Children with Life-limiting Conditions

Stephen Lloyd Excerpts

Tuesday 29th January 2019 Westminster Hall

[Stephen Lloyd (Eastbourne) (Ind)]

It is a pleasure to serve under your chairmanship, Ms Dorries. I congratulate the hon. Member for Strangford (Jim Shannon) on securing this important debate. Given that we are reduced to four minutes each, I will ensure that I keep to that.

Like other hon. Members, I want to bring attention to two outstanding children’s hospices that serve my constituency: Chestnut Tree House and Demelza. They are not based in Eastbourne, but they do a considerable amount for many of my constituents and their children. Both are hospices and also deliver outreach services to very poorly children at home. I want to put that on record, as they do outstanding work.

I know the Minister is getting a long shopping list, so I will keep my requests fairly simple. I want to focus on two areas, both of which I am confident the Department can respond to fairly swiftly. First, NHS England states that its end-of-life care programme for children and young adults is managed through a cross-system governance board. That makes sense. It includes a lot of the key providers, such as the Department of Health and Social Care, clinical commissioning groups, NHS England and others. However, I discovered that there is no representation on that cross-system governance board of the children’s palliative care sector—the charities and groups that represent families and children and really know their stuff. I urge the Minister to look at that again.

The other serious issue—I am sure the Minister is aware of it, and I would welcome information from her on what is being done to respond—is that, according to the Royal College of Paediatrics and Child Health, there are only 14 children’s palliative care consultants across the UK. I am sure the Minister would agree that that is completely inadequate. Perhaps the Minister can let me know—either at the end of this debate or in a letter—what plans NHS England and the Department of Health and Social Care have to work with the Royal College to increase that number. Fourteen is clearly inadequate.

Let me end with a constituent’s issue that brings home the issue of long-term conditions and the end of children’s lives. This subject is incredibly important—we are talking about 45,000 youngsters—and I want to bring it down to earth and make it real. I am working with a constituent couple, Mr and Mrs Spence, and their teenage daughter Connie, who I have known for well over 10 years. She is now 16 or 17 and still has—obviously—a progressive, life-threatening condition. She is an amazing girl. Her parents have done fantastic work in looking after Connie and working with Demelza, giving her a good life.

Recently, Mr and Mrs Spence’s CCG told them that they would be allowed only three nappies a day. Without going into too much detail, we all understand that a very disabled 17-year-old girl—or any of us in her situation—would usually use six or seven nappies a day. They have been told that she can have only three. That is completely unacceptable, highly inappropriate and just wrong. The CCG pleads costs, as does the local trust. I will be writing to the Minister with details and hope that she will support me by making representations to the CCG to stop that completely inappropriate cut.