Lucy Watts MBE is a 27 year old disabled woman from Thundersley in Essex who lives with a progressive life-limiting condition. Her condition is ultra rare, possibly unique, and causes extremely complex medical needs, requiring constant specialist care and intervention to survive and thrive - and as a disabled person Lucy faces many access barriers in her daily life. Lucy has never let this stop her, however, and has lived an incredible life making a difference for others in a variety of ways, working with charities, the NHS, advising services and providers, working as an Independent Advocate, sitting on committees and boards, acting as a trustee and chair of different charities, consultancy work, training professionals and running her own business and with a new business startup currently on pause. For her work Lucy received an MBE from the Queen aged 22 and has received various other accolades over the years - although, Lucy reminds people, it is not awards or recognition she seeks, but simply the act of making a difference for others.
Lucy lives with her mother, Kate and her Assistance Dog, Molly, a working cocker spaniel who Lucy trained to become her Assistance Dog with help from a charity. She requires intensive round the clock care which is provided mostly by registered nurses (RGNs) with some care provided by carers (PAs), which Lucy manages herself, employing a team of nurses and carers to meet her needs using NHS funds via a Personal Health Budget (PHB). She is considered to be among some of the most complex patients to be managed outside hospital.
What is needed?
Lucy devotes her life to improving the lives of others, but now Lucy needs our support. The bungalow in which Lucy lives is not equipped to meet her needs. The house is taken over with Lucy’s equipment, medical supplies and so on and the house does not allow Lucy any freedom or ability to participate fully in everyday life. She cannot move around the place freely as her wheelchair is too big and cannot get in the kitchen at all. She is in a tiny bedroom that does not meet health and safety guidelines for some of the care she requires and that makes providing Lucy’s care extremely difficult. In order to hoist Lucy into her wheelchair, we have to remove furniture such as cabinets out of her room to make way for the wheelchair and even then, there’s insufficient room for 2 people to safely hoist Lucy, and they also have to factor into the equation Lucy’s drip stand, her infusions and drainage bags, which cannot be detached from Lucy, which makes for a challenging procedure. The staff cannot safely meet Lucy’s needs in her current bedroom and Lucy’s care and quality of life is hampered by it.
A new extension is needed to meet Lucy’s essential clinical/medical, health, physical and access needs, as well as her social and wellbeing needs. One that is fully equipped, suitably sized and custom designed to meet her needs now, as well as for future as Lucy deteriorates and her needs increase, including her end of life, which we hope is a long way in the future yet. A previous extension exists but is unsuitable and needs redoing from the foundations up. Without the new extension Lucy’s needs will exceed what can be managed at home and she could end up in residential nursing care — if a suitable placement could even be found — which would spell the end to everything that makes life worth living for Lucy.
What we need to raise:
We have an approximate quote for costs of £130,000 for the extension and related costs. Obviously Lucy and Kate don’t have the funds to pay for this, so we need to raise the full amount to enable the build to go ahead as soon as possible. The planning approval is almost complete and the builder will be ready sometime soon, so we urgently need to get the funds together.
Lucy and her team are also approaching Lucy’s CCG regarding funding a much more suitable, more specialised profiling bed known as the Arctic One Turning Bed (from Centrobed), but so far have been unsuccessful in securing funding for this (£8340.00 + yearly maintenance). If we remain unsuccessful, and if our funds allow, we may have to purchase this bed ourselves. Lucy needs this bed for comfort and independence and it will help to prevent an increase in Lucy’s care package by not needing to be increased to 24 hour 2:1 care — for the time being, at least, and we would like to prevent this for as long as possible.
Lucy has a progressive illness that is either ultra-rare or unique - a “syndrome without a name”. It comprises a progressive neuromuscular, connective tissue and multi-system disease that is life-limiting and life-threatening. Lucy wasn’t expected to reach adulthood and it’s incredible she’s still alive — thanks to good NHS and palliative care she’s still here and we hope she can keep defying her prognosis. The condition causes progressive organ dysfunction, damage and multi-organ failure; progressive muscle weakness, including skeletal and respiratory muscle weakness; central, peripheral and autonomic nervous system dysfunction; degenerative joint, bone and spine complications and deformities; chronic inflammation; recurrent life-threatening infections; severe disability and much, much more.
Lucy is dependent on intravenous nutrition called Total Parenteral Nutrition (TPN), a feed comprising a sterile fluid mix of nutrients delivered directly into her bloodstream via a Hickman Line giving access directly into her heart. She also receives intravenous fluids and various intravenous medications into this line every day. This must be done under strict aseptic (sterile) conditions to prevent any bacteria getting into the line which would cause a life-threatening bloodstream infection. She also has various other complex needs, including a venting PEG (drainage gastrostomy), an Ileostomy (bowel stoma bag) and Urostomy (urinary diversion stoma bag), nebulisers and a lung volume recruitment device for respiratory secretion management, injectable and buccal medicines, requires a specialist wheelchair for mobility, needs hoisting for transfers, frequent courses of intravenous antibiotics, and various other interventions and medical procedures necessary to keep her alive and to enable her to live her life. There is a whole team supporting Lucy to survive and thrive, from the staff she employs to care for her at home; to the district nurses; community palliative care nurses; through Haven’s Hospices (The J’s and Fair Havens) she’s supported by the palliative care consultant, clinical nurse specialists, counselling, social work and complementary therapy teams; various consultants and teams at hospitals in London; her GP and practice nurse; the Continuing Healthcare team at the local CCG, who fund her care package; and various other professionals.
Lucy has taken a severe decline in health since September 2020 and her team are struggling to get on top of things. Lucy recently spent 41 days in Fair Havens Hospice trying to improve her symptoms and quality of life. Her needs have increased and unfortunately Lucy never regains what she loses, due to the progressive and degenerative nature of her condition. The family are struggling immensely at the moment and are having to come to terms with the recent change in Lucy’s health. The recent decline has made the extension and this fundraising campaign even more vital and urgent.
Lucy’s mum, Kate:
Lucy’s mum, Kate always feels like she can’t relax in her home. There are always nurses and carers around who are occupying the social spaces in the house (kitchen and lounge) due to the lack of nurse’s room, meaning there’s nowhere for Kate to go to relax besides her bedroom. Despite how wonderful Lucy’s team of nurses and carers are, and they truly are fantastic, Kate always feels unable to relax, always feeling like she’s being watched or listened to. This extension will allow for the creation of a nurse’s room which will be fully equipped for the staff to use, so then Kate regains her home and its social spaces. It will also mean the staff aren’t walking past Kate’s room 24/7, nor using the bathroom beside Kate’s bedroom, so Kate will be able to sleep properly at night, undisturbed by the staff caring for and supporting Lucy. This is important for any family member, but especially for Kate who had a brain tumour removed in 2015 and suffered a brain haemorrhage and stroke following the operation, and then developed epilepsy. She wasn’t initially expected to survive, and when she did, was expected to be profoundly disabled for the rest of her life. However, Kate made the most miraculous recovery, leaning to move, eat, talk, walk, regain cognitive functions and care for herself again from scratch, to the point no one would realise what she experienced and how seriously ill she was, and her epilepsy is controlled with medication. So Kate needs her sleep, and she needs to be able to relax and enjoy her own home. This extension will transform Kate’s life, as it will Lucy’s.
The extension and adaptations:
The extension will include a fully equipped bedroom, small toilet, and garage area for storage of a full size medical fridge for her feed and room for medical supplies and the washing machine and dryer.
Lucy’s bedroom will have sufficient space for all her equipment including for her powerchair so she can mobilise around her room and around the property with the legs of her wheelchair elevated as she requires. It’ll have a ceiling track hoist for transferring Lucy that gives full hoisting throughout the room. It will have a sink with mixer tap and elbow lever for aseptic hand washing required for her nurses to perform the medical procedures Lucy requires to survive — and this sink will also double up with being a hair salon style sink with water hose so Lucy can have her hair washed in the sink whilst in her wheelchair, as she can’t use the wet room shower. There’ll be room for the medical trolley for undertaking aseptic and intravenous line access procedures, sufficient storage for medical supplies within the bedroom and the ability to organise medical items so the room doesn’t look like a hospital. It will have enough room for storing and charging Lucy’s powerchair. It will also have storage for Lucy’s cameras, photography and filmmaking equipment. It will have sufficient room for a sofa-bed chair for guests, and hopefully also an armchair for Lucy, as well as a desk for Lucy to do her work from. It’ll have a large door to allow Lucy’s medical profiling bed to be wheeled from the bedroom into the lounge as she could become bed bound again in future and this will stop her being isolated in her bedroom, as well as full bifold doors onto the decking to allow direct access to the garden for Lucy whether being wheeled out in her bed or going out there in her wheelchair.
It will have a small toilet room beside the bedroom for the nurses to use themselves and to use to empty Lucy’s jugs and bags down the toilet. We already have a wet room in the property but sadly Lucy isn’t able to shower due to her condition so it doesn’t get used by Lucy. The extension will have a garage area for the washing machine, dryer, medical fridge and more storage and will include a hallway area with access for Lucy out of the extension separately to the front door. This hallway will also give access to Lucy’s room from the nurse’s room so the staff don’t disturb Lucy’s mum by walking past her room, and a call bell system will be installed. Lucy’s old bedroom becomes the nurses room where there’ll be a little kitchenette (worktop and storage with a fridge, kettle, sink and microwave, storage for cups, plates, cutlery etc.) and a sofa bed and a telly and a whiteboard for additional communication between staff.
This will give the family back their home and allow Lucy to live safely and have more quality, access and independence around the bungalow. It will transform their lives.
What can you do?
We need people to donate and to fundraise for us in as many ways as possible. Every little helps, everything is appreciated. You will help keep Lucy safe and cared for at home and enable Lucy to live a full life and continue changing the world and making a difference with her work. You will allow Kate to get her home back and to be able to relax and get enough sleep.
Whatever you can do to help would be appreciated:
Direct donations from individuals (no amount is too small!)
Helping us raise awareness — sharing this donation page, helping with media coverage
Donations from businesses
Match funding from businesses and business owners
Raffles, auctions and other activities (ensuring a small lottery license is in place)
Grants from charities or trusts
Donating your time to support
Donating a royalty from products or services sold
Anything else you can think of
Please share! Thank you. Your support is appreciated beyond measure — you are our heroes.
- What about DIYSOS?
We have applied for DIYSOS The Big Build at least 12 times over the last 8 years, and we’ve had various other people nominate us. Sadly the team must not feel our story and need as important as other families they help, which we understand due to the limits on how many people they can help, but it leaves us having to do this.
- Why can’t you get a DFG grant?
A DFG wouldn’t cover the full costs of the extension nor provide all the necessary elements of this build. However, a DFG is in application stages for knocking through into the kitchen to make an open plan kitchen, diner, lounge so that Lucy can access all three spaces as she currently cannot access the kitchen thus can’t participate in the social element of mealtimes.
- How will our money be held and used?
We are in the process of setting up a special trust for Lucy (The Lucy Watts Trust) to hold money to support Lucy in her life, after which we can create a dedicated trust bank account for holding the funds. However, we urgently need to start raising funds in the meantime, and Kate has set up a bank account to hold the funds which can then be transferred into the trust once it starts, and/or pay for any upcoming building related costs. We 100% assure our donors every penny will be used for the trust and the trust only, for the benefit of Lucy and her life, her survival and her quality of life. As such the bank details will soon change once the trust bank account is ready.