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Children’s Hospices: Funding

Volume 834: debated on Tuesday 14 November 2023


Asked by

To ask His Majesty’s Government whether they are on target to provide £25 million for children’s hospices for 2023-24; and whether they intend to repeat this on an annual basis uprated in line with inflation and allocated directly to each children’s hospice.

The Government and NHS England recognise the vital role that hospices play in delivering high-quality, personalised palliative and end-of-life care for all ages. The children and young people’s hospice grant plays an important role in enabling that to happen. As such, grant allocations of £25 million have been paid in full to hospices in 2023-24. A further £25 million has been announced for 2024-25, with the funding allocation mechanism currently being worked through by NHS England.

My Lords, I am grateful to the Minister. He will be aware that 80% of the income that goes to children’s hospices comes from fundraising. With the cost of living problems we have at the moment, that is increasingly difficult, so the £25 million grant is a lifeline. Do the Government accept that making this grant permanent, so that hospices know about it going forward, and uprating it by the rate of inflation will give enormous help in stabilising the finances of children’s hospices?

First, I absolutely recognise the noble Lord’s point that 80% of hospices’ funding comes through charities, so they represent an excellent resource for us. That is why we are pleased to confirm the £25 million for next year. The debate, which I am sure we will get into more later, is about making it a direct grant. We generally think that ICBs are best placed to take control of health services in their area, and it is about trying to get the right balance between making direct grants for the provision of places and saying that ICBs know what is best for their area and should cater for them in that way. I would be happy to talk further about that balance with the noble Lord.

My Lords, should we not be ashamed that care for children at the end of their short lives is funded by village fetes, cake shops and elderly marathon runners instead of by central government? The total cost of 34 children’s hospices is £130 million and the totality of it should be funded centrally, not as unguaranteed £25 million grants every year. We should be ashamed of this.

To put this into context again, only about 6% of children’s deaths occur in hospices, so 94% happen in other settings. I want to get that right for the context of all this. There are many parts to this; hospices are quite close to my heart and I want to donate to them charitably. There are many parts of society where we think there is a role for charities to add value and enhance the system, rather than their being crowded out by government-funded sources all the time.

My Lords, I am grateful for this announcement. We have a wonderful hospice in Worcester, the Acorns Children’s Hospice, which does extraordinary work with young people. Does the Minister accept that, although a minority of children die in hospices, the number of children cared for by them greatly exceeds that. Their work is invaluable.

Yes, it is. I was surprised to find out that, for instance, the number of young people living with life-limiting conditions was 33,000 in 2001-02 and is over 90,000 today. That is the case because we generally have much better treatments for those children. That is obviously good news, but it means that lots more people with such conditions have to be cared for and we need to make sure that they are.

My Lords, as a former trustee of Hope House Children’s Hospices, I draw the Minister’s attention to the clinical guidance published by NICE, which showed that for every £1 spent by the public sector in supporting end-of-life care for infants, children and young people, non-cash savings worth almost £3 would be released back into the NHS. Will the Government commit to provide, ongoing, the necessary funding to sustain hospices and maximise the benefit for the NHS and, most of all, for the dependent families?

As I said, we absolutely agree on the vital role of it all. The amount of funding that we placed there a few years ago was £15 million, so it has gone up by about 67%. It is excellent value for money, and it is excellent that we managed to get the care and energy of the voluntary sector into it. That is the model that I think we all believe in.

My Lords, I declare an interest as the joint chair of the all-party group whose secretariat is Together for Short Lives. The thing that is of great difficulty in this sector is uncertainty. In the interests of permanence and certainty, will the Minister include a dedicated long-term strategy in the Government’s mandate to NHS England that addresses the palliative care needed for children and young people so that the sector can have an assured future?

My noble friend is correct; it is a long-term part of the statutory requirements of all ICBs to provide palliative care, so it is written into that NHSE mandate. It has to review all 42 ICB arrangements, and we make sure that in each setting they have the 24/7 care set-up required of them.

My Lords, following on from the Minister’s answer to the noble Lord’s supplementary question, most integrated care boards will have only a very small number of residents who need services from local children’s hospices. Given that, it raises concerns that spending on those services will not be prioritised at that very local level. Does the Minister accept that there is a case for integrated care boards to band together at the regional level and fund hospice services that way?

Yes, absolutely. Again, there is a balance we are trying to get over here, because we are all agreed on the importance of what they are trying to do. At the same time, we believe that ICBs, generally, are the right people make provision at a local level, because they know best what is required in their area. Clearly, where it makes sense for them to band together, that has to be sensible.

My Lords, most of us will have the amazing work of our own local children’s hospice in mind today in response to this Question. Ours in Surrey is the care and support that the Shooting Star Children’s Hospices provide for babies, children and young people with life-limiting conditions, and their families. We fully support the children’s hospice grant going directly to a hospice. It is the most cost-effective way; it overcomes the patchy performance of many ICBs and their CCG predecessors on hospice funding, and it avoids hospices having to engage with multiple ICSs when their services go across areas. What actions are the Government taking to ensure that ICBs meet the NICE standards in supporting children’s hospice care and against ICBs that have made no attempt to access the current grant arrangements?

As I mentioned, it is a statutory requirement for every ICB. NHS England is responsible and is reviewing those arrangements in all 42 trusts. At the same time, this is an element which the CQC follows up to ensure that care is in place. I echo the House’s feelings that the results of the voluntary sector and the hospices are excellent. We need to ensure they get the proper support.

My Lords, I declare my interest as having set up training in paediatric palliative medicine in the UK and internationally. Together for Short Lives data shows that about £15,000 per annum is spent on children and young people in the active caseload, which is probably almost 10,000 young people having care from hospices, some of them for many years. Given that there are service specifications and guidelines, can the Minister be a bit more explicit as to how those are monitored to ensure that service specifications really do meet the needs of the children and that hospice services are integrated with local paediatric services, given that such children often have multiple and complex needs?

As I said, it is a responsibility for all of them, but I will happily give the noble Baroness a detailed reply so that it is very clear exactly what they are doing to make sure that happens.

My Lords, a bazillion years ago when I was the Scottish Health Minister pre-devolution, we introduced a pound-for-pound match-funding system for hospices. That worked brilliantly because it meant that hospices could raise more cash and the Government provided support for organisations that depend on being voluntary. Would my noble friend consider doing that, not just for children’s hospices but for the movement as a whole, which does such fantastic work?

My noble friend makes an excellent point. My understanding is exactly in this vein: £7 million was paid in match funding to children’s hospices in exactly the way he mentioned. As to whether we should be doing that more widely, it is a good idea, and I am happy to take it away and come back on it.