A surge in demand combined with the lack of usual fundraising will affect end of life care in Wales, writes Lowri Griffiths.
Hospice and end of life care in the community is currently sitting on a knife edge, and with more people dying – both with and without coronavirus – there is a real risk that they and their families won’t get access to the vital support they need this winter as demand for our services is expected to surge.
Last winter an estimated 180,000 dying people needed palliative care in the UK. In Wales, 34,000 people die each year and we know that around one in four did not receive the support they need even before the pandemic
As we head into winter and as we experience further outbreaks of COVID-19, the backlog of people who missed out on crucial diagnoses or treatment during lockdown, and the usual pressures associated with seasonal flu, means we will see more people than ever needing extra care and support at the end of their life.
As Wales’ largest end of life charity, providing care to over 3,500 dying people and their loved ones each year, we know what a difference proper end of life care can make.
When someone dies in needless pain or is separated from their loved ones at the end of their life, this is not only a poor experience for the dying person, it can be deeply traumatic for the family, leading to complex grief.
The patients that Marie Curie are seeing out in the community now are at risk and in some instances, their support networks quite literally disappeared overnight at the start of lockdown.
They may have missed out on treatment and they’re frail and vulnerable; they are going to be more prone to flu and will suffer the consequences of a system struggling to deal with COVID-19 and other winter pressures.
It is inevitable that we are going to see a huge surge in the need for compassionate care in the community. The need to ensure dying people have the best possible end of life experience has never been greater.
As a charity, Marie Curie has not been immune to the challenges around fundraising and as we experience local lockdowns, our generous supporters are unable to take part in a number of planned fundraising activities and our income continues to take a hit like many other third sector organisations.
The challenge we face is that people who are dying in Wales, and who rely so much on our services, may see their care affected due to the ongoing cliff edge that our fundraising continues to experience.
Though we have seen an abrupt and devastating loss of income, our frontline staff and volunteers have continued to provide patient support and care to those most vulnerable, often at times when they themselves feel vulnerable, especially early on during the pandemic when stocks of PPE were scarce.
“We can’t sustain the level of care needed in the longer term without more sustainable funding.”
The story is not bleak across the board and we were fortunate to receive an overwhelming response to our Emergency Appeal. With thanks to this generous support, we’ve been able to expand and adapt our frontline services to support more people in crisis during the first wave of the pandemic.
But we, as well as many other charity providers, can’t sustain the level of care needed in the longer term without more sustainable funding and we’re concerned about our vulnerability and the vulnerability of other providers in coping with the surge in demand for end of life care this winter.
The sector was already stretched to its limits even before the pandemic; such colossal disruption to fundraising set against a surge in demand means that the time has come for a new collaboration with our statutory partners, so that we can forge a new deal to redesign and properly fund end of life care.
We are incredibly grateful that we have received Welsh Government funding for our clinical work in our hospice during this pandemic, but it has been a bridge to enable us to navigate through the first phase of the pandemic. Now is the time to refocus and do more to support dying people and their loved ones across the UK.
The stark reality is that unless we come together collaboratively to put end of life care high on the policy and care delivery agenda here in Wales, more people will tragically not receive good end of life experiences because existing services may be impacted.
We need a world where everyone receives the best possible end of life experience, and that requires end of life care to be put on a new strategic and financial footing.
It’s time for a new conversation around our collective end of life care service delivery in Wales.
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