What if we viewed lived experience as an asset? As an asset of professional, economic,…
|Bev (left), Mum Kate and I|
22nd November 2014 – I attended The J’s Hospice Charity Ball in the role of guest speaker and had a wonderful night. I spoke about my care from The J’s and how they have helped me to live with some quality. I finished to a standing ovation and was congratulated many times for my speech – there were a few tears from some people. It was a privilege to speak there and to represent not only the patients of The J’s, but young adults across the country with life limiting, life threatening and terminal conditions. Here is my speech:
My name is Lucy and I recently turned 21, celebrating yet another birthday actually in hospital. I have been a patient of The J’s Hospice since I was 17, and would not be here tonight without the support of The J’s staff and my nurse Bev’s dedication to her patients. By chance, a friend found The J’s information on the internet and persuaded my mum to seek their help. At this time I was desperately ill and at our first meeting Bev immediately recognised that time was not on my side. She left our home and contacted a consultant who took me into hospital and literally saved my life. A line was implanted in my chest, going up into my neck, where it enters the vein, and goes down into my heart. TPN, an intravenous feed is given through this line, and continues to keep me alive today. I also have an array of other bags and tubes, and lots of medications, all functioning to keep me alive, taking over the roles that my failing body can no longer perform for itself.
For the first time since I became ill when I was 14, The J’s realised I was not just a patient with a host of medical problems; I was a person with goals, dreams, wishes and a desire to live. My mum had been handling all my care alone as well as working full time. Having The J’s as support, she now had someone to help coordinate my many consultants spread across London hospitals, someone to turn to for advice and an outstretched hand to support her when times were difficult. Mum has recently given up work as my care becomes ever more complex and involved, but having someone there to help us is still invaluable.
Going from being healthy, to becoming ill and then becoming classed as life limited with a life threatening illness is a huge journey. There have been deep, dark, terrible lows, but also incredible highs. I have grown as a person in a way that I never would have had I been well. I have achieved many things and made a difference in ways that would never have been part of my life had I remained healthy. Granted, it’s a high price to pay, but I can’t regret what this illness has done for me and I appreciate the opportunities I have had as a result, so much of which I owe to Bev and The J’s Hospice. It was Bev who helped me discover my talent for writing and my penchant for speaking. Everything I have achieved originated from the staff listening to me and believing in me, and through the support of friends and family. Who could have foreseen the painfully shy child I once was would grow up to speak in Parliament? Who would believe that my medical team would be asking me to help them?
However, this situation is not just about me. I have an elder sister, Vicky, who has been watching from the sidelines as mum looks after me. She also needs time and support from my mum. She has had to accept that my needs will always take priority over anything else that may be happening, no matter how important an event may be to her. The fantastic carers at The J’s are able to come in once a month at the weekend which allows Vicky and mum to spend quality time together. The carers also come in during the week to give my mum time to spend with my grandparents, who are very elderly; they need time with their daughter too. My mum sometimes uses this time to catch up with friends – or just on some much needed sleep. When a child becomes ill, it changes the whole dynamics of a family. We strive to maintain some normality within an abnormal and very difficult situation. It’s not easy. Without the expertise, trust and friendship the carers provide, my mum would not be confident enough to leave me.
My mum has to live with the thought that she will outlive me. We will all die one day, but my time will be shorter than most. The hospice have helped me to get my wishes down on paper and also helped us to feel able to speak about my death. No parent should have to face losing their child, that’s not the way it’s supposed to be. However, the flip side of this is perhaps an even greater fear that your sick and medically complex child may outlive you. Who will take care of them then? Who else would give up their life to take on the role that requires nursing and care 24 hours a day, 7 days a week, 365 days a year? Who else could forsake their entire life to take care of their special child with the love and devotion that only a parent can give?
The J’s Hospice provide vital medical, personal, social, spiritual and psychological support to young adults with life limiting and life threatening illnesses across Essex. The UK is crying out for more support for young adults and The J’s is leading by example. I am very fortunate to be a J’s patient. The J’s support over the past three and a half years has been immeasurable. From the nursing support such as coordinating my care between my many consultants, getting medication such as antibiotics and supplies that I need by working with my GP, getting test results and helping us with my nursing needs, to providing carers to support me physically and emotionally and to allow mum to spend time with my sister and to do things such as go shopping, to all the other support and therapies The J’s offer – we couldn’t manage without it.
It is a privilege to be here tonight representing all the young adults living with a life limiting, life threatening or a terminal diagnosis, as well as to put a face to the patients of The J’s. Our bodies may be dying, but our minds and spirits are fighting to live. We still have goals, hopes, dreams and needs – not just the medical ones that are at the forefront of professionals’ minds. We are not defined by our diagnosis, we are not simply a condition or a number, we are young people striving to live despite our illnesses. With the support of The J’s, many of us have been helped to live while we’re alive. We’re being helped to live by a multidisciplinary team of professionals all working with one goal in mind: quality of life. I had no quality of life prior to The J’s coming on board, and though many would not be satisfied with the life I have, I am grateful for the few hours I can sit up to walk and train my dog Molly, to go and speak at an event, and even just to have enough control of my symptoms to allow me some quality time to write pieces for charities or my blog. And most importantly to share time with my mum and sister, filling our house with love and laughter. Previously my medical condition was treated by each specialty, but nobody looked at me as a whole person and listened to what I wanted out of life. Now I am supported to live the life I want to lead. I am achieving things that never would have happened had the hospice not changed my life.