Select Committee on Health Minutes of Evidence



MEMORANDUM BY DR LYNNE TURNER-STOKES, DIRECTOR, REGIONAL REHABILITATION UNIT, NORTHWICK PARK HOSPITAL (H19)

HEAD INJURY REHABILITATION—HOW SHOULD IT BE PROVIDED?

EXECUTIVE SUMMARY

  Rehabilitation involves the restoration of an individual to optimal physical, cognitive, psychological and social function following brain injury. Often it means life-long support of those who have to live the rest of their lives with permanent disability.

  Patients need different types of rehabilitation programmes at different stages in recovery: A range of different services to meet these differing requirements, but close networking and communication is essential to ensure a seamless continuum of care.

  Age-ism is to be avoided, but old and young people often require different approaches to rehabilitation.

    —  Younger patients with more complex needs for rehabilitation may require longer in hospital using specialist skills and facilities to gain full independence.

    —  For older patients, hospital is a dangerous place—rapid discharge to continued rehab in the community is preferable.

    —  The cut-off point at which it is appropriate to provide either of these approaches, is not determined simply by chronological age but should be judged in individual cases.

  Investment is required in both specialist and general rehabilitation services to maintain efficient throughput through acute hospital beds.

  Additional resources must be provided to expand the existing specialist rehabilitation facilities to critical mass, but require the demonstration of co-ordinated service planning across a regional or supra-district area to ensure that the range of networked services is offered.

  Services should be planned on a hub-and spoke model with a specialist rehabilitation service as the hub. Hub units require investment to develop outreach services to share their skills with community teams, nursing homes and general rehabilitation wards.

  Specialist rehabilitation services sited in acute hospitals need to be ring-fenced from acute services in order to function effectively, but they need to demonstrate liaison with general hospital rehabilitation wards to ensure that those patients requiring specialist rehabilitation are identified and referred appropriately.

  Collaborative commissioning arrangements must be in place so that selection of patients for specialist rehabilitation is on the basis of clinical need and not financial expedience.

  Specialist rehabilitation services should be provided in every district, but should be supported by a smaller number of complex regional services—low volume, high cost services for individuals with complex rehabilitation needs beyond the scope of their local and district services.

1.  HEAD INJURY REHABILITATION—HOW SHOULD IT BE PROVIDED?

1.1  Definition of brain injury rehabilitation

  There are many published definitions of rehabilitation most of which read along the following lines: "Restoration of an individual to optimal physical, cognitive, psychological and social function following injury".

  Broadly, rehabilitation offers two main approaches:

    —  Restoration of damaged function—for example, getting the patient up on their feet again.

    —  Compensation for lost function, using a variety of equipment, aids and adaptations.

  Rehabilitation is not "just for Christmas"—very often it means life-long support of those who have to live the rest of their lives with permanent disability. Not only are they prone to a variety of medical conditions, such as pressure sores, infections, contractures etc, but in addition, they and their families need support to cope with the psychological, social and economic consequences of their disability. Management of chronic disability and acute rehabilitation require very different skills and services.

  Following head injury, many patients will fortunately make a good recovery, but sadly not all. At the very severe end of the spectrum, patients may remain in "persistent vegetative" or "minimally responsive" states for the rest of their lives, requiring total care. Those less severely injured may make a partial recovery returning home, but requiring support to adjust to and live with their disability and handicap. A very much larger group suffer apparently minor injury (often not even requiring hospital admission), but subsequently have high-level cognitive deficits such as memory and/or attentional problems or altered personalities, which disrupt their lives and those about them.

  Patients who have continued deficits following head injury thus fall into two main groups:

    —  Those with physical deficits—paralysis, contractures etc—as well as a range of cognitive and communicative problems.

    —  Those who make a good physical recovery, but continue to have cognitive and/or behavioural problems with all the accompanying emotional and psychosocial consequences—the so-called "walking wounded".

  Clearly these groups require very different interventions from staff with different skills and training. Some services can be provided by general therapy departments, others require highly specialist skills. A range of different rehabilitation services is required.

  Although this document concerns brain injury primarily resulting from traumatic head injury, those who sustain head trauma often suffer from other injuries such as fractures, limb loss, spinal cord injury or burns. Head injury rehabilitation cannot be considered entirely in isolation. Moreover, rehabilitation tends to focus on deficits and disabilities, rather than medical diagnoses. In practice brain injury rehabilitation services often cover a number of different pathologies including stroke, head injury, "anoxic" brain injury following cardio-respiratory arrest, drowning etc, and infection eg meningitis.

1.2  Injury to independence—the changing face of rehabilitation

  Documents considering rehabilitation frequently ask, "Where should rehab services be provided, in the hospital or in the community?" Clearly this is the wrong question. Different patients need different things. Services need to be provided both in the hospital and in the community. The real question is 'How do we make sure that individual patients can access the service that is correct for them?'

  Fundamental to understanding rehabilitation is the awareness not only that different patients need different types of service, but the same patient needs different things at different stages in recovery: In development of a strategy, these distinct aspects of rehabilitation are recognised along with the need to provide a range of different services to meet the differing requirements.

1.3  The Slinky Model for provision rehabilitation services

  In rehabilitation terms, these different stages are illustrated by the Slinky model, which uses the analogy of a child's "slinky" toy progressing down a staircase to describe a network of rehabilitation services, supporting the individual through their recovery. The model is illustrated in Figure 1.

  An essential feature of the slinky model is excellent communication and flow of information from one stage to another so that the individual can move down the staircase in a "seamless continuum of care". If one or more of the steps is missing, the analogy still holds—the thing tumbles down the rest of the way and ends up in a tangled mess on the floor.

  More detailed description of provision in the different stages of rehabilitation is given below and summarised in Figure 2.

1.3.1  Acute care

  During the acute care stages, the patient may be critically ill, undergoing surgery or in intensive care. Often bed-bound—maintenance of optimal function during this time to avoid complications which later delay recovery is critical:

  Features of Rehabilitation in the acute and early post-acute stage include:

    —  Excellent nursing with attention to positioning, and management of skin, bowels, bladder etc.

    —  Therapy aimed at reducing impairment—eg stretching and splinting to avoid contractures, dysphagia management to avoid chest infections.

    —  Therapy often undertaken by a single discipline at a time, eg physio, SLT.

1.3.2  Late post-acute and Transition

  As the patient improves, and starts to get up and about, rehabilitation targets basic daily living skills to regain sufficient physical independence to allow the patient to return to the community.

  Features of Rehabilitation at this transitional stage include:

    —  Therapy now delivered by a closely integrated multi-disciplinary team—aimed at increasing independence and reducing disability.



    —  24-hour rehabilitation nursing care to carry over skills attained in therapy to everyday practice on the ward—attention to continence, skin care, nutrition, etc

    —  Patient and family increasingly involved in goal setting and prioritisation

    —  In-patient care to start, but with emphasis on discharging planning. Where appropriate there may be graded discharge—visits or over-night stay at home prior to discharge

    —  Time scale for this phase depends on rate of recovery, final outcome expected:

      —  Younger patients with more complex needs for rehabilitation may require longer in hospital to gain full independence

      —  For older patients, hospital is a dangerous place—rapid discharge to continued rehab in the community is preferable.

1.3.3  Community rehabilitation

  After discharge to the community, patients require continued rehabilitation, either as a day or out-patient attending hospital or in their own homes with domiciliary/outreach services. Further down the road, may access advice as necessary by self-referral to drop-in clinics.

  Features of Rehabilitation at this community stage include:

    —  Therapy often delivered by a smaller team—perhaps two to three disciplines

    —  Aimed at minimising handicap

    —  Goals determined by patient and family as they increasingly regain control, but easy access to medical advice is an important part of chronic disability management.

    —  Patients with severe cognitive impairment may continue to need medical direction throughout their life, and this may be particularly vital for those with chronic or progressively disabling pathology.

  Despite the recent vogue for community-based rehabilitation centred in the home, it is now apparent, that where there are needs for special facilities or input from many disciplines, rehabilitation may be more appropriately and cost-effectively provided in the hospital/unit setting on an in- or day-patient basis.

  The site where rehab is delivered therefore depends on the patient's needs

    —  Hospital based—if they require special equipment or facilities, or the co-ordinated input of many disciplines, and can access transport to get to hospital

    —  Home-based—if it is important that rehab is undertaken in their familiar environment. Rehabilitation in the third "community" phase must be provided flexibly in the hospital or home setting as appropriate. The availability of transport services will determine this flexibility.

  1.4  Age-ism and the approach to rehabilitation

  Age-ism is to be avoided, but it is important to recognise that old and young people have different needs and expectations of outcome and there is therefore a difference in approach between "care of the elderly rehabilitation" and "young adult rehabilitation". The cut-off point at which it is appropriate to provide either of these approaches, however, is not determined simply by chronological age and should be a matter for judgement in individual cases.

  For elderly patients, hospital is a dangerous place and rehabilitation towards independent function ability is often much more appropriately provided in the context of their own homes. In a Care of the Elderly setting, "rehabilitation" means getting the patient out of hospital as soon as they can manage in the community, and continuing rehabilitation there. Since most are retired, social rehabilitation may be directed more towards leisure activities than work-related skills.

  Young adults have goals beyond simply managing their basic daily care. They have years ahead in which to reap the benefits of functioning on a higher level. The long term cost benefit of achieving goals such as "independent mobility with an energy-efficient gait pattern" or "return to work" is worth the initial investment in effective rehabilitation. Rehabilitation to optimise function, and may require a range of hi-tech equipment and the skills and facilities of a specialist service—one that is lead by a consultant specialist in Rehabilitation Medicine, usually from a hospital base.

  The current focus on "intermediate care" with emphasis of rehabilitation for the elderly is a step in the right direction, but must not be confused with the need to provide specialist rehabilitation services focussed on the needs of young adults.

1.5  What are "specialist" rehabilitation services?

  A specialist rehabilitation service is one provided by a multi-disciplinary team which includes a consultant specialist in Rehabilitation Medicine, trained in managing the rehabilitation needs of young adults.

  "Specialist" rehabilitation is require at each of the levels described above, although the intensity of medical supervision by a consultant in rehabilitation is greatest in the post-acute/transitional stage. In the acute care stage, care is primarily with the acute medical/surgical team, and at the other end, many community teams are appropriately led by therapists with input from a consultant as required.

1.6  What are complex rehabilitation services?

  The majority of patients with mild to moderate injuries will travel satisfactorily down the path from injury to independence with the help of their local rehab services. A small minority, however, will have particularly severe or complex problems and require the services of a "complex specialist rehabilitation service" to progress (Figure 3). Patient numbers are fortunately small, but costs are high, making these services more suitable for collaborative specialist commissioning.

  A recent London review of neuro-rehabilitation services has been set up to define the more super-specialist level of rehabilitation service which requires specialist collaborative commissioning by more than one Health Authority—the contemporaneous version of the "regional specialist service"—low volume, high cost services for individuals with complex rehabilitation needs beyond the scope of their local and district services.

  In defining complex specialist rehabilitation services, it is important to state that, although a number of these services already exist, they can only do so effectively if supported by a network of services at the other levels, within each district that they serve. Service must collaborate closely to provide co-ordinated care. This document will address how this can be achieved using a "hub and spoke" model.



1.7  Identifying the barriers to the successful development of rehab services

  There are a number of barriers to the successful development of co-ordinated rehabilitation services, these include

Professional boundaries

  Boundaries at many levels conspire to confound effective development of co-ordinated services.

  Bureaucratic and Funding boundaries:

  Prevent patient from accessing the service most appropriate to their needs at any one time.

  Split between different providers

  The current split of service between the acute and community trusts leads to disjointed care and poor support for some of the rehabilitation professionals.

  Division of services into Adult and Care of the Elderly leads to inequality of service.

  Provision of specialist services for certain diagnostic groups can be an efficient way to deliver care, but provision must be made for patients who do not fit into any of the specialised categories.

  Split between health and social services

  Different districts have different arrangements for sharing the burden of continuing care and rehabilitation between health and social services. Much time and effort is wasted in arguing over who is responsible for which part of a single patients care.

Lack of understanding of exactly what specialist rehabilitation is

  Due to lack of exposure to rehabilitation in training curricula, most professionals working in other areas of healthcare have only a hazy idea of what is involved in rehabilitation practice.

Resources

  Resources are tight in the NHS, but are particularly so in this less-well publicised area of care which fails to compete with the pressures on the acute services.

Increasing demand

  Improved acute care such as helicopter evacuation from accidents, and medical/surgical advances mean that more patients survive with severe disability. This trend is likely to continue and we need to plan for greater demand on rehabilitation services not only in terms of numbers, but also in terms of greater complexity and dependency on care.

Lack of suitably trained rehabilitation professionals

  Around the country there are a small number of specialist rehabilitation services providing high quality care and services, but these are insufficient to cope with the number of patients requiring them and their expertise is not used to maximum efficiency.

1.8  Organisation of rehabilitation services

  With the current financial pressures on the NHS, managers face a real crisis in trying to provide quality services on inadequate funding. It is recognised that the overwhelming and immediate pressures on the acute services may easily cause managers to overlook the chronic services. However, it is also clear that the acute agenda will flounder unless the support services are in place to avoid acute beds being blocked by avoidable admissions. The proposals put forward in this strategy therefore aim to provide rehabilitation in a cost-effective manner, which will move patients into the community, but with the level of independent function and support that will keep them there in the long term.

1.9  The Hub and Spoke concept for service management and provision

  We have established that a range of different service is required. However, the number of patients needing each service at any one time is too small to provide all types of service in each district. A collaborative network of services set up across a region or several districts provides cost-efficient care, but to ensure that patients can move easily between them collaborative commissioning arrangements must be in place. A central administration point for the network can provide efficient contracting and management, and hence the evolution of the "hub and spoke" model which is shown to work effectively in the USA and is currently operating in North-West Thames.

  The Hub and Spoke model in this document refers to a concept, rather than a geographic plan set, and may be interpreted at various levels. Services are provided around a central hub or specialist rehab unit. This hub provides a focus for administration, staff support, training and research (Figure 4). Close working links are maintained with outlying parts of the service, eg shared or rotating staff. 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.

  The advantages of the hub and spoke model are:

  1.  Decreasing admin/overheads costs by collecting several different teams together under one roof.

  2.  Achieving critical mass in terms of staff—optimising balance of junior to senior staff, to reduce cost of duplicating senior staff, while maintaining adequate supervision for juniors in the different teams.

  3.  Improved recruitment and retention—staff feel confident and well supported.

  4.  Development of clinical expertise as each team becomes expert in the use of techniques and procedures relevant to their own field of practice.

  5.  Sharing of information and continuity of care between the hospital and community teams by use of common protocols and pathways.

  6.  Cost-effective use of facilities, since services are not duplicated in each district, but smooth referral paths exist to ensure that each patient has access to the services they require and the stage when they need it.

1.10  Development of emergency trauma services

  So how does this model of rehabilitation service fit in with acute head injury services?

  The current proposal for development of emergency services for severe trauma in the UK centres upon key hospitals which are designated as "Major Acute Hospitals" which can offer the full range of acute trauma and neuro-surgical management. For example, London would be divided into five sectors, with a Major Acute Hospital in each.

  An essential part of the model involves shifting patients back out to the more peripheral hospitals as soon as they are medically fit. Satellite or "step-down" hospitals will continue the post-acute care, passing the patient on for transitional rehabilitation as soon as possible, and thence out into the community (Figure 5). It should be noted that intensive rehabilitation facilities require the patient to have reached a certain stage in their recovery. In this model, therefore, they may be best provided in the "step-down" or District General Hospital setting, rather than in the Major Acute Hospital setting.

  Adequate provision of rehab beds (both general and specialist) and outreach services in step-down centres is an essential component to keep patients moving through and avoid a backlog which clogs the system. Patients at this stage may still have need of medical input, investigation, surgical operations etc, so transitional rehab needs to be sited on acute hospital sites. However, they should ideally be housed separately from acute surgical wards, so as to allow sufficient space for equipment and noise, and avoid the need for isolation for MRSA etc.

  The model calls for a change in bed usage within the acute Trust with:

    —  Use of acute beds and facilities for patients who need them only.

    —  Movement as soon as possible to rehab wards emphasising the regaining of independence and proactive discharge planning.

    —  Development of community outreach teams based in centres, but working out in the community to take on continued management of patients as soon as they are ready to live at home.

    —  Improved transport systems to allow patients to be managed on a day- or outpatient basis.


2.  WHAT IS NEEDED NOW?

  Development of effective and cost-efficient rehabilitation services urgently requires the investment of suitable resources, but simply throwing money at it is not the answer. Services must be developed in a properly co-ordinated manner to ensure equitable access to high quality care.

  The Royal College of Physicians' Blue report (1) recommended that "core" rehabilitation services should be provided in every health district, but that for certain low volume complex conditions (head injury included) services should be provided in regional units. As a result a number of regional services were set up across the UK.

  Unfortunately, some of those units took a rather insular approach, providing excellent rehabilitation for those who could access them, but offering nothing to those who fell outside their criteria. With devolution of funding to districts in the 1990s NHS reforms, many health authorities withdrew their funding from regional units to establish their own local teams. Sadly this was no more successful—teams foundered through inability to recruit and retain suitably trained staff. Rehabilitation services were abandoned and resources immediately sucked back into the black hole of acute services. Meanwhile regional services were unable to help—lack of funding and bed closures forced them to function on a fraction of their former capacity.

  In North-West Thames, a regional service was set up in 1992 on rather a different model. The role of the Regional Rehabilitation Unit was not only to provide not only a high quality specialist rehabilitation service, but specifically to act as a central hub and catalyst for the development of local services across the region. Over the past decade, a close network of co-ordinated services has developed with the RRU at its centre providing an interactive outreach advisory service to other services in the region as well as acting as a focus for health services research and training of all professional involved in rehabilitation. Details of this model are given in the Appendix 1.

  We believe that this service model represents a highly efficient use of resources and expertise, and could be re-iterated elsewhere in the UK. The principles are as follows:

    —  Professional expertise is short, so the first priority has to be to maximise the use of existing resources, but in such a way that the service looks outward and integrates with neighbouring facilities. These may include NHS or independent services.

    —  Additional resources are provided to expand the existing specialist rehabilitation facilities to critical mass, but require the demonstration of co-ordinated service planning across a regional or supra-district areas to ensure that a range of networked services is offered. Services should be planned on a hub-and spoke model with a specialist rehabilitation service as the hub.

    —  Specialist rehabilitation units require investment to develop outreach services to share their skills with community teams, nursing homes and general rehabilitation wards and provide support for management of patients with complex rehabilitation needs eg spasticity management, splinting, communication aids etc.

    —  Specialist rehabilitation services sited in acute hospitals need to be ring-fenced from acute services in order to function effectively, but they need to demonstrate liaison with general hospital rehabilitation wards to ensure that those patients requiring specialist rehabilitation are identified and referred appropriately.

    —  Collaborative commissioning arrangements must be in place so that selection of patients for specialist rehabilitation is on the basis of clinical need and not financial expedience.

2.1  Evaluation and effectiveness

  There is now good research evidence for the effectiveness of rehabilitation and evidence for its cost-effectiveness is also accumulating (2). Further Health Services-based research is required to explore the critical components of effective intervention and the means to identify those who have the capacity to gain benefit from rehabilitation programmes.

  In particular, a systematic approach is required to evaluation of outcome from head injury rehabilitation. This is mandatory not only to fulfil the requirements of clinical governance, but to accumulate the knowledge base for what works in routine clinical practice, as opposed to research.

  A variety of validated outcome assessment tools is now available. No one measure is appropriate for all circumstances, but the British Society of Rehabilitation Medicine (BSRM) has developed a "basket" of approved outcome measures which have proven validity and are already in widespread use in the UK. Alongside the use of standardised measures runs the need to tailor rehabilitation programmes to the individual goals of patients and their families. Thos poses a new challenge to outcome measurement in the form of goal-attainment scoring and represents a departure from traditional research techniques.

  The diversity of patient characteristics and rehabilitation approaches further confounds standard research methodologies may require a rather different approach from those used in other areas of medical research. Allocation of R&D monies specifically to research in rehabilitation is urgently required, both to explore these methodologies and to use them to strengthen the evidence base and to determine what represents cost-effective rehabilitation for whom.

2.2  Standards of specialist rehabilitation services

  The British Society of Rehabilitation Medicine has recently published clinical standards for specialist in-patient rehabilitation services (3). Standards for out-patient and community services are also under development.

3.  REFERENCES

  1.  Physical Disability in 1986 and Beyond. Report of the Royal College of Physicians. London 1986.

  2.  "The effectiveness of rehabilitation: a critical evaluation of the evidence." Ed Turner-Stokes, L. Clinical Rehabilitation 1999 Vol 13 Supplement.

  3.  Turner-Stokes L, Williams H, Abraham R. Clinical standards for In-patient rehabilitation Services in the UK. Clinical Rehabilitation 2000; 14:

APPENDIX 1

Current organisation of specialist rehabilitation services in North West Thames

  Rehabilitation services for all ages must span hospital and community. Services are provided on both a specialist and a general level. Figure 6 shows the current provision for specialist rehabilitation services in the North-West Thames area, and indicates how the various specialist functions are divided among the nine rehabilitation consultants in the region. In this network of specialist services, each falls under the management of their separate Trusts, however they collaborate and refer patients from one to another as appropriate.

Regional and Supra-Regional Specialist Rehabilitation Services

  These are summarised in Figure 6.

NORTH WEST LONDON HOSPITALS TRUST (NWLHT)

  The merger of Northwick Park and Central Middlesex Hospitals to form The North-West London Hospital Trust makes this the largest provider of specialist rehabilitation services (both at district and regional level) in North-West Thames.

  The Regional Rehabilitation Unit at Northwick Park was set-up in 1992 with a brief to provide a regional focus for research and training for all professionals involved in rehabilitation and to act as a catalyst for development of specialist district rehabilitation services across the region. Given this background and its central geographical position, NWLHT has formed a natural "hub" for the network of specialist rehabilitation services around it.

Regional Rehabilitation Unit (RRU): Consultants: Dr Lynne Turner-Stokes, Dr Kyaw Nyein

  The RRU provides a supra-regional in-patient services for people aged 16-65 with severe complex neuro-disability. Patients are referred to the RRU from all over the South-East, often direct from neurosurgical units. The acute medical and surgical back-up facilities at Northwick Park are essential to its function. Main diagnoses: Severe stroke, brain injury (traumatic, inflammatory, hypoxic), partial spinal cord injury.

  The RRU provides:

    —  A 26-bed in-patient service.

    —  A tertiary (consultant to consultant) referral centre for Environmental Control Units (ECU), with a demonstration centre for Electro-Assistive Technology (EAT).

    —  An out-reach service which includes:

      —  An advisory service for management and follow-up of patients with severe complex brain injury in North West Thames.

      —  A regional spasticity management service for botulinum toxic/splinting/specialist orthotics.

      —  Inter-disciplinary home-based rehabilitation for patients with complex brain injury in transition between hospital and home.

  The RRU also acts as a re1ional focus for research and training for all profession involved in rehabilitation.


Disablement Services Centre (DSC). Dr Linda Marks, Dr Rajiv Hanspal

  The DSC provides

  a regional service in indoor/outdoor electric wheelchairs, special seating and supra-district and regional services in prosthetics/amputee rehabilitation.

  For historical reasons the DSC is currently located off-site from NWLHT and is dislocated from the rest of the regional service. A bid has been submitted to relocate in at Northwick Park, which is essential for proper co-ordination of services.

ROYAL NATIONAL ORTHOPAEDIC HOSPITAL

Spinal Injury Unit—Dr Fred Middleton

  A supra-regional service for acute and ongoing management of spinal cord injuries.

Pain Management—Dr Joseph Cowan, Dr Fred Middleton

  Integrated team providing cognitive behavioural rehabilitation for patients with chronic pain. Also a specialist service for diagnosis and management of brachial plexus injuries.

EDGWARE COMMUNITY HOSPITAL

Brain Injury Rehabilitation Unit (BIRU)—Dr Simon Fleminger

  A regional service for management of diffuse brain injury—the walking wounded patient with cognitive and behavioural problems, but without major physical deficits. Patients referred here from the RRU when their physical impairments have largely resolved, but they require ongoing cognitive rehabilitation. Likewise, BIRU passes patients to the RRU who have physical deficits that they cannot handle.

HILLINGDON HOSPITAL

Electronic Assistive Technology (EAT) service—Dr Rajiv Hanspal

  Regional centre for co-ordination of environmental control units and electronic assistive technology (EAT) in North West Thames.

ROYAL HOSPITAL FOR NEURO-DISABILITY, PUTNEY

  Not sited in North West Thames, the Royal Hospital is an independent provider which forms an important part of the network of rehabilitation services provided in North West Thames. In particular, the following services fill gaps in NW Thames provision.

  PVS unit—for management of people in vegetative or minimally responsive states

  Behavioural unit—for brain injured patients with severe behavioural problems

  Transitional unit—for patients in the South end of the region who require more time and monitoring to make the transition to living in the community

DISTRICT AND SUPRA-DISTRICT SERVICES: IN-PATIENT SPECIALIST REHAB SERVICES

HILLINGDON HOSPITAL

Alderbourne Rehabilitation Unit—Dr Rajiv Hanspal

  A supra-district service—16 bedded in-patient unit and outpatient facilities, providing district-based rehabilitation for patients with stoke, MS etc. Also takes on slower-stream patients referred from the RRU.

  Four additional beds for PVS/minimally responsive patients.

WILLESDEN COMMUNITY HOSPITAL

Younger Disabled Unit—Dr Kyra Williams

  A supra-district service for Brent and Harrow providing in-patient slow-stream rehab for patients with chronic disability and progressive disorders (16 beds).

  The unit provides a region-wide service for phenol blockade for the management of severe lower limb spasticity in end-stage MS and similar conditions.

DISTRICT AND SUPRA-DISTRICT COMMUNITY/OUT-PATIENT SPECIALIST SERVICES

NORTH WEST LONDON HOSPITALS TRUST

Harrow Physical Disability Support Team—Dr Andrew Frank

  A multi-disciplinary community team with base office at Northwick Park, provides home-based support for young patients with physical and complex disabilities in Harrow.

WILLESDEN COMMUNITY HOSPITAL

Independent Living Team—Dr Kyra Williams

  Independent Living Team, based at WCH, acts as a community outreach team facilitating discharges and smoothing community re-integration for patients living in the Brent area.

Links with local rehabilitation services

  Figures 7 and 8 respectively show how these services inter-relate with the RRU to provide out-patient and community rehabilitation and continuing care/maintenance rehabilitation for patients with very severe disability or in minimally responsive states.

Specialist services are highlighted in bold.



OVERALL ASSESSMENT OF PROVISION

  In general, North West Thames fields a good range of rehabilitation spanning from hospital to community. There is good net-working between regionally provided and more locally-based services with smooth links for referral and timely funding arrangements. There are however some notable gaps, and some areas where some re-arrangement is required for maximum benefit and efficiency.

GAPS

Vocational rehabilitation

  There is no dedicated service for vocational rehabilitation in North West Thames. Selected patients are referred to Papworth, Cambridgeshire (low level) or to Rehab UK (higher level) but these services can take on only a small minority.

Sufficient beds for severe complex disability

  Although the RRU nominally has 26 beds for severe complex disability, progressive cuts in funding have impacted on the nursing team leading to bed closures. For most of 1999-2000, the unit has operated on 22 beds, with a stratified waiting list to match case-mix to staff availability. Other units in London have tended to do the same, with the result that the waiting list for the most heavily dependent patients has gone up.

  Since these patients cannot be managed in the community, they lie neglected in side-rooms on acute hospital wards acquiring contractures, pressure sores, malnutrition, and other sequelae of neglect which add months to their rehabilitation length of stay when they eventually get there, and often have major long term consequences for dependency and continuing care needs—not to say quality of life.

  The RRU is uniquely placed to take on these difficult cases. Based in a DGH it has the acute medical back-up, the facilities and the staff expertise to cope with the demands of this group. A bid is currently in with the purchasing consortium to increase the proportion of high-dependency beds from four-five to eight-nine, to cater with the increased load on the waiting list.

Isolation of the DSC

  The regional Special Seating and EPIOC services are already identified for collaborative commissioning. They are managed by NWLHT are currently located off site. The physical isolation and poor transport facilities of this site hit particularly hard at this group of patients who, by definition, have limited mobility. The level of inaccessibility is no longer permissible under the Disability Act. A bid is underway to move the DSC to Northwick Park, which would improve not only collaborative working between the services, but would also lead to long-term efficiency savings.

Training and research

  The RRU has been a designated central focus for research and training of all disciplines involved in rehabilitation since its inception in 1992. The widespread, co-ordinated rehab services in North West Thames makes this an ideal ground for health service research in rehabilitation. Explorations are underway to develop appropriate affiliation and formalised academic links.


 
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