Hospices (Children and Young People)

Karen Lumley Excerpts

Wednesday 18th December 2013 Westminster Hall

[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.

[Karen Lumley (Redditch) (Con)]

I am grateful to be able to contribute to this debate. My hon. Friend the Member for Worcester (Mr Walker) mentioned Acorns, the hospice that serves our community. Does my hon. Friend the Member for Pudsey (Stuart Andrew) agree that volunteers do an amazing job, and that the NHS could learn a great deal from how we run our hospices?

[Stuart Andrew]

That is a very valid point. Hospices do inspiring and innovative work.