Support for Life-shortening Conditions

Antoinette Sandbach Excerpts

Tuesday 7th June 2016 Westminster Hall

[Antoinette Sandbach (Eddisbury) (Con)]

I am very grateful to my hon. Friend the Member for Pudsey (Stuart Andrew) for securing this debate, which, as Members know, is on an issue that I feel very strongly about. It was heartening to hear about the work of the Hope House hospice that serves my constituents, although it is based over the border in Shropshire, and about the work of Claire House, which is a very effective children’s hospice on the Wirral.

Other hon. Members have spoken powerfully about the transport issues and the transition issues, so I will concentrate on the families and the role that they play. It is particularly important to do so this week because it is Carers Week, and we know the vital role that parents play.

My hon. Friend made an important point about the 2% funding that was mentioned in the Chancellor’s Budget and the fact that that funding is limited to adult social care. There is no justifiable reason for that discrimination. It is clear that local councils have cut their funding for services, particularly for short breaks. The impact of that on families is devastating. Thirty-six per cent. of families with children who have life-limiting conditions experience family breakdown. Therefore, it is vital that the Minister recognises that cuts by local authorities to the funding for those short breaks lead to increased burdens on Government elsewhere and that it is short-sighted not to fund those short breaks, which give the families and the siblings the vital respite that is often needed to ensure that they stay together as a cohesive unit and get the break from some quite onerous caring responsibilities. I do not say that in a negative way. All the parents absolutely love their children and want to give them the best they can in the short lives they have, but they need that break and the time for themselves.

[Stuart Andrew]

I am grateful to my hon. Friend for making that important point and I would like to give an example. I always remember speaking to a father at the hospice who said that if he got up eight times in the night he considered that a good night’s sleep. Does that not highlight just how important it is that the families get the respite that they need?

[Antoinette Sandbach]

It is absolutely critical. I have experienced the situation in which, because of advances in medical science, the doctors cannot say whether someone will fall on one side or the other of the line of likely life expectancy—fewer or more than 25 years—and they do not qualify for support from the voluntary sector. Hospices play such an important role in supporting families and I give credit to the Government for funding children’s hospices, albeit not at the same level as adult hospice care.

There is, however, a cross-border issue, which Claire House neatly exemplifies. The hospice treats a number of Welsh patients—it will not turn children away—but it does not get funded for any of the treatment it gives to them. I urge the Minister to consider having National Institute for Health and Care Excellence clinical guidance that would apply nationally and help to iron out some of the wrinkles, perhaps taking some of the best practice in the devolved nations. We have heard powerful contributions about some of the efforts being made in Northern Ireland. There is some learning that can be gained from across the devolved nations, but guidelines would ensure that hospices were put on a sustainable footing.

On that point, I support the call for joint commissioning and ask the Minister to consider what happens after the death of a child. I am here partly in my capacity as the chair of the all-party group on baby loss, and the subject has been debated elsewhere. There is important counselling support that could be put in place before the loss of a child and, indeed, afterwards. Hope House, for example, has a dedicated counselling centre and I am delighted that recently—in fact, just this week— I got confirmation from the Treasury that the Alder Centre could apply for LIBOR funding. The centre provides vital bereavement support for families in the north-west and I very much hope that it puts in an application before August. That is a beacon of light perhaps in the north-west and in the debate.

[Caroline Ansell (Eastbourne) (Con)]

I wanted to pick up on my hon. Friend’s extremely well-made point about sustainable funding. Chestnut Tree House in east Sussex provides the most extraordinary care for children and young people with life-shortening conditions but, despite the huge merit of its work, it has only 7% Government funding, and it is not confident about securing even that, year on year. The local efforts are magnificent. For example, just last month, 700 women walked the seafront in Eastbourne and raised more than £70,000, but that equates to just 11 days of care at that extraordinary place. The hospice wants to increase its services—it is not looking to retract any. It says that there are many more families it can support.

[Antoinette Sandbach]

That is typical of the hospice movement. St Luke’s hospice, which provides adult care in my constituency, is looking to expand its services, and hospices such as Hope House and Claire House are also happy to do so. I know that the Minister has a new per-patient funding currency for children’s palliative care, which will come in next April, but in the meantime hospices need certainty of funding so that they can commission services. I urge the Minister to impose some requirements on clinical commissioning groups, to ensure that there is not that cliff edge that has been spoken about today and that we have joined-up provision from, literally, the cradle to the grave, with support afterwards for families who need it.