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A good death takes more than a framework

This opinion piece is over 6 years old

Elinor Jayne says new health and care partnerships must work with third sector health bodies in order to ensure all Scots get decent palliative care

You might not know that it is thought that over 10,000 people die in Scotland every year who would have benefited from palliative care but didn’t receive it. You might not know that, basically, there is no data on palliative care services: we simply don’t know whether the care people receive across Scotland is good, bad or indifferent. But what we do know is that good, holistic palliative care makes a huge difference to people who are dying, and to their families.

Not only does good palliative care control pain and other distressing symptoms, it can provide much needed practical, social, emotional and spiritual support for patients and their carers. Anyone who has had this support will testify to this, just as people who have watched their loved ones die with poor or no palliative care can tell you that things could have been much, much better.

So the Scottish Government’s new framework for palliative care is good news, or at least a welcome first step towards its vision of a Scotland where everyone who would benefit from palliative care receives it. The framework sets out ten strong and much-needed commitments on things such as finding ways to identify people who can benefit from palliative care through to supporting better public and personal discussion of bereavement, death and dying. These commitments are positive – but will they make any difference?

Experts like us need to be at the table when services are being designed and commissioned locally, or there is a real risk of reinventing the wheel, or even worse, the wheel lying rusting at the side of the road

From April 2016, Scotland’s new health and social care partnerships will be responsible for commissioning all palliative care services. However, earlier this month Audit Scotland published a review of progress as the partnerships get ready for launch. This revealed that while there is still widespread support for the integration of health and social care, there are a number of risks that mean things could go wrong. Not only that, it looks unlikely that the new partnerships will be in a position to make any significant improvements to care in the immediate future.

So, if these partnerships are to deliver the new palliative care framework by 2021 as is the Scottish Government’s intention, they will need significant support to make this happen. Clear, strong guidance on what measures the new partnerships should use is vital. As is guidance on ensuring consistent access to palliative care wherever you are in Scotland, regardless of condition or background, on inter-agency sharing of meaningful anticipatory care plans for people who have a terminal illness, and on providing co-ordinated out-of-hours palliative care.

Not only that, meaningful engagement with the third sector – where there is a high level of expertise in palliative care – needs to take place. We at Sue Ryder know all about the huge difference that good quality, 24/7, holistic palliative care can make. Experts like us need to be at the table when services are being designed and commissioned locally, or there is a real risk of reinventing the wheel, or even worse, the wheel lying rusting at the side of the road.

The Scottish Government is right to aspire to a Scotland where everyone who needs palliative care will have access to it. However, this will only become a reality if the new integration partnerships are given both clear direction and the tools to deliver this. Otherwise, with all the other balls that the partnerships will be trying to keep in the air, providing consistently high-quality palliative care could be the ball that is kicked into touch. Then there is a real risk that 2021 will come and go, with no change.

Elinor Jayne is policy and public affairs manager for Scotland at Sue Ryder



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