Hospices (Children and Young People)

Debate between Stuart Andrew and Fabian Hamilton

Wednesday 18th December 2013 Westminster Hall

[Stuart Andrew]

Absolutely. I will talk in a little more detail about transition later. The Care Bill had its Second Reading on Monday, and I raised specific points about transition during that debate, because it is a big issue for many of those young people.

The conversations those young people had were very moving. I will never forget one particular young man. We were recording a promotional video to show to health professionals and as a fundraising tool, and we asked the young people at the hospice to say what it meant to them. The head of care was interviewing them, so that they were with somebody they knew and felt as comfortable as possible; she asked that young man, “What is the most difficult thing about your condition?” He considered the question for a moment, and what he said had a profound effect on me. He said: “Falling in love.” At that moment, it hit me that despite their physical limitations or their conditions these are still young people, with all the same feelings and hopes that we all experience. He wondered if anybody would ever love somebody who was, as he put it, “Like him.”

That local experience at Martin House is but one piece in a huge jigsaw. Support and palliative care do not come only through hospices such as Martin House, Hope House or the others that have been mentioned. I want to cover three areas: NHS funding for children’s palliative care; short breaks; and support with mobility for children under three.

[Fabian Hamilton (Leeds North East) (Lab)]

I congratulate the hon. Gentleman on securing this debate. Two organisations that help hospices and the hospice movement throughout the country are the National Council for Palliative Care and the Help the Hospices movement, which has already been mentioned. Both ensure that the high standards that all hospices aspire to and achieve are maintained through mutual good practice and the sharing of experience. Does he agree that those organisations give superb support not just to Martin House, which he has mentioned, but to St Gemma’s in my constituency and all the other hospices that hon. Members have mentioned?

[Stuart Andrew]

The hon. Gentleman is absolutely right. Those umbrella organisations help to share best practice, and it is through them that the hospice movement has grown so significantly. The movement is something that we can be proud of worldwide: we now have visitors from all over the world coming to our hospices to see how it is done—and, frankly, it is done brilliantly.

As I was saying, the national picture is much bigger. There are some 49,000 children and young people in the UK living with a life-limiting or life-threatening illness that means that they need palliative care. There are some wonderful and committed professionals providing that care in some inspirational places—not just in hospices, but in the family home, in hospitals and in community settings. Families with children with life-limiting illnesses are some of the people most in need in the UK, but many are still not getting the help and support that they require. Although services offer a day-to-day lifeline to families, many of the challenges that they face can be addressed only by changes to policy, both nationally and locally.

In November, I was proud to co-host a reception in Parliament for Together for Short Lives, the UK charity that supports all children with life-limiting illnesses. At that event, the charity launched its policy priorities for the next Parliament. During the reception, the audience heard from Lucy Watts, who is 20 years old. Lucy described the impact that her condition has on her life, the care that she receives and the needs of young people like her. She became ill at 14, and was diagnosed just after her 15th birthday. Lucy is fed straight into her bloodstream, via a central line, and can sit up only for up to five hours a day. She is wheelchair-bound, but has to spend the majority of her time in bed. Speaking about the gap in services for young people with palliative care needs, she said that

“what has been forgotten is that in between children’s and adults, there are the young adults. We deserve the same recognition and distinction as children’s and adult services, but it’s barely recognised. There is the transition period, but young adult care goes beyond transitioning from children’s services to adult services. As a result, the transition can be a huge leap, too many changes too soon without factoring in the needs of people who are not children, but not mature adults yet either.”

That is a powerful quote from that young lady.

Making sure that the right children’s palliative care services are available, in the right place, at the right time, is crucial. Those services should cover the whole spectrum of care, including short breaks for children and families. Commissioned and delivered effectively, children’s palliative care can play a cost-effective role in supporting early discharge for children from acute care settings through step-down care. It can also help to reduce unplanned admissions among children to acute care settings. A Government-commissioned funding review has highlighted that hospital admissions in the last year of life for children who need palliative care can cost an estimated £18.2 million. That far outweighs the cost of providing palliative care to children outside the hospital setting.

Research has also shown that short breaks provided by children’s hospices, which often include health care interventions, help to reduce stress on families and demand on public services. Children’s palliative care services, including children’s hospices, must be funded fairly and sustainably. Families need to know that their local services will continue to be able to provide the care that they need—an issue that was reflected in the 2010 coalition agreement.

I pay tribute to my field within the hospice movement: the wonderful fundraisers, who raise millions and millions of pounds for hospices. My job as head of fundraising was made much easier by the dedication of many volunteers and supporters. We had to raise over £4 million a year to run the hospice, and somehow—I do not know how—those volunteers managed to do that year in, year out.

Leeds Children’s Heart Surgery Unit

Debate between Stuart Andrew and Fabian Hamilton

Tuesday 30th October 2012 Westminster Hall

[Stuart Andrew]

The answer is that I do not know. I have not been given any assurances that that will happen, which again highlights the crucial problem with the decision: we will be subjecting our constituents to a lesser service.

I spoke to another family at the unit. Libby was diagnosed at 20 weeks with complex heart problems, and her mum was referred for the rest of her antenatal care to LGI, where the baby was delivered; that again demonstrates the crucial co-location of services. It was clear that the daughter needed treatment immediately after birth, and at six days old she had her first of many operations. As she has complex medical needs, she has also needed support from the paediatric neurology and renal teams, and all those services are under one roof, which provides first-class care. My final example is of a child who had an operation in Leeds at 18 months. All the care was then delivered in Barnsley by doctors from Leeds. Leeds doctors have been out working in all the towns and cities across Yorkshire, at 17 different locations, over the past decade. We have a well-established network of services. Those are just a few examples of the kind of impact that the proposal could have on any of our families.

[Fabian Hamilton (Leeds North East) (Lab)]

I congratulate the hon. Gentleman on securing the debate, which, as he rightly points out, is extremely important. Does he agree that it is not just the children’s congenital heart problem services that serve us so well at Leeds general infirmary, but the post-16 services, which the review did not take into account? Does he also agree that Leeds is perhaps the leading centre in the country for training post-16 congenital heart problem surgeons in what is a valuable and important skill?

[Stuart Andrew]

The hon. Gentleman makes an absolutely first-class point. Indeed, I think we have all asked the question: why is the review into children’s services being held separately from that into adults’ services? It is bizarre. We know that the surgeons operating on adults are often the same people who operate on children. We have yet to get a sufficient explanation of why the reviews have not been run in tandem, and we expect, or at least hope, that the Independent Reconfiguration Panel will consider that issue.

That brings me on to my next point. I wholeheartedly welcome the fact that the Secretary of State has decided to refer the decision to the Independent Reconfiguration Panel—that is great news—but it is absolutely crucial that we get the decision right. There is no point in simply reviewing the decision; we want the panel to consider the whole process, right down to the information that was used at the very beginning regarding what the services were like at the different units. That must include the scoring.