#Home4Lucy is a fundraising campaign to enable Lucy Watts MBE to remain living at home with her family, with the accessible and accommodating space that supports her complex, specialist and intensive needs resulting from her life-shortening illness.
We are looking for people to support us to fundraise for this absolutely vital, worthy cause, including volunteers with skills and experience such as comms, PR and fundraising, general volunteers and corporate supporters. We are also seeking people to actively fundraise to facilitate this build (see “Can You Help?” further down this page).
The architect has drawn up the plans, a disability consultant will be going over the plans with Lucy and her mother Kate in July, and they are still organising with building firms to find someone to take it on. You can view an animation of the plans for the build further down this page (note the bedroom in the animation does not look how the bedroom will look with Lucy’s bed, equipment, storage and so on in it).
A #Home4Lucy website is going to be developed and we will be seeking large community support. Any organisation, company or individual who supports this campaign and the build will receive publicity through the website and Lucy’s extensive networks, and the website will become a hub for those supporting or wanting to support the campaign.
A trust is currently being set up to hold the funds, hence why there isn’t yet a donation page.
Sadly DIYSOS, despite repeated applications from different individuals over the last few years, are not even returning contact or willing to take this on, so we are having to take this on ourselves.
Lucy Watts MBE is a 26 year old young lady from Thundersley (Benfleet), Essex. Lucy lives with a life-shortening illness and has survived, against the odds, for many years – she’s exceeded her original prognosis by a decade. Lucy lives a busy and impactful life, supported by her mother, Assistance Dog Molly, and a team of registered nurses (RNs) and carers (PAs), whom Lucy employs directly and manages the staff herself with funding from NHS Continuing Healthcare via a Personal Health Budget. Lucy is also supported by a young adult hospice-at-home service and has been under palliative care since the age of 16.
Lucy’s illness means she spends at least 21 hours a day hooked up to intravenous drips, for her TPN (feeding) and IV fluids, plus various IV medications, delivered through a permanent Hickman Line into her bloodstream, the tip of which sits just inside her heart. She also has a drainage gastrostomy tube and two stoma bags. Lucy is unable to walk, she requires the use of a specialist powered wheelchair that is like a bed on wheels, as it keeps her legs elevated, and spends a large amount of her time in bed, requiring a hoist to transfer from bed to wheelchair. Lucy requires 24/7 care, her needs mean nurses care for her 16 hours a day, then she has 8 hours overnight with a carer (PA) and 6 hours with a PA alongside the nurse during the day. Lucy’s condition will prematurely end her life and as mentioned, she is now a decade beyond her original prognosis, and with a lot of living yet to do, as Lucy says.
Lucy devotes her entire life to her work – voluntary, advocacy, activism and paid work – in which she uses her skills, knowledge, abilities, time and energy to be a voice for others, to help them get the care and support they need, to improve health and care services, to educate health and care professionals, to change or improve policy, to effect change, to raise awareness and make a difference in society. Lucy works with various charities, is a member of various committees and networks, is a Trustee of a Hospice (St Elizabeth Hospice), effects change nationally and internationally on palliative care including a personal influence on Dr Tedros, the Director-General of the World Health Organisation, founded the pioneering Palliative Care Voices network, speaks at events all over the UK and the world, face-to-face when she can or via remote video link or pre-recorded video, including giving a TEDx talk for TEDxNHS in 2019, co-leads research, and works closely with the NHS including as a member of the NHS Assembly, NHS England Personalised Care Strategic Co-production Group, the NHSE End of Life Commissioning Steering Group and the NHSE Personalised Care Organisational Development Board, acting as a lived experience consultant, amongst other things. Lucy also works as an Independent Advocate and Care Package Broker, commissioned by Clinical Commissioning Groups (CCGs), Local Authorities or by the clients themselves, and works as a consultant, public speaker, trainer, workshop facilitator and digital marketer. Lucy also works for Festival Spirit doing their admin, comms, marketing, grants and funding and more.
For her work, Lucy was appointed an MBE (Member of the Most Excellent Order of the British Empire) at the tender age of 22, for services to young people with disabilities.
In 2019, Lucy was was named the 9th most influential disabled person in Britain, in the Disability Power 100 List.
Lucy has also received an honorary masters degree from the Open University, is on the Digital Leaders 100 List 2020, is a Fellow of the RSA, was a 2019 Women of the Future finalist, has been on the Disability Power 100 List for the last few years, and was an HSJ Top 50 Patient Leader in 2015.
What Needs To Be Done?
A previous extension needs to be demolished as it is not suitable or safe for Lucy to move into. A new extension will be put up to incorporate a bedroom for Lucy, a bathroom and a communal area which incorporates separate access into and out of the house for Lucy via a ramp.
The bedroom will have sufficient space inside the room for all her equipment and for Lucy to move about in her specialist wheelchair, will include a sterile medical preparation area, ceiling track hoist, room for her profiling bed and specialist supportive chair, as well as a small sofa type chair for guests which can turn into a sofa bed. It will have an entrance door wide enough for her wheelchair and for her profiling bed to be wheeled into the lounge, as well as doors straight out onto the decking in the garden. A bathroom will also be adjoining her room. There will be plenty of room for storage for all of Lucy’s medical supplies and equipment, and a place to put Lucy’s wheelchair while it is on charge. Lucy will also do her work from this room, so storage for work files is important and an over-bed table will need to be purchased.
Then, the wall between the kitchen and the lounge will be demolished and the kitchen rearranged as Lucy has not been able to get into the kitchen in the 10 years we’ve lived here. There is no way of making it accessible any other way. This will make an open plan kitchen, diner, lounge and mean Lucy can access the kitchen and all areas of the house. This is important for social reasons as currently Lucy cannot be a part of mealtimes unless people eat with their plates on their laps in the lounge, which isn’t always possible.
We also hope to tackle the garden at some point in the future, but aside from laying new decking after the building work is done so Lucy can access the garden, the rest of the garden is not our priority currently.