Select Committee on Health Appendices to the Minutes of Evidence


Memorandum by Leonard Cheshire (H20)

  Leonard Cheshire is a leading charity provider of care, providing 150 services in the United Kingdom alone. Since 1990 Leonard Cheshire has specialised in the provision of community based rehabilitation for people with Acquired Brain Injury. The resources and expertise for this client group has grown with the opportunities available through working in partnership with other agencies, particularly Social Services, providing up to 80 per cent of our clients funding, Headway, the NHS and Rehab UK. Our recent initiatives include setting up the UK ABI Forum and Workability.

  We are aware that some of our concerns will be written as part of the replies from these groups though as Leonard Cheshire's commitment to the care of this client group has grown with the appointment of their own National Advisor on Acquired Brain Injury, it is most important that the following points be raised:

  1.  Acute rehabilitation developments—NHS. This continues to be patchy and very individualised in each area. Only a few have involved multi agencies in the strategic planning for these service developments. "Best Value" therefore cannot be achieved.

    1(a)  There is duplication of some acute rehabilitation services and no resources for the ongoing needs of repatriation following out of area treatments (OAT's) in the specialised neuro units throughout the United Kingdom.

    1(b)  None or few of the resources are invested for community living rehabilitation, care at home or return to work. Hence the area of development by Leonard Cheshire.

  The NHS and Health Authority solutions are therefore short term and in the long term the expertise of the acute rehabilitation they have invested in is wasted and forgotten due to no follow up rehabilitation/care. It is most important that the Community services for Brain injured clients are developed at the same pace as the Acute NHS rehabilitation.

    1(c)  PCG and PCT representation is rare, sometimes through lack of planning by the local Health Authority purchasers, at other times due to the PCG not sending a representative. On enquiry as to the reason for non-attendance, some GP's state that this client groups care is too expensive for them to deal with and have quoted how else their funds can be spent, eg many hip replacements can be done for the same expenditure. In these cases, consultation has either ceased or has been done by post—with records of only 20 per cent replies before HA decision on re-allocation of funds.

  If the resources for commissioning of services for this client group are to be community based within the PGC's and PCT's, which appears to be the trend, then they must take specialist advise from all providers, not just the local NHS hospital Trust, as they cannot make informed decisions and choices without this type of input.

  2.  Joint working—NHS, DHSS with voluntary bodies. Leonard Cheshire has 21 cases of spent research, papers for cases of need etc and development initiatives within the last 12 months.

    2(a)  In the majority of these cases the local NHS Trusts have not worked jointly with Leonard Cheshire following presentations of data for ABI cases of need or, have initiated research which Leonard Cheshire development team have taken up and then they have ceased to communicate or action, thereby Leonard Cheshire has lost monies but more importantly, specialised resources.

    2(b)  It is against all guidelines for allocation of resources, new service development initiatives, NICE and the National Service framework recommendations, to duplicate services; raise services without joint working considerations on onward placements and their funding. This raises many disagreements and a huge strain on the Continuing Health Care NHS monies or the Continuing Care Social Services monies. Often treatment is delayed through the non-agreement to fund further rehabilitation once a person has passed the recovery stage of rehabilitation.

  Effective Guidelines are needed for working a joint funding criteria between Health and Social Services for this particular group of Brain injured clients. Strong Guidelines and recommendations are also needed to involve voluntary/charity services that specialise in this area, so relieving the burden of actual service delivery.

  3.  Social Services and Care Management struggle to find competent care agencies to take on the necessary care at home for this client group. There are many failures as agencies that place the lowest bid are given the task of care. There are cases of no or ineffectual support by social services care management who themselves do not have managers with the necessary knowledge to understand and therefore support this client group.

    3(a)  The SS care management departments are equally frustrated that there are very few agencies that are competent in the specialised care of the brain injured client at home. Many agencies provide young or inexperienced carers who cannot cope with the challenges they are faced with in the delivery of care to the brain injured client. The carer is unsupported through training or reference to specialist advice. Many carers leave and packages fail.

    3(b)  This break down can result in the client being cared for by an ill prepared family or, and when this breaks down, the client being placed in a nursing or residential home. These placements are over 70 per cent inappropriate, as in many areas the only available resources are elderly residential or nursing home. Leonard Cheshire has provision for specialist residential care for this client group and access to training for all carers working with brain injured clients. But the services have to bear the cost of this specialised training.

  It is recommended that financial provision for specialised training by any care agencies taking on the care of brain injured clients, be a compulsory factor in the bids/tender.

  Thus Social Services and other purchasers can establish a realistic cost for a package of care that truly benefits the long-term results of rehabilitation for these clients. At this point it is easy to hypothesise that this will place an additional cost to the bids. However, with careful working of the VAT and other similar ring-fenced monies, the additional cost could be minimal.

  To conclude, rehabilitation services for brain injured people are not available to all who would benefit. The development of services is going ahead in the acute area of rehab, promoted by the Medical Consultant led regional neuroscience services or rehabilitation services (as interpreted through the recommendations of the working party paper—Management of patients with Head injury, June 1999).

  There is little collaboration though much is lip services only, with non-statutory sectors and this cannot help but lead to the medical rehabilitation bias. It is well researched that this client group has continuing needs that benefit most from a community based rehabilitation programme in a social model of care. In many cases throughout the world, teams are therapy led, or have specialised advisors for trained carers who implement care up to and including a return to employment or return to education.

  Leonard Cheshire continue to work hard as an organisation to promote the needs of this client group to all agencies though the responses by some statutory bodies has been slow or disappointing and we feel that action on our highlighted statements would be beneficial to service provision as a whole.

February 2001

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