TABLE OF CONTENTS

  Table of Contents

  Executive Summary

  Independent Healthcare Association

  Brain Injury Services in the Independent Sector

  Brain Injury Defined

  Specialist Services

  Availability of Rehabilitative Brain Injury Services

  Shortage of People Resources

  Development of New Brain Injury Rehabilitation Services

  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 Sectors

  Recommendations

  Appendix 1—List of IHA Member Hospitals and Units that provide Acquired Brain Injury Rehabilitation services

EXECUTIVE SUMMARY

  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. [9]

  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.

INDEPENDENT HEALTHCARE ASSOCIATION

  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.

BRAIN INJURY SERVICES IN THE INDEPENDENT SECTOR

  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. [10]

  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.

BRAIN INJURY DEFINED

  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. [11]

  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, recently stated[12] 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. [13]

  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.

SPECIALIST SERVICES

  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.

AVAILABILITY OF REHABILITATIVE BRAIN INJURY SERVICES

  24.  There is a gross shortage of rehabilitation beds in the UK. The Royal Hospital for Neuro-Disability[14] 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[15] 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 skills.

  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.

SHORTAGE OF PEOPLE RESOURCES

  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 of staff.

  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.

DEVELOPMENT OF NEW BRAIN INJURY REHABILITATION SERVICES

  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.

REHABILITATION SERVICES FOR BRAIN INJURIES SHOULD BE BASED ON PATIENT NEED

  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 of services.

  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 sector.

BRAIN INJURY REHABILITATION REQUIRES ACCESS TO A WIDE RANGE OF SERVICES

  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 lacking.

  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.

COMMUNITY REHABILITATION BRAIN INJURY SERVICES

  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 facilities.

  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.

FUNDING OF BRAIN INJURY REHABILITATION SERVICES

  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 care.

  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 authorities.

  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.

COLLABORATION BETWEEN THE INDEPENDENT AND PUBLIC SECTORS

  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 for patients.

  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 patient concerned.

  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 injury.

  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 and carers.

RECOMMENDATIONS

  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 services.

  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.

February 2001

10   Mental Health Act Commission's Eighth Biennial Report 1997-1999. Back

11   Adapted from Standards Manual and Interpretative Guidelines for Medical Rehabilitation published by the Rehabilitation Accreditation Commission (CARF), 1996. Back

12   House of Commons, Hansard Written Answers for 5 February 2001. Back

13   Royal Hospital for Neuro-disability, submission to Health Select Committee inquiry into Head Injury: Rehabilitation. Back

14   As above. Back

15   Royal College of Surgeons of England. Report of the Working Party on the Management of Patients with Head Injuries. June 1999. Back