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My story: Lucy Watts MBE

Care pathways and transition

I’m Lucy Watts MBE, I’m 24 years old and I live at home with my mother and sister and my Assistance Dog, Molly, whom I trained myself with help from the charity Dog Assistance in Disability. I have a life-limiting condition, an undiagnosed, progressive neuromuscular disease that has caused very complex health needs.

I have multiple organ failure, consisting of type 3 Intestinal Failure and Neuromyopathic Bladder Failure. This means I am dependent upon Total Parenteral Nutrition (TPN), feeding directly into the bloodstream, as well as intravenous medications and fluids round the clock; I am hooked up to intravenous drips for at least 21 hours every day. I then have a gastrostomy tube used to continuously drain my stomach, as well as two stoma bags, an Ileostomy and a Urostomy. As such, I require 24-hour care, which my mum previously provided until she developed a brain tumour, suffered a stroke and developed epilepsy, which necessitated me having a 24-hour care package.

24-hour care

Due to my complex needs, I have 16 hours a day provided by an intensive care nurse and then a carer overnight and my mother supports the nurse by providing the double-up care to wash and dress me, turn me and hoist me into my wheelchair. I’ve been receiving palliative care since I was 17 and am supported by The J’s Hospice, a local young adult hospice-at-home service.

… despite my illness, I live a great life, a life I love

Lucy Watts MBE

I was born with health problems but these went undiagnosed throughout childhood, until I became disabled and seriously ill at the age of 14. Since then, my condition has rapidly deteriorated, I need intensive intervention to survive and have nearly lost my life on numerous occasions, including 12 battles with sepsis. We’ve had to fight the system for everything I need, my mum and I, and I still have to fight to remain living at home. Fortunately, The J’s have helped us throughout the last 7 years.

Making a difference

However, despite my illness, I live a great life, a life I love. Doing my end of life planning led me to expressing to my palliative care nurse that I wanted to make a difference and not to be forgotten. I did some work with the hospice and then my nurse, Bev, put me in touch with Together for Short Lives. I became formally involved with the charity in 2013, starting with a speech at a reception in the House of Commons!

Doing my end of life planning led me to expressing to my palliative care nurse that I wanted to make a difference, and not to be forgotten

Lucy Watts MBE

Since then, I’ve done many things. My work involves writing, speaking, media work, sitting on national and regional boards, co-leading research, consultancy and advisory roles, working with charities in various roles and on numerous projects and, currently, I’m setting up a charity. I also formed the international palliative care patient and carer network, Palliative Care Voices, in 2017.

For my work, in 2016 I received an MBE for services to young people with disabilities; a huge achievement for 22, as I was at the time.

Click here to learn about resources and tools to support you through the transition to adult services

Family stories