I’m Lucy Watts MBE, 27 years old and have a progressive, life-limiting illness. I have extremely complex medical needs that mean I depend on constant, life-sustaining intervention including intravenous nutrition, intravenous (IV) medicines and IV fluids, delivered via a line directly into my heart, have a tube draining my stomach, two stoma bags, respiratory treatments, injectable and buccal medicines, use a wheelchair that is like a bed on wheels, require hoists for transfers, and require 24/7 care from registered nurses (RGNs) and carers (PAs). I’m a decade beyond my original prognosis and determined to continue to far exceed it.

I have devoted my life to making a difference for others, working with charities, the NHS, local authorities, care providers, services, sitting on committees and boards, providing consultancy, delivering training, giving speeches at national and international events, and also directly working with individuals as an independent advocate, support broker and peer supporter/mentor. I work to uphold the rights of individuals, help them have the care and support they require, to empower, educate and train professionals, and to support and transform services to be the best they can be. I received my MBE for some of my work, an honorary masters degree, and in 2019 was named the 9th most influential disabled person in Britain.

However, now I need help. Our home can’t meet my needs as it is anymore, and is severely restricting my quality of life and the ability for my staff to meet my clinical and care needs. I hate to ask for help, but we can’t put this off anymore. I don’t want to end up in residential care because my needs will continue to outgrow the house, I have already taken a big decline since September. The extension will provide for a bedroom, bathroom and store room, and allow my current room to become a nurse’s room.

Please can you help us, in any way you can? Donations (no donation is too small), awareness, media, connect with companies who can support, connect with high profile individuals, whatever you can do to support us we will greatly appreciate. We have applied to DIYSOS numerous times but have sadly not been successful, so have had to take things into our own hands.