Hospice UK CEO Tracey Bleakley writes about the resilience of children with life-limiting conditions.
A new television documentary series, The Hospice, is currently running on the Together TV channel, focusing on the work of Ellenor Hospice in Kent. Watching it is all the more interesting for me as I spent three days at Ellenor Hospice in February shadowing the children’s hospice at home team. At the end of a hugely rewarding week, I sat down at home and reflected on my experiences. Here is what I wrote:
The first thing I noticed was genuine joy and happy lives. It is easy to take a campaigning stance and think of these families of victims who do not get enough help from the state and health and social care. It is easy to imagine overwhelmed and exhausted families. Of course when I asked how much sleep parents were able to get, I could not quite believe they were functioning, and the overnight schedules of medications and interventions seemed brutal, but the natural state of affairs were characterised by smiles and happiness.
I was surprised how quickly I was able to learn how to communicate with the children (even the very young ones and those with severe global learning difficulties). At first I really felt for the respite team thinking they were spending so much time playing with and stimulating children who could give little feedback. But then I learned the feedback is very much there if you know where to look. And getting an eye flicker, yawn-smile or sleepy stretch is such a thrill when you know it means you have done something that the child enjoyed!
I realised how seeing a child go into remission from cancer has such a positive effect on the team (and of course Ellenor is rare in providing services for children undergoing active cancer treatment). I was lucky to meet one such family. Mum had just had the news that her son was in remission and could not wait to tell us. Her happiness was infectious. They knew they were facing three years of follow on treatment, but they had reclaimed their future after weeks of fear, and they could start to plan again. It was an amazing visit.
I learned that I make casual assumptions all the time. Of course, the brain does that 95 per cent of the time to make sense of all the detail it tries to process. But I assumed carer was dad, and that foster mum was grandma. I did not vocalise it, so no harm done, but it made me realise how important it is to keep an open mind. The evening before my placement I went to a Sue Ryder lecture on Human Rights. They said how important it is not to impose our norms and values on patients and they were so right.
I was so ashamed about moaning about having a cold and jet-lag the previous week… These children are so resilient and they just seem to get in with it. Perhaps they are used to their bodies changing as they grow up, and more constant change in general. I found so many of the cases heart-breaking and so unfair, but the young people seemed to take so much in their stride.
I found myself questioning the value of being ‘normal.’ Some of these children will have short lives, but they are full of love and cuddles and stimulation, and I found myself questioning if this was in fact a happy alternative. You could see the joy they brought to their family. But then I would see them struggling to breathe or swallow, or just be in the moment because of pain. And I would realise again how much I take for granted and the difficulties many of these children face just getting through the day.
I met families who have had multiple children affected by genetic abnormalities. This felt particularly unfair. But again, they seemed genuinely thrilled to be parents and keen to enjoy the experience despite the challenges and grief they face.
I wondered what kind of parent I would be to a life limited child. I am ambitious and goal driven. Would I be looking for developmental goals and improvements all the time or would I be able to live in the moment and be grateful for what I had. Some of these parents are such fierce advocates for their children and you can see the benefits of that in terms of the care packages they have been able to negotiate. Life as always is a fine balance.
I could see why hospice nurses sometimes get very protective of ‘their families.’ There is a natural instinct to protect these families and children from harm, and in a sense we need to be aware of and override this so that families do not become over dependent and get the help and support they need from lots of different sources.
I felt that many acute services do not take symptoms that seriously in these children. Perhaps it is because they are trying to manage scarce resource and they feel that these children will die at some point anyway and symptoms are expected to escalate. Would a well child be sent home from hospital with clear signs of having had a stroke without tests? Would GPs and consultants ignore a huge new growth on a well child?
I was also sad when I learned how some of these families had been judged by social care (and in some cases by the police). Assumptions sometimes felt heavy handed, with symptoms (such as brittle bones) only being considered later. The impact is that some parents are scared to play with and interact with their babies and children, which is a shame.
I felt anticipatory planning was lacking from the acute sector. When you know a child is going to decline, that the decline will be quick and the symptoms are predictable, why only have a plan for current symptoms? This seemed even more obvious with babies and I wondered if this is because professionals feel they need to take more control because of fear. How big an impact have the Charlie Gard and similar cases had? I sense this may have been significant.
It also seemed to be down to the hospice to prepare families and carers for what was about to happen with symptoms, rather than consultants or GPs. I found these families so much more keen to discuss future planning than with adult hospices. Perhaps it is because parents instinctively plan. Perhaps adults facing loss also like to live in the moment more. But if frightening symptoms are likely to occur, far better to prepare the family and have a plan. Parents seem very open to this and often drive the conversations.
So what does this mean for my thoughts on children’s hospices? I find I have a visceral need to protect and help these children that spending time with these families only strengthens. The team at Ellenor gave me a great deal to think about!