The need to address the challenges in palliative and end-of-life care

With the Terminally Ill Adults (End of Life) Bill passing through Parliament, MPs from across the house and from all parts of the country have been brought into closer contact with constituents’ experiences of palliative and end-of-life care (PEoLC). Regardless of their stance on the bill, there was widespread agreement that palliative care must be made more widely available and better supported.

Over the past few months, campaigners have increased calls that PEoLC is essential for ensuring individuals with life-limiting conditions receive compassionate, holistic support during their final days. Beyond providing comfort and dignity to patients, it also offers critical emotional and practical support to families and carers.

Encompassing everything from symptom management and psychological support to practical assistance and helping individuals make informed decisions about their end-of-life wishes, PEoLC is an essential part of the “cradle-to-grave” healthcare coverage the UK has aspired to provide.

And yet, research by Sue Ryder found that 77% of respondents believe that if assisted dying were legalised, many terminally ill people might see it as their only option due to inadequate PEoLC provision. There’s merit to this concern, as it is estimated that 1 in 4 people cannot access palliative and end-of-life care services.

PEoLC has historically been overlooked against competing priorities within the broader health agenda. Fragmented responsibilities between the NHS, social care, and the voluntary sector, coupled with inconsistent funding and regional disparities, have created significant barriers to delivering sustainable improvements. Overcoming these challenges is politically complex, requiring greater awareness, a shift in societal attitudes around death, and reframing PEoLC as a core element of the wider healthcare system, not just a moral obligation.

To unpick some of these challenges, WA Health has been proud to support Sue Ryder to build on their campaign to improve PEoLC provision and ensure that everyone is supported through bereavement and grief. Following the introduction of a new Government last year, we have delivered a multipronged approach, to raise awareness and advocate for change at a local and national level.

• Grief and bereavement training: We worked with Sue Ryder and our Parliamentary sponsor, Peter Dowd MP, to deliver hands-on training to MPs and their staff across three sessions, equipping over 60 attendees with the tools to provide effective support to constituents experiencing grief and bereavement.
• In-depth research surveys: To better understand the challenges and barriers to improving PEoLC, we facilitated two surveys: one engaging MPs and another surveying acute and primary care professionals. These provided insights into the current landscape for PEoLC, and helped to inform Sue Ryder’s engagement with policymakers and stakeholders, ensuring policy asks are data-driven and focused on addressing key challenges in care delivery.
• PEoLC roundtable: Following the Government’s launch of the 10 Year Plan for the NHS engagement series, we convened leading PEoLC organisations and policymakers involved in the development of the plan to discuss the challenges and opportunities to integrating PEoLC into the next decade of health and care planning.

The session marked a crucial first step in developing a consensus statement for how PEoLC can be appropriately and effectively integrated into the 10-Year Plan, supporting the Government to meet its ambitions of shifting healthcare provision from hospital to community, analogue to digital, and sickness to prevention. This statement will serve as a unified voice for the sector, driving engagement with NHS England and the Department of Health and Social Care to ensure no one is left without the care they need at the end-of-life.

Leanne Creighton, Interim Head of Influencing at Sue Ryder, stated:

“Bringing together the sector to align on shared priorities is vital for driving much-needed change in palliative and end-of-life care. The insights gathered from my colleagues across the sector will ensure that, as we continue to advocate to ensure that no one faces death or grief alone, we do so with the support of the sector as well as the patients and families who rely on it.”

For more information on how WA Health can support your organisation to build cross-sector consensus and engage policymakers at a local and national level, get in touch with Ellie Naismith at EllieNaismith@wacomms.co.uk.