Support for Life-shortening Conditions

Jason McCartney Excerpts

Tuesday 7th June 2016 Westminster Hall

[Jason McCartney (Colne Valley) (Con)]

It is a pleasure to serve under your chairmanship, Mr Percy. I congratulate my hon. Friend the Member for Pudsey (Stuart Andrew) not only on securing the important debate but on his work for and support of Martin House hospice in west Yorkshire. As he knows, our part of the world in Yorkshire is very well served indeed. I have the Forget Me Not children’s hospice in Huddersfield supporting 185 local children and their families. We have identified, however, that there are probably more than 1,300 who need our support. The hospice has been up and running for only about three years, under the inspirational leadership of Peter Branson.

As we have heard, funding is an important issue and a big challenge for our children’s hospices. The Forget Me Not children’s hospice needs to raise £3.8 million every year, with only 6% of that coming from Government funding. It was nice to hear about the wonderful fundraising efforts for the local hospice of my hon. Friend the Member for Eastbourne (Caroline Ansell). A couple of weeks ago, more than 1,000 people took part in a colour run. They raised thousands of pounds for the Forget Me Not children’s hospice by running through the beautiful fields of west Yorkshire and having coloured paint thrown at them. I have done my bit for the hospice by running the London marathon twice, but I would probably rather have paint thrown at me than run around the streets of London for four and a half hours—actually, 4 hours 44 minutes.

Some important issues have been highlighted this morning, and having been out with the wonderful nursing team from the Forget Me Not children’s hospice the one thing that has really struck me—we have talked about this—is the importance of respite care and short breaks for families. I remember visiting a single mum whose young daughter with muscular dystrophy had a breathing tube. I asked the mum what it was like caring for her daughter and we talked about the lack of sleep. She had not had more than two and a half hours of unbroken sleep at night for four years. I could see the tiredness in her eyes, but she was incredibly uplifting and made no complaint whatsoever. She was very inspirational; I think about her a lot. The nursing team would visit her twice a week, not only to care for the daughter but to give the mum an opportunity to have her hair done, go shopping for herself or have a coffee with friends. That was important to her, as a mum and as a person, and it helped her to give even better care to her daughter. I say to the Minister that finding an opportunity for short breaks and respite care is so important.

We have mentioned the funding element, and I have talked about the Forget Me Not children’s hospice, but we also need to think about the workforce and the specialist skills the hospice teams need to provide palliative care. We must ensure that we have a sustainable workforce, with specialist skills, experience, knowledge and competence, so that the wonderful children’s hospices can continue to give wonderful care, not only to children but to their families.

I finish by thanking all my colleagues here for making their wonderful contributions. I again thank my hon. Friend the Member for Pudsey (Stuart Andrew) for raising the issue and securing the debate.