1. Caring to the end (resolution)

Inner South East London Branch

That this meeting of RCN Congress calls on RCN Council to lobby for fully funded palliative care services.

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Progress report

Council committee: NPPC
Committee decision: Integrate project into ongoing workstream
Council member/other member/stakeholder involvement: Jane Bovey
Staff contact: lynn.young@rcn.org.uk

Outcomes for this work include:

In England, the development of improved end of life care services continues within a landscape of radical reorganisation within NHS England. The demand to save money is another pressure on all services. The RCN is responding with its Frontline First campaign and other lobbying activities.

The Transforming Community Services project has evolved as a result of the recent White Paper (Liberating the NHS) to encompass a whole scale review of primary care and community based health care services, including new commissioning arrangements in the form of GP Consortia. The review of palliative care funding demanded by the Rt Hon Andrew Lansley informed the Comprehensive Spending Review (Oct 2010). The RCN fully engaged members in both the funding review and the subsequent comprehensive spending review as part of the work on ‘Liberating the NHS’.

The DH (England) led programme, Transforming Community Services ended in March 2011. However, end of life care services continue to have a high profile and are highlighted in a number of the white papers. The RCN responded to the papers and in our response to the ‘outcomes framework’ and ‘commissioning for patients’ consultation documents we have urged the government to focus on the quality of care received by patients – regardless of setting – at the end of their lives. It is widely acknowledged that people continue to express their preference to die at home, if they can be assured that the services will be available to them and their carers.

The Kings Fund released its report, Implementing the end of life care strategy, on the 28 October 2010. This report highlights the progress achieved in this domain of care, but warns of loss of momentum during a time of financial savings needing to be made. The RCN circulated the report to various members and continues to monitor the situation via its Frontline First campaign.

The Palliative Care (Scotland) Bill, a Private Members Bill, was laid before the Scottish Parliament on 1 June 2010. The Bill aimed to give legislative effect to the key intentions of the Scottish Government's Living and Dying Well strategy by placing Scottish Ministers under a statutory obligation to provide palliative care for those with life-limiting conditions. The RCN in Scotland was concerned that this statutory obligation would set an expensive and impractical precedent within the wider health and social care sector and was not convinced that it would lead to rapid improvements in palliative care.

The bill was withdrawn on 2 December 2010 following lack of support by the lead Parliamentary Committee in their stage 1 report (which the RCN provided written and oral evidence to). The Living and Dying Well strategy is seen to be the most appropriate vehicle for progressing improvements in palliative care. The RCN continues to be engaged with and supportive of the strategy, which has recently been updated to further embed palliative care throughout Scotland.

NHS Scotland Healthcare Quality Strategy was officially launched in May 2010. This has a proposed six quality outcomes, two of which focus on the quality of care received by patients at the end of their lives. The RCN continues to engage and influence the development of this strategy.

The RCN in Scotland also responded in support of the Supporting Bereavement Care strategy by the Scottish Government.

The RCN in Wales responded to the Welsh Assembly consultation on palliative care standards and will continue to be closely involved with the Welsh Assembly activities on end of life care.

The RCN in Northern Ireland welcomed the new Palliative and End of Life Care Strategy published by the DHSSPS in 2010. The strategy emphasises the need to ensure that resources follow the patient and that there should be a strong nursing input to the commissioning process to ensure that commissioning decisions appropriately reflect the complexities and sensitivities of palliative and end of life care.

Through the Frontline First campaign and the RCN’s response to the Northern Ireland Executive draft budget 2011–2015 the RCN highlighted the impact of budget cuts on the voluntary sector, including the Northern Ireland Hospice.

The RCN and RCGP manifesto on what patients and carers should expect in terms of end of life care services has now been published and the RCN continues to engage with other work streams relating to end of life care and endorsed the Gold Standard Framework toolkit for nurses.

Most recently the RCN has contributed to a new DH document on nursing and end of life care (not yet published).

Debate report

The first resolution of Congress proved to be highly emotive as members from across the UK called for patients to have the right to “die peacefully and properly in the way they choose”. Delegates spoke of wanting to give high quality care based on patients’ needs, as they relayed their personal and professional insight into the provision of ‘end of life care’.

Christiana Ominiyi, Chair of RCN Inner South East London Branch, proposed the resolution, citing statistics of patients dying without specialist palliative care and the dwindling reduction of staff who look after these patients. The majority of palliative care is undertaken by the voluntary sector and takes place in care homes and the independent sector.

All members who spoke to the resolution called for fully state funded palliative care, so patients could make their own choices, such as where to die. They also called for palliative care to be “free at the point of need” with funding for out-of-hours care as these are the most vulnerable times for dying patients. Nykoma Hamilton from Fife Branch said “everything comes down to money”.

Catriona Forsyth from the RCN UK Safety Committee said: “We need to adopt a multi-agency, streamlined approach to each person’s pathway towards their dignified end”.

The palliative care of the young and those with mental health problems such as dementia was also debated, with a realisation that there is not a one size fits all care strategy. Budgets should be proportionate to the care needed and be available for all, delegates said. 

Full specialist training in palliative care for all nursing and multi-disciplinary health care staff would ensure that patients and their families are supported during such difficult times. Iain McGregor from the RCN Older People’s Forum said “Staff are not trained to deliver palliative care, this should be the priority – training and knowledge is key”.

The vote was passed and an overwhelming 98.33% of members voted in favour of the resolution.

FOR   411 – 98.33%
AGAINST  7 – 1.67%
ABSTAIN 2

Background

There has been much discussion in recent years on the provision of end of life care. In its End of life care: nineteenth report of session 2008-09, the House of Commons Public Accounts Committee reported that:

The National Council for Palliative Care estimates that 300,000 people die every year without the specialist care required for a ‘good’ death. Currently patients with cancer occupy 95 per cent of specialist palliative care beds, although cancer accounts for only 25 per cent of all deaths. It is now recognised that more effort should be made to help ensure that people with other conditions, such as heart failure and neurological conditions, have access to high quality end of life services.

Developing improved end of life care services is high on the agendas of the various health departments in the UK and each country has its own strategy for end of life care. In England, the Transforming community services programme has a separate Transforming end of life care strand. However, much of the extra funding which was made available for end of life care has been reportedly diverted to other areas of health care demand. Scotland launched its palliative care strategy Living and dying well in 2008 and has a forthcoming Palliative Care Bill which proposes a needs-based approach to the ‘on demand’ provision of palliative care services, while in Wales the Year 2 Palliative Care Services Funding 2009-2010 report has been submitted to the Welsh Minister for Health. In Northern Ireland hospice services receive some statutory funding together with funding from health care trusts, but predominately rely on donations and legacies for most of their income. The DHSSPS has recently consulted on a draft palliative care and end of life strategy for Northern Ireland and the outcomes are awaited.

Despite the UK being a world leader in palliative care, a significant proportion of funding arises from local fund raising and charities; 70 per cent of independent hospices have only a one year contract with the NHS and for 97 per cent of hospices state funding does not fully cover the cost of the NHS services received by patients. There are fears across the UK that, because of the current economic climate and the resulting pressure on the NHS to make financial savings, there could be a reduction in the present funding available for end of life care.

The RCN has a wholehearted commitment to ensuring equitable access to high quality palliative care services across the four UK countries and is currently engaged in a number of initiatives, including the promotion of the Transforming community services national end of life care strategy, the Gold Standards Framework, and the Liverpool Care Pathway.

References and further reading
Department of Health (2009) Transforming community services: ambition, action, achievement. Transforming end of life care, London: DH. www.dh.gov.uk/dr_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_102199.pdf

NHS Scotland (2008) Living and dying well: a national action plan for palliative and end of life care in Scotland, Edinburgh: The Scottish Government.  www.scotland.gov.uk/Publications/2008/10/01091608/0
 
National Gold Standards Framework Centre (2010) The gold standards framework: enabling a gold standard of care for all people nearing the end of life.  www.goldstandardsframework.nhs.uk