As Chair of the cross-party group on hospices and palliative care in this Senedd, I sponsored and spoke at Hospice UK's Hospice Care Week Senedd event in October 2019, when I said that children's hospices tell me that

'although they operate on a "buy one, get seven or eight free" basis, they've had flatline statutory funding for ten years.'

The following month, I led a debate here, noting the cross-party group on hospices and palliative care's report on inequalities in access to hospice and palliative care. When I said,

'Wales's children's hospices are calling for action on the recommendations made by the cross-party group report and asking the Welsh Government to fund the study that examines the demands for children's palliative care in Wales and the extent to which that is being met.'

A year later, in November 2020, the two children's hospice charities in Wales, Tŷ Hafan and Tŷ Gobaith, jointly published their report 'Family Voices'. This report powerfully presented, loudly and clearly, and, in their words,

'the most important concerns of families who have children with life-limiting conditions.'

They called the children's hospices in Wales 'our lifeline', and said they urgently needed more of the care that only the hospices could provide, especially in relation to respite. The report outlines their proposal to move towards a sustainable model of funding that is more aligned with children's hospice charities in all other UK nations. This funding will give the children's hospices in Wales confidence to sustain and expand their services to better meet the needs of all children with life-limiting conditions, and their families, across the country, in turn helping address Wales's ambition to be a compassionate country. They're calling on all political parties to commit to establishing a lifeline fund for children's hospices in the next Senedd term and, certainly, my party will commit to that pledge. 

Children's hospices play a vital role in the lives of children and families whose worlds are turned upside down by the diagnosis of a life-limiting illness. With families describing children's hospices as their lifeline, the vast majority of families surveyed for the report said that hospices were their only or primary source of respite. However, relying almost entirely on charitable funding, they're only able to meet those needs about a quarter of the time. The message is very clear: families urgently need more support. This is not about COVID funding, for which they're grateful. This is about creating a sustainable funding source so that they're not reliant on the generosity of the Welsh public for 90 per cent or more of their funding, particularly at this time of great economic uncertainty. 

And it's not just about respite. As part of the health and social care ecosystem, they provide a range of services to support children and families at their hospices, at home, in hospital, and in our communities, including family support practitioners, sibling support, bereavement counselling and end-of-life care.

On Monday, I spoke to Nerys Davies from Llanrwst, one of several families who shared their hospice story with me. Nerys's son, Bedwyr, aged five, who now accesses Tŷ Gobaith, was diagnosed with the genetic condition Coffin-Siris syndrome two years ago. The condition causes significant learning disability and is extremely rare, with just 200 children diagnosed worldwide. Bedwyr is also tube-fed, has respiratory problems and cannot speak. As Nerys says, 'That doesn't stop him communicating though. He communicates a lot through actions, so just taking you to the kitchen, to the cupboard, where his snacks are kept. He's a right little monkey.' Looking after a child with a condition like Bedwyr's is a full-time role. As Nerys says, 'It's the little things you really look forward to that other people can take for granted, like being able to sleep at night or sit down and eat a meal in peace, even if it's just beans on toast, or just to have a cup of tea. Hospice respite is so important for us as parents, physically and mentally, because, without it, families end up in crisis. That will end up costing social services and health much more to deal with.' As she also told me, 'We can access Ysbyty Gwynedd, but Tŷ Gobaith has a specialist knowledge for children, and it's a one-in-a-million service for all of us.'