More Scots will need palliative care in coming years, says terminal illness charity

More and more Scots will be need palliative care towards the end of their life, according to terminal illness charity Marie Curie, meaning inequalities in healthcare accessibility could be exacerbated in the coming years.

At an event by Holyrood and Marie Curie in Scotland, attendees heard how 90 per cent of the 62,000 people who died in Scotland last year required palliative care before their death. By 2040, 10,000 more people will require palliative care before death.

At Edinburgh’s Fruitmarket Gallery, Scottish Government minister Maree Todd told attendees that challenging public conceptions – and squeamishness – around death will be key to addressing the future of palliative care.

To illustrate her point, Todd told the audience a personal story from her time working as a mental health pharmacist, when a friend died, and her friend’s daughters asked her to dress the body. Todd said “it was a real privilege”, but when she told her colleagues in healthcare, “they visibly recoiled”.

“I thought to myself,” said Todd, “this should be the one room we can talk about death.

“And there are real challenges cropping up, even among healthcare professionals, in talking about death.”

Todd said the Scottish Government has “long been committed to driving a culture of openness, about death, dying and bereavement”, as set out in its strategic framework on palliative and end-of-life care in 2016.

Todd added: “I'm sure that all of you will agree with me that there's still a great deal that we can do to make Scotland a place where people feel well equipped to support each other, through the difficult things that can come with death, dying, and that services and support are fully integrated around the person, their families and their communities.

“And this became even more apparent during the pandemic, when many of us have suffered loss of loved ones.”

Ellie Wagstaff, Marie Curie Scotland’s policy and public affairs manager, provided attendees with figures showing Scotland’s palliative needs will increase considerably over the next two decades.

“In 2020-21, we cared for over 9,000 patients in Scotland,” said Wagstaff, “as well as supporting their families and carers.

“That was the biggest number that we have seen on record since the charity began 70 years ago.”

Wagstaff said that more people will live beyond 75, and that as the number of people needing palliative care increases, so too will the disparities associated with inequality.

“Marie Curie research found that over 8,200 people in Scotland experience poverty every year at the end of life,” said Wagstaff.

“That equates to one in four working-age people and one in eight pensioners. If we look at areas like Glasgow and Dundee for working age people, that rises to one in three.”

The event was concluded by a panel discussion, chaired by health journalist Jennifer Trueland, with Dr Lynsey Fielden, of NHS Forth Valley, Dr Naomi Richards, of the University of Glasgow, and Amy Dalrymple, from Marie Curie. The panel was asked to discuss Todd’s keynote speech.

Richards said: “I think for me, she talked about this tension between aspiration and the embedded operational detail, and I think perhaps this is a kind of oversight from the last framework that needs to be looked at for this framework.

“So, embedding some of that operational detail, embedding some measurement of how all of the targets that are in the strategy will actually be achieved, you know - what's actually the actionable things coming out of it, and the effects over a period of time, so we can say whether it was successful or not.”

Fielden said: “I think there's a recognition, particularly from the pandemic, that it is absolutely vital that we invest in services across the whole system and if we can do that, we can address some of the examples highlighted by Marie Curie.

“I also think the National Care Service bill is moving in the right direction, because a lot of palliative care isn't specialised, it's provided by generalists like myself, and a lot of the discussion is around the provision of personal care, whether that’s in the home, in a care home setting or elsewhere.”

Dalrymple said: “It was reassuring to hear the commitment to the palliative care strategy, and the discussion around the National Care Service bill, because there’s a lot of hope and aspiration invested in that.

“I’m a bit worried that a focus on structural reform can often mean that operational improvements fall by the wayside

“So what we need to do as, as a group of people - all of us who are interested in improving people's experiences of death - is to make sure that the focus on healthcare services, and the focus of where health and social care policy is at the moment, includes that line of agreement that death is something that happens to all of us.”