Children with Life-limiting Conditions

Carolyn Harris Excerpts

Tuesday 29th January 2019 Westminster Hall

[Carolyn Harris (Swansea East) (Lab)]

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 and on his speech. We have campaigned together on many issues and I am happy to participate in his debate today.

Many hon. Members will be aware of my campaigning work to support families who have lost a child. I am very proud to have brought about the introduction of the children’s funeral fund to support grieving parents with the costs of their child’s funeral. My campaign came after my own experience of losing my son Martin and having to take out a loan to cover his funeral.

I lost Martin very suddenly in a car accident. From the perspective of a parent, I have no idea whether it is worse to lose your child suddenly, like blowing out a candle, or to watch them pass away slowly from a life-threatening or life-limiting condition; all I know is that, whatever happens, it is the end of the world. It feels as if it is a bank holiday and the world is still going on around you—you cannot comprehend why people are still putting the kettle on, taking the milk in and having the post delivered. It is such a painful experience: nothing can prepare you for it, and realistically it is not something that you will ever recover from. Nothing will ever be the same again. You think that you will never worry again about anything like how much the telephone or electricity bill is, because nothing will ever matter again, but in reality it is more painful: you worry more and you keep waiting for that moment when something really bad will happen again. I think that stays with you for the rest of your life.

Tragically, the parents of 5,000 babies, children and young people have to face that dreadful pain every year. It is a pain that nobody can help them with, but one thing that we can do for those families at such a difficult time is try to lessen or ease their financial worries. There are very many additional costs when you lose a child, apart from the funeral. At the time, it seems as if all the other things do not really matter, but they do. Someone whose child has a life-threatening illness has to think about parking at the hospital, childcare for their other children, making sure they have clean pyjamas, pants and vests, and maybe having to give up work to look after them.

When a child passes away as a result of a long-term disability, the family may well have been receiving a benefit because of the child’s health, such as carer’s allowance, disability living allowance or child benefit. As well as the personal loss, they will face a huge and immediate financial loss. I will never, ever forget losing Martin on a Monday—I had cashed his family allowance that morning—and getting a letter the following week asking me to repay it because I had sent in the death certificate to say that Martin was not with me anymore. As a parent, you cannot imagine how painful it is even to get that letter, let alone to try to find the money to pay back. It may be small, but for a parent it is the end of the world.

That is not the only financial hardship that parents face when they lose a child; as I said, there is also the cost of the funeral. Royal London has found that the average cost of a funeral in 2018 was £3,757. For someone who is not anticipating losing a child, or who is on a low income, that is an insurmountable amount. Some people have actually asked me why I did not have insurance. Why would you insure a child? Why would you consider insuring against a child’s passing?

As hon. Members may be aware, health in Wales is a devolved matter. I am very proud that the Welsh Government led by example and introduced a children’s funeral fund in 2017. I will say only that I had a letter from the Prime Minister on Easter Sunday last year, yet we still do not have a children’s fund throughout the United Kingdom. Scotland has introduced it and, in the absence of Stormont, Northern Ireland has done it on a local level, so it is only parents in England who are not getting support with their child’s funeral. The Welsh Government, who were the first to introduce such a fund, have announced an additional £1 million investment to support the work of the end-of-life care implementation board. That funding will go towards a variety of areas, including training for staff on having difficult end-of-life care conversations with parents.

I give personal thanks for the work of the wonderful charities Tŷ Hafan, Hope House and Tŷ Gobaith, which provide care to children and families in my constituency and across Wales. After I lost Martin, I spent a lot of time trying to do what I could to help other families. I provided pastoral care for mentally and physically handicapped children, and I went to work for a children’s cancer charity. I felt like my personal experience would help those parents. Today I still talk to parents who have lost a child and try to reason with them by saying, “The thoughts that you are thinking, the worries that you are having, the fears and the fright that you will experience day in, day out for the rest of your life—they’re real but they’re not abnormal, and you need to share.” As a country, we should support these people financially and give them that little bit of comfort, so that it is only the emotion—something nobody can ever help you with. I urge the Minister to do whatever she can to ensure that families in such a position never have to worry about the incidentals of life and can grieve with dignity and peace of mind.