Cotswold Care is an independent hospice founded in 1990 to serve the southern part of Gloucestershire—a population of over 200,000 inhabitants in a mainly rural area, with the towns of Stroud and Cirencester as major centres.

  The hospice provides day care, hospice at home service, outpatient and complementary therapies, and a family support service which includes counselling to patients and their families and bereavement counselling. We also provide education and training to the community—primary health care teams, nursing homes, community hospitals and social services—and a strong forum for network working within the palliative care field, for both generalist and specialist services.

  We would like to submit our following comments and suggestions to the Parliamentary Inquiry on Palliative Care:

  1.  Palliative Care is still viewed as a sub-section of Cancer Care Services, despite the broader definition put forward by the World Health Organisation and adopted by the Department of Health. The NICE guidelines support the latter and we would suggest that Palliative and Supportive Care is given greater prominence in its own right, to reflect the work done by independent hospices for example. In the first instance we would suggest that palliative care is listed as a service in the listing on the Department of Health website—and not under "Cancer" as it is now.

  2.  We would like to outline the lack of community resources, both health and social, which impacts on the implementation of the NICE Guidelines for services provided nearer to patients' homes and which seriously restricts patients choice—including place of death. It is our view that too much emphasis is given to the acute services and to consultant-led services, without due recognition to services provided by generalist and specialist palliative care services outside an acute setting. We would suggest that the Health Committee reviews the national and local palliative care strategies and funding arrangements, to ensure that priority is given to community services.

  3.  The current definition of "specialist" palliative care services is restricted to services which have a regular input from a consultant. Notwithstanding the scarcity of consultants around the country this definition does not appear to recognise the expertise and skills of people working in the field—and who have therefore developed their own specialist skills. We would therefore suggest that the Inquiry looks into a fairer access to consultant time for all services, whilst at the same time re-visits the definition of a "specialist" service.

  4.  There appears to be "Cinderella" services within palliative care and we would suggest that the Inquiry looks into services such as lymphoedema services in the community.

  5.  Specialist palliative care services, including hospices, provide comprehensive training and education programmes which support all health and social services in the provision of palliative care. However these programmes are severely compromised by the lack of resources to release staff to attend and the lack of funding in some instances to enrol on these programmes. As a result staff's knowledge and skills in palliative care are eroded and this may have a direct impact on inappropriate admissions to hospitals. We would suggest that the whole issue of education and training is looked at as a priority by the Workforce Confederations independently, to help co-ordinate a more strategic approach.

  6.  As a charity the hospice is faced with an ever increasing amount of regulation which are onerous, both in terms of finances and human resources. Whilst we welcomed the National Minimum Standards for Independent Health published by the Secretary of State, the additional administrative burden created by the National Care Standards Commission (NCSC)'s inspection process could have been avoided by a more timely and sensitive approach. Hospices have had to produce policies regulating every aspect of their work, in some cases for the sole purpose of "ticking the box" when the inspection took place. Hospices who adopted their local NHS policies have in some cases been penalised as the NHS policies were judged as out of date by the inspectors. At the same time NHS palliative care services—or general services providing palliative care—do not seem to have been subjected to the same scrutiny of a care standards inspection. We would suggest a partnership approach in the future, when statutory and voluntary organisations can work together, within an agreed framework, towards meeting national standards and regulations.

  7.  The registration cost to various bodies is becoming a burden to small charities, £1,000 and over per annum for the NCSC and a suggested cost of £300 for registration to the Criminal Records Bureau—remembering our obligations to maintain the professional registrations of our clinicians. We would suggest that registration fees are waived for charitable, not-for-profit organisations as they already contribute to the wealth of the community by providing a free service to patients and their families and subsidise indirectly the National Health Service.

  8.  The statutory funding of hospices remains un-equitable throughout the country and does not appear to be based on any "scientific" or planned approach. The position adopted by this hospice is that we would not seek funding from the NHS above the 30% mark—our current funding is 19%—as a higher level of funding would jeopardise our independent status. However it is unacceptable that access to statutory funding is made so difficult by late notification of funding available, complexity of application forms, necessity of local NHS services' approval (when they might themselves be competing for the same funding with little, if any, inclination to work in partnership with the voluntary providers). We would suggest that the Health Committee looks at the funding process for palliative care services, ensuring a fair and equitable access to all funding made available centrally. The Committee should remember that the local NHS Trusts are both providers and commissioners of services in most instances, hence in a difficult situation to make objective decisions on the distribution of scarce resources.

  9.  Our final comment concerns the understanding of the term "partnership" at the local level. Whilst we appear to be able to develop excellent partnership/collaborative work at the operational level—with GPs, district nurses, front line managers—the partnership remains no more than wishful thinking once we reach the levels of decision making, funding allocation and strategy development. Partnership does not work when we come to competing for scarce resources and we would refer to our comments above with regards to health authorities which are both commissioners and providers of services. We are aware that the degree of partnership/collaborative working may vary from health authority to health authority, but unless it is ingrained into the day to day thinking/working of the National Health Service (or any other statutory agency, as suggested by the Government's Compact) the palliative care agenda will remain driven by the NHS—and in most instances by the acute, consultant-led interests—to the detriment of a more holistic approach to the delivery of care. We would suggest that the Inquiry looks at the way partnerships are forged at the local level, the composition of Network Boards for example, and the degree of partnership/collaborative working at the decision making level. We would further suggest that the Health Committee looks at issuing clear guidelines on expected standards in partnership/collaborative working—and establish the means to monitor this working.

20 February 2004