Let’s stop talking the palliative care sector down
James Sanderson, Chief Executive at Sue Ryder, discusses the ongoing debate at the moment on the state of palliative care and end-of-life care across the country. The evidence sessions in parliament to consider the Assisted Dying Bill highlighted significant pressures, inequalities and gaps in service. It is true of course that there are challenges, many of which are systematic, but how can we reframe the debate to focus on more positive messages of success and hope?
Financially, it is tough at the moment for providers of palliative care and hospice services – upcoming changes to National Insurance and the Living Wage will of course have an impact, and we are not immune to general rises in the costs of running services. The challenging environment for charity retail and fundraising are also impacting on the sector’s ability to generate additional income in pursuit of reaching more people.
But, when we use statements like the ‘palliative care crisis’ or the ‘poor state of palliative care’ I think we actually undermine the amazing work that goes on every day in supporting people to live well despite their health challenges, or support them to have a good death.
We also risk putting people off accessing the support that is available – why would anyone want to be cared for by something facing a huge crisis!
The quality of palliative care we provide in the UK is among the best in the world. In 2022, The Cross Country Comparison of Expert Assessments of the Quality of Death and Dying 2021 ranked the UK in first place for how effectively our health system provides for the physical and mental wellbeing of their patients at the end of life. Whilst many will argue that challenges in the sector continue, I am not aware that we have seen a decline in the quality of support provided by the sector, and Hospices regularly see positive CQC results on the quality of care delivered.
We can also be optimistic about shifting patterns towards what people tell us they want when they die. In 2006, 57% of people were dying in hospital, this dropped to 46% in 2017 and now sits at 43%. Whilst place of death can’t be seen as an ultimate marker of success, we should be celebrating these positive shifts and simply asking how can we continue to improve both for the benefit of patients and the health care system?
There’s been real consensus around the need to support palliative and end-of-life care to make sure we can achieve an environment in which no one faces death alone. The Hospice sector has just received a significant investment of £100m from the Government to help sustain services and develop new models of care, with the Secretary of State making public commitments to address the challenges faced. At a recent roundtable discussion with the sector and during a response to a parliamentary question, Stephen Kinnock, Minister of State for Care, highlighted his support for developing a plan to secure the long-term sustainability of the sector. We also have a parliamentary commission considering how improvements can be made, which will help support the increasing numbers of people requiring palliative and end-of-life care.
I am not arguing that everything is perfect, far from it. We currently know that many people miss out on the opportunity to access the palliative care they need, and there are significant issues faced with equality of access.
The palliative care sector provides high quality care to people in society and receives huge public support for the work it undertakes, but in order to deliver universal cover for people we need to expand current services and look towards new models of care that adapt to the current challenge and embrace innovation.
At Sue Ryder, our new ecosystem for Palliative and End-of-Life Care (PEoLC) does just this. It builds on the current infrastructure in place and works to address five key challenges for the system:
- Shifting even more care into the community
- Supporting people dying in hospital to have a better death
- Providing more proactive care in specialist hospices for those living with complexity
- Supporting a new conversation in society about death and dying in order to better prepare people
- Providing training for all HCPs in how to support people at the end of their life
Our model doesn’t call for additional funding, it doesn’t challenge the current sector to abandon what it is currently doing, it simply works within existing parameters and restrictions to develop a pragmatic solution for the future.
I am hopeful for the future and call on the sector to celebrate what we achieve each and every day, whilst acknowledging the challenges. I am overwhelmed by the many testimonials we receive from patients and their families about our support. It must be recognised how much the sector has to offer. I want to encourage investment into an exciting longer-term vision for PEoLC that really delivers for our wider society.
Related articles
