We Need To Talk About Paediatric Palliative Care
Posted on March 22, 2016
I was delighted to see that MPs were discussing End of Life Care in Parliament recently and that children with life-limiting conditions were given a mention.
Raising awareness within local councils, government, healthcare professionals and the general public, is vital if the child-centred and needs-led service which is so desperately needed in the North East is to become a reality. There are only two children’s hospices in Scotland, with the closest to Aberdeen being over 100 miles away. With more than 15,000 children in Scotland with life-limiting conditions, this is not enough.
I have come to know some of these special families as a clinician, a carer and as a friend. One young boy in particular, who I spoke briefly about in my last blog post, has had a massive impact on me both on a personal and professional level.
I first met Harry on the surgical ward in RACH during my very first week as ‘Doctor.’ I remember walking into his room, where two concerned faces looked to me for reassurance. I felt completely out of my depth; I had never heard of his condition and I had never seen so many ‘ostomies’! But then I looked at his wee face and said hello, I will never forget the huge smile he gave me that day. What a charmer! I researched as much as I could about his condition, and got to know his mum and dad, who I would regularly pop in to see for a chat. There was little I could do for him medically, he needed much more experienced medical assistance than anything I could provide, but I could listen and learn, and talk to the family about other things. The hospital can be a lonely place, being cut off from your support network and home comforts.
My placement in paediatrics was only four months long, and I didn’t see Harry again until nearly two years later. I had just started working for a charity based in the hospital, and bumped into his mum in the corridor. I wasn’t sure if she recognised me, so I carried on walking. A few more ‘almost’ encounters and I eventually stopped her and said hello. To my surprise, she remembered me. We met for a coffee later that day and she told me all about her son’s journey since I had last seen him. His condition had worsened, he had undergone dozens of procedures and had spent much of his short life in hospital. She invited me up to the ward to see the wee man himself. I nearly didn’t recognise him all grown up, until he smiled of course. An expression I could never forget.
I became quite close to Harry and his family as they stayed in hospital for many months. I felt helpless every time his mum came to me with her concerns; Harry was in severe pain, his reflux was getting worse, his gut wasn’t absorbing his medication. They say that mother knows best, and no-one knew Harry and his condition better than his mum. The doctors kept saying they would try a different medication, another procedure, a new technique... The word ‘palliative’ was never mentioned to the family. Eventually, Harry was referred to Rachel House, where he stayed during his final weeks. There, his whole family stayed with him, he had support from paediatric palliative care specialists and was given every happy memory possible.
Before he left RACH, I wanted to do something for him myself I remember one visit to the ward; he had two fire engines, two Fireman Sam toys and was watching Fireman Sam on his iPad. All he was missing was the real thing! I borrowed a Fireman Sam costume from a local events company, and bought a musical fireman’s helmet. I put on the costume and visited Harry in HDU. He was absolutely delighted! He opened his present, played his musical helmet and I aka “Fireman Sam” danced around the bed with his dad, nurse, anyone I could find, all to his great amusement! That was a memory I will treasure forever, and so will his family.
Harry passed away in Rachel House at just 3 years old, surrounded by his loving family. His story is one I will never forget, and is one which motivates me to do whatever I can to help other children with life-limiting conditions. There are so many ways in which Harry’s life could have been made better. Access to specialist paediatric palliative care support in hospital and in the community, respite for his family, a specialist care facility like Rachel House closer to home, bereavement support.
We can all learn something from Harry. I have learnt that I can make a difference for other children with his help. And that’s what brought me to Charlie House. One day, we will have a facility which the special children in the North-East deserve; because life begins with love, and should end with love.← back