‘Appropriate and equal’ palliative care provision failing in Scotland and Wales

More than 10,000 Scottish people die each year without appropriate palliative care towards the end of their life, a report prepared for the Scottish Parliament Health Committee has revealed.

The report, written by Prof David Clark of the University of Glasgow, estimated that around 80% of those who die in Scotland each year – or more than 40,000 – would benefit from some form of palliative care, but a quarter do not receive it.

Palliative care is used to prevent and alleviate suffering linked to life-limiting illnesses, especially within end of life care. According to Clark, its principles are “holistic and multi-disciplinary” as they focus on the physical, social, psychological and spiritual facets of serious illness.

Although it is a relatively new field, it is developing rapidly and gaining wider professional, policy and public interest.

Despite this, there is “little evidence” of nationally-adopted palliative care in Scotland, calling for its “robust and workable” endorsement in the public health system. This is met with a serious information deficit on data available relating to its provision countrywide.

But Clark noted that it is both a public health and a human rights issue and added: “The first assumes the insertion of palliative care into the public health system, thereby positioning it in the world of policymaking, government priorities, need, supply and resource allocation.

“The second perspective derives from the assumption that the development of palliative care can gain benefit from a rights-based approach.

“The two are interconnected and together they have the potential to secure the right and fair access to palliative care as legal and policy imperatives, with binding consequences when they are not met.”

Convener of the Health Committee, Duncan McNeil MSP, said there were also “serious deficits” in the quality of palliative care in the country and noted that the report shed a light on the lack of information held on it.

He said: “If we can’t gather basic information about who is receiving palliative care, then this leaves serious questions open about who is not getting the care that they need.

“From the evidence we have received already during the course of our inquiry, there have been individual cases which tell a story of the difficulties experienced by people at the end of their life in accessing and receiving the palliative care they need.”

Despite the gaps in information and lack of care provision, the United Kingdom was the first to recognise palliative medicine as a speciality in 1987. This now extends to around 25 other countries, but only 20 have achieved a “significant degree” of palliative care development.

MSPs launched an inquiry into palliative care in July following the defeat of Patrick Harvie MSP’s assisted suicide bill, during which they heard concerns from doctors and patients about shortcomings over the standard and extent of provision offered.

Bob Doris MSP, deputy convener of the Committee, added: “The provision of end of life care is not one that is going to go away as our population ages and more and more people need care at the end of life.

“The Scottish government is already looking into this area as they prepare to publish their framework for action on palliative and end of life care. We hope that this research and our inquiry findings will provide some helpful insight to this.”

Children in Wales

In Wales, a report launched yesterday (15 September) by the Welsh Institute for Health and Social Care, commissioned by the Ty Hafan hospital, found that the provision of palliative care for children differs “considerably”.

The report suggested that from the 1,050 Welsh children that would benefit from specialist paediatric palliative care at any one time, around 10% will die without it.

Due to the relatively small numbers of those in need of care, their needs are incorporated within a wider approach to palliative care. This then leads to “insufficient national strategic attention” in the NHS towards children’s palliative care, meaning clinicians and providers feel like they are “working against the odds” to address its specificities.

The report argued that equating children’s palliative care needs to that of an adult is “misleading” because it is not about the final period of life, but about helping children cope with conditions which may last throughout many years beyond childhood.

Part of the report’s recommendations therefore include giving paediatric palliative care the same “status” as adult care – either by strengthening the membership of the current End of Life Implementation Board to represent children’s needs better or establishing a separate board for paediatric care, mandated by the health minister, Mark Drakeford.

Drakeford welcomed the hospital’s commitment to working with the implementation board and the Welsh government to “drive forward key improvements to end of life care for children and young people”.

Other recommendations included establishing child-focused performance measures to ensure data is collected throughout all age groups, from early life to young adulthood.

The report also draws on a “full and active” involvement of other stakeholders besides the government, including local health boards, relevant academia, charities and health providers.


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