Children with Life-limiting Conditions

Ellie Reeves Excerpts

Tuesday 29th January 2019 Westminster Hall

[Ellie Reeves (Lewisham West and Penge) (Lab)]

It is a pleasure to speak in the debate and I thank the hon. Member for Strangford (Jim Shannon) for securing it.

Over 40,000 children and young people in England have a life-limiting or life-threatening condition, so we must not underestimate or undervalue the support that both the NHS and charity care sectors provide to both patients and their families. I am proud to represent the seat where the purpose-built hospice movement has some of its origins, with the foundation of St Christopher’s Hospice by the late Dame Cicely Saunders. South London is also home to the renowned Demelza specialist children’s hospice. Demelza was started more than 20 years ago and, in that time, it has grown to include two hospices and a community scheme in East Sussex, to which the hon. Member for Eastbourne (Stephen Lloyd) referred.

Demelza’s hospice in Eltham, which opened in 2009, serves the boroughs of Bexley, Bromley, Croydon, Greenwich, Lambeth, Lewisham and Southwark. It is a specially designed hospice that provides first-rate care to the children who use it, while also supporting their families. I recently met the chief executive of Demelza children’s hospices, and I appreciate the lengths that he and his colleagues in the voluntary sector go to to make sure that the whole family is cared for. Their service is about a lot more than just the child and the medical and palliative side of care. Not only do charities like Demelza ease pressure on the NHS, but by providing support, advice and respite for the whole family, the assistance that they provide is invaluable. Having a child with a life-limiting condition can cause unimaginable strain on a family, and the smallest gestures have a big impact during those difficult times.

I follow the work of the all-party parliamentary group for children who need palliative care and I pay tribute to it. The APPG, alongside Together for Short Lives, recently published a report into end-of-life care for children. Worryingly, the report concluded that children who need palliative care are often subject to a postcode lottery of patchy service. The recent NHS long-term plan acknowledges that for far too long, funding for children’s palliative and end-of-life care through the children’s hospice grant has not kept pace with growth in clinical care costs or inflation. I welcome the plan’s pledge to boost funding for children’s hospices by up to £25 million a year by 2023-24, but the sector still has many funding requirements that need to be addressed if the hospices are to continue delivering such world-class care.

In October, I spoke in the Westminster Hall debate on hospice funding and the NHS pay award, and I mentioned that without additional Government support, local children’s hospices could face difficult choices about reducing services. The additional estimated cost to staffing budgets of matching the pay award for the NHS, which hospice staff rightly deserve, would be £200,000 every year. I hope that the additional funding will go some way to allay the fears of local hospices, but we cannot assume that the funding pledged will still be adequate in five years’ time.

We have much to be proud of in our care sectors, but there is still a great deal more to do. The funding commitments are welcome but are not a one-fix solution to the many issues faced by children with life-limiting conditions and their families. I hope that the continued hard work of the hospice workers who run Demelza and other hospices across the country can continue to bring care and compassion to families at the most difficult times, and that they will have the funds and resources to do so.