Hospice UK gives evidence to the Scottish Covid-19 Inquiry

This week we gave evidence to the Scottish Covid-10 Inquiry, talking about the impact the pandemic had on hospices, including staff, patients and families.

Helen Malo, Senior Policy and Public Affairs Manager for Scotland at Hospice UK gave evidence to the Inquiry based on what we have heard from our hospice members, both during and since the pandemic. 

This part of the Inquiry is looking at the impact on Health and Social Care. We shared detail about how key areas of the pandemic impacted hospices, and looked ahead to what could be learned for the future.

Scottish hospices provide care and support to nearly 22,000 people every year. They’re vital partners to the wider health and care system, working in partnership to take pressure off the NHS and ensure people get the best possible care at the end of their lives. 

Hospices do this all the time, but during the pandemic they stepped up even more to support the NHS at a time of crisis, rapidly adapting their services and working in challenging conditions to continue to provide vital care and support to patients and families when they needed it most.  Despite this, on average just over a third of adult hospice care funding comes from the state, with hospices relying on charitable donations and fundraising to cover the bulk of their services.

The restrictions of the pandemic had a devastating impact on hospices’ ability to fundraise at a time when hospice services were needed more than ever. Large parts of hospices’ fundraising income essentially stopped overnight. During the pandemic, the Scottish Government supported hospices to continue to provide essential care and take pressure off hospitals, awarding in total a £27m emergency funding package to the sector. However, since the pandemic hospices are back to the same funding model, receiving on average only a third of their funding from the state. 

Hospices are still taking pressure off the NHS and demand for their services is expected to increase, but statutory funding has not kept pace with historic and recent spiralling costs and the long-term sustainability of the sector is at risk.

Keeping up to date with the very high volume of national and local guidance was a big challenge for hospices. Guidance could be issued multiple times a week and changes needed to be constantly communicated to staff, patients and their families. Guidance routinely did not mention hospices or understand the specific context that hospice staff were working in. Going through guidance, seeking advice, translating what it meant into the hospice context and making sure the correct guidance was being followed took a lot of time and resource.

Hospices told us how for many months national guidance did not specifically mention or consider the needs or context around hospices. It was unclear whether hospices should follow guidance aimed at hospitals, community services or care homes.

This also had effects on how hospices accessed important protection against Covid-19, such as personal protective equipment (PPE), vaccines and testing, with hospices in some parts of Scotland feeling that they needed to be better integrated into the structures and processes of their local health board.

Visiting guidance changed rapidly during the pandemic and it was unclear how hospices should interpret and implement guidance around visiting in a safe and compassionate way. Introducing restrictions to visiting had a huge impact on patients, families and staff. 

Hospice staff are experts in making the end of life as smooth as possible, for patients and families, but staff reported that visiting restrictions were the thing which caused them most distress as they were unable to provide their usual holistic, compassionate care. 

Hospices continued to provide support to patients and families at their most vulnerable, swiftly adapting their services to meet the rising need in the community as more people were being cared for at home, using virtual technology to provide support when face-to-face care was not possible and breaking down barriers to strengthen partnership working. This has led to lots of positive learning and new approaches that have continued even beyond the pandemic.

Yet the challenging conditions hospices were working in undoubtedly impacted staff, patients, and families. It often challenged the very ethos of hospice care – person-centred, holistic, compassionate care that sees hospice staff do everything in their power to make the end of life experience as smooth as it can possibly be for patients and their loved ones. 

By 2040 demand for palliative care is expected to increase by 20%, with up to 10,000 more people in Scotland likely needing palliative care. Our ageing population mean the levels of deaths seen during the pandemic will become the norm. 

Learning from the experiences of hospices during Covid-19 is not just about being prepared in the case of another pandemic, it’s about being prepared to meet demographic challenges we know are coming. Hospices need to be supported now to ensure they can meet this demand and ensure everyone gets the care they need, when they need it.