Bryn and Liz Davies from Kinmel Bay first became aware that their unborn baby had a heart condition at the 20-week scan. At the age of two, having already undergone two major operations, Seren was also diagnosed with an extremely rare genetic disorder. Seren loved her respite visits to Tŷ Gobaith. Because she was so happy and being looked after by professional nurses, who knew about and understood her condition, Liz and Bryn felt able to catch up on much-needed sleep and to recharge their batteries, and also to spend time with their son, Iwan. Bryn said, 'We had the reassurance that Seren was in really good hands, and that gave us time to make sure Iwan had a childhood as well.' Sadly, Seren died in January this year, aged just six years old.

Oliver Evans from Acrefair suffered a viral infection as a baby, which has left him with chronic lung disease and kidney problems. To survive, he needs to stay connected 24 hours a day to his own personal oxygen supply, and take a whole regime of different medicines. As his mum said, 'During the COVID lockdowns, when we were shielding, they're always there too, calling me regularly to check on us and offer help and advice, and even coming to talk through the window in full PPE. They even helped us by collecting all Oliver's medication and bringing it to us. I can't start to think what life would be like for us without Tŷ Gobaith Hope House. They really are our lifeline.'

Children's hospices are primarily involved in providing high-intensity lifelong care and support over an extended duration, often many years, rather than the often sudden-onset high-intensity but relatively short-duration care more common in the adult sector. The issue of inequitable funding for children's hospices in Wales is not new. In recent years, they've fallen behind other UK nations in the support available for these most vulnerable families. Children's hospices in Scotland receive half their funding from the state. In England, it's 21 per cent; in Northern Ireland, it's 25 per cent. The Republic of Ireland recently announced it would fund 30 per cent of running costs for their children's hospices. In Wales, the comparable figure is less than 10 per cent.

What has changed is the evidence collated in the 'Family Voices' report, about what impact this limited funding settlement is having on some of the most vulnerable families in Wales. This is why they're calling for a lifeline fund for children's hospices in Wales, to fund additional crucial nights of care at children's hospices for children with life-limiting conditions in Wales. 'Family Voices' were clear: extra nights of nurse-led respite for each child and family, supported by the hospices, are essential to the whole family's mental health and relationships, and saves them from breaking. To allow hospices to develop positive relationships with the family throughout a child's life, establishing a trusted partnership working, and a deeper understanding of the child and family's needs. This in turn will lead to more effective end-of-life care and bereavement support, and better outcomes for the families at the time when they face the inevitable and heart-breaking loss of their child. To reduce unplanned and crisis hospital admissions for children with life-limiting conditions, in turn reducing the burden on the NHS. To ensure our hospices can sustain and expand their care in other areas, such as physiotherapy and other therapeutic support, clinical support and advice, and as part of the broader ecosystem of NHS providers end-of-life care and bereavement support. To give the hospices the financial confidence to plan to expand sustainable services, to reach more children and families, knowing that they can meet their needs without depriving others of essential services. To support local government to meet its statutory requirements in relation to respite care, which cannot be met without a sustainable children's hospice sector. To move Wales from bottom of the home nations table, in terms of funding per capita for children's hospices. And ultimately, to ensure Wales makes a vital step in our national mission to become a compassionate country.

I will finish by quoting the children's hospices themselves, who told me: 'We are proud to be charities. We are not looking for handouts, we're looking for something that guarantees for these families that we will be there for them. We just want to fill the need.' Last, but not least, they said, 'Statutory funding currently stops at our doors. Opening this up would enable us to offer more respite and more services to those who need us.' How could anybody disagree with that? Diolch.