Xanthe Couture reports back on Palliative and End of Life Care: funding, commissioning and patient experience

Yesterday I attended the Westminster Health Forum’s Palliative and End of Life Care: funding, commissioning and patient experience. A range of speakers from the health and social care sector shared their views on the future of delivering palliative care in the UK. While some disagreement about multi-disciplinary teams existed, all participants agreed that training in end of life care needs to be improved, hospices need to play a bigger role, and all local providers should become familiar and engage with the new clinical commissioning groups (CCGs) to best preserve their roles.

Key points included:

  • Although already being drawn into the clinical commissioning role, the GP is a critical provider in palliative care.
  • Palliative care services cannot be considered end of care unless the service is 24/7. It cannot be 9 to 5, which is the case in many places.
  • Hospices should work more closely with Local Authorities to fill gaps in the palliative care system in a more timely manner.
  • Education institutions are aware of the problem in regards of a lack of palliative health care education in nursing education.
  • CCGs are very new, at some point there will be national standards set and palliative care will be listed as a locally maintained standard.
  • Palliative care needs standards. In Wales the system operates under 24 hours for urgent requests and 48 for non-urgent.
  • There is an All Parliamentary Group Meeting on Hospice and Palliative Care to be held on the 20th March, at 1pm. All are welcome to attend.

Sir Thomas Hughes-Hallet, who is the Chairman of the Palliative Care Funding Review, explained the review will ensure sustainable funding for palliative care in the future.

  • There are now 8 pilot sites, involving 93 organisations across the NHS, across the social care and voluntary sector where both adults and children will be studied to help the Government develop a fairer funding system for palliative care.
  • The pilot began in April 2012 and will run for 2 years at a cost of £1.8 million. The aim of this pilot is to have a new funding system in place by 2015.
  • Remarks of interest from Hughes-Hallet included that “more health care is not necessarily better care.”
  • He worried that there is a danger of multiple disciplinary teams that can withhold patient information, he also said the State should not be expected to provide support beyond clinical support (E.g. bereavement tariff, information and advice, play therapy, etc).
  • There is a vast variance in spending by Primary Care Trusts (PCT’s), one PCT reportedly spending .2 million while another spent 20 million, thus there is real inequity in the system.
  • Overall, there are still not enough people receiving palliative care. Statistics suggest 92,000 people in the UK are not being identified and dying without support and several speakers referred to this number.
  • The cost of social care is rising, and the system as is currently not sustainable in both the human and economic resources needed.
  • When asked, Hughes-Hallet stated he “worries desperately” about tendering as it means that all the local knowledge goes out the window. He advised that providers in the audience need to talk to their MPs and “cosy up to the commissioners”.

Catherine Davis, who is the Programme Lead on Palliative Care Funding at the Department of Heath discussed the pilot project and stated that “it is very complicated” and “very early days”.

  • The team has only started collecting information recently and will be collecting until March 2014. This information, once collected will also be given to the NHS commissioning system and we have to make sure this happens smoothly.

Dr Bruce Pollington the Medical Director at the Heart of Kent Hospice Maidstone is a hospice part of the pilot project, and outlined the research being conducted.

  • Dr Pollington stated individual patient data is being weighed against staff and activity costs to outline the actual spend on staff for each patient. The goal is to identify the actual cost of service Then identify the circumstances and factors which are affecting costs.
  • 170 data items are being collected across professional groups and care settings, which all have varying working practices, resources, access and experience.

Karen Taylor, the Director of the UK Centre for Health Solutions Deloitte explained NHS providers are now expected to provide the same quality for less.

  • She noted the UK has an increasing population of frail and elderly people, with the number of deaths increasing.
  • Taylor noted there are more deaths being supported in the community, which can lead to a reduction in acute admissions. To date, over the 2010-2011 there has been a ten per cent reduction, saving £52 million.
  • Tele-health and tele-care are ‘frontiers’ for service that should be explored to help people discharge quickly from the hospital. Doctors play an important role in palliative care and will continue to play a big role in the future.

Jonathan Ellis, Director of Public Policy and Parliamentary Affairs at Help the Hospices stated there is little or no funding from local councils for hospices with wide variation, but the situation varies greatly across the country.

  • Ellis said there is an erosion of funding support and increasing restrictions on NHS funded patient transport services, and a lack of variety on funding education and training.
  • Ellis said we need a true partnership between hospices, the NHS, and local councils to minimise the risk of regulatory burden and make end of life care a sustained priority at the national, regional and local level.
  • Integrated care may be the answer. The GP is critical as a provider and end of care life provision can work 9-5, it has be 24/7.
  • Hospices should work more closely with local authorities to make early moves to fill gaps in the system.

Cieran Devane, the Chief Executive of MacMillian Cancer Support and Non-Executive Director of the NHS Commissioning Board Authority explained that hospices must be very involved in CCGs.

  • He noted that while the Social Care White Paper may have recommendations, the reality, is that we need the voice of carers and patients, along with the clinicians in order to get the best solutions.
  • Devane said we need to break barriers between specialists and generalists and if the current system remains as is, we will bankrupt it.

Professor Mayur Lakhani, Chairman of the Council for Palliative Care and Chair and Dying Matters Coalition, agreed that the system is broken and believes that the 92,000 who are not receiving care is under estimated and stated “fragmentation is the scourge of modern politics”.

  • Health inequalities are rife and while hospices offer a good standard of care they only cater to a minority of deaths.
  • Step 1 and step 2 matter the most in commissioning services which are identifying and assessing the services needed.
  • CCGs are finding it hard to manage providers and morale is low.
  • He suggested that GP registers are created and advance care planning is introduced so all services providers are working on a common plan.
  • There has been a rise in consultants, but we need to work together with them.  GP numbers are not rising. We need more generalist community nurses and GPs. GPs should be leaders of CCGs, practice, clinicians, undertake new strategies for dementia as well as end of life care. For this to happen, we need 10,000 more GPs.
  • He reminded the audience to remember Dying Matters Week, May 13th – 19th, which wants to build an open dialogue with the public and media about end of life care.

Deborah Murphy, Associate Director, Marie Curie Palliative Care Institute Liverpool discussed key themes that emerged from consultation on end of life care including concerns over communication, nutrition, sedation, poor quality care, and hydration.

  • She states that now is a very good time to fix the system as it has the public’s attention.
  • Murphy advised that education and training are not mandatory in end of life care, but this leads to the examples we see of bad care. We need better funding streams, training, and 24/7 care adding that currently only 20 per cent of the end of life care services provide 24/7 care in the Liverpool Care Pathway.

Andrea Sutcliffe, Chief Executive, Social Care Institute for Excellence (SCIE) has also done research and has found that people want consistency and continuity.

  • She added that training on equipment for carers across sectors is needed which would help bring them together.

Dr Neil Bacon, Founder and CEO of expressed he has a conflict of interest, as he wants best care possible for patients. He advised that information from end of life care providers needs to be transparent or else it will be filled by the vacuum of the Daily Mail.

  • He added that “fabulous” comments are common in palliative care. This is not the case in other areas of health care, so providers should capitalise.

Dr Andy Fowell, a MacMillan Consultant in Palliative Care at the Betsi Caldwalader, University Health Board was critical of the panel in the morning.

  • He recommended that what is needed in the system is equity of access, consultant led specialist teams, a single set of standards, a single regulatory board, a 7 day working week and information sharing.
  • From his own peer review of palliative care providers in Wales, he stated they are working in an integrated matter and using .
  • Dr Fowell said currently the patience voice is not being heard.
  • He also worried that setting a target for a number of patients who should die at home is not a good idea, and could create false incentives in the system, leading to bad decisions for some patients.

Professor Kerri Thomas, the National Clinical Lead at GSF Centre for End of Life Care, spoke of Gold Standard Framework (GSF) – a national training and coordinating centre for all programmes, enabling generalist frontline staff to implement quality improvements and provide a full package of care.

  • Thomas stated that advanced planning care discussions occur in all care homes where GSF training taken place.
  • People often move from domiciliary care to palliative care in the last few weeks of care, which can be very stressful and it bring a whole new team in at a person’s most fragile state. This needs to change.
  • GSF is going to start working with dementia services.
  • We need to enable generalists and make a culture change in order to improve quality and outcomes.

By PLMR’s Xanthe Couture

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