2013 was a great year for me and the project, but also for the field of children’s palliative care. At the end of year UK charity, Together for Short Lives, outlined 8 priorities for parliament to look at to improve the lives of children with life limiting conditions...
Thanks for coming back to this blog for this month’s update on the Power of Dreams research project!
So I’m still working hard analysing the interviews that I conducted last year. The method I’m using (called grounded theory) asks researchers to conduct interviews and analyse them, before going on to do any further interviews. This is different to how most research works - in that usually a researcher will collect all the data they need and then analyse it all at once near the end. Grounded theory means that the data I collect is guided by what is important to participants, in this case - the families who have had dreams fulfilled with Dreams Come True. It has been really interesting to see what has come from the interviews, but trying to keep my ideas under control for now!
2013 was a great year for me and the project, but also for the field of children’s palliative care. In November last year Together for Short Lives (a UK children’s charity for children with life limiting and long term conditions), at a parliamentary reception event at Westminster, outlined 8 priorities for the next parliament that if implemented would significantly improve the lives of children with life limiting conditions and their families. The priorities for the next Parliament were developed with direct input from young people who need palliative care, as well as their families and the professionals and services that support them. These priorities are:
- Every child should have access to children’s palliative care in the setting of their or their family’s choice and whenever they need it - 24 hours a day, seven days a week
- Every child - and their family - should have access to palliative care services, including children’s hospices, which are sustainable and fairly funded.
- Every child - and their family - should get a short break if they need one
- Services should be more integrated around the needs of children and their families
- Every young person should have a smooth transition from children’s to adult’s palliative care services
- Services which provide palliative care to children - including children’s hospices - should be regulated fairly and proportionately
- Support to families of children who die with life-threatening or life-limiting conditions should be improved
- Families should receive help from the state to help mitigate the financial impact of caring for a child
(taken from www.togetherforshorlives/about/policy_priorites)
I really hope to see some of these points being considered by MPs as they think about their manifestos and priorities for 2015 and hope to keep this blog updated with progress.
The point that I think stands out for me the most is point 3 - that every child and their family should get a short break if they need one. This really resonates with me at the moment as I have heard from families through working on this project just how valuable a holiday, or even just some time away can be. It is more than a break - it’s time spent with family, away from the potential worry or pain of daily life. I’m really glad that this is being taken seriously, and it’s great to see it included in the a list like this. I also think that it being considered for this list validates the work that Dreams Come True are already doing, in providing holidays (amongst lots of other exciting things!) to children and families with life limiting and long term conditions.
I’m going to keep checking back to this list, and letting you know how these priorities are being used in developing future policy. For now though, I am getting back to my analysis!