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Support for Life-shortening Conditions — [Andrew Percy in the Chair]

Part of the debate – in Westminster Hall at 10:18 am on 7th June 2016.

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Photo of Kirsty Blackman Kirsty Blackman Shadow SNP Spokesperson (House of Lords) 10:18 am, 7th June 2016

It is an honour to serve under your chairmanship, Mr Percy. I am pleased that Stuart Andrew has brought the debate to the House. I raised the matter at business questions during children’s hospice week, and I am glad to have the opportunity to speak in a debate about it.

There have been many interesting contributions today, and I am pleased that so many people have taken so much time not just to research the matter but to go and meet people, hear their real-life stories and bring them to the House. That is really important; it is not just about numbers, it is about the impact on people’s lives, and the debate has been good at highlighting that.

I thank Together for Short Lives, which prepared a briefing that many of us have seen, and the Aberdeen charity Charlie House, which has provided me with a lot of information in advance of the debate so that I can speak on behalf of families. It is key that we get as much information as possible, including about real-life scenarios. In paediatric palliative care, we are pretty much having to make things up as we go along. That is not any kind of criticism of those who work incredibly hard and do a huge amount of research to try to make lives better, but it is a situation we have not been in before.

The Children’s Hospice Association Scotland produced a report in 2015 that explained that we are seeing an increase in the prevalence of children and young people with life-limiting conditions, which is projected to grow further. As a result, the situation throughout the UK and the world is uncharted territory. We cannot just say, “This is best practice” and lift it, because we are all having to find our way in this scenario. As a result, Governments throughout the UK—the devolved Governments and the Westminster Government—are not necessarily getting everything right, because this is a new scenario for all of us. The best way to ensure that we get this right and provide the best support is to listen and speak to the families and ask them about what they need and the hurdles they are facing.

When a family has a baby with such a condition, it is an unforeseen circumstance. They do not imagine that that child will not learn to sleep through the night, will not learn to crawl and walk and will not go through a weening process and begin to eat solid food. It is an unforeseen and unforeseeable situation. A lot of the conditions that such children have are totally unplanned for and could not have been predicted beforehand.

One thing that has been touched on, but not explored in a huge amount of detail, is the financial impact on families. My hon. Friend Angela Crawley mentioned that 25% of families with children with life-limiting conditions live in the most deprived areas of our communities. Those families start from a position of not having a huge amount of money in the bank, and they are then faced with a situation in which more than 60% of mothers and more than 20% of fathers have to stop work. They require support from the Government, because it is impossible for them to survive otherwise.