Why the issue of dying, death & bereavement should be a priority for the next government

The next Scottish Government must make the issue of dying, death and bereavement a much higher priority.

The next Scottish Government must look beyond a five-year term if it is to make the progress needed to ensure everyone affected by dying, death and bereavement gets the support they need.

This was the sentiment expressed by politicians and audience members at a recent virtual hustings event by Marie Curie and Children’s Hospices Across Scotland (CHAS) exploring dying, death and bereavement. MSP representatives from the five largest parties in the current Scottish Parliament attended; including Lewis Macdonald MSP, Scottish Labour, Donald Cameron MSP, Scottish Conservatives, Alex Cole-Hamilton MSP, Scottish Liberal Democrats, Fulton Macgregor MSP, SNP and Alison Johnstone MSP, Scottish Greens.

Marie Curie research has shown that by 2040, up to 10,000 more people will be living with and dying of a terminal illness, and many of them with multiple health conditions and will be living in community settings. The latest Public Health Scotland research for Children in Scotland requiring Palliative Care (ChiSP) also shows that there are 16,700 babies, children and young people (aged 0-21) across Scotland who may die from a life-shortening condition – more than ever before.

These projected population changes will lead to a significant increase in demand on community-based services with more people needing a palliative approach.

An audience of nearly a hundred health and social practitioners, third sector representatives, academics, and family members who have experienced dying, death and bereavement asked politicians what the parities would do, if elected to Government, to meet emerging challenges.

New national strategy for palliative care

By and large a strong consensus emerged around a number of points of action including a new national strategy for palliative and end of life care, with Fulton MacGregor promising to “fully support a new national plan.” This was echoed by Alison Johnstone who agreed with the need for the “development of a new national plan for palliative care.”

• We believe a new strategy must set-out a plan for palliative care in all settings and across all ages, and work with all care providers to do so 

Funding for third sector palliative care providers

The importance of funding for third sector palliative care providers was also recognised by the MSPs with Lewis Macdonald calling for “proper funding of hospices.” This was echoed by Donald Cameron who said, “palliative care services in the community should be placed on a sustainable footing.”

• There must be continued financial support from the next Scottish Government for the hospice sector to ensure sustainability so terminally ill people of all ages can access the support they need

Social care

Much of the care of terminally ill people is delivered in social care settings, including care homes, which have experienced a tragically high number of deaths during the pandemic. The importance of the Scottish Government’s Independent Review of Adult Social Care was discussed, and all panellists agreed in the need to commit further to the social care workforce who are key to delivering palliative and end of life care but often do so without training.

• We believe mandatory palliative and end of life training must be introduced for all health and social care staff working with terminally ill people to equip workforces with the right skills, and ensure consistently high standards of care

Support for family carers while caring for someone, and after that person dies

Increased support for family carers was also seen as a priority, particularly following bereavement. The need to identify carers for support was highlighted by Alex Cole-Hamilton saying many “carers don’t know they are carers, particularly young carers, who are looking after family members in end of life situations.”

Panellists expressed their support for extending Carers Allowance payments for carers following a bereavement from eight weeks to six months.

• We believe there must be better physical, emotional and financial support for family carers while caring for someone and after their caring role ends

It was encouraging to see strong political support for dying, death and bereavement at our Hustings, and commitments made are important. But this must lead to action early in the next Parliament and in the first Programme for Government.

Read Mare Curie’s manifesto in full. The charity is urging everyone to write to their local candidates ahead of the Scottish Parliament Election to ask them to sign up a pledge to make palliative care a much higher priority for the next Scottish Government.