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My Illness Doesn’t Work 9 to 5

News and comment

My name is Lucy Watts and I am 22 years old. I have a life-limiting/life-threatening form of a condition called Ehlers-Danlos Syndrome. I spend a lot of time in hospital, but I want to be supported in the community, in my home where I belong, with my mum, Kate, my elder sister, Vicky, a cat, Joey, and my assistance dog in training Molly. Children and young people like myself, who spend such large parts of their lives in hospital, know how precious time at home is. However, we cannot live at home without all our health professionals working together to support us to stay at home.

Funding the staff to provide 24/7 care in the community both enhances a patients quality of life, allows them to stay at home, and is far more cost-effective than for these patients to end up in hospital, taking up beds when they can be managed safely at home. This is why I’m backing Together for Short Lives’ #carearoundtheclock campaign to make sure.

Complex needs

I have an unusually severe case of Ehlers-Danlos syndrome – normally my type is not life-limiting. I suffer from a number of related/unrelated conditions including multiple organ failure (intestinal and bladder failure), Autonomic Neuropathy and numerous others. I am fed into my bloodstream (TPN – a sterile mix of nutrients delivered into a large vein) via a Hickman Line into my heart, and I have a tube into my stomach for continuous drainage of my stomach, an Ileostomy and a Urostomy. I am wheelchair bound, but forced to spend a lot of time in bed. As a result of my conditions, my needs are extremely complex, and I am cared for by a team of intensive care nurses and carers as my mum can no longer care for me due to a stroke after the surgery to remove a benign brain tumour.

After so many long admissions over the last 8 years I have been ill, I value my time at home. At times I have felt nothing more than a list of diagnoses and a bucket-load of symptoms. But when palliative care came on board, suddenly I was a person, not a condition – what I thought, what I wanted, who I am, my interests and hobbies and my goals for the future were central to my care; not just my conditions and symptoms.

The palliative care professionals focused my quality of life, not trying to fix these incurable problems. I felt like a person again, and we strive to manage my care in the community for as long as possible.

24/7 care needs

My illnesses, needs and acute episodes do not fit into the traditional 9-5 working day – I can’t guarantee that I will not become poorly on a Friday evening, especially if it’s a bank holiday. But when I am ill, I want to stay at home as much as possible, as it’s safer – hospital admissions for me always result in me catching an infection – and it’s far more cost-effective to be at home. Most of all it’s where I should be.

My care requires a multitude of professionals including doctors, clinical nurse specialists, pharmacists and others. In order to be kept at home, I need all of my professionals to work together.  However, the lack of funding for out of hours means lots of them work 9-5 in the week. This means there is not the ability to provide more specialist staff for 24/7 care for people like myself with complex needs and life-limiting/life-threatening conditions. This means that when I get poorly after 5pm, or at the weekend, hospital is the only place to go. I have had many unnecessary admissions as a result of a lack of 24/7 care. Had it been in place, I could have stayed at home

Making a difference

I urge parliamentarians to ensure that there are enough skilled and experienced people to manage these patients in the community, especially children and young people’s palliative care. We want to remain at home, with our families, which is where we should be. We should not face unnecessary hospital admissions due to the lack of skilled staff who can provide 24/7 care. We should be assured that hospital admissions are only undertaken when absolutely necessary, and that there are skilled staff in the community to provide care and support us to remain in our own homes.

The Chancellor’s Comprehensive Spending Review is an opportunity to address this – to make sure that children’s palliative care receives fair and sustainable funding. We already face a shortened lifespan – let’s not spend our precious time in hospital unnecessarily.

Lucy Watts has worked with Together for Short Lives to highlight the needs of young people with life-limiting/life-threatening conditions since November 2013 when she addressed a parliamentary event on TfSL’s behalf. Since then she hasn’t looked back, speaking at the Department of Health, speaking at and attending other events, appearing in videos, recordings, and the radio, writing numerous pieces and blog posts, amassing 145,000 views on her personal blog, and trying to make a difference wherever she can.

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  1. Good luck with your campaign, you have the full support of everyone at Special Needs Jungle. Let us know how we can help.

    27 February, 2018
    Tania Tirraoro