Care that goes above and beyond

Written by: Mona Vaghefian, Policy and Public Affairs Manager, CHAS

Published: 31/03/2021

Marie Curie and CHAS logo

Mona Vaghefian, Policy and Public Affairs Manager at CHAS, covers the joint Hustings with Marie Curie earlier this month.

How do we ensure that everyone with palliative care needs receives “care that goes above and beyond”?

 In March, CHAS and Marie Curie hosted a hustings on dying, death and bereavement.

The need to discuss these topics openly – and work towards improving the experiences of people living with a terminal or life-shortening condition – has never been more pressing. Marie Curie research has shown that by 2040, up to 10,000 more people will be living with and dying of a terminal illness, many of them with multiple health conditions. 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.

The event was attended by a panel of politicians from each of the main parties, but it was bereaved mum Elizabeth Anne Holmes who struck right to the heart of the matter with her opening address.

Elizabeth Anne’s son Lee (this link will take you away from our website) – an active, footballing, go-kart racing boy – was aged just 12 years old when he was diagnosed with Burkitt Lymphoma. Lee was cared for during his final days at CHAS’ Robin House hospice in Balloch, and Elizabeth Anne described how the care the whole family received was “above and beyond”, describing how “the Robin House nursing staff met us and all our needs with open arms and a warm heart, and held us all together for as long as we needed them.”

During the hustings, Elizabeth Anne asked politicians how they could help ensure that everyone across Scotland has access to the best possible care at end of life, when and where they need it, including bereavement support for families after the death of a loved one.

This was a theme that threaded throughout the event, and led to a number of issues being discussed, including the following 5 key themes:

Sustainable funding for hospice services

Ensuring sustainable funding for third sector hospice care providers was something politicians across all parties unanimously supported. Hospices provide specialist palliative and end of life care across a range of settings, and the choice and care they offer needs to be adequately resourced.

A new national plan

With a previous strategy now come to an end, a new national plan for palliative and end of life care -that covers babies, children and young people as well as adults – was discussed. There was widespread agreement and support for such a plan.

Spotlight on social care

The importance of ensuring everyone is able to receive excellent quality care, irrespective of setting, was recognised by all. While there were some mixed views from panelists on the detail of the recommendations set out in the Scottish Government’s Independent Review of Adult Social Care, there was widespread agreement that national standards and fair pay and conditions are very important components for the future of social care in Scotland.

Better support for carers after bereavement

It was widely acknowledged that better support is needed after bereavement, particularly for family/ unpaid carers. Panelists expressed their support for extending Carers Allowance payments for carers following a bereavement from eight weeks to six months, with many noting that practical support for carers to re-join the workforce, including access to education and training, should be a priority – particularly for young carers.

Building back after the pandemic and public conversation around dying, death and bereavement

The panelists acknowledged that the pandemic has brought dying, death and bereavement to the forefront of society in a way previously unimaginable – while also recognising the role the third sector has played in adapting to support people and communities with flexible models of care. If we’re looking to build back better after the COVID-19 pandemic, however, a greater public openness about these issues, leading to greater choice and the right to a good death, will be important.

Thank you to all the candidates who took part in the hustings – Alex Cole-Hamilton (Scottish Liberal Democrats); Alison Johnstone (Scottish Greens); Donald Cameron (Scottish Conservatives); Fulton MacGregor (SNP) and Lewis MacDonald (Scottish Labour).

As one candidate noted, citing wording from the CHAS manifesto “When time is precious, you have to act fast. Let’s get it right, now”. It was heartening to see that there was significant political consensus across all the candidates, who acknowledged that this is an issue that transcends party lines and committed to working together in the next parliament to progress the issues raised. CHAS look forward to working with the next Scottish Government and Scottish Parliament to see these commitments delivered.

Read CHAS’ manifesto in full at CHAS.org.uk (this link will take you away from our website).

Read Mare Curie’s manifesto in full at mariecurie.org.uk (this link will take you away from our website). The charity is urging everyone to write to their local candidates ahead of the Scottish Parliament Election to ask them to sign a pledge to make palliative care a much higher priority for the next Scottish Government. Email your candidates at  https://www.mariecurie.org.uk/scottishparliament (this link will take you away from our website).

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