Helen and Douglas House Hospice

Layla Moran Excerpts

Friday 11th May 2018 Commons Chamber

[Layla Moran (Oxford West and Abingdon) (LD)]

I am so grateful that the House has allowed me to speak about funding for the Helen and Douglas House Hospice in Oxford. It is an incredibly important matter, not least because Helen House was the world’s first children’s hospice, starting the children’s hospice movement that spread around the world. It opened in 1982 to provide a home for terminally ill babies, children, young adults and their families. In 2004, Douglas House was opened by Her Majesty the Queen to provide care for 16 to 35-year-olds, not just in Oxfordshire but throughout the whole south-east. It provides specialist services for young adults, bridging that crucial gap between children’s and adult hospices.

I am sorry to say that we have to be here today because those services are under threat. Indeed, 48,000 people signed a local petition—that is extraordinary for a local petition—calling on the Prime Minister to intervene to stop the closure of Douglas House and to make sure that those services are properly funded. That is a staggering amount of public support and I hope that the Minister takes that to heart today.

Let me start by outlining the value and importance of Helen and Douglas House. I think that it is best summed up by my constituent Alison, who is a volunteer in the hospice. She said:

“Helen and Douglas House really is one of a kind, providing a lifeline both to those needing end of life care, and their families—from befriending and home support services, to The Elephant Club for bereaved siblings; to the annual remembrance service. Helen and Douglas House brings these families together, providing a support network to help them enjoy the time they have left together, and to face the future afterwards.”

Families rely on the work of Helen and Douglas House and they are indebted, as we all are, to the dedicated army of staff, volunteers and fundraisers who go above and beyond, and also to the nurses and the medical team.

[Robert Courts (Witney) (Con)]

The hon. Lady is making a very powerful and moving speech. Helen and Douglas House is not far from my constituency—it borders my constituency. I have visited it, and I am sure that she has, too. Perhaps she will agree with me that it is an oasis in the centre of Oxford. I wish to pay tribute—as I am sure that she does too—to everybody who works there, to all the volunteers, to the extraordinary therapy provided for the patients and to the support network that is provided for the family.

[Layla Moran]

I very much thank the hon. Gentleman for his intervention, and completely endorse what he says. The care that the hospice provides is world class and one of a kind. With the closure of Douglas House—I will get to this later—we will see hospices across the area having to deal with the extra need. Helen House is truly unique. I wish to pay tribute to some amazing fundraising efforts. Paul Townsend of Abingdon and Stuart Ryan of Farringdon are looking to raise £92,000 for Helen and Douglas House, and also for Sobell House in Oxford, with a tour of 92 football grounds in the 2018-19 football season—I suspect that there may also be an ulterior motive to their fundraising efforts, but I wish them well. Golfer Eddie Pepperell from Abingdon will wear a Helen and Douglas House cap for the televised BMW PGA championship in Wentworth later this month. He has also raised £7,500 via JustGiving.

Local businesses, including Stagecoach, radio station Jack FM—of which I am a huge fan—and Reed recruitment are just a few examples of the local businesses that have taken Helen and Douglas House into their hearts. The strength of feeling in the community across the whole of Oxfordshire is palpable.

[Bambos Charalambous (Enfield, Southgate) (Lab)]

Does the hon. Lady agree that it is a real shame that many hospices, such as the North London Hospice in my constituency, have to resort to fundraising to provide palliative care, which is so massively under-resourced with the NHS?

[Layla Moran]

I absolutely agree with the hon. Gentleman. There is a more systemic issue that I will get to later in my speech.

I now wish to tell the story of Sienna, who very much exemplifies one of the children and many of the families who we know use Helen and Douglas House. She is six years old and lives in Wootton with her mum, Kay, and dad, Andy. Her brother, Jamie, is 13 and sister, Ella, is 12. Sienna was born with Dravet syndrome, a rare and catastrophic form of epilepsy. Kay said:

“Being Mum for Sienna is like having a new-born baby for life. She cannot do anything for herself and therefore requires 24-hour care and monitoring. Her health is fragile and she is constantly dealing with illness and seizures, which are worse when she gets a temperature. Looking after a child like Sienna can consume much of my time, so having help is essential so that I can also be Mum to my other two children.”

She goes on to say:

“When Andy and I need a few days to spend time as a couple, or do something active with Jamie and Ella, Helen and Douglas House provides Sienna with a welcoming and safe place to go. Helen House is sensitive to the needs of our family and in that way it feels a lot like coming home; a safe haven. It makes me feel normal again and able to carry on.”

That very much exemplifies what hospices across the country do.

Let us get to the crux of the issue, however. The hospice is now facing the closure of Douglas House. Why is this happening? First, we have a situation where more babies are being born earlier and therefore many of them have more severe issues, and also medical advances mean that they are living longer. That is fantastic, but there is a knock-on effect in the wider system because demand is increasing. This is a third-sector organisation that, when it was first set up, never wanted or asked for money from the NHS but now finds itself providing services that the NHS itself should be providing, and facing a shortfall of £3.6 million. It brings in a huge amount—£52.3 million a year—but its expenditure is £55.9 million.

That is why we are now facing the closure of Douglas House, with a loss of care for 90 patients and 60 job losses. These are specialist nurse and medical teams that I fear would disappear from our ecosystem in Oxfordshire and have to end up going elsewhere. The hospice is also considering a review of its 37 excellent shops, which I often shop in. It currently receives zero funding from the local clinical commissioning group. That is the crux of the issue. Some beds are brought in by the NHS—roughly 12%—but zero per cent. of its funding comes from the CCG. I would argue that that is partly why the deficit has built up over time. In a way, the NHS is abdicating some of its responsibility towards an organisation that has been very strong at fundraising in the past but is now struggling and still being asked by the NHS to provide this service.

It is worth noting with cautious optimism that in more recent times—literally the past couple of weeks—the CCG has told the hospice that it might be able to give it some money, in the order of £100,000. However, hospices in nearby areas such as Buckinghamshire and even Birmingham that are doing similar things are being funded in the order of 30% to 37% rather than the 12% that Helen and Douglas House gets from the NHS.

I would like the Minister to address some of the bigger systemic issues. Of course, if there were a magic pot somewhere that she wanted to announce, that would be lovely, because we desperately need the money, and if we could in any way avoid the closure of Douglas House that would obviously be the best option. Will she explain why children’s hospices are funded less than adults’ hospices? That is the top ask. We need to ask ourselves whether that is fair. Together for Short Lives, the fantastic charity that does work in this area, is calling on the Government to grant £25 million a year to bring in funding parity. I think that is a fair ask given the amount of work that the hospice does. I should point out that the Scottish Government have already earmarked £30 million over the next five years to do just that. I know that nobody in this place ever wants to fall behind the Scots, so let us make sure that we get this right.

In 2016, the Government’s response to the review of choice in end-of-life care stated that to support high quality personalised care for children and young people, commissioners and providers of services must prioritise children’s palliative care in their strategic planning. If that is true, then why did we get to the point where Oxfordshire’s Helen and Douglas House received nothing from the CCG? While I appreciate that the Government are making the right noises on this, I am asking for some clarity on oversight. Are they checking and challenging the CCG, because I am not convinced that that has happened so far? It really should not take a petition of 48,000 people to get to the point where the CCG is finally starting to listen. That is ridiculous. Where else in the country is this happening? We have amazing organisations falling by the wayside.

There are some more specific things about Helen and Douglas House that I would like the Minister to address. The first is communication. The Government need to take some ownership of this. On 14 February, I wrote to the chief executive of Oxfordshire clinical commissioning group about the future of Helen and Douglas House. I was met with quite a lengthy waiting time and got a response—clearly a “cut and paste”—from the community and engagement team on 27 March. Their main argument was that Helen and Douglas House has the capacity to bid for contracts. Helen and Douglas House told me that the contract it was being asked to bid for was so vast, and the sort of care it was being asked to provide was so huge, that it did not feel it was the right fit for that pot of money.

It is a proactive organisation, so it reached out to the CCG and said, “We can’t bid for this”—in fact, Barnardo’s now has that contract—“but what we can do is this, that and the other. Can you help us? We’re providing a great service,” but it received radio silence from the CCG, with delay after delay. It had some meetings where it felt things were going forward, and then nothing happened. That lack of communication and lack of accountability for what the CCG does is the crux of what I would like answered today. If excellent organisations like Helen and Douglas House, which has a long-standing and illustrious history, are not able to engage with the CCG, where else is that going wrong, and what handle do the Government have on that? I welcome what the CCG has now done, but are we sure there are not hospices elsewhere where that is happening?

The last point I would like to make is about the false economy of not providing this care. This is critical. The intensive care nurses in the John Radcliffe, when speaking to the chief executive, said, “These are the children on the wards who we worry about the most.” These are the sickest children in our society, and if they are not being given that care before, and if the families are not properly equipped to do what they need to do to prevent these children from going into intensive care, we all know how much that costs. There is a cost argument. The children obviously would much rather not have to go into intensive care; they would rather have the care at home, or if their parents have respite, they can give that care properly. If we end up not spending the money, further down the line, all we will end up with is NHS trusts having to provide the intensive care for these children.

There is a disincentive in the system, because the money for NHS intensive care comes from the trusts, but the money for hospices comes from the CCG. It is clear to me that that is where the bottleneck lies. That communication is not working freely. The overall picture is not working well. We saw a move from Government, with the name change to the Department of Health and Social Care, earlier this year, towards more joined-up thinking in this area. However, I want to know what the Minister has been doing to unblock this specific issue. I was a little disappointed that, when I asked a written question on this matter, the Minister wrote back saying that there had been no discussions at all with Helen and Douglas House, despite the fact that it has been raised in this place and the other place.

We are now getting some traction, but £100,000 is not enough. Helen and Douglas House has asked for £215,000, which would bring parity with neighbouring counties. What can the Minister do to unblock this? What can she do to ensure that in future, other hospices like Helen and Douglas House do not have to make a massive media ruckus and go to their MP to get an Adjournment debate, and that they can provide the care that we desperately want the most poorly and vulnerable children in our society to receive?