Care of the Dying

Stuart Andrew Excerpts

Tuesday 17th January 2012 Westminster Hall

[Stuart Andrew (Pudsey) (Con)]

There is a famous saying that only two things in life are certain: death and taxes. In the short time I have been in this place, it seems we have talked a lot about taxes, but very little about dying. I worked in the hospice movement for more than 12 years, and the hospices have a wonderful saying that they cannot add days to people’s lives, but they can add life to people’s days. That is the fundamental point to make.

I want to talk about children’s hospices. I spent most of my time working for Martin House, which is a children’s hospice in Yorkshire. Children’s hospices are very different from adult hospices. Having also worked in an adult hospice, I have been able to see the differences between the two. Caring for a child with a life-limiting and terminal illness is incredibly difficult. The whole family need support, not just the patient. One father I spoke to said that, if he got up eight times in the night to go to his child, he considered he had had a good night’s sleep.

Many people are frightened of using a hospice, because the view is that that is where we go to die. In my experience, however, things really are much better than that, because hospices are about living and making the best of difficult lives. I want to give two examples, although I will try to be as brief as possible. Two parents came to see me after their six-week-old baby suddenly died. They had spent five weeks in hospital unable to touch the baby, but when they went to Martin House, they were allowed to hold the child. As they put it, they were allowed to be parents, rather than carers. That really shows the wonderful work that the hospice did.

Another thing also made me realise that, for many people suffering from terminal illnesses, the important thing is life and the issues surrounding it. I and other staff from the hospice were interviewing a young man who used it as part of a promotional video, for want of a better term, to help raise funds. The head of care asked him what the most difficult thing was about having a life-limiting illness. In my naivety, I thought he would say it was the fear of dying and the fact that his life would be short, but he said it was falling in love. I could not quite understand that at first, but he said, “Who is going to love me if I have a muscle-wasting disease?” I suddenly realised that the hospice movement was about helping young people who face not only a difficult disease, but the emotional difficulty of not being able to live their life in the way we do. Hospices do so much work to make the very best of difficult lives. The holistic approach they offer—the respite care, the emergency care, the terminal support and the bereavement support we have heard about—is vital to the families that need them.

While I was working at the hospice, it needed to raise £4 million a year. We got only 6% of that from the PCTs, which, frankly, is not good enough. We really should spend a lot more on providing excellent care to ensure that those who are coming to the end of their lives have the very best death possible. When the Minister looks at providing money for hospices, I urge her to recognise that children’s hospices provide very different care from adult hospices.