An “essential component” of the right to health – palliative care – remains underfunded and understaffed across the country, says charity Marie Curie as it leads a call for legislation in Scotland to prioritise meeting people’s palliative care needs.

Marie Curie Associate Director for Scotland Amy Dalrymple told the Scottish Green Party conference that a narrow perception of palliative care has led to many patients across Scotland seeing this right not recognised:

“Our health services are very focused on fixing people and making people better. It is difficult because of your diagnosis, your age, all your social circumstances.

“All of these have an impact on whether you're identified as having a palliative care need and particularly identified as coming towards the end of your life.

“Palliative care is not just end-of-life care but includes the care that you receive at the end of your life. And too many people, too many people across the UK and in Scotland are missing out on the care that they need.”

She said that the charity has been working with MSPs across Holyrood to help realise and deliver on people’s right to palliative care but expressed frustration at “too many warm words” not followed by action.

Ms Dalrymple told attendees that despite the right to palliative care being considered a priority since 2008, the cultural and legislative shifts have been slow, leaving many waiting without the right care:

“It’s not in the culture of the way our health services are set up to say that it’s okay if somebody dies.

“Death is not a failure. Death is a part of life. It’s a natural outcome that will happen in different ways for people.

“If you have a diagnosis of a terminal illness, then that is seen as acceptable. You are way more likely to get the palliative care you need if you have a cancer diagnosis rather than anything else, and if you are under the age of 65.

“You are way less likely to get the palliative care you need if you are over the age of 85 and if you have a diagnosis of something other than cancer – in particular, if you don’t have a diagnosis of a terminal illness at all, you are ‘just frail’.”

As a result, she said, too many people who die in Scotland go without the palliative care they need.

Beyond a cure

Marie Curie has estimated that £1.1bn – nearly half of Scotland’s annual health spending – goes towards healthcare for people in hospital in the last year of their life.

Ms Dalrymple said alongside wider understanding and training on palliative and end-of-life care, resources and spending are needed to expand the capacity for Scotland’s healthcare services to deliver that care:

“Most of those people in the last year of their lives, do not want or need to be in hospital. Hospitals are places where people go to be fixed.

“These are not people who want to be fixed, who want to be cured, who can be cured. These are people who need care, who need pain relief, who need the support to be with their family and friends, they may need some mental health support.

“But they need palliative care, not curative care, and our system funnels them into hospital.

“So, it’s not necessarily even about more money. It’s about a recognition that the resources we have are not being used efficiently.”

With around 1 in 3 people in Scotland’s hospitals estimated to be in the last year of their life, Scottish Greens health spokesperson Gillian Mackay MSP recognised this and said that achieving change will involve addressing the underfunding and understaffing issues.

This extends beyond just healthcare, Ms Mackay said, and realising the right to palliative care must involve areas of social security and housing services to support people in their home, too.

She added there remain practical issues facing NHS Scotland when it comes to patients be able to ask for their their health data to be shared so they don’t have to retell their story.

Echoing the call to realise people’s right to palliative care, Rob Gowans, Public Affairs Manager at the ALLIANCE emphasised the difference that good palliative care can make.

He said the poorer awareness around palliative and end-of-life care as part of people’s wider right to health as likely having contributed to a poorer planning for or improving palliative care.

He said that realising this right must include specific duties and responsibilities on Scotland’s integration authorities, or health and social care partnerships, to plan for and deliver palliative care.

This must span from primary care and social security to supporting people to be involved where needed in planning for their children’s future and support for unpaid carers, he said, adding:

“Palliative care should be available at any point after someone has reached a diagnosis of terminal or life-shortening condition that it supports them to live well and with the best health possible during that time, regardless of how long that might be.”

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