Lucy Watts was an avid champion of palliative care for so much of her life – giving TED X Talks, speaking to Dr Tedros from the World Health Organization, appearing in BBC documentaries. Yet she was badly let down by palliative care services at the end of her life. In our latest video series, ‘Lucy’s Legacy’, we hear Lucy’s mum Kate, share her reflections on Lucy’s life and death. In this blog, she shares some of her experiences as one of Lucy’s carers.
Kate shares her reflections on a specific incident following one of Lucy’s discharges from hospital, demonstrating how resourceful family carers can be:
“When Lucy was discharged from hospital following establishing nasogastric feeding it was a bank holiday weekend. A crash course in how to set up the feed left me solely in charge of Lucy. We had the giving set, pump and feed but no stand as that was going to be delivered by a company the following week who would replace the hospital pump and set up a feed delivery service. In the meantime I had to find a way to hold the feed above the pump and improvise a stand for the pump. I got a metal coat hanger and bent it over the curtain rail for the feed and brought the garden umbrella stand from the garden for the pump. I was very impressed with my ingenuity but less impressed when I forgot to clamp the giving set whilst preparing the line and found myself standing in sticky feed. Fortunately Lucy and I just laughed at the sheer absurdity of the situation.”
Watch Bank Holiday Experiences here.
Kate shares her reflections on what it was like being both a mother and a carer:
“As Lucy’s medication increased I realised that it would require me to give up work. Although we had carers whilst I was at work, they were not able to give Lucy any medication as this was all intravenous and required training that only a fully qualified nurse could provide. I was working in the office in a local school full time and although the head teacher and office manager were extremely sympathetic and always allowed me to have time off for Lucy’s hospital appointments, it was taking its toll on me. I was getting up early so I could get myself ready and then do Lucy’s medication before leaving for work. I was coming home at lunchtime to give more medication and then in the evening I was giving more medication and setting up her TPN. I was also getting up every few hours during the night to empty her ileostomy and urostomy bags. In February 2014 I gave up work as the local authority had agreed to pay me for an infusion that was being given for a period of 3 hours each evening which was just enough for us to survive on. That in itself was a real battle with the local authority (CCG) which we eventually won.
In 2015 I was diagnosed with a brain tumour which needed to be removed urgently. The surgery was booked for 3 weeks so Lucy and I had time to set up a package of ITU nurses and carers through the CCG. On the morning of my surgery I had to leave at 5.30am so I left Lucy with a friend. Lucy had not met any of the nurses who would now be assisting her with all the aseptic procedures, washing, dressing and attending to her every need. What a daunting prospect for her and for me as we had been reliant on each other for everything.
I was Lucy’s ITU nurse, night carer, sounding board for her speeches, camera woman, dog walker, companion and van driver. Lucy would have been unable to work, advocate and attend meetings had I not been prepared to take on this role. Any parent of a seriously poorly or disabled child, even when they become an adult, would take on any role necessary to facilitate their child’s life. The package of nurses that Lucy had fought so hard to secure and employ could not accompany Lucy on these trips away because their pay and conditions of employment were not flexible enough, so this is when I took over. I drove, did her medications, set up her TPN, emptied her bags and looked after Molly. I also undertook all the packing (which, rest assured, was no mean feat) because should I forget something, that would be disastrous as a forgotten “giving set’ or medication would result in Lucy not receiving vital medication or feed.”
Watch Being Lucy’s Carer here.
Acronyms:
TPN – Total Parenteral Nutrition
CCG – Clinical Commissioning Group
ITU – Intensive Therapy Unit