Hospices are the lifeline of palliative and end-of-life care, but don’t get enough government funding

Comment from Emma Johnson, Chief Executive, this Hospice Care Week.

The local health and social care system is buckling under immense pressure and the impact this is having on people living with a terminal illness is potentially devastating. An increasingly over-stretched NHS is leaving many without the care they so desperately need and deserve.

Last year we cared for and supported 1,500 local patients and families but we know there is considerable unmet need. Some groups and communities in our area are marginalised and disadvantaged and are already missing out on our care. This is a situation likely to be made worse as a result of a lack of a robust, transparent and sustainable central funding model for our services.

Consider this, the UK’s death rate is expected to increase by 25% in the coming years. Almost 100,000 more people will die in 2040 than died last year in the UK.

As a nation we are ageing. Illnesses that would once have been fatal are now chronic but people are living longer with significant health issues. More people are living with complex long-term conditions such as frailty and dementia and this is going to put a massive strain on an already broken system. The recently published Darzi report into the state of the NHS clearly states that things need to change and more emphasis needs to be placed on services and support for people in communities.

Hospices are well placed to meet the increased demand for the care and support people need, both now and in the future. Yet we are expected to do this without the funding to match.

I reflect on a response that came from one of our local commissioners recently when discussing funding. “We didn’t ask for hospices.” Whilst this may be true, hospices were born out of a desire to add additional support for people at the end of their life that couldn’t be provided solely by the NHS. It is unthinkable that hospices won’t be here in the future.

Imagine, for a moment, if hospices didn’t exist. Where would the thousands of patients we care for go? What would happen to the families who depend on us both at a time when patients need care, but also our support for families who are bereaved? The pressure on already overstretched resources across the city would be immense.

It costs us £8.7 million to keep St Leonard’s running every year. But while our costs increase annually, our statutory funding does not increase in line with those increases. It still only covers around 27% of our total running costs and it is negotiated on an annual basis with no robust or agreed model for discussion. The remaining 73% is raised through the hard work and support of our dedicated team of staff and volunteers, and of course the generosity of supporters from our local community.

This week is Hospice Care Week, celebrating the incredible work of charity shops in helping fund patient care. Hospice UK have announced this this week that nationally, more money is spent in hospice charity shops than hospices receive from the government. Last year our charity shops raised £890,000 in net profit to help fund our care, meaning 1 in 10 patients are cared for thanks to our retail donors and shoppers.  This is incredible and we couldn’t be more grateful for that continued support.

Our vision is that everyone living with a life-limiting illness should have access to the best possible care and be supported to die well. To have services providing care for patients and families at their most vulnerable time funded by the fantastic efforts of these donors and supporters is simply unacceptable. We would not accept this of maternity services, and we should not accept it for end-of-life care.

The recent changes to the Health and Care Act clearly state that there is a requirement to fund care at the end-of-life, and specifically specialist palliative care. We have seen no impact of this change in relation to the funding we receive yet we are the only organisation in the city providing specialist palliative care beds.

The system is failing those who need it most at a time when they are most vulnerable, and the government must act now to provide more funding for hospice care. How we care for patients at the end of life is often considered to reflect us as a society as a whole. We need to do more to support patients and families to ensure they feel supported and prepared, but in order to do this we need the government to act and ensure a more sustainable funding model for hospices.