We move on to item 22, which is the short debate, and I now move to today's short debate to ask Mark Isherwood to speak on the topic he has chosen—Mark Isherwood.

Diolch. Can I again begin by saying how much I enjoyed working with you, especially in north Wales, and, personally, how I'll miss you?

I'll move on to my speech. I've agreed to take contributions from Rhun ap Iorwerth and Dawn Bowden at the end of this speech. An estimated 3,600 children in Wales are living with a life-limiting condition. Although approximately 800 of these children have ongoing palliative care needs that require contact with hospital services, only about half of these currently access respite at children's hospices. The incidence and prevalence study recently commissioned by the all-Wales end of life board core group will give us more up-to-date figures about the number of children with palliative care needs, and it is expected that this figure will rise significantly in their report. 

The Llywydd took the Chair.

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.'

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.

I thank Mark Isherwood for the opportunity to say a few words in the last debate in the fifth Senedd, and it's a very important debate. And all I want to say is that we can't overemphasise the importance of the care that's provided in our children's hospices in Wales. And having a robust commitment from the Government to ensure support for this sector is vital. I'm looking forward, hopefully, to increasing that support in the sixth Senedd. 

I want to echo the calls made by Tŷ Gobaith and Tŷ Hafan to establish a lifeline fund, a fund that does exactly what it says, that is a lifeline for the hospices themselves, that supports and maintains their work, and allows the extension of their work, but, vitally, that does that in order to offer a lifeline to the families who are so reliant on their services. There is a lack of respite care for children and this is an opportunity to give a more robust foundation to services in the years to come. 

Thank you, Mark Isherwood, for bringing forward this very important debate, and I just wanted to say how apt it is that we discuss such an important matter on the last day of this Senedd term. And I just want to talk very briefly about a family in my constituency.

I want to talk about Caden. He lives with his mum, Lisa, in Merthyr Tydfil, and Lisa said that her life stopped the day that she had Caden, because she then became his nurse, 24/7. I think a lot of new parents can relate to that, particularly in relation to dealing with the pandemic, but when you add the stress of knowing that this little boy has a life-limiting illness and could be taken away at any moment, then that pressure could be overwhelming. Before going to Tŷ Hafan and accessing respite care, Lisa said that the pressure was overwhelming for her, she wasn't coping and she was in denial about how these things were affecting her. Thankfully, the respite care offered to Caden and his family took that pressure away: it allowed them to catch up with sleep; it gave them a safe space to talk about the challenges that they faced; and Caden came into his own, playing and interacting with other children. It changed everything for that family.

That is why these families refer to the care that they get in hospices, as Mark Isherwood has already said, as a lifeline, and why a dedicated lifeline fund is so badly needed. I note and welcome that a funding review has been announced into hospices, but we know already that the needs of the most vulnerable people in Wales are not being fully met. So, I hope that we can all commit today, as one of the final acts of this Parliament, that a lifeline fund would be an immediate priority for the next Senedd.

The Minister for Health and Social Services to reply to the debate, Vaughan Gething. 

Thank you, Llywydd. I want to thank Mark Isherwood for bringing this important debate to the Chamber and to Dawn Bowden and Rhun ap Iorwerth for their contributions that I have listened to. And I recognise the stories that each of them have told about the direct impact that children's hospices have, not just on the children, but on their wider families and carers as well. I recognise, and I should say, Llywydd, that one of the children's hospices is actually in my constituency. Tŷ Hafan hospice is in Sully, at the southern end of Cardiff South and Penarth. So, before my time as Minister in the Government, I already had some understanding of the incredibly important services that hospices provide to both end-of-life care, but more than that, as I said, the support they provide to patients, families and carers.

My understanding is that every year our children's hospices support around 500 children and young people with life-limiting conditions here in Wales, and that balance of end-of-life and continuing care to children and young people who have care needs arising from life-limiting conditions often takes place over many years. I also do want to acknowledge the invaluable help and advice that our children's hospices provide to families to manage their child's pain and distressing symptoms, but also, as Members have said, the short breaks they're able to offer families, the compassionate end-of-life care support and the emotional support up to and beyond the death of a child. Research does show that the overall number of children and young people with life-limiting conditions has grown, and modelling suggests that those numbers will continue to increase slightly year on year over the next decade. That's partly because life expectancy is increasing, with people living longer due to advances in medical treatments and technologies. As a result, more young people are moving from children's to adult services, and that's been a challenge for those children's hospices, as people they've known for a long time, in managing that transition in their care. 

The Welsh Government is committed to continually improving both adult and paediatric palliative and end-of-life care. We will continue to work with hospices to ensure that they are able to access the support and funding that they need. We currently invest £8.4 million annually to support specialist palliative care services. Much of this, of course, goes to support adult and children's hospices. We've also allocated £9.3 million in emergency funding to hospices throughout the pandemic to protect their core clinical services and to strengthen bereavement support. I think all of us are aware that their usual sources of income from the public have significantly been reduced through this last extraordinary year. In fact, over £2 million of this funding has been allocated to our children's hospices here in Wales. This Government remains committed to working with the end-of-life care board to review funding for hospices, and this work is currently being taken forward.

Following the previous debate in the Chamber on palliative care in February, I issued a written statement updating Members on the wider work that is ongoing across both adult and children's palliative care. That included a stock take by the end-of-life care board, which will establish a baseline of capacity across both adult and children's services. It will also offer consideration on developments required to meet future need. I think that's really the point that's been made here: how do we ensure that funding meets the needs that we understand will take place in the future. The stock take, which will be available later this month, has been informed by a service model to address equitable access for children with life-limiting illness in Wales that has been developed by Dr Richard Hain. He is the clinical lead for paediatric palliative care in Wales. The written statement also confirmed that the stock take will be supported by a paediatric palliative care means assessment, and that will provide robust data on which to plan services for children and young people here in Wales. That work is currently being commissioned.

Last month, I met the chief executives of Tŷ Hafan and Tŷ Gobaith to discuss the 'Family Voices' report and their proposal for a lifeline fund. We had a useful and constructive discussion on the move towards a more sustainable model of funding for hospices—more aligned with peer charities in other UK nations—and of course the importance of respite care. We continue to value the help and support that all of our unpaid carers provide in often emotionally very difficult circumstances. They are an essential part of our health and care system here in Wales. That's why I'm pleased that, yesterday, we launched our new strategy for unpaid carers. That strategy outlines our existing support for unpaid carers and looks ahead to how we can improve support to make sure that all carers have a life alongside their caring responsibilities. It sets out four revised national priorities to be followed by a more detailed delivery plan this autumn. Respite and short breaks are a key area of focus within that new strategy.

The current support for unpaid carers, of course, includes funding within the local government settlement for local authorities to deliver their duty to support unpaid carers under the Social Services and Well-being (Wales) Act 2014. We're also providing £1 million of annual funding to local health boards and their carer partnerships, together with money that is available through the intermediate care fund. Regional partnership boards continue to develop a range of activities, targeting key groups, which can include provision of both direct and indirect support for carers. That includes opportunities for short breaks. We're also providing funding to the Family Fund to provide grants to families and disabled children for respite and short breaks and other items.

This week, I published the national clinical framework. That sets out how clinical services should develop over the coming decade and confirms the introduction of quality statements to set expectations for specific clinical services. The national clinical framework describes how a nationally agreed clinical pathway and national programmes, such as end-of-life care, will support better system planning and quality improvement in the delivery of our services. There'll be a new national programme for palliative and end-of-life care that will be established, again with a high-level quality statement for end-of-life care being developed, and that in itself will significantly raise the profile of end-of-life care within our health boards and bring a renewed focus with accountability to this agenda.

While work is being undertaken, I've extended the existing end-of-life care delivery plan to March next year, together with £1 million of funding to support implementation, while those new arrangements have time to bed in and take proper grip. This extension will allow for reflection on the lessons learned and new models of care that have had to be used during the pandemic, as well as a consideration of priorities by any new Welsh Government. Any new plan for end-of-life care delivery would need to be both driven by clinicians and patient voices and fit with the vision that is set out in the national clinical framework. The work to develop the national framework for the delivery of bereavement care is also continuing, and Members will know that that's now subject to an eight-week consultation. That sets out core principles and minimum standards, and again is supported by £1 million of additional funding. That framework has been overseen by the national bereavement steering group, which has both hospice representation and children and young people's bereavement charities included within its membership.

Finally, I do want to pay tribute to the vital role of all of our hospice staff, both for adults and children, and the work they undertake to deliver palliative and end-of-life care. In particular for this debate, I'd like to recognise the contribution they make to children and young people and their families living with a life-limiting illness. I am tremendously grateful to all of them for maintaining this essential support throughout the pandemic in the most difficult of circumstances. I can reassure the Chamber that this Welsh Government remains committed to ensuring that everyone has access to high-quality adult and paediatric palliative and end-of-life care. We will continue to work with both children and adult hospices across Wales to deliver on that commitment, including the review, and then the results in delivery of the review of funding. Thank you, Llywydd.

I thank the Minister. That now brings us to voting time. We'll take a short break to prepare for the vote.

Plenary was suspended at 19:07.

The Senedd reconvened at 19:15, with the Llywydd in the Chair.