Select Committee on Health Appendices to the Minutes of Evidence


Memorandum by Mr Mark Holloway (H3)

  This information is submitted by the Acquired Brain Injury Co-ordinator for East Sussex a post funded by Joint Finance and based within Headway Hurstwood Park a Day and Outreach service covering Sussex. I have been in post for two years and work across the County (pop 750,000) aiming to assist individuals access appropriate services, inform providers of short comings and collate information. Since taking up the post I have had 270 people with an acquired brain injury referred to me. My remit is broader than traumatic injury alone as it includes insult to the brain caused by sub-arachnoid haemorrahage, meningitis, encephalitis and hypoxia. These non-traumatic injuries present with very similar sequelae and hence it was felt by my employers and the funders that their inclusion is vital.

  Prior to taking up this post I have worked with brain injured people for over ten years in a variety of settings and locations and am happy to provide the Health Select Committee with further evidence, either in writing or in person, of the need for thought out change. I am a qualified Social Worker and initially began working with brain injured adults in a residential setting. The advent of Community Care prompted the Local Authority to close this unit and open community supported living projects. I worked alongside a small group of brain injured people in the new unit facilitating community reintegration. It was in this setting I first began to understand the complex nature of brain injury and the disjointed and chaotic manner in which it was responded to. I later left to manage a voluntary sector advocacy project where I continued to have contact with a sizeable number of brain injured adults and their families all of whom were struggling with the services as much as with the injury itself. The following comments reflect the experience of working with over five hundred brain-injured people.


  1.  Enact the Royal College of Surgeons June 1999 report in to the management of patients with Head Injuries.

  2.  Consider rehabilitation as a whole from hospital bed to, where possible, community/work reintegration.

  3.  Recognise that inadequate long-term care prevents positive change and promotes the entrenching of negative behaviour. Recovery from brain injury is a process that requires management, it is not a position of stasis.

  4.  Pool Health and Social Services budgets for the provision of rehabilitation and longer term residential and community support.

  5.  Recognise that current practice in terms of moving people through the system from intensive care to home is inadequately managed and there are other models of good practices.


  1.  The very definition of rehabilitation is central to the difficulties faced by brain-injured people and their relatives. By having too narrow a definition and considering rehabilitation to be solely hospital/building based the whole concept of returning to community functioning is missed. Lack of access to appropriate community rehabilitation requires some people to unnecessarily access inpatient rehab, some to receive no rehab and does not permit rehabilitative principles to be carried over from the inpatient setting to the community. This can create circumstances whereby functional gains made in a rehab setting are not carried over and services working in the community are not given the opportunity to learn and work appropriately.

  2.  The very nature of brain injury with its varied and complex sequelae is also central to the difficulties experienced by brain injury survivors, their relatives, carers and those of us who work in this field. In times when it is necessary to fight for any services, lack of initiation, memory problems and motivational difficulties are often wrongly ascribed as an unwillingness to engage with services.

  3.  Once the acute phase following brain injury has finished there is no overall co-ordination of rehabilitative services leading to inappropriate discharge, patients remaining in acute beds or use of other inadequate or inappropriate resources.

  4.  The number of different possible funding organisations can lead to no one body taking responsibility for an individual, assessing their needs and accessing services as appropriate. The current situation could be described as the antithesis of seamless. Currently brain injured patients, post surgery, are scattered around the County to areas of inexpertise. No care pathway has been defined to help move patients through a system, they end up in an environment that is unable to make adequate assessments of need and discussions as to whether a patients fits Health or Social Care will dominate. Acceptance of the Royal College of Surgeons report and a pooling of budgets would prevent this from occurring.

  5.  Within a General Hospital no individual, with power, is given the brief of taking brain-injured patients through the system.

  6.  General Hospital staff are ill equipped and trained to take care of and assess patients with an acquired brain injury. Inappropriate discharges can take place, particularly in the case of the ambulant patient who is able to vocalise. Psychiatrists are often ill equipped to make assessments of brain injured people and their ability to consent to placing themselves and others at risk.

  7.  The local NHS resource for rehabilitation is chronically under funded and ill equipped to deal with many brain-injured patients. It needs to be recognised that the needs of brain injured patients for rehabilitation differ from those with degenerative neurological conditions, amputations etc. The British Society of Rehabilitation Medicine published a report in July 1998 outlining the levels of the various therapy inputs needed for adequate brain injury rehabilitation. Inpatient rehabilitation without access to community rehabilitation is inefficient.

  8.  Patients deemed unsuitable for the local NHS rehabilitation unit may spend many months in an acute setting whilst funding is sought for a rehabilitative one. In one General Hospital in East Sussex 16 patients alone accounted for 1,638 bed days in an 18 month period. At costings of approximately £400 per bed per day this is equivalent to an expenditure of £650,000 in an 18 month period for one hospital alone. (Statistics collated by the East Sussex Acquired Brain Injury Co-ordinator)

  9.  Services purchased under the auspices of Continuing Care budget are difficult to access, appear to be granted (or not) without rigorous justification and are subject to ending without regard to clinical need. The Health Authority's process of decision making is not an open one. This leads to feelings of distrust between Health, Social Services and families, creating a siege mentality.

  10.  Community Rehabilitation across the County is either non-existent, will not accept brain injured patients, has no psychology input or is over stretched.

  11.  The outpatient Neuropsychology services is chronically over stretched. There are quite simply more people requiring assessments and support than there is time for the valuable Neuropsychology service.

  12.  Social Services are unable to make adequate assessments of people with an acquired brain injury and are constantly in dispute with the Health Authority as to who is responsible for funding specialist slow stream residential placements. In one part of the County Social Services has unilaterally removed it's input when it perceives a person's needs are predominantly Health related. Generally speaking Social Services are requested to become involved at the hospital or rehab unit when a person is at the point of being ready for discharge. They are then asked to take responsibility for some extremely expensive long term placements/services. It is therefore rather obvious that this process will be characterised by delay as the budget for adult services is inadequate.

  13.  As brain injury is a process it is ill served by current Social Work practice, which is based much more on a facilitative and reactive model of care and assessment. Timely, adequate and appropriate support can ensure that this process of change is one characterised by increased independence and community involvement. It can quite simply be a question of doing things with people and not for them. For example it may take six months to assist someone to learn how to plan and enact a suitable food shopping regime; the alternative is to do it for them for the rest of their lives. It requires a proactive and planned response, it is not worthwhile applying models of care suitable for spinally injured people. If your difficulties revolve around loss of memory, planning skills and difficulties with initiation you will need guiding towards appropriate constructive activity that will enable you to develop and become less dependent on services. Many services purchased for people with physical impairments are wholly inadequate to meet the specific cognitive and behavioural difficulties faced by people with an acquired brain injury. People may not need someone to vacuum for them, they may just need reminding to do it. Frequently these services are then rejected by the brain-injured person who then has no contact with any service.

  14.  Many Social Workers respond to the client's perception of their needs, which is often inaccurate and understated. I am still experiencing instances where highly dependent people are reporting to Social Workers that they do not need help and this information is accepted as if it was accurate.

  15.  The raising of eligibility criteria, charging for services and the practice of early case closure also negatively impacts upon this client group.

  16.  It needs to be recognised that failure to provide suitable rehabilitation (inpatient and community) and inadequate access to appropriate slow stream/community services enables poor patterns of behaviour to develop and become entrenched by a brain injury survivor. This is not an efficient use of services in the longer term and places strain on other budgets such as mental health, homelessness, police, probation, prison etc.


  It is therefore imperative that change takes place to the current system. I would respectfully suggest the following.

  1.  The Royal College of Surgeons June 1999 report calls for brain injured people not to be left outside of Neuro setting, even those not requiring surgery. This allows for expertise to develop and rational criteria formed for accessing rehabilitation services. The Royal College clearly states that maintenance of the status quo is not acceptable.

  2.  Rehabilitation, as a whole, requires consideration for all eventualities including states of low awareness, behavioural agitation, physical impairments, community reintegration employment etc. There is little point providing inpatient rehabilitation for certain people, outside of their own environment, and expecting them to transfer this to their home setting. The cost effectiveness of rehabilitation is difficult to define and the tools used to measure it must not be too blunt or set within a medicalised framework. Rehabilitation is about the return to or maintenance of some form of social functioning.

  3.  It needs to be recognised that provision of slow stream services show their efficiency in two ways, firstly by improvements to functioning but also by prevention of deterioration. Most frequently private organisations and charities successfully perform this role.

  4.  The artificial divide between Health and Social Care needs exacerbates the very real difficulties presented by brain injury and can cause a range of problems. Some of these problems would be cost neutral to resolve, for example over use of beds in an acute setting against an increase in funding of rehabilitation beds. If ever there was a case for pooling of budgets it surely has to be for those with an acquired brain injury. The current system promotes inefficient use of scant resources, encourages agencies to try to devolve themselves of responsibility and creates a climate of short-termism and distrust. In Canada the Toronto Acquired Brain Injury Network has gone a long way to overcome some of these difficulties and in Britain budget pooling has worked for other groups.

  5.  Responsiblity for key-working a brain-injured person through the system from the point of intensive care to successful community reintegration would assist with the process of rehabilitation. The Nottingham Traumatic Brain Injury Service does this with some great success and has managed to reinvest some insurance payment money back in to the system. It is not possible to perform this role with too many people on a caseload.

  I hope this submission is helpful and, as previously stated, am more than happy to provide further and more detailed information if requested.

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