Lucy 3Twenty year old Lucy spoke at the Together for Short Lives parliamentary reception at Westminster where we urged MPs to adopt eight priorities for their parties’ General Election manifestos that, if implemented, would transform children’s palliative care in the UK.

Lucy became ill at the age of fourteen, and was diagnosed with Ehlers-Danlos Syndrome, or EDS, a few days after her fifteenth birthday. This is the speech she gave on 19 November 2013.

“We are lucky in this country to have an NHS, Social Services and the benefit system. There is support for children and support for adults, from neonates and unborn babies right up to the elderly. However what has been forgotten is that in between children's and adult's, there are the young adults. We deserve the same recognition and distinction as children's and adult's services, but it's barely recognised. There is the transition period, but young adult care goes beyond transitioning from children's services to adult services. As a result, the transition can be a huge leap, too many changes too soon without factoring in the needs of people who are not children, but not mature adults yet either. I am a young adult, a girl still dependent on her mother, the person I take guidance from, yet I am expected to understand and make decisions without her support. Compared to children's services where my parents made the decisions and where my input was valued, but I was not the one on whom the decision rested. This is a huge jump, with no middle ground. It's a jump I made, and as you will find out, it isn't all plain sailing.

“I became ill at the age of fourteen, and I was diagnosed with Ehlers-Danlos Syndrome, or EDS, a few days after my fifteenth birthday. I was born with it, the condition is genetic, and it has no cure. EDS is considered a rare disease, so not everyone has heard of it; even doctors.  My life has many limitations, both in my life expectancy and my quality of life. I'm attached to a pump twenty-four hours a day, seven days a week, pumping in a special mix of nutrients, vitamins and fats directly into my bloodstream to keep me alive. I have an array of tubes and bags. They have become part of my body, part of my identity, and one of them is my life line. My condition has caused secondary conditions which has led to my gut failing. My bowel cannot digest or absorb enough nutrients to sustain life. I haven't eaten for over four years. It has also led to me not being able to sit up for more than five or six hours per day, meaning I spend the majority of my time in bed; my bladder no longer works, so I have a permanent catheter; I have a tube that goes into my stomach to drain it as my stomach doesn't empty properly; I have an Ileostomy to bypass my paralysed colon, over which I wear a stoma bag; and a central line, the tip of which sits just inside my heart. As you can imagine, with so much going on, I am very poorly and need a lot of help. I cannot walk, which means I am wheelchair bound for the limited time I am not in bed. My electric wheelchair is one of few pieces of independence I have. It is one of few things I can control.

“There is very little support for the life limited young adults. Decades previously many of us would not have survived childhood. We are no longer children in the medical and social definition, we are young adults, but adult services aren't equipped to deal with the wants and needs of young adults. Being ill at fourteen meant I started out on children's wards. Then I turned sixteen and my transition into adult services began. On one hospital admission I was on a children's ward where my mum could stay with me during the day and throughout the night. In my next admission I found myself on an adult ward. I was in a bay with five dementia patients, totally reliant on the overstretched nurses who didn't have the time to hold my hand and talk to me; they barely had the time to give me my medication or change my bed. They never had the time to shower me or do my hair; my mum used to spend visiting time doing these. I felt vulnerable and scared stuck in bed unsure of how to deal with the dementia patients. These defenceless and confused ladies misused the call bell system resulting in the nurses ignoring the majority of the buzzing, but that meant my needs were also ignored. I needed their help with everything; even going to the toilet. I spent five lonely weeks on this ward.

“I am fortunate my transition into adult social care was a smooth procedure. About 6 months prior to my 18th birthday, I was introduced to the team that would take over my care, including my adult social worker and the transition social worker. They explained everything that was going to happen, how the change would affect us, and what would be expected of me as an adult. I felt comfortable and was encouraged to speak up and input what I wanted and how I felt about things. My views were of paramount importance and everyone was working hard to make my life as I wanted it to be. I got to know the people who would take over from the children's team in advance and as I got to know them and trust them it made the whole thing much easier. One of the things I struggle with is the lack of control in my life, so the things I can control are precious to me.

“Young adults are too old for children's hospices, but we don't fit into adult hospices either. Adult hospices are about dying, they're where people go to die, not for respite. Young adult hospices are about living, laughter, fun, and generally being young adults. I am supported by two young adult hospices; The J's Hospice, who are local to me, and Jacksplace, which is a two hour drive away in Hampshire. Hospices look at you as a whole person, and my hospice team from The J's draw my care together, as I see a lot of specialists who only look at the particular area they're treating. Quality of life is of the utmost importance when you have a life limiting illness, as you want to be able to enjoy the time you have left.

“Although our bodies might be dying, our minds and spirits are fighting to live. I'm still a young person with wants, needs, hopes and dreams. I want to have fun and enjoy myself, do things people my age normally do, and I have plans and goals for the future. I have short and long term goals, so that I can achieve things in the short term and if I am lucky enough to live that long, achieve goals that will take time and patience. I like to plan things, but one thing I've learnt through my illness is to take one day at a time. I have the same desires, hopes and dreams as everyone: to fall in love, get married, have children and enjoy life to the full. Though I am chronically ill, disabled and life limited my passion for life is stronger than ever, because I am so aware how precious life is.

“Through my illness my relationship with my mum has deepened.  She is my main caregiver, and the only person who can care for my complex needs and perform highly specialised procedures to keep me alive each day.  Decisions made in my life directly affect hers, so she needs to be there with me.  Without her I would not be alive, I wouldn't be as happy as I am, and I wouldn't have had the confidence to speak here today. My mum is my hero. I want her involved in every aspect of my care because she knows me best. We have had to adapt and change as my condition worsens and we have had to discuss my end of life plan, my funeral and where I would prefer to die. How do you go about daily life hearing things and making decisions like that? We have, because we've had no choice. You have to learn to take things one day at a time, making the most of every day, every hour, every minute you get. Because things can change so quickly you learn to live, love and laugh your way through every day. Life is the most precious thing on earth, and I intend to live well.”

To hear more from Lucy you can read her recent speech at the Children and Young People's Health Outcomes Forum 2014 here.