Children’s Hospices: Funding

Stephen Kinnock Excerpts

Wednesday 30th October 2024 Westminster Hall

[The Minister for Care (Stephen Kinnock)]

It is a pleasure to serve under your chairmanship, Mr Twigg. I thank my hon. Friend the Member for Liverpool West Derby (Ian Byrne) for securing this vital debate. I know that this sector—this community—is very close to his heart. I thank him for all his work to support it and raise awareness of the issue generally, and in particular for the heroic work he has been doing for Zoe’s Place. I know Zoe’s Place faces an uncertain future, but I also know that my hon. Friend is spearheading its fundraising campaign and has been part of the discussions with its trustees and builders about securing a new site for the hospice to ensure it has a long-term future. I am very much aware of the work that the Liverpool-based Home Bargains is doing, particularly in pledging an incredible £2.5 million towards the campaign. I wish my hon. Friend and the hospice every success in those vital endeavours, and I pay tribute to Home Bargains for its outstanding community spirit.

I thank the many hon. Members who have attended this important debate and contributed so powerfully to it. We have heard some really excellent contributions. Hon. Members have shown how important this issue is to the House. I thank all the people who work in children’s palliative and end of life care, including in hospices throughout the country, which provide vital care and support to those who need it.

We all recognise the importance of palliative and end of life care services, including hospices, which provide personalised care and support at the most difficult times for children and young people with complex needs, and their families and carers. It is estimated that there are more than 86,000 children and young people with life-limiting conditions in the UK, but it is predicted that, as we continue to make medical advances, that number will increase.

Palliative and end of life care for children with life-limiting conditions is provided by a broad range of organisations and professionals across multiple settings, including primary care, community care, hospitals, hospices, educational settings and children’s own homes. This system-wide approach to providing palliative and end of life care should be sufficient to ensure that the local offer to patients is personalised, of high quality and sustainable. The majority of palliative and end of life care is provided by NHS staff and services, but we recognise the essential part that voluntary sector organisations, including hospices, play in providing support to people at the end of life and their loved ones.

Children’s hospices are a vital part of that system-wide approach, because they provide a wide range of health and care support to meet the physical, emotional, social and, indeed, spiritual needs of children, young people and their loved ones. Care is often provided by a multi-disciplinary team, and often in collaboration with statutory services, to ensure that the entire family is supported.

The support provided by hospices can include practical advice and information; short breaks or respite; specialist therapies such as physiotherapy, art therapy or play therapy; 24/7 end of life care; and bereavement support. Short breaks are a key part of a range of provisions that support disabled children and their families. They can include the provision of day, overnight and weekend activities for children and young people, and can take place in the child or young person’s own home, the home of an approved carer, or a residential or community setting.

Local authorities have a statutory duty to assess the social care needs of disabled children and young people, and to provide respite care where necessary. Where it is appropriate, local authorities can fund respite care provided by hospices, either as a short-term stay or as a service that the hospice team provide to the child or young person in the family home. Local authorities and ICBs regularly liaise to plan and commission the most appropriate package of respite care for children and young people with life-limiting or life-threatening conditions in their area.

The Government do not monitor the use of social care for children with palliative and end of life care needs, but local authorities are required to publish a local short breaks duty statement, which shows what services are available, how they respond to the needs of local carers and how they can be accessed, including any eligibility criteria. Local authorities must consider the needs of local parents and carers when preparing their statements, and they must review them regularly.

Palliative care services are included in the list of services that an integrated care board must commission. That promotes a more consistent national approach and supports commissioners to prioritise palliative and end of life care locally. To support ICBs in that duty, NHS England has published statutory guidance and service specifications, which include specific reference to ensuring that there is sufficient provision of specialist palliative care services and hospice beds, as well as future financial sustainability.

Most hospices are independent charitable organisations that receive some statutory funding from the NHS.

[Wendy Morton]

If funding for children’s hospices is to go through ICBs—I hope the Minister will take account of the sector’s view—what assurance can he give us that it will actually go to the children’s hospices? I fear that if we are not careful, we will pit one healthcare sector or charitable sector against another, and that would not be in anybody’s interest.

[Stephen Kinnock]

The right hon. Lady is absolutely right: funding that is earmarked for palliative care must go to palliative care. There is statutory guidance from the NHS, and it is vital that we continue to liaise with ICBs from the centre, to ensure that the allocated funding goes where it needs to go. If she is aware of cases in which that funding is not going where it should go, she should make representations; I am happy to receive a letter from her on the issue.

The amount of funding that each charitable hospice receives varies both within and between ICB areas. That funding will vary depending on demand in an ICB area, but will also depend on the totality and type of palliative and end of life care provision from both NHS and non-NHS services, including charitable hospices, in each ICB area. There are inequalities in access to hospice services, especially for those living in rural or socio- economically deprived areas. That is why including hospices as part of a system-wide approach is so important.

I understand that charitable hospices value their independence and autonomy, which allow them the freedom to provide services beyond the statutory offer, which is one of the wonderful parts of hospice care. That independence also gives a sense of shared purpose, in which the community cares for the hospice, and in turn the hospice cares for the community and is something to be cherished. That is indicative of the compassion that is found in hospices and communities all over the country.

In addition to ICB funding, at a national level, NHS England has supported palliative and end of life care for children and young people through the children and young people’s hospice grant, totalling £25 million in ’23-24. While ’23-24 marked the final year of the grant in its previous format, in ’24-25 NHS England continued to provide £25 million of funding for children and young people’s hospices. A prevalence-based model is used for that funding, which supports the move away from a traditional model of bed-based funding, better reflecting population needs. In ’24-25, that funding was transacted by ICBs on behalf of NHS England for the first time, rather than being centrally administered. I am aware that the shift to an ICB-transacted model for ’24-25 has not been as smooth a transition as we in the Department certainly would have hoped. We are working closely with NHS England to resolve any remaining issues with the ’24-25 funding, and to learn from what did not work so well this year.

We, alongside NHS England, absolutely recognise the importance of sustainable funding for the palliative and end of life care sector, including hospices, and we will consider the future of children’s hospice funding in the context of Budget discussions. I have absolutely heard the representations by hon. Members on both sides of the Chamber today about the need for the Government to maintain the £25-million grant, and I assure hon. Members that I am working very closely with NHS England to get that confirmed as a matter of urgency.

[Dr Johnson]

The Minister talked about maintaining the grant, but does he recognise that many hon. Members have also raised the increasing costs that hospices are facing? Will he look to not just maintain the grant but increase it?

[Stephen Kinnock]

We are certainly looking at all those issues in the round, including ensuring that the grant is sustainable and that there is a real-terms financial input to the system. We are working on that as a matter of urgency. I totally recognise and understand why the sector needs certainty and stability; it is very difficult for hospices not to be sure what is happening after this in-year position.

The 2010s were a lost decade for our health and care services, which now too often are not there when we need them. That is also true for hospice care, where we see a postcode lottery for services across the country and variation in quality and access. Hon. Members will know that we have committed to developing a 10-year plan to deliver an NHS and care system that is fit for the future, by driving three shifts in the way that care and health services are delivered.

We will be carefully considering policies, including those that impact children with palliative and end of life care needs, with input from the public, patients, health staff and our stakeholders as we develop the plan over the coming months. That engagement process was formally launched last week, and I strongly encourage the sector, including hospice providers, service providers and their families, and indeed every parliamentarian in this Chamber, to engage with that process: please go on to change.nhs.uk and make your voice heard. That will allow us to fully understand what is not working as well as it should, what the solutions are, and where the opportunities are for the future.

One of the three strategic shifts that our 10-year health plan will deliver is the Government’s determination to shift more healthcare out of hospitals and into the community. Community health teams play a vital role in supporting children and young people with complex health and care needs to live as well as possible, providing proactive care and preventing exacerbations and hospital admissions where possible. That shift from hospital to community includes our commitment to roll out neighbourhood health services to ensure that patients and their families receive personalised care in the most appropriate setting in their community, and indeed as close as possible to home. Palliative and end of life care services, including hospices, will have a major role to play in the fundamental shift from hospital to community, and in shaping that shift.

Additionally, the Department, through the National Institute for Health and Care Research, is investing £3 million in a new policy research unit in palliative and end of life care. That unit launched in January 2024 and will build the evidence base on all-age palliative and end of life care, with a specific focus on inequalities. In closing, I thank once again the hon. Member for Liverpool West Derby for securing this vital debate on children’s hospice funding. I again express my heartfelt thanks to all those who support children, young people and their loved ones when they need them most.