more
appropriate use.
1.5 A more flexible approach to referral
and funding across districts and across regions is required to
take advantage of the limited specialist services that are available.
1.6 The independent sectors play an important
part in specialist rehabilitation services since they have often
been the only source of the "super-specialist" skills
and facilities. They should be regarded as a close partner with
the NHS in planning integrated service pathways.
1.7 The rarity of many forms of brain damage
requiring specialist management creates problems of keeping the
referring clinician and commissioning authority informed about
availability of services. Consideration should be given to the
appointment of a Complex Neuro-disability Co-ordinator to regional
health authorities or consortia of Primary Care Trusts to help
plan an integrated approach across specialist, district, community
health and social services as well as across to vocational and
educational facilities for brain damaged people.
1.8 There is a need for clear central (district,
regional and national) information database of specialist services
to assist referrers, commissioners and public to know the most
appropriate pathway to available services.
2. INTRODUCTION
2.1 The Royal Hospital for Neuro-disability
is a 280 bed voluntary (charity) hospital set up in 1854 to "care
for the incurables discharged from the great hospitals of the
land". Over the last thirty years it has taken an innovative
approach to the management of people with complex, especially
neurological, disabilities and receives referrals from throughout
the UK and abroad. Over the past 30 years it has opened: one of
the first (if not first) young disabled units in the UK; the first
brain injury rehabilitation unit; the only unit specialising in
people with the vegetative and minimal conscious states; the first
Transitional Living Unit for the community reintegration of people
with memory disorders due to brain damage and the first unit in
the UK for people with a combination of behavioural and physical
disorders due to brain damage. The Hospital has a large research
programme, under the direction of Professor Maria Stokes, mainly
for studies of brain damage.
2.2 Dr Keith Andrews is the Director of
Medical and Research Services at the Hospital and has taken a
specialist interest in profound brain damage, especially the vegetative
state.
He has been chairman or a member of a number
of International Working Parties on Vegetative or Minimal Conscious
states. Between 1987 and 1994 he was the Editor of the international
journal Clinical Rehabilitation and was Hon Secretary (1998-99)
and Chairman (1999-2000) of the UK Acquired Brain Injury Forum.
At present he is chairman of the London Regional
Specialist Commissioning Group Neuroscience Review Neuro-rehabilitation
Committee (2000-01) and chairman of South West Thames Branch of
the British Society of Rehabilitation Medicine.
3. THE ISSUES
3.1 This evidence concerns those people
with severe or profound brain damage resulting in complex disabilities
which usually require long term management.
3.2 Such people usually have a mixture of
physical, medical, cognitive and behavioural problems which result
in life long disabilities requiring considerable resources to
support them.
3.3 The presence of this degree of brain
damage has a major impact on family life, education, work and
society as well as on the long term resources required from health
and social services.
4. THE SIZE
OF THE
PROBLEM
4.1 Health Authorities rarely have data
on levels of disability resulting from brain damage and therefore
the true extent of the problems of brain damage is unknown. It
is therefore difficult to plan services without adequate information
about the number of patients with specific forms and levels of
brain damage.
4.2 The annual incidence [new case a year]
of severe brain injury is thought to be about 8/100,000 of the
population.
4.3 The prevalence [total cases at any one
time] of severe brain injury is about 100-150/100,000 population.
4.4 Table 1 shows the number of patients
with various forms of brain damage likely to be seen by an individual
General Practitioner and by a Primary Care Trust
Table 1
Disabilities due to Acquired Brain Injury
related to General Practice[9]
| Incidence—all
| Prevalance—all | Prevalence—Disabling
|
| 1 Disorder | GP (2,500) | PCG/T (125,000)
| GP (2,500) | PCG/T (125,000)
| GP (2,500) | PCG/T (125,000)
|
| Stroke | 5 | 250
| 12\5 | 625 | 8
| 400 |
| Subarachnoid haemorrhage | 0.27
| 14 | ? | ? |
? | ? |
| Head injury | 7 | 350
| | | 4.5 |
225 |
| Moderate brain injury[10]
| 0.45 | 22.5 |
| | | |
| Severe brain injury | 0.2 |
10 | | | 3
| 156 |
| Vegetative/Minimal conscious states[11]
| 0.02 | 1.1 |
| | 0.15 | 7.5
|
| Bacterial meningitis | 0.24 |
12 | ? | ? |
| |
| Viral meningitis encephalitis | 0.5
| 23 | | |
| |
4.5 Table 1 shows that individual General Practitioners
will rarely see a patient with severe disability due to acquired
brain injury—on average one every five years—and possibly
never see a patient with the Vegetative State or one with behavioural
problems.
4.6 Even a Primary Care Trust will see very few new patients
each year with severe brain damage, subarachnoid haemorrhage,
vegetative states, or meningitis which will require a complex
integrated programme. Therefore, the ability to develop expertise
in the commissioning of sevices for this group is extremely limited.
4.7 20-25 per cent of those 16-45 years of age with brain
damage remain severely or profoundly disabled at six months following
their injury.
COMMISSIONER'S
VIEWS OF
BRAIN INJURY
SERVICES
5.1 In a recent survey of commissioners of neuro-rehabilitation
services in the London region the problems identified by the commissioners
for brain injury services were as follows:
— Lack of centres/units with expertise in complex
forms of brain damage. Increasingly long waiting lists for admission
to those specialist centres that are available.
— Difficulties getting brain injured people into
specialist rehabilitation results in inappropriate use of general
medical, surgical or orthopaedic places thus affecting the waiting
list for patients for which the units do have skills.
— Poor discharge arrangements and lack of "move
on" facilities delay discharge.
— Community services are either lacking or are isolated
from the mainstream brain injury services making them less effective.
— Lack of agreement for funding for patients to
specialist centres, especially when in the independent sector.
— Lack of priorities or understanding by Local Authorities
of severe brain damage.
— Difficulty of obtaining Local Authority funding
for people with brain damage.
6. USER GROUPS
OPINION OF
BRAIN INJURY
SERVICES
6.1 In a survey of user groups the following concerns
about brain injury services were raised:
— Difficulty in gaining access to specialist services.
— Particular difficulties in getting services for
people with behavioural disorders.
— Poor community follow up and community services.
— Anything which requires long-term management difficult
to access.
— Lacking vocational support.
— Lack of long-term support for families.
7. RESOURCES
7.1 Available rehabilitation services respond to those
patients who are the largest number (eg stroke patients,) and
who have the potential for relatively rapid recovery. This is
important if beds are to be used for the greater good of the largest
number of patients. This inevitably means that those patients
with a slower rate of recovery are given lower priority than those
with the greatest potential for a speedy recovery.
7.2 Whilst it seems a sensible approach to the use of
scarce resources it neglects the fact that people with very complex
and slow to recover problems are still present and have needs
which are likely to require long term support. This has the implication
that those with the greatest long-term costs to health and social
services (as well as [uncosted] effects on families and society)
take second place to those with more rapidly responding conditions
[and therefore lower costs] to society.
8. BEDS
8.1 There is at present a gross shortage of rehabilitation
beds in the UK. Appendix 1 shows the level of provision by region,
country and UK. It demonstrates that throughout the UK there is,
overall, only about half the recommended number of rehabilitation
beds available for patient treatment.
8.2 There are very few units for complex neurological
disabilities in the UK and much of these specialist services are
provided in national centres run by the independent (private and
voluntary) sector [see below].
8.3 District and Specialist provision cannot be discussed
separately since specialist rehabilitation beds are often occupied
because of a shortage of district services. In some cases this
is because patients whose needs are not specialist are referred
to specialist centres because of lack of local district services.
On the other hand there are many people with specialist needs
managed in district services because there is no easy access to
the available specialist centres.
8.4 Similar problems occur for the acute services which
are unable to transfer patients requiring rehabilitation to either
district or specialist rehabilitation units because of the lack
of services. Not only do patients then not receive optimal management
but other patients who then benefit from the specialist neuroscience
or acute services are denied them since the bed is occupied.
8.5 The Royal College of Surgeons Report on the Management
of People with Head Injuries[12]
states "There currently are insufficient resources for rehabilitation
and additional services are required. . . It is unacceptable for
patients to spend prolonged periods on acute surgical or medical
wards awaiting a place at a dedicated rehabilitation unit. . .
The expenditure of additional resources on rehabilitation units
will make more acute hospital beds available for emergencies and
patients on waiting lists."
9. PEOPLE RESOURCES
9.1 There is also a gross shortage of consultants in
rehabilitation in the UK. Appendix 1 shows that throughout the
UK there is, overall, less than half the recommended number of
consultants in rehabilitation required to provide district rehabilitation
services.
9.2 This shortage of Consultants in Rehabilitation Medicine
is not primarily a problem of funding. Rehabilitation has not
yet developed the kudos and recognition of other specialties.
It therefore has a recruitment problem—many funded Specialist
Registrar posts in rehabilitation medicine are unfilled and therefore
the recruitment base for vacant consultant posts is very limited.
9.3. Whilst the responsibility for building rehabilitation
medicine as a respectable and attractive speciality lies very
much with the professionals, rehabilitation needs to have a higher
priority in the medical undergraduate curriculum. This has implications
for universities to develop more academic units of rehabilitation.
9.4 There is also a well-recognised shortage of nurses
in the UK. Evidence from a survey of London rehabilitation units
show vacancies of established nursing post in rehabilitation to
be about 19 per cent—a very similar figure for nurse vacancies
in neurosciences in general.
9.5 The reasons for the shortage of nurses in rehabilitation
medicine are well rehearsed but there is no doubt, in our opinion,
that the State Enrolled Nurse had an important contribution to
the management of disabled people. We feel strongly that serious
consideration should be given to an additional and shorter nurse-training
programme for qualified nurses being reinstated which does not
require the high academic standards of present admission to nursing
training but produces high quality practical nurses.
9.6 Disability Nursing is not recognised as a nursing
specialty in its own right. The importance of nurses trained in
disability nursing cannot be overemphasised. Until recently, the
only course on neurological disability management was in the voluntary
sector (Royal Hospital for Neuro-disability). The Royal College
of Nursing should take the lead in developing Rehabilitation Nursing
as an important special training requirement.
9.7 In addition there is a shortage in all rehabilitation
disciplines such as physiotherapy, occupational therapy, speech
therapy and clinical psychology. In a recent survey of 10 rehabilitation
units in the London region only one had a (part-time) music therapist,
one had biomedical engineering services, five had (all part-time)
dieticians and seven had a social worker.
9.8 These figures suggest that the major problem in developing
services for people with brain damage is not necessarily a shortage
of financial resources but one of people resources. Whilst an
increase in financial resources to increase bed provision and
staffing is definitely required this would have limited impact
unless attention is paid to recruitment, training and retention
of staff.
10. SERVICE PROVISION
10.1 Patients with severe brain damage need different
services at the various stages in their management.
10.2 In the acute phase they need access to specialist
services for diagnosis, assessment and treatment of their medical
and surgical needs, and rehabilitation during the period of "recovery".
Access to acute services is generally good. Access to rehabilitation
is more difficult because of the lack of general and specialist
rehabilitation centres.
10.3 Those remaining "moderately" disabled
need access to a wide range of services including ongoing specialist
assessment, social services, community services and, for some,
education and vocational services. This complex process requires
a well-planned integration of services which is often lacking.
10.4 Those who have complex and severe disabilities which
are likely to create long term disabilities require early management
by a specialist rehabilitation team to prevent unnecessary complications
and a disability management programme which will make long term
care easier and requiring fewer long term resources. Access and
funding for provision of technology is required, as well as skilled
long term care in the community or in a nursing home.
10.5 Since many of these patients will also have cognitive
and behavioural problems access to expert neuropsychological assessment
and management is an important aspect. Unfortunately there are
few services available for this group of people and much of this
service is provided by the independent sector.
10.6 There are two conflicting requirements. Ideally
patients should be treated as locally as possible whilst having
access to the best skills available. On the other hand it is recognised
that there is a wide variation in the availability of specialist
services—the so-called "post-code" provision of
services.
10.7 Because contracts are made with specific Health
Trusts for the overall provision of services those with complex
problems are expected to be fitted into local services rather
than treated in the most appropriate specialist unit. Thus patients
are treated because of contractual arrangements rather than by
need.
10.8 In the short term human resource practicalities
will prevent purely local provision of specialist services. We
argue that it is more logical for patients with rare and complex
problems to be treated in the most appropriate unit for their
needs. Therefore, there should be greater flexibility in the commissioning
of services across present contractual boundaries taking advantage
of the skills and facilities available in both the NHS and the
independent sectors.
10.9 One of the problems is the many health authorities
and social service departments do not have clear policies on the
management of people with severe forms of brain damage and therefore
local placement managers are often uncertain of the appropriate
action to take.
11. LACK OF
SKILLS
11.1 The skills required to treat people with complex
brain injury are difficult to develop locally because staff see
so few patients due to the limited number of patients available
in a district service for treatment. This has been well demonstrated
by research at the Royal Hospital for Neuro-disability[13]
which showed that 40 per cent of those patients referred as being
in the vegetative state (ie totally unconscious) were aware to
some degree. This included one man who had been misdiagnosed as
being in the vegetative state for seven years who was able to
"dictate" a letter to his wife—two weeks after
assessment in a specialist centre.
11.2 It is well recognised that people who have rare
conditions are better treated by clinicians who have taken a special
interest in the problems and have seen a considerable number of
similar patients previously. It is, therefore, our opinion that
people with specialist needs following brain damage should be
treated in the most appropriate skilled facility, whether this
is in the NHS or the independent sector.
12. THE NEED
FOR SPECIALIST
CENTRES
12.1 Some units for brain injured people are beginning
to be developed in the NHS but these are rarely able to take those
with more complex needs because of the pressure on beds and need
for a high turnover. Most of the specialist units usually have
a national catchment area and arein the independent sector eg
The Royal Hospital for Neuro-disability in Putney for severe head
injury, vegetative state, locked-in syndrome, behaviour disorders
in combination with physical disabilities Huntington's disease
and late stage multiple sclerosis; the Kemsley Unit and Grafton
Manor, both in Northampton, and Ticehurst Hospital in Sussex for
behaviour disorders; and Tadworth Court in Surrey for brain damaged
children.
12.2 Whilst there is a need to develop more specialist
services for brain injured people within the NHS to meet local
(regional needs) there will be some conditions which are rare
enough to require national or multi-regional provision (eg the
vegetative state and brain stem syndromes) or require specialist
skills (such as behavioural management). These are areas where
services are already developed in the independent sectors because
of their greater flexibility for national provision and ability
to be focused on specific problems rather than having to run a
more general service to meet the local (district or regional)
needs. We argue that these services should be recognised as part
of the overall provision of the NHS when planning integrated care
pathways.
12.3 Specialist services have the advantage of developing
a high level of skills and expertise, carrying out research, improving
training (for both their own staff and others) and provide a cost-effective
use of specialist equipment and skills as well as being a source
of information and advice for other units.
13. COMMUNITY CARE
13.1 Whilst it is the aim of most rehabilitation programmes
to care for people at home there are few resources available to
provide the necessary support. Patients admitted to Nursing Homes
generally receive good nursing care but there is usually a lack
of supportive therapy and psychology services. Part of this is
the lack of financial resources and lack of expertise but is also
partly due to the lack of agreement about the source of funding
between health and social service departments.
13.2 There is also a lack of community rehabilitation
service, especially for those with complex needs, in particular
those with cognitive and behavioural problems. This requires a
broad based and integrated service. The Hub and Spoke or network
approach (see below) may have an important contribution to make
to this problem.
14. CO -ORDINATION
OF SERVICES
14.1 The Joint Working Party of the Association of British
Neurologists (ABN) and the British Society for Rehabilitation
(BRSM)[14] on Neurological
Rehabilitation in the United Kingdom expressed concern that "there
are considerable numbers of neurologically disabled people in
the community and the majority of these have inadequate health
provision." It goes on to point out that "most people
with a neurological disability are not able to see a consultant
neurologist on a regular basis" and that "...10% of
the most severely disabled population will have no contact at
all with any health professional."
14.2 In recognising the complexity of service provision
and the general lack of information about available services we
propose that each district/PCT (or group of districts/PCTs) has
a Co-ordinator for Complex Neuro-disability who will take on the
role of identifying the appropriate service and co-ordinate the
process of gaining access to services and for the follow on services
after discharge. We see advantages in the concept of a Co-ordinator
who can be called on by the general practitioner or acute services
to help plan an integrated care pathway from the acute onset through
rehabilitation to community care.
14.3 The Hub and Spoke, or networking, concept is a model
of close co-operation between specialist rehabilitation services,
district rehabilitation services and community services with each
making their own special contribution to the total care of the
patient. The Specialist service provides special skills, techniques,
equipment and facilities as well as a base for staff support,
training and research. Close working links are maintained with
outlying parts of the service, eg shared or rotating staff. Specialist
peripatetic community teams may keep their base in the hub unit,
and travel out to patients in the community, or receive them for
day-care in the main unit as required. This concept needs further
development within the NHS to make more cost-effective use of
scarce resources.
15. FUNDING ISSUES
15.1 Funding of specialist neuro-rehabilitation services
is a complex issue. Many of the conditions discussed above are
rare yet their management is at a high cost because of the complexity
of the disorders. This creates several problems for commissioning
by the Primary Care Trusts:
15.1a Individual GPs are unlikely to develop skills or
have a knowledge base to know where to commission services.
15.1b The high cost of these disorders will put a great
strain on PCT funding if there is even a slight increase in numbers
of patients over the budget set aside for such cases. For instance
a road traffic accident could easily result in four people severely
brain damaged out of the annual average of 10 across a PCT—each
giving an annual cost of about £100,000-£160,000 to
the GP budget during the acute phase. Even a long term patient
with complex neurological disabilities can cost £35,000-£60,000
a year and live for several decades. The larger the PCG/T the
more likely these costs will be able to be absorbed but overall
the unpredictable and high cost nature of complex disability makes
budget planning difficult.
15.2 It is therefore suggested that consideration be
given to regional or sub-regional (multi-PCT consortia) funding
for the acute and rehabilitation phases of conditions producing
complex neuro-disability to even out the cost across the PCTs.
15.3 It is important that the GP has responsibility for
the management of the patient and therefore needs to be fully
involved in the decision making programme but this has to be balanced
by access to information for appropriate commissioning and protecting
individual PCTs financially from disproportionate fluctuations
in the number of people with these rare but costly conditions.
15.4 One common complaint is the difficulty in getting
agreement between health and social service departments as to
funding responsibility. There are many anomalies eg three patients
in the same nursing home with the same level of disability receiving
different levels of funding: one being fully funded by the Health
Authority for all care, another receiving joint funding between
the health and social services department and the third being
funded fully by social services department and being means tested.
There are widespread variation in interpretation of the rules
and decision criteria. There is at least one Health Authority/Social
Service area which will not consider joint funding. This lack
of clarity results in some patients not receiving optimal care.
15.5 Another area of concern is the unwillingness of
some Health Authorities to accept responsibility for the provision
of communication and other technological aids. Thus funding often
has to be found from charities and other funds. Some system similar
to the budget provision for environmental controls needs to be
set up to ensure that these essential aids to function and quality
of life are available from public funds.
16. INFORMATION
16.1 One difficulty experienced by referrers and commissioners
is in finding information about available services—especialy
for the more complex problems which are not available locally.
This is likely to be of continuing importance as commissioning
of services becomes the responsibility of PCTs. Wherever the responsibility
for commissioning of specialist services lies it will be important
that there is a central up to date database of available services,
waiting times and admission criteria covering both the NHS and
the independent sector.
16.2 It would also be useful to have centrally planned
(district or regional depending on problem) clinical care pathways
identifying approved providers, locally, regionally and nationally
in both NHS and independent sectors, to assist in decision making.
17. THE INDEPENDENT
SECTOR
17.1 The independent (private and voluntary) sectors
have been major providers and innovator of services for people
with brain damage. For example, the only specialist unit for people
with profound brain damage (vegetative state, minimal conscious
state and locked-in syndrome) is in the voluntary sector (Royal
Hospital for Neuro-disability). The major units for the management
of people with behavioural disorders are in the independent sector
(especially Kemsley Unit at St Andrew's Hospital Northampton;
Grafton Manor, Grafton Regis; Royal Hospital for Neuro-disability,
Putney; Ticehurst Rehabilitation Unit, East Sussex); as are those
for people with cognitive impairment (Brain Injury Rehabilitation
Trust and Royal Hospital for Neuro-disability, Putney). These
centres have been in the forefront of innovative management and
accepted patients from throughout the UK and abroad.
17.2 Most of the services provided by the independent
sector is for rare conditions requiring a national or super-regional
service. In addition, much of the service is provided by voluntary
hospitals, such as the Royal Hospital for Neuro-disability and
the Kemsley Unit, which raise considerable sums of money from
charitable donations to develop the high standards and carry out
research.
17.3 The strength of the independent sector in providing
innovative services for people with rare conditions on a national
basis needs to be formally recognised and encouraged. Many commissioning
agents prefer to use NHS units even when the skills are not available
or to refer people with complex disabilities for long term care
rather than give access to specialist services because they are
in the independent sector.
17.4 We recommend that the independent sector is integrated
into the planning for specialist rehabilitation services of people
with complex brain damage.
18. RESEARCH AND
DEVELOPMENT
18.1 There are many difficulties in carrying out research
into complex but chronic neurological disabilities. First the
conditions are usually uncommon, if not rare. Secondly this group
of patients are scattered around a wide variety of placement:
hospitals, nursing homes and at home. These are rarely the centres
that carry out research and therefore these cases go largely unreported.
Thirdly the measurement tools for outcome of complex interaction
of disabilities have not been well developed.
18.2 A discussion paper from the Centre for Health Economics[15]
emphasised the importance of research in rehabilitation to demonstrate
its cost-effectiveness. It stated: "In rehabilitation services
for patients after disabling events, for instance head injuries
and strokes, providers are advocating enhanced funding in a humane
and well-intentioned fashion. However, the knowledge is absent
to direct that funding to those activities which can benefit patients
at least cost."
18.3 There is therefore little evidence for or against
any form of treatment. This is of particular concern since complex
neurological disorders produce long term disabilities at considerable
cost to society.
18.4 This is clearly an area of need requiring an academic
approach. The specialist centres are likely to be able to provide
the volume of patients and be academic orientated organisations
and therefore could be the basis for much of the research.
18.5 Whilst acquired brain injury in general, and complex
disabilities in particular, are not included in the priority areas
for research, the NHS Research and Development Directorate should
recognise that acquired brain injury is the main cause of death
in young adults and is the main cause of long term disability
in young people. The NHS R&D funding should focus research
into a specific number of research centres to carry out research
into the management of people with acquired brain damage.
19. TRAINING
19.1 The problems of the relative rarity of the condition
and the chronic nature of complex disabilities results in patients
being placed in a wide variety of care provision including hospitals,
nursing homes and at home with family. The lack of expertise needs
professional advice and training for the local services. This
could be a role of the specialist centres. Good support and training
should prevent some of the complications that require specialist
services.
20. CONCLUSION
20.1 The problems of brain damage management are a combination
of poor provision of services, the broad range of disciplines
and specialties involved, the shortage of professional staff,
limited financial resources, the rarity of (and therefore knowledge
and skills available) complex disabilities and the lack of flexibility
with the commissioning services for out of area funding.
20.2 The solutions need a combination of long term planning
(such as in recruitment, training and retention of staff), immediate
funding for additional beds at both district and specialist centres,
and innovative use of present resources.
20.3 Much can be achieved by ensuring that information
is available about specialist services, not only in the local
area but in neighbouring areas or further afield. A Complex Neuro-disability
Co-ordinator for a region of consortia of Primary Care Trusts
would help to ensure that there is good integration of care from
the onset of the brain damage, through the acute, rehabilitation
as community services as well as into employment and vocational
training.
21. RECOMMENDATIONS:
21.1 Health Authorities should collect sufficient data
on levels of disability, outcome and long-term problems of people
with complex disabilities to assist in planning of services and
to avoid unnecessary long-term complications developing. [4.1]
21.2 Health Authorities should have clear policies and
procedures for the management of people with complex brain damage.
This should include clear pathways of service provision and identification
of approved providers for each stage and type of brain damage.
[10.9, 14.3]
21.3 Health Authorities should have information about
the available services to enable them to set clear pathways of
care as well as nominated approved providers (both NHS and independent
sectors) available to referrers, commissioners and the general
public. [16.1, 16.2]
21.4 There should be clearly agreed and documented guidelines
on responsibility for of care and funding between health, social
services and, where appropriate, educational services or vocational
services for the management of people with long-term complex brain
damage. [10.9, 15.4]
21.5 Access to specialist services should not be dependent
on where the patient lives. This will require greater flexibility
in commissioning services out of area and across commissioning
authority lines. It will also require a greater acceptance of
the independent sector as part of the total package of available
services and be included in regional planning of services. [8.2,
10.8, 12.2]
21.6 In view of the rarity and specialist nature of complex
disability the commissioning of services should be the responsibility
of a regional or subregional authority. This will require appropriate
transfer of funds. [15.2]
21.7 A Complex Neuro-disability Co-ordinator should be
appointed by health authorities or consortia of Primary Care Trusts
to help plan an integrated care pathway from the time of admission,
through the acute services, into rehabilitation and eventually
to care in the community, education and vocation. They would also
work across health and social services to help plan and co-ordinate
the services for people with complex disabilities. This will particularly
be of value to those patients with cognitive or behavioural problems
who often fall through the net. [14.2]
21.8 There is a need for more specialist expertise at
regional levels with access to these centres from a wider catchment
area depending on the special interests and skills of the regional
centre. [10.2-10.5, 11.1, 11.2, 12.2, 12.3]
21.9 The specialist rehabilitation facilities of the
independent sectors should be accepted as part of the national
framework of service provision and included as approved providers
for planning purposes and in integrated care pathways. Most of
the independent sector (many voluntary) specialist brain injury
services provide a national service and have developed skills
in the very narrow but difficult to manage area of brain damage
management. Advantage should be taken of these skills and facilities
by including the specialist units in the independent sectors in
the planning provision and integrated service pathways for brain
injury. [11.2, 12.1, 12.2, 17.1-17.3]
21.10 People with complex disabilities due to brain damage
inevitably have chronic problems which will require long term
management in the community. Resources are needed to support these
people in the community, with regular assessments and the necessary
interventions to prevent deterioration or provide ongoing support
especially those with cognitive or behavioural problems. [13.1,
13.2]
21.11 There needs to be an increase in district rehabilitation
beds to provide more rapid access to rehabilitation for people
with brain injury and to prevent unnecessary occupation of acute
and specialist rehabilitation beds which can be more appropriately
used for other people on waiting lists. [8.1, 8.3, 8.5]
21.12 Rehabilitation medicine should be more widely taught
in medical schools. This will encourage a wider understanding
of the potential of rehabilitation in the management of all disabled
people and therefore change attitudes. It will also encourage
a small but vital number of doctors to take up rehabilitation
as a specialty thus overcoming the gross shortage of consultants
in rehabilitation. These will require an increase in academic
posts within medical schools. [9.2, 9.3]
21.13 The Royal College of Nursing should develop rehabilitation
nursing to encourage a broader interest in caring for disabled
people and to develop higher multidisciplinary skills. [9.6]
21.14 Consideration should be given to re-introducing
the equivalent of the State Enrolled Nurse. These nurses, whilst
not having the higher academic skills to enter State Registered
Nurse training provided a good level of practical nursing care.
[9.5]
21.15 Funding for technological aids, such as communication
aids and computers, should be a formal part of the NHS funded
provision rather than having to depend, in many cases, on charitable
funding. [15.5]
21.16 It is recommended that there is a nationally based
R & D policy on research and development into complex disabilities
to develop evidence based practice for the effective management
of patients and the planning of services. [18.1-18.5]
21.17 That a mechanism is set in place for the training,
advice and support of staff caring for people with complex disabilities
in their local communities. [19.1]
Dr Keith Andrews MD FRCP
Director of Medical and Research Services
APPENDIX 1
Provision of beds and consultants in rehabilitation
medicine throughout the UK[16]
| Region | WTE Cons Posts per M pop*
(% of recommended)
| All Beds per M pop* (% of recommended)
|
| Northern | 1.9 (47.5%) |
18.7 (31.2%) |
| North West | 1.6 (40.0%) |
28.6 (47.7%) |
| Mersey | 1.2 (30.0%) | 15.2 (25.3%)
|
| Trent | 1.9 (47.5%) | 32.5 (54.2%)
|
| Anglia | 1.7 (42.5%) | 37.3 (62.2%)
|
| West Midlands | 2.2 (55.0%)
| 16.8 (2.0%) |
| Wessex | 2.2 (55.0%) | 31.6 (52.7%)
|
| South West | 1.5 (37.5%) |
34.5 (57.5%) |
| NE Thames | 0.9 (22.5%) |
26.6 (44.3%) |
| NW Thames | 2.3 (57.5%) |
14.0 (23.3%) |
| SE Thames | 1.4 (35.0%) |
19.8 (33.0%) |
| SW Thames | 1.7 (42.5%) |
34.7 (57.8%) |
| Oxford | 2.5 (62.5%) | 39.2 (65.3%)
|
| Yorkshire | 1.6 (40.0%) |
27.0 (45.0%) |
| England | 1.8 (45%) | 26.9 (44.8%)
|
| Scotland | 2.9 (72.5%) |
50.0 (83.3%) |
| Wales | 0.8 (20.0%) | 29.3 (48.8%)
|
| N. Ireland | 1.2 (30.0%) |
15.0 (25.0%) |
| UK | 1.7 (42.5%) | 30.3 (50.5%)
|
9
Royal College of Physicians, Physical Disability in 1986 and Beyond.
A Report of the Royal College of Physicians. J Royal College of
Physcians of London 1986; vol 20; July 1986. Back
10
Medical Disability Society. Working Party Report of the Medical
Disablity Society on the Management of Traumatic Brain Damage.
1988. Back
11
Royal Hospital for Neuro-disability. International Working Party
Report on the Vegetative State. 1996. Back
12
Royal College of Surgeons of England. Report of the Working Party
on the Management of Patients with Head Injuries. June 1999. Back
13
Andrews K, Murphy, Munday R, Littlewood C. Misdiagnosis of the
vegetative state: retrospective study in a rehabilitation unit.
British Medical Journal 1996; 313: 13-6. Back
14
Association of British Neurologists and the British Society for
Rehabilitation. Neurological Rehabilitation in the United Kingdom.
1992. Back
15
McKenna M, Maynard A, Wright K. Is rehabilitation cost effective?
Centre for Health Economics Health Economics Consortium, University
of York, Discussion Paper 101, 1992. Back
16
Based on survey by British Society of Rehabilitation Medicine
2000. Back
| 
