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How the party political manifestos pledge to help children who die young

With the Scottish Parliament elections fast approaching on 6 May, all eyes have been on the party manifestos - as political parties set out their priorities for the 5 years ahead.

Here at CHAS we have of course been paying particular attention to what parties have been saying about children's palliative care, and in particular, looking to see how the priorities we highlighted in own manifesto have been received.

CHAS' manifesto - Time is Precious, Time to Act - was informed by the voices of children and families, calling on politicians of all parties to stand alongside the 16,700 families across the country facing the terrifying heartbreak that their child may die young.

It set out our vision that children with complex palliative care needs should have timely access to high quality care and support, where and when it's needed, equally across Scotland. And to achieve this, we set out 5 key things that need to happen.

So, to what extent have these priorities been reflected in the party manifestos? Let's take a look at each of them in turn.

Sustainable funding

Thanks to support from the Scottish Government and COSLA, and the generosity of our donors, we provide care, without charge, to a growing number of children who need our care - but we're not able to reach all of them yet. For every £1 of statutory funding we receive, CHAS is able to generate £6.24 of public value in return. But at a time when demand for our expertise is rising, we need continued sustainable funding over the coming 5 years.

What we called for: Continued sustainable funding for children's hospice care in Scotland over the next 5 years.

What the parties said: There are clear commitments in three of the manifestos to continued funding for children's hospice services. The SNP has pledged "annual public funding of at least £7 million" to ensure children's hospice care is sustainably resourced; the Scottish Conservatives will "maintain funding for children's hospices"; the Scottish Labour manifesto commits to "maintaining funding for specialist hospice and community care for children"; while the Scottish Greens will ensure "children's hospice care is supported".

We are delighted to see the importance of a sustainable funding agreement for the unique Scottish model of children's hospice care recognised in this way - it will make a huge difference to the children and families who need us the most.

A new national plan

A Strategic Framework for Action on Palliative and End of Life Care was published in the last Parliament, and included children's as well as adult's palliative care - helping to drive forward the policy agenda for children with complex care needs.

What we called for: A new national plan for palliative care in Scotland that addresses the needs of children.

What the parties said: The majority of the parties have committed to a new plan. The Scottish Greens' plan would include "specific measures to ensure the needs of children are met and children's hospice care is supported", while Scottish Liberal Democrats commit to a plan that "accelerates the missed objectives of the previous plan". The Scottish Conservatives pledge that the plan will "ensure everyone can access the support they need" across all care settings, and the SNP talks of "a national strategy for palliative and end of life care that takes a whole system, public health approach".

We look forward to actively contributing to the development of the next national plan for palliative care in Scotland, ensuring that it specifically addresses the needs of babies, children and young people.

More specialist training for health and social care staff, to meet increasingly complex needs

What we called for: Support for the development of a dedicated training programme for paediatric palliative medicine in Scotland, and for the development the development of a Specialist Practitioner Qualification, at Masters level, for Community Children's Nursing.

What the parties said: While neither of these very specific calls were reflected in manifestos, from our discussions with politicians of all parties, there is wide recognition of the vital role of the workforce in delivering palliative care.

Bespoke support for children with complex needs living into adulthood

We know that transition from child to adult services is often a stressful time for young people with life-shortening conditions and their families.

What we called for: A national, standard pathway for children with complex medical needs transitioning between child and adult services.

What the parties said: Again, this priority was not reflected in any of the manifestos, but we were heartened to see cross-party support for the Disabled Children and Young People (Transitions to Adulthood) (Scotland) Bill in the last Parliament, and hope to continue conversations on this agenda in the coming session.

Better financial support for struggling families, including after a child dies

Children with a life-shortening condition are 50% more likely to be living in the most deprived parts of Scotland compared with the least deprived.

What we called for: Extended eligibility for the Carer's Allowance and Carer's Allowance Supplement for up to six months after the person's caring role comes to an end (extending from the current eight weeks), and support for carers to re-enter the workforce.

What the parties said: This call - initiated by Reform Scotland, Sue Ryder and Marie Curie - was another widely adopted across the parties. Scottish Labour and the Scottish Conservatives commit to extending Carer's Allowance from the current 8 weeks to six months post-bereavement; the SNP commits to extending it to 12 weeks post bereavement; while the Scottish Liberal Democrats don't put a timeframe on the extension.

We are hopeful that this widespread political support will translate into meaningful policy change for bereaved carers.

In all, we're hugely encouraged to see support from across the spectrum for children with life-shortening conditions and their families. But this is just the beginning. We look forward to working with politicians across all parties to bring these commitments to life in the coming Parliament.

After all, when time is precious, you have to act fast.

If you want to talk to someone about your own situation or find out more about our services, please get in touch: