My name is Lucy Watts and I will be 21 on the 2nd October 2014. I have life limiting complications of a genetic disorder called Ehlers-Danlos Syndrome, which has caused Autonomic Neuropathy and Intestinal Failure amongst other secondary conditions. I am fed straight into my bloodstream (TPN) via a Hickman line in my chest which goes into my heart and I have medication through this too. I also have a drainage PEG, an Ileostomy (stoma bag) and a Suprapubic Catheter but I will soon have a Urostomy (a stoma bag for urine). I am wheelchair bound, but forced to spend the majority of my time in bed.
I started receiving palliative care in 2011. I was literally starving to death. We had very little help and we didn’t know what to do. We tried to get help from the local children’s hospice but we were turned down; my condition did not meet their criteria. In desperation, a family friend turned oto the internet and found The J’s Hospice, a young adult hospice for 18 – 40 year olds who run an at-home service for the whole of Essex. The Director of Nursing, Bev Barclay, made contact and we haven’t looked back. When Bev made her first visit in April 2011 she realised that I was holding onto life by a thread. With her wealth of experience, she begged a consultant at The Royal London to admit me, saving my life. The consultant started me on Total Parenteral nutrition (TPN) despite fearst that I may be too weak to save.
Now a patient of The J’s Hospice, mum and I had Bev’s constant guidance. The J’s Hospice also provide carers who come in every week. We have someone to turn to, someone to co-ordinate my care and get me the help and support I need. Bev bridges the gap between me and my consultants, keeping totally up-to-date on all my health and social needs. Bev is at the end of the phone when we need her. She’s been an invaluable support ever since.
As well as being supported by the hospice, locally I was placed under the care of a palliative care doctor. Between Bev and the palliative doctor they helped us to get on top of the pain, get the right antiemetics (antisickness) and looked at me as a whole person. For once my quality of life was the focus of my treatment, and every aspect of my life was considered in my care. They worked together with my main consultant to improve the quality of my life. Although it took some time to get the balance right, because my condition is being monitored, medicines and care can be adjusted accordingly. It was around this time that I said to Bev that I wanted to make a difference, but I didn’t know how.
Being prepared for the end of life
Since then, I’ve deteriorated a lot and my consultants have told us there is nothing more they can do. We know my life will be limited and I am on the End of Life Care Register. We have had to prepare my end of life documents and advanced care planning. This has led to some difficult but very necessary conversations – we can’t pretend it isn’t happening. Mum and I have talked through a lot of things, things no parent should have to talk about with their child. My mum has to face the fact that she will probably outlive me – no parent wants to think about that – but also the fear that, should she become very sick, she would leave me behind with all my extensive medical needs. We have a very good relationship through and I am so grateful to my mum for learning all the nursing procedures necessary to keep me alive and at home. Home is where I want to stay, through life and in death.
In recent years I have had some respite stays at a young adult hospice three hours away. Jacksplace, the young adult hospice which is part of Naomi house. It is a lovely place and the staff are fantastic, but ideally I want to stay in my own home. My mum needs a break, she doesn’t get any time off except twice a week we have a carer in so she can go out for up to a maximum of three hours (as she still has to do my intravenous medications). We hope to be able to train and employ two nurses to come into our home to give mum a break. Then she can go out without fitting it in between intravenous medications and can have time to herself, spend time with my sister Vicky, see her parents or spend time with friends.
Today we manage symptoms and complications as they come up, and try to make the most of every day. I love walking my dog Molly, taking photographs and writing. Putting my writing to good use, and my new-found love for speaking, I am now an ambassador for Together for Short Lives.
Lucy Watts is ICPCN’s first Youth Ambassador and helps to raise awareness of the rights of children and young adults with life-limiting and life-threatening conditions to receive palliative care.
Lucy talks about palliative care for young adults