Children’s Hospice Association Scotland

Part of the debate – in the Scottish Parliament on 18th September 2019.

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Photo of Brian Whittle Brian Whittle Conservative

I also congratulate my colleague Miles Briggs on bringing the debate to the chamber and allowing us to talk warmly about the work that CHAS does.

I had previously been aware of CHAS for quite some time, although at quite a superficial level. We used to run charity golf days at which we would get a patient along and play a celebrity golf game, meet friends and have a bacon roll and a good chat with the lads. Part of that process was getting a two or three-minute presentation during the day at which somebody from CHAS would let us know what the charity does. We would always say, “What a fantastic charity. That is great. We are happy to support that,” and we would go off home.

It is only when I came into this role that I got the opportunity to dig a little bit deeper into what charities such as CHAS do. I have had the pleasure of visiting Robin house, and it is only when you walk through that building that you get a sense of the importance of the service that it delivers to the people who use it. To those of us who are parents or, as in my case, grandparents, the situation that the parents and families at CHAS have found themselves in is unimaginable.

We might imagine the building to feel like a dark place, but it is so bright. Everybody has talked about the hydrotherapy pool, the colours on the walls, the paintings, the playing, the music and the incredible garden. It is such a fantastic place for people to be at such a time.

Mary Fee recently hosted an event in the Scottish Parliament’s garden lobby for people and organisations who work with families who have lost young people, such as Sands.

I have been to the CHAS butterfly release events a couple of times. I found that difficult to do, but it is very worthwhile to be in a room with people who are celebrating the lives of the children whom they have lost. Reading out something that people have written for you to read out in front of them is incredibly difficult. Releasing a butterfly in the garden to try to keep those memories alive is moving and important.

The work that is done by staff and volunteers at hospices is utterly vital and often hugely challenging. Supporting someone as their health declines and they enter the last days of their life can take a real toll, never more so than when palliative care is needed by the young. All deaths are tragic, but perhaps none more so than the death of someone who has not had much time to experience life.

Miles Briggs’s motion talks about CHAS’s mission of keeping the joy alive, and from my experience of visiting Robin house, I have seen how hard people work to bring joy to everyone who comes through the doors. We talk about making people with life-shortening conditions comfortable in their final days. In most cases, that is about making someone physically comfortable: treating their symptoms and managing their pain. Sometimes, we do not think enough about the mental comfort of people with life-shortening conditions and their families. That is why CHAS’s mission to keep the joy alive is so important. When we are going through something painful, moments of joy and fun are at their most precious and can make the most difference, with that sense of hope and that little reminder that, even when things feel unendingly dark, there can still be light.

I again thank Miles Briggs for bringing this debate to the chamber and allowing us to thank CHAS and other charities that support those in such difficulties in communities. To all the staff and volunteers who work for CHAS, I pass on our continued admiration and support and look forward to visiting them again soon. “Keeping the Joy Alive” is a very apt title for this debate.