Select Committee on Health Written Evidence


Memorandum by Dr M Cusden (PC 68)

  I am the Medical Director of an 18-bed independent Hospice, which is part of the Mid Anglia Cancer Network. I am also Chairman of the Network Palliative Care Strategy Group.

  There have been a number of recurrent issues affecting both our Hospice and the Cancer Network in general.

  All three Hospices within our Cancer Network are independent Hospices, and do have a certain amount of control over palliative care development, albeit within the available funds. However, a number of issues are completely outside our control, but are extremely important for our patients.

  There appears to be a serious crisis in the provision of social care. Patients at home, in Hospices and in Hospitals are waiting for unacceptable periods both for Social Services assessments and for a placement of carers within their homes. These delays can be several weeks and, where patients have a very short prognosis, such delays are unacceptable as they often prevent the patient being discharged home or may lead to unnecessary admission. For those patients who are in the very terminal phase, (prognosis one to two weeks), healthcare staff will "pull out all the stops" in order to supplement the social care. Primary Care Services are already stretched considerably, and their resources would not allow them to provide these exceptional levels of care for more than a week or so at a time.

  The underlying reasons for difficulties in accessing care at home are many. There is clearly both a staffing and funding crisis within Social Services, and this has been the experience throughout our Cancer Network. There are serious problems in recruiting carers, partly because of the poor remuneration, but also because of poor conditions of service including lack of travel expenses.

  Within our Cancer Network, we are trying to overcome some of these difficulties by instituting carer schemes. In the East Suffolk area, we are planning to make more use of Marie Curie Nursing Services, and other areas within the Network have set up different schemes.

  This of course adds to fragmentation of services and may be diverting charitable funds to services which should be statutorily provided.

  I am also concerned about the large numbers of patients who are not linked in with specialist palliative care services, who suffer from strokes and other medical conditions requiring high levels of care at home, who are unlikely to benefit from local palliative care initiatives.

  The second major deficit in care which is outside the control of specialist palliative care, is that of long-term institutional care. With the increasing age of the population, longer survival with cancer and changes in family size and structure, there will always be a substantial minority of patients who will require long-term institutional care because of their medical condition, whether this be cancer or other diseases. The NHS has a responsibility to provide continuing care for patients whose health needs are judged to require it, but provision of continuing care is very patchy throughout the Country, and criteria vary widely. In East Suffolk, there are no designated continuing care beds for palliative care. We can occasionally access Care of the Elderly continuing care beds. As a result, either patients have to pay for Nursing Home care when they should not have to do so, or they cannot get a long-term care bed and may have to stay in Hospital or in a Hospice. The situation has been exacerbated by nursing home closures and lack of Social Services funding. There is a particular problem for those patients who are young and unable to be looked after at home. Most Nursing Homes are registered for care of the elderly rather than palliative care, which is generally more expensive to provide in terms of staffing and equipment costs.

  Workforce remains a large problem within palliative care. The number of trainees qualified to be Consultants in palliative medicine will not meet demand for several years. Although central funding was made available for specialist Registrars through the Deaneries, because of increasing demand, the situation has partially reverted to what was happening before, ie training numbers are being made available, but without any funding. For charitable Hospices to provide funding for training posts, which are at least theoretically supernumery, is not a good use of charitable funds.

  There are supply and retention issues with many other members of the workforce, including nursing and particularly occupational therapists and physiotherapists. Many independent Hospices, because they are small organisations in comparison with Trusts, continue to provide terms and conditions for staff which are very different from those available within NHS Trusts. For example, many Hospices use different pay scales, and there are many variations in entitlement to study leave, holiday leave, sick pay and maternity leave. Also, the fact that independent Hospices are outside the NHS, means that while staff entering these Hospices from NHS posts can continue to contribute to the NHS Superannuation Scheme, other Hospice staff need to make private arrangements. All of these factors may contribute to the difficulties in recruiting and retaining employees. Consultants who are employed in the Voluntary Sector rather than by the NHS find it very difficult to access discretionary points and distinction awards, as this money is distributed through NHS Trusts and not available to non-NHS employees, even though many of these Doctors spend all their time treating NHS patients.

  I am very pleased that progress has been made in the area of information technology. Hospices are gradually becoming part of the NHS net, although this has been quite a slow process. However, the introduction of electronic patient records seems as distant a prospect as ever.

  The £50 million made available nationally for specialist palliative care since last year has been very welcome and has led to significant improvements in service development. However, because of historical funding deficits, there is still considerable inequity. The Hospice in which I work is fortunate to receive approximately 40% funding, but one other Hospice within our Network is still receiving less than 30%. Although I am not directly involved with paediatric palliative care, I am very much aware of the much smaller NHS funding contributions to Children's Hospices, and I presume you will be receiving submissions from Children's Hospices.

  Overall, it is my experiences that independent Hospices are working much closer with the NHS than before the introduction of the National Cancer Plan, Cancer Networks etc. However, this often depends on local relationships rather than any national framework and, inevitably, this will lead to inequities. Working relationships with Social Services are severely hampered mainly because of inadequate resourcing of Social Services and the difficulties created by the artificial division between health and social care.

July 2003

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