Lucy Watts was an avid champion of palliative care for so much of her life – giving a TEDx Talk, 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. Today she shares what it was like for Lucy five years ago during the pandemic.
A blog post Lucy wrote during COVID-19
“When the COVID 19 pandemic invaded the world it was frightening time for everyone, but for those vulnerable in our society, even more so. Lucy wrote a blog about how this would affect disabled people. At this time Lucy was employing her own nurses and carers. Between us we decided that staff should be kept to a minimum to keep Lucy as safe as possible. I undertook the majority of Lucy’s nursing care during this time but could not work 24 hours 7 days a week. We decided to keep the night time carers but only have the nursing staff in to help me when essential.
We had been unable to gain a supermarket delivery slot because all the supermarket priority cards were in my name and I was not registered as disabled. It took several months before we were able to obtain a delivery slot so in the meantime I needed to go to the supermarket myself which would require a nurse to be here because queuing and shopping was taking such a long time. We needed some nurse support but it was more essential that we had night time cover so that I could sleep.
Whilst she understood the dilemma facing doctors, it was something she could not totally accept. It was an ethical decision based on who was most likely to survive. Not what they had achieved in their life nor what they may be able to contribute in the future, but on survival of the fittest.
We understood that Lucy going into hospital would mean, at best, her going without her most basic needs being met, so we made the decision to keep her at home. We could provide everything the hospital could except a ventilator which she would not be given in hospital because she would not be given one as a priority. It was an awful situation to be in but it meant should she contract COVID, it would be where she would receive all of her needs being met and either be cured or in the awful event of her demise, she would be in her own home with her assistance dog and her family around her.
Lucy did contract COVID in December 2020 but as we had agreed, although it made her more poorly than she always was, she received round the clock nursing care which she would not have been able to have in hospital because of the sheer strain on all the nurses and doctors at each and every hospital.”
Watch Lucy’s Legacy: The Impact of COVID-19 here.