Support for Life-shortening Conditions

Alison Thewliss Excerpts

Tuesday 7th June 2016 Westminster Hall

[Kirsty Blackman (Aberdeen North) (SNP)]

It is an honour to serve under your chairmanship, Mr Percy. I am pleased that the hon. Member for Pudsey (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 the Member for Lanark and Hamilton East (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.

[Alison Thewliss (Glasgow Central) (SNP)]

My hon. Friend is making an excellent case. I visited the Children’s Hospice Association Scotland, and it said that some of the families that it deals with are not even aware of the benefits they are entitled to and get support on that from CHAS. Could the Government do more to encourage people to take up the benefits they are entitled to for their children?

[Kirsty Blackman]

I absolutely agree; that is something that the Government could do better. Again, that is not just the Westminster Government; it is an issue for Governments across the UK. It is very difficult when a family is suddenly thrown into a situation where they have a child who requires an incredible amount of support. They are trying to find out about children’s hospices and medical support and trying to work out what condition their child has. They are trying to swim through all that while keeping the family financially afloat. If the Government have not been proactive in providing and signposting all that support, it is even more difficult for families already dealing with an incredibly difficult situation. As the hon. Member for Colne Valley (Jason McCartney) said, in a lot of cases they have to do it with next to no sleep. The situation is almost impossible, and it is incumbent on us to ensure that we do all we can to help those families.

I want to touch on a couple of other points that Members have mentioned. The hon. Member for Eddisbury (Antoinette Sandbach) mentioned the importance of families having a break and respite. I underline the point made earlier that children’s hospices are not like adult ones. They provide support from diagnosis, or from the time when it is realised that the child may not survive childhood. Some 75% of the support provided by children’s hospices is through short breaks. We cannot overstate the difference between adult hospices and children’s hospices. There is a requirement that the Government provide them with different levels of statutory support, because they are a totally different kettle of fish.

The children we are talking about have 24/7 care needs, as a number of Members have mentioned. The importance of respite care cannot be overstated. The hon. Lady and the hon. Member for Strangford (Jim Shannon) mentioned sharing the knowledge we have of best practice in the devolved nations and spreading what works. One problem we have in Scotland is the lack of children’s hospice care. We have only two children’s hospices in Scotland, and they have a total of about 15 beds. Families in my constituency have to do a 200-mile round trip to access a hospice, and that is on the weekends that work for the hospice, because there is such a big waiting list. I do not think that is appropriate. We need to work on that. In previous years and decades gone by, it was not necessarily so much of an issue, because there were fewer such children and families. It is now increasingly becoming an issue. That is why Charlie House in my constituency is working hard to get a hospice built in Aberdeen so that there is local access. As my hon. Friend the Member for Lanark and Hamilton East said, the Scottish Government are committed to trying to ensure that we have a geographic spread of services, as well as the spread of services needed for children with all the different conditions.

I appreciate the fact that we have had this debate so that we can discuss these matters, and I appreciate the feeling in the room about working together to try to find a way forward that helps everyone.

One point I will briefly mention, because it has been mentioned a number of times, is the issue of transport for those aged nought to three. That would be relatively easy for the Government to fix and would make a massive difference to the financial impact on families, particularly those who are struggling financially as it is. It would be a massive help.

Thank you, Mr Percy, for your chairmanship, and I once again thank the hon. Member for Pudsey for securing the debate.