Better Care for Children with Shorter Lives is a good step

We have called for the new intake of MSPs to work together on three key policies, finds Maria McGill

Children's Hospice Association Scotland. Picture: Dan Phillips

The 2016 Scottish Parliament election has marked an important opportunity for CHAS to build on the work that contributed during the last parliament to the Health and Sport Committee’s inquiry We Need to Talk About Palliative Care, as well as the Scottish Government’s recent Strategic Framework for Action on Palliative and End of Life Care.

That’s why, in March, we launched CHAS’ first-ever Scottish Parliament election manifesto seeking support for the improvement of palliative care for babies, children and young people aged 0-25 years in Scotland.

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The document, Better Care for Children with Shorter Lives, offered a blueprint for politicians to put hospice services for this age group at the heart of Scotland’s healthcare debate in the election campaign. We have called for the new intake of MSPs to work together on three key policies that will provide transformative improvement for the care we provide.

Firstly, we need to improve access so that every child who needs palliative care gets the support they deserve. Secondly, we must ensure that families have the widest range of care that meets their individual needs, irrespective of where they live or what their personal circumstances are. Finally, we have asked all MSPs to support that statutory funding for CHAS is brought in line with the 50 per cent of agreed costs rightly provided to adult hospice services.

It was a deliberately ambitious manifesto and was based on the recommendations of the 2015 Children in Scotland requiring Palliative Care (CHiSP) report, which identified the numbers of babies, children, young people and their families in Scotland who need the support CHAS and others can offer. The report showed that there are as many as 15,000 children and young adults in Scotland with life-shortening conditions, much higher than previously estimated. .

Of course, families are at the heart of CHAS and it is vital their voices are also heard in this debate. In April we hosted an election engagement event at Rachel House in Kinross. It was attended by Shona Robison (SNP), Alex Rowley (Labour), Christine Jardine (Lib Dem), Callum Laidlaw (Conservative) and Mark Ruskell (Green) as well as CHAS staff, supporters and families to discuss how each party will address the challenges and opportunities facing children’s palliative care. There was recognition from all candidates that families need, and benefit from, palliative care services, including CHAS, and that we all need to work together to further improve the support for families. We were pleased with the consensus shared across all candidates that statutory funding for CHAS’ services should be increased to bring it in line with that received by adult hospices. Increased funding will help us to reach more children with life-shortening conditions .

I am encouraged by the response our manifesto has received, with every sign that politicians are listening and prepared to help us meet those challenges and to help us deliver a person-centred palliative care service that meets the needs of those who use it. Rest assured, when parliament returns in May, we will continue to engage with the new intake of MSPs and ministers to ensure that the positive sentiment expressed before the election translates into concrete support after it.

The signs are positive that Holyrood continues to see children’s palliative care as a priority and that can only be a good thing for CHAS and the families we support going forward.

• Maria McGill is Chief Executive of CHAS.