Children with Life-limiting Conditions

Nick Thomas-Symonds Excerpts

Tuesday 29th January 2019 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I beg to move,

That this House has considered support for children with life-limiting and life-threatening conditions and their families.

I am conscious that other people want to speak, so I will limit my time and give them a chance to contribute, Ms Dorries. I am pleased to see the Minister in her place. I spoke to her last week and before today’s debate. I thank the Backbench Business Committee for selecting this important debate and the Minister for her attendance. I also thank everyone who is here to speak on behalf of their constituents. This matter is not for my constituency alone; it needs to be addressed UK-wide in a co-ordinated manner. As for the magnitude of the issue, 49,000 babies, children and young people live in the UK with health conditions that are life-limiting or life-threatening, and the number is rising. There are 40,000 in England alone.

I have three wonderful children and three perfect grandchildren. They are the best in the world, but every grandparent probably thinks that about their grandchildren. Hearing the news that one’s child has a life-limiting condition and is likely to die young is devastating. My heart always goes out to those who hear such dreadful news. The children have complex and unpredictable conditions and often need round-the-clock care seven days a week. Families have to cope with the knowledge that their child will die before them, and daily life for the whole family can become extremely challenging.

[Nick Thomas-Symonds (Torfaen) (Lab)]

I thank the hon. Gentleman for giving way and congratulate him on securing this debate. Will he join me in praising the children’s hospice movement, including Tŷ Hafan, which serves my constituency in south Wales, for their excellent work in providing care not only for the children but for the families who need support?

[Jim Shannon]

I thank the hon. Gentleman for his intervention. He is absolutely right. By the way, several of today’s speakers applied for this debate along with me and I thank them also. Hospice care is important and I thank the hon. Gentleman for his contribution. Every one of us knows the role that hospices play in the lives of those who need help at a very difficult time. Although there are many excellent services, many families still have difficulty accessing the care and support that they need, which is why hospices are important.

Children with life-threatening conditions need palliative care from when their condition is diagnosed or recognised until the end of their lives. Families also need care and support throughout the trajectory of their child’s illness, including bereavement care after they have passed away. Palliative care for children includes, but is not limited to end-of-life care, and the two terms should not be used interchangeably.