Report from Brenda Allan and Primary Care Work group
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Executive Summary
The public have the right to expect the NHS to provide best practice palliative and end of life care(P&EOLC), including care at the time of death, for the dying person and their carers. This is not the case in parts of the country at present. Getting P&EOLC right requires getting General Practice and primary care right, including Out of Hours, as well as specialist palliative care services both in inpatient and community settings. This requires investment in staff, training, equipment and IT.
The public have the right to expect that public money does not get spent on shareholder profits in private companies, and that core NHS services are not dependent upon charitable funding. Palliative and end of life care is a core NHS Service. Currently Hospice providers receive only 37% of their funding from the NHS, despite being relied upon as a key part of the palliative care provision where they operate.
Integrated Care Boards (ICB) have a duty to commission P&EOLC, but with capped budgets cannot commission according to need. A third more people are dying at home now than pre-Covid, without a corresponding increase in resources for support. There are considerable inequalities is accessing care. Less than half of those dying with conditions that need P&EOLC receive that care, and this is more the case for those with noncancer diagnoses, patients from BAME and disadvantaged communities and those who live alone.
People who are dying need to have a choice of place of death. It cannot be assumed that home is always the preferred place. There are some excellent models of hospital, hospice and community-based care. In addition, many deaths take place in residential care and nursing homes where appropriate support cannot currently be presumed but should be made available.
Good P&EOLC is by nature an activity where communication is essential and time consuming – between patients, carers and multiple professionals. It does not lend itself easily to efficiency measurement, and requires personalised face to face contact. Continuity of care throughout the illness pathway for people with chronic illnesses, including dementia and cardiorespiratory illnesses, avoids the traumatic cliff edge transitions from chronic illness care to P&EOLC, when they approach their end of life; dying evolves from living. Staffing levels across primary and community care are currently woefully inadequate to provide a sustainable, comprehensive, high-quality service
Recommendations
◼︎Treat P&EOLC as core NHS business at local and national level with increased funding. Provide stable and predictable funding to allow commissioning for all levels of care and to enable coherent planning and development of service
◼︎Raise NHS funding contribution to speciality charitable P&EOLC services on a phased basis from 37% to 70% (New Zealand’s level).
◼︎Commission primary care to assume a central role in P&EOLC. Properly staffed, primary and community healthcare could care for most patients, provided specialist care is available in a timely fashion. This requires substantial investment in the community nursing workforce, and improved staffing within care homes.
◼︎Improve recruitment, retention and career structure within the P&EOLC speciality
◼︎Commission a National Care and Independent Living Service