Hospices (Children and Young People)

John Glen Excerpts

Wednesday 18th December 2013 Westminster Hall

[John Glen (Salisbury) (Con)]

It is a pleasure to serve under your chairmanship for the first time, Mrs Osborne. I join other hon. Members in applauding my hon. Friend the Member for Pudsey (Stuart Andrew) for securing the debate.

I would like to make some observations and reflect on the journey that I have been on this past year in engaging with this subject, starting with a question to my right hon. Friend the Prime Minister on 5 December last year. In that question, I raised the issue of Naomi House hospice, which serves Wiltshire, Hampshire and Berkshire and does amazing work, along with all the other hospices mentioned this afternoon. Naomi House hospice also has a facility, opened in recent years, for young people in the 18-to-25 age group, reflecting the fact that, previously, young people with some of these conditions did not survive for very long, but now they have a greater life expectancy. The facility is adjacent to the Naomi House site, and they work together.

Professor Khalid Aziz, who was the chairman of Naomi House hospice for well over 20 years, observed that he received funding from three different primary care trusts, as they then were—they are now clinical commissioning groups. Wiltshire, which is my local authority area—it was the PCT at the time—had agreed a very simple tariff arrangement whereby it gave £308 per night for any child who was staying at the hospice. Naomi House had not managed to secure a similar agreement with Hampshire or Berkshire. It therefore relied on a share of the grant from the Department of Health and some other statutory local authority funding, but, as with all hospices, it fundamentally relied on raising money through fundraising activities. I think that the figure was about £4 million a year.

A little time passed and then, on 13 February, I, along with Professor Aziz, had a meeting with the Prime Minister. He understood the issue very well. He was aware of the review that is being undertaken of palliative care funding across all age groups, and we went away greatly encouraged. A few more weeks passed, and I was a little concerned that progress was not being made. I sensed that there was some reticence to separate the issues about children’s palliative care and the palliative care review that is under way. In the end, we had a meeting on 19 June with the Minister of State, Department of Health, and we set out our concern that the very simple arrangement that works so well for Wiltshire, securing a guaranteed amount of funding, should be rolled out across the children’s hospice movement as the way forward. There was general agreement, I think, among the officials at the meeting that that amount of money was the appropriate amount.

I came up and had another meeting on 29 July. That time, I met Professor Alan Craft, who is the head of children’s health, and Dr Bee Wee, the national clinical director of palliative care, and they took me through all the work that is being done to understand the profile of need, how we calibrate what the tariff would look like and what conditions would go into it. I recognise that that is a very difficult piece of work and we definitely need it to be data led, as I think the right hon. Member for Rother Valley (Mr Barron) mentioned, but we were told that this work was going to progress and basically it would happen in 2015.

I was somewhat disturbed because the system that works so well for Naomi House could easily be rolled out. It is a very straightforward arrangement whereby a CCG is engaged with a local hospice and has said, “This is a contribution to the costs.” We know that there is a significant differential between the 38% funding that adult hospices receive—38% of their costs—and the 10% to 15% that children’s hospices receive, so this was a very simple measure.

I had a meeting on 15 October with my right hon. Friend the Minister for Government Policy. Then, on 25 November, I received a letter that said that the Government would include the local commissioning example in their national tariff document. Basically, the process that the Government are going through to review the whole arrangement for palliative care funding would continue and we would wait for the outcome. In the meantime, although Wiltshire and Naomi House would be put on the table as an example, it would not be presented in a compelling way so that it could be taken up as, I think, a very reasonable interim measure.

I am somewhat disappointed by that final response after all those meetings and all that dialogue, because what is needed sometimes is yes, rigorous analysis of the facts and the issues, but also promotion of quick solutions that would work in a very helpful way—that would ease the enormous burden on fundraisers in making up the gap in funding. There is great support in our communities for children’s palliative care. I sometimes feel that because of the very emotive nature of the work done by children’s palliative care providers and the fact that it pulls at the heart strings, there is always a sense that money will be found for it. I plead with the Minister to accelerate that process if she can, because we need to address the funding gap and ease some of the considerable pressure on providers.