With rising demands and costs across hospice care, healthandcare.scot heard from those working on the frontline of the hospices sector across Scotland as a national funding framework is being explored by the Scottish government.

While engagement has been welcomed, many call for more action and details of long-term and short-term funding support to secure the future of hospices.

Following a parliamentary roundtable earlier this month, Hospice UK and Scottish hospices met with Health Secretary Humza Yousaf to discuss the need for increased support in tackling the short and long-term pressures facing Scotland’s hospices.

Helen Malo, Policy and Advocacy Manager for Scotland at Hospice UK said:

“Hospices across Scotland are feeling the impact of the cost of living crisis, with rising energy bills and staff costs stretching finances to the extreme.

“On average only a third of the cost of adult hospice care comes from the state, with the remainder being fundraised by hospices’ generous local communities. But right now local communities may also be struggling, meaning hospices’ fragile income streams are under increasing pressure.”

Kenny Steele, Chief Executive at Highland Hospice, shared with healthandcare.scot that the roundtable was a good forum for sharing perspectives and MSPs became aware that funding for hospices is “now too skewed towards charitable fundraising” compared to public funding. Mr Steele added:

“There is good support from Scottish and UK governments for the work of independent hospices. However, as costs have risen and demands for palliative care have increased there needs to be a review around what fair funding for hospices looks like.”

Jacki Smart, Chair of the Scottish Hospices Leadership Group (SHLG), agreed that meetings like the roundtable should happen regularly to engage more MSPs in future but, with “ever increasing” demand, more support is needed.

Meanwhile, the convener of the Scottish Parliament’s cross party group on palliative care, Bob Doris MSP told parliament last week that the hospice and palliative care sector must be placed on a “stable financial footing” to support its growing role, especially given the “current headwinds” relating to hospices’ energy and staffing costs.

Mr Doris said that while the NHS Agenda for Change pay offer for 160,000 staff was very welcome, financial pressures remain in the wider hospice and palliative care sector.

Speaking with healthandcare.scot, Tracy Flynn from Ayrshire Hospice reflected on the parliamentary roundtable held earlier this month:

“I think keeping the dialogue open with hospices and, even on an annual basis, for us to hold a similar type of meeting would be great.

“Going forward it’s two-fold. Overarchingly, an acknowledgement that hospices cannot be treated completely separately and that you cannot pay a staff nurse in an NHS facility one salary and the same staff nurse in a hospice providing palliative care a different salary – it’s just not right.

“And it’s about the value that the government places on palliative and end of life care, and its statutory requirement to support that, with a longer term commitment to work with hospices while allowing us to remain independent.”

Jacki Smart from SHLG added that at the parliamentary roundtable there was a “strong sense that hospice staff are a core part of health and care workforce” and must be paid as such.

Ms Flynn explained that hospices were supported during the height of the pandemic but since felt dismissed while increases in demand continued:

“There’s a lack of acknowledgement about the special level of care that hospices are able to provide. If my doors were to close tomorrow, NHS Ayrshire and Arran would have to do that care for those patients – and some patients would suffer.”

Convener of the palliative care cross party group, Mr Doris shared with parliament that the Health Secretary held a “very constructive meeting” with Hospice UK and Scottish hospices to discuss short- and long-term support.

Yet, Ayrshire Hospice’s Ms Flynn added that hospices are still predicting deficit budgets and paying fuel and utility bills as well as salary rises out of reserves:

“That’s the reality but what happens when the reserves run out? You really are just kicking the can down the road with hospice care, because the reserves will run out but we’ll still be faced with the bills.”

She says building new hospices across Scotland to meet rising demand requires longer term plans that support sustainable development, but that grants available for more environmentally friendly projects are short term.

Hospices funding framework

Ms Flynn says that hospices need to be seen as partners in health and social care across Scotland, and should not need to go to local councils for funding “when they’ve got no money”, adding:

“We want our own funding agreement nationally, so that we do not have to go with a begging bowl to our localities.

“They’re not partners if we’re asking them for money, we’re not partners. We are being told no, [we are] being avoided, evaded – and I’m not talking specifically in my area, I’m talking collectively across Scotland, it’s a patchy picture. So what you’ve got is postcode palliative care.”

Highland Hospice’s Kenny Steele told healthandcare.scot that while hopeful for positive change in the coming months, the fuel crisis and inflation costs mean hospices are struggling to provide care now:

“Our energy costs have gone up four-fold. Quite simply that is money that is then no longer available to deliver care.”

Mr Steele adds that the lack of a nationally agreed funding framework of hospices creates “inequity of funding for palliative and end-of-life care across Scotland”, but that he believes this will be acted upon.

Ayrshire Hospice’s CEO, Ms Flynn says she hopes to see funding agreement for hospices within the current framework for the palliative care strategy, and for commitments not to “be diluted”, adding:

“We’ve been here before and it’s rumbled on for one, two, three years and it’s still not come to fruition. So, if we had a rescue package – for want of a better term – and a longer-term 2023 funding framework, that would help us.

“It’s not an arbitrary percentage, we can’t say we want to be 70% funded, it will be different for different hospices. But if care is out in the community, what is the total cost of that care and give us a percentage of that – it’s got to be a continued, reciprocal agreement.”

She says that this is yet to be seen and doing so at a national level rather than locally would be greatly beneficial.

However, as chair of the Scottish Hospices Leadership Group, Jacki Smart says that hospice leaders have at least a commitment from ministers to progress the funding framework discussion, adding:

“A clear, flexible and dynamic funding framework, developed and agreed nationally will make local conversations more straightforward, more responsive and will support all partners to focus on what matters to people.”

Hospice UK, the national charity for hospice and end-of-life care, reported that the government had recognised the pressures facing the sector and “agreed to the need for a national funding framework” to address these inequities and put hospices on a sustainable footing.

Policy and Advocacy Manager for Scotland at Hospice UK, Helen Malo said:

“Recent talks between the Scottish government and the hospice sector about longer-term sustainability have been constructive, but this has not addressed the urgency of hospices’ immediate costs.

“Hospice UK and Scottish hospices are calling for immediate funding to cover the impact of the NHS pay rise so that hospices can pay their staff the fair, equitable wage they deserve.”

As Chair of the Scottish Hospices Leadership Group, Jacki Smart adds that it is still early days, but government officials have already committed to include health and social care partnership Chief Officers in discussions next month. She says it is important to act soon to implement support:

“I hope that the momentum continues as it is essential that the detail of this is agreed and implemented to support local/national budget and service planning conversations at this time next year. There simply cannot be a delay.”

Read more: Fuel crisis support needed for hospices; Auditor General: Difficult choices for Scotland's NHS; Unpaid carers “spiralling” in cost-of-living crisis; Insight: Carers in need as fuel poverty hits

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