Memorandum by the Independent Healthcare
Association (H 86)
Table of Contents
Independent Healthcare Association
Brain Injury Services in the Independent Sector
Brain Injury Defined
Availability of Rehabilitative Brain Injury
Shortage of People Resources
Development of New Brain Injury Rehabilitation
Rehabilitation Services for Brain Injuries should
be based on Patient Need
Brain Injury Rehabilitation requires access
to a wide range of Services
Community Rehabilitation Brain Injury Services
Funding of Brain Injury Rehabilitation Services
Collaboration between the Independent and Public
Appendix 1List of IHA Member Hospitals
and Units that provide Acquired Brain Injury Rehabilitation services
1. The independent sector provides a very
significant proportion of brain injury rehabilitation services
in the United Kingdom. Registered mental nursing homes in the
independent sector provide 80 per cent of brain injury beds, the
NHS providing the rest. 
2. The independent sector plays an even
more important part in specialist rehabilitation services since
it has often been the only source of the "super-specialist"
skills and facilities. The independent sector should be regarded
as a close partner with the NHS and Social Services Departments
in planning integrated service pathways for rehabilitation services.
3. A commitment to adequately funding services
for people with acquired brain injury by Health Authorities varies
across the UK and is a major obstacle to the delivery of appropriate
treatment and the development of new services. Improved recruitment
and retention of appropriate staff, especially nurses and consultants
in rehabilitation medicine, is also required. A formal Memorandum
of Agreement for the provision of clinical placements in the independent
sector for the NHS has been signed between the Independent Healthcare
Association (IHA) and the NHS Executive. This agreement should
contribute to improving both partnership working and the supply
of skilled clinicians.
4. IHA argues that it is in the best interests
of people with brain injuries to be treated in the most appropriate
unit for their needs. This would require greater flexibility in
the commissioning of services across present contractual boundaries,
and taking advantage of the skills and facilities available in
both the NHS and the independent sectors.
5. The extent of collaboration between independent
sector providers and public sector bodies varies around the country
and the provision of seamless care often suffers as a result.
Pockets of good practice do exist, but by and large the working
patterns of Local and Health Authorities vary so that seamless
service becomes difficult to provide.
6. The Independent Healthcare Association
(IHA) is the leading association for the United Kingdom's independent
health and social care providers. IHA's principal activities are
to promote and protect standards of health and social care in
the independent sector.
7. The Independent Healthcare Association
represents over 90 per cent of all independent mental health hospitals
and substance misuse units. IHA's membership also includes acute
hospitals, nursing and residential care homes, providers of domiciliary
care, pathology laboratories and screening units.
8. In recent years the independent sector
has diversified into specialist areas of mental health provision
and a significant niche provision is acquired brain injury rehabilitation.
Registered mental nursing homes in the independent sector provide
80 per cent of brain injury beds, the NHS providing the rest.
9. Independent sector brain injury services
are situated across the country and either operate as independently
or as part of larger specialist healthcare facilities. See Appendix
1 for a list of IHA members that offer specialist acquired brain
injury rehabilitation services.
10. The public sector is the largest purchaser
of independent sector specialist brain injury services. In the
majority of independent sector hospitals/brain injury units, public
sector purchasers make up over 85 per cent of total revenues.
11. Independent sector brain injury service
providers are already a significant part of the country's service
provision and IHA believes that the future lies in partnership
with the public sector.
12. Acquired brain injury is defined as
non-degenerative injury to the brain that has occurred since birth.
It can be caused by an external physical force or by metabolic
derangement. The term "acquired brain injury" includes
traumatic brain injuries, such as open or closed head injuries,
or non-traumatic brain injuries, such as those caused by strokes
or other vascular accidents, tumours, infectious diseases, hypoxia,
metabolic disorders (eg liver or kidney diseases) and toxic products
taken into the body through inhalation or ingestion. 
13. The terms acquired brain injury, brain
injury and head injury tend to be employed interchangeably in
this field. Given this, IHA has employed the terms acquired brain
injury and brain injury interchangeably in the following submission.
However, it is recognised that such usage is not strictly correct.
14. Some patients with acquired brain injury
have impaired capacity. The majority of patients are treated informally
and only a minority are treated under the Mental Health Act. Thus
it is only the minority that have access to patient safeguards,
such as second opinion doctors and mental health review tribunals.
The proposed legislative changes around capacity in the Mental
Health Act 1983 will be of considerable importance to patients
being treated informally.
15. John Denham, Minister of State for Health,
that around one million people a year receive a head injury in
the United Kingdom and that some 100,000 of those attend hospital.
Every year at least 2,000 adults suffer permanent serious impairments.
16. The annual incidence (new cases a year)
of severe brain injury is thought to be about 8/100,000 of the
population. The prevalence (total cases at any one time) of severe
brain injury is about 100-150/100,000 population. 
17. Health Authorities rarely have data
on levels of disability resulting from brain injury and therefore
the true extent of the problems of brain injury is unknown. The
absence of adequate information about the number of people with
specific forms and levels of brain injury makes it difficult to
plan services. Data should be collected nationally to provide
information on incidence and prevalence of people with brain injury.
18. Although the overall incidence of brain
injury cases is relatively low, the impact of such cases is disproportionately
high in terms of quality of life for those affected and their
families; and in terms of resource demands made on the relevant
authorities, namely health, social services, education and housing.
19. Providers of brain injury services fall
between the categories of mental health and long-term care/disability.
Responsibility for purchasing brain injury services is frequently
dispersed across the acute and mental health sectors with a role
developing for primary care purchasers.
20. Brain injury patients usually have a
complex mix of significant and prolonged physical, medical, cognitive
and behavioural problems. Their problems combine health and social
needs. Due to this complex mix and wide variation of conditions,
specialist treatment centres are the most appropriate means of
treating brain injury patients.
21. Specialist services have the advantage
of developing a high level of skills and expertise, carrying out
research and improving training (for both their own staff and
others). Such services provide a cost-effective use of specialist
equipment and skills and act as an information and advice source
for other units.
22. The independent sector has been a major
provider and innovator of specialist services for people with
brain injury. The ability of the independent sector to be flexible
and operate smaller units dedicated to people with brain injury
has given rise to very high levels of expertise, enabling it to
provide rehabilitation, supported living and outreach services
for people who are too difficult to manage in the public sector.
23. For example, the only specialist unit
for people with profound brain damage, eg vegetative state, minimal
conscious state and locked-in syndrome, is in the independent
sector. The major units for the management of people with behavioural
disorders are in the independent sector, as are those for people
with cognitive impairment. Such units have a record of producing
research to aid the understanding of these uncommon conditions.
24. There is a gross shortage of rehabilitation
beds in the UK. The Royal Hospital for Neuro-Disability
considers that throughout the UK there are only about half the
recommended number of rehabilitation beds available for inpatient
treatment. As a result there are increasingly long waiting lists
for admission to those specialist centres that are available.
25. There is an overall shortage of specialist
rehabilitation centres outside of the independent sector. This
may partly be due to a lack of commitment to rehabilitation in
the public sector.
26. The Royal College of Surgeons Report
on the Management of People with Head Injuries
states "There currently are insufficient resources for rehabilitation
and additional resources 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."
27. Difficulties in getting brain injured
patients into specialist rehabilitation results in inappropriate
use of general medical, surgical or orthopaedic places thus affecting
the waiting list for those patients for which the units do have
28. There is also evidence that many people
with brain injuries (who could successfully be rehabilitated in
the independent sector) are being placed in inappropriate settings,
such as nursing homes for the elderly.
29. Lack of availability of specialist brain
injury services creates a problem of prolonged length of time
from injury to referral. The mean length of time from injury to
referral to independent sector specialist services is often as
long as 41 months. This is of concern because early referral significantly
improves the prognosis for effective rehabilitation and behavioural
change in acquired brain injury patients.
30. In addition to the shortage of financial
resources, the major obstacle to developing services for people
with acquired brain injuries is 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
31. The UK is currently experiencing shortages
of consultants and nurses in rehabilitation and all rehabilitation
disciplines such as physiotherapy, occupational therapy, speech
therapy and clinical psychology.
32. There are no medical consultants in
acquired brain injury. Some IHA members consider that consultant
posts for brain injury should be created, and that appropriate
medical training should be made available.
33. Disability nursing is not recognised
as a nursing speciality in its own right. The importance of nurses
trained in disability nursing cannot be overemphasised. The Royal
College of Nursing should take the lead in developing rehabilitation
nursing as an important special training requirement. The RCN
Institute has a part in developing innovative training courses,
such as the work currently being undertaken around the development
needs of Nurse Consultants and Nurse Practitioners.
34. The formal Memorandum of Agreement signed
between the IHA, on behalf of the independent sector, and the
NHS Executive for the provision of clinical placements is an ideal
opportunity for brain injury units to provide formal clinical
placements and hence facilitate recruitment and retention.
35. The NHS is beginning to develop new
units for brain injured patients but these are rarely able to
take patients with more complex needs because of the pressure
on beds and need for a high turnover.
36. Whilst a need exists to develop more
specialist services for brain injured people within the NHS to
meet local and regional needs, some conditions are rare enough
to require national or multi-regional provision, eg the vegetative
state, or to require specialist skills, eg behavioural management.
37. As mentioned above, the independent
sector has developed precisely these specialist services because
of its greater flexibility for national provision and its ability
to be focused on specific problems rather than having to run a
more general service to meet local, district or regional needs.
IHA argues that these independent sector services should be recognised
as part of the overall provision of the NHS when planning integrated
care pathways for rehabilitation services.
38. In an ideal situation, people with brain
injuries should be treated as locally as possible whilst having
access to the best skills available. However the reality is that
there is a wide variation in the availability of specialist services,
creating the so-called "post-code lottery" provision
39. Existing contractual arrangements between
the independent sector and public purchasers do not always work
for the benefit of people with acquired brain injuries. Contracts
are currently made with specific Health Authorities for the overall
provision of services and those with complex problems are expected
to fit into local services rather than be treated in the most
appropriate specialist unit. Purchasing commitment to people with
acquired brain injury often appears fragile with decision making
at times appearing to reflect purely financial rather than clinical
considerations and need.
40. IHA argues that it is more logical,
and in the best interests of brain injury patients, to be treated
in the most appropriate unit for their needs. This would require
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 sector.
41. It is problematic that many health authorities
and social service departments do not have clear policies on the
management of people with complex forms of brain injury. This
results in local placement managers often being uncertain of the
appropriate action to take.
42. Furthermore, referrers and commissioners
often struggle to find information about available services, especially
for more complex conditions not available locally. This is likely
to be of continuing importance as Primary Care Trusts (PCTs) take
over the responsibility for commissioning of services. IHA recommends,
and could contribute considerable detail to, the establishment
of a central up-to-date database of available services, waiting
times and admission criteria covering both the NHS and the independent
43. Acquired brain injury patients require
varying degrees of rehabilitation input. Acquired brain injury
often results in lifelong disabilities that require considerable
resources to support.
44. Patients with complex and severe problems
that are likely to create long-term disabilities, require early
and frequently intensive management by a specialist rehabilitation
team to prevent unnecessary complications. They also require a
disability management programme that will make long term care
easier and require fewer long-term resources.
45. Patients remaining "moderately"
disabled need access to a wide range of services including ongoing
specialist assessment, social services, community services and,
for some, educational and vocational services. This complex process
requires a well-planned integration of services which is often
46. Many acquired brain injury patients
also have cognitive and behavioural problems, making access to
expert neuro-psychological assessment and management an important
element of rehabilitation. When treatment needs are identified
it is often clear that these need to be provided consistently
and over an extended time period. It is often difficult for the
statutory sector to respond to this, while the independent sector
is able to provide this type of input.
47. The emphasis in independent sector community
rehabilitation services is on integrating the patient into the
local area. In some cases this will result in discharge from a
unit into independent housing whilst in others the patient will
continue to need long term residential care.
48. IHA members have experienced an increase
in the demand for "outreach" work. These are services
that provide a range of interventions in the community either
in the patients' own home or in a dedicated facility in a local
area. However, there is a reluctance to fund this type of care
except in cases that have a high impact.
49. IHA members recognise the need to ensure
that patients are returned to their home, community or to an appropriate
supportive setting as soon as reasonably possible. Rehabilitation
teams work closely with the patient, their family and community
agencies to ensure the most effective solution for the patient's
difficulties. This in turn increases the throughput for the inpatient
facility and assists in addressing the increasing demand on such
50. Despite what independent sector service
provision exists, there remains a shortage of community rehabilitation
services, especially for patients with complex cognitive and behavioural
problems. What is required is a broad based and integrated service,
and the "Hub and Spoke" or networking approach may have
an important contribution to make to this problem.
51. The "Hub and Spoke" concept
is a model of close co-operation between specialist rehabilitation
services, district rehabilitation services and community services,
with each making its 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.
52. 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 should be
further developed to make more cost-effective use of scarce resources.
53. Funding is the main obstacle for admission
to independent sector specialist rehabilitation services, and
a very high percentage of suitable referrals are not funded. Very
often funding authorities fail to commit to a patient. Were funding
to be agreed for all suitable referrals it would:
release acute beds in District General
Hospitals for acutely ill patients; and
patients for rehabilitation would
embark on immediate rehabilitation programmes thus reducing the
rehabilitation time factor and unnecessary delays.
54. IHA members experience difficulties
in obtaining agreement between health and social service departments
as to funding responsibility. Many anomalies and widespread variations
exist in the interpretation of the rules and decision criteria.
This lack of clarity results in some patients not receiving optimal
55. It is the opinion of some IHA members
that the Royal College of Surgeons recommendations for appropriateness
of the environment for the effective rehabilitation of patients
with traumatic brain injury are very often not acted on by funding
56. Funding of specialist rehabilitation
services is a complex issue. Many acquired brain injury conditions
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 (PCT).
57. 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 example, a long-term patient with complex neurological disabilities
can cost £35,000-£60,000 a year and live for several
decades. The larger the PCT the more likely that these costs will
be able to be absorbed, but overall the unpredictable and high
cost nature of complex disability makes budget planning difficult.
58. IHA suggests that consideration be given
to regional or sub-regional, multi-PCT consortia funding for the
acute and rehabilitation phases of conditions producing complex
disability to even out the cost across the PCTs.
59. Collaboration between independent sector
providers and public sector bodies varies. Pockets of good practice
do exist but by and large the working patterns of Local and Health
Authorities vary so considerably that seamless service becomes
difficult to provide. Therefore, IHA considers that the commissioning
of services for brain injury should remain with the Health Authority
and not social services given its specialist nature and should
become a part of specialised services to be commissioned.
60. Independent services are generally purchased
on an ad hoc basis with little or no planning or discussion
with provider units as to the medium or long-term arrangements
61. The responsibility of public sector
provider units and services to collaborate with the independent
sector both at strategic and operational levels is not sufficiently
clear. This can result in long delays, poor quality of discharge
planning (poor discharge arrangements and lack of "move on"
facilities delay discharge) and in some cases relapse for the
62. The largest single hurdle to better
collaboration is communication. The communication lines that exist
in both the Local and Health Authorities does not foster clear,
timely information. Moreover, the failure of Health and Local
Authority departments to work in collaboration exacerbates the
problem for the independent provider. Clear lines of accountability
and identified case managers for each patient within the public
service sector would begin to ease the problem.
63. Independent sector providers maintain
links with purchasers and other significant parties through a
system of case conferences and family meetings, which are held
on a regular basis determined by the patient's length of stay.
Families are routinely involved in the decision-making processes
that relate to the care and treatment of their family member.
64. Collaboration with the public sector
is currently largely dependent upon the quality of the relationships
developed between individual professionals and services. This
is clearly not the most effective approach and much work is required
on defining the responsibility of those concerned with admitting
and discharging patients through the independent system.
65. It would be useful to have centrally
planned (or district or regional depending on the problem) clinical
care pathways identifying local, regional and national approved
NHS and independent sector providers, to assist in decision making.
The Care Programme Approach offers a model that facilitates the
provision of seamless service provision to individuals. Similar
models should be relied upon more widely as there can be difficulties
in co-ordinating different phases of care for people with brain
66. 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.
67. Partnership with the independent sector
should be fully utilised in the provision of assessment and treatment
for patients together with training and education for professionals
68. It is well recognised that people who
have complex conditions are better treated by clinicians that
have taken a special interest in the problems and have seen a
considerable number of similar patients previously. Therefore
IHA considers that people with specialist needs following acquired
brain injury should be treated in the most appropriate skilled
facility, whether this is in the NHS or the independent sector.
69. 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.
70. Health Authorities should have clear
policies and procedures for the management of people with acquired
brain injury. This should include clear pathways of service provision
and identification of approved providers for each stage and type
of brain injury.
71. Health Authorities should have information
about the available services to enable them to set clear pathways
of care, while referrers, commissioners and the general public
should have information about nominated approved providers (both
NHS and independent sector).
72. There should be clearly agreed and documented
guidelines on responsibility for care and funding between health,
social services and, where appropriate, educational, housing or
vocational services for the management of people with long-term
acquired brain injury.
73. Access to specialist services should
not be dependent on where the patient lives. This will require
greater guidance 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
74. 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.
75. The specialist rehabilitation facilities
of the independent sector 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 specialist brain injury services provide
a national service and have developed specialist skills in brain
injury treatment. Advantage should be taken of these skills and
facilities by including the specialist units in the independent
sector in the planning and provision of integrated service pathways
for acquired brain injury.
LIST OF IHA MEMBER HOSPITALS AND UNITS THAT
PROVIDE ACQUIRED BRAIN INJURY REHABILITATION SERVICES
|Name of IHA member
|Brain Injury Services, part of Partnerships in Care
|Beechwood House||Pontypool, South Wales
|Elm Park||Colchester, Essex
|The Children's Trust, Tadworth Court||Tadworth, Surrey
|Four Seasons Healthcare||
|Frenchay Centre for Brain Injury Rehabilitation
|Blackheath Brain Injury Rehabilitation Centre
|Central Scotland Brain Injury Rehabilitation Centre
|Highbank Rehabilitation Centre||Lancashire
|Unsted Park||Godalming, Surrey
|Ticehurst Priory Hospital||Ticehurst, East Sussex
|The Priory Grange Hospital||Sussex
|Raphael Medical Centre||Tonbridge, Kent
|Royal Hospital for Neuro-Disability||Putney, London
|St Andrews Group of Hospitals||Northampton
Mental Health Act Commission's Eighth Biennial Report 1997-1999. Back
Mental Health Act Commission's Eighth Biennial Report 1997-1999. Back
Adapted from Standards Manual and Interpretative Guidelines for
Medical Rehabilitation published by the Rehabilitation Accreditation
Commission (CARF), 1996. Back
House of Commons, Hansard Written Answers for 5 February 2001. Back
Royal Hospital for Neuro-disability, submission to Health Select
Committee inquiry into Head Injury: Rehabilitation. Back
As above. Back
Royal College of Surgeons of England. Report of the Working Party
on the Management of Patients with Head Injuries. June 1999. Back