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Children’s Hospice Week 2015

Children’s Hospice Week, 11-17th May 2015, has almost arrived! Join us in making a difference to the lives of life-limited and life-threatened children and young people and their families in the UK and all over the world. As Ambassador (‘Young Avenger’) for Together for Short Lives, the first Global Youth Ambassador for the International Children’s Palliative Care Network, being life-limited and knowing other life-limited children and young people and their families, I know how effective good children’s palliative care is. EVERY child who needs it should have access to palliative care, regardless of age, location, race or religion. It is estimated that 20 million children worldwide could benefit from palliative care. Palliative and hospice care, contrary to the public’s expectation, is not just about dying; it’s about living, too. Living well and with quality, and then it extends to the end of life care, to help those have a good death, and to bereavement support for the grieving family. You see, children’s palliative and hospice care isn’t just about the individual child/young person who is life-limited, life-threatened or terminal; it’s about their family and loved ones too.

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Palliative care, in the simplest of explanations, is about symptom control. Those needing palliative care are life-limited, life-threatened or end of life, but the constant through this is symptom control, treating pain especially, and other debilitating symptoms to maximise quality of life. Our (life-limited/life-threatened) lives will be shortened, so we need to have the best quality of life possible. We have to try and fit in a lifetime into a snapshot, like writing a whole story in a few sentences. This is why symptom control is so vital, we need to be comfortable and supported to live a life with quality, and to make the most of every moment we get. 
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In the UK, as a successor to the well-developed children’s hospices, we now have some young adult-specific hospices (or units attached to children’s hospices). It carries the positive, quality of life, fun and respite aspects of children’s hospices, as well as provisions for end of life, but geared towards young adults. They recognise the needs and desires of young people, but also that they are not yet mature adults with a wealth of life experience. They focus on independence, but still provide the support needed by young adults, especially those with learning difficulties and complex conditions that will require parental/familial, carer or advocacy support in varying degrees. I have stayed in Jacksplace, part of Naomi House, a few times and I have never seen such a happy place. Children’s and young adults’ hospices are wonderful, vibrant places to be and are so much about living. 

When I became ill in 2008 aged 14, we turned to the local children’s hospice but I didn’t meet their criteria. When my needs changed, in early 2011 we turned to them again, only to be told I was too complex, and, being 17, they said I was too old to take me on as a new patient. That’s when The J’s Hospice came on board, currently an at-home service, and my hospice nurse saved my life. It might sound unusual, a hospice saving someone’s life, but it’s true. She fought for the treatment I needed (TPN feeding) and helped to change the emphasis of my care from fixing unfixable problems to symptom control and quality of life. The J’s have been a huge support, not only providing carers to look after me, but sorting out so many issues, getting on top of my symptoms, supporting us, acting as advocates and have become our friends. A few years later we were looking into respite for mum, and the only place in the country that would take me and be able to do my TPN and IV medications was Jacksplace, over three hours away near Winchester. I’ve been a few times but it is a huge strain on mum and I as mum has to pack up my enormous amount of supplies, TPN, medications, clothes and everything else I need, and the drive down there exhausts me so I’m unable to properly enjoy the time spent there. However we have just been awarded a nursing package to support me in my own home as The J’s currently don’t provide nursing care at home and Jacksplace means being miles away from my family and support network. This nursing means mum can have a proper break, having not had one day off in seven years and five months. We will continue to be supported by both The J’s Hospice and Naomi House and Jacksplace as we value the services and support these charities give to us. Palliative care has enriched my life in so many ways and has allowed me to go on, be a voice for and make a difference to the lives of other life-limited and life-threatened children and young people who can benefit from palliative and hospice care. 

Together for Short Lives, the organisers of Children’s Hospice Week, have chosen the focus of this year’s awareness week is: making every moment count.

“This year Children’s Hospice Week aims to:

  • Raise awareness of what life is like for families caring for children with life-limiting and life-threatening conditions
  • Improve public understanding of the range of services available to support families
  • Raise money for children’s palliative care services.”
“We are focussing on how precious time is for families by capturing moments in time. For families this means showing what real life is like – the positive moments and the more difficult times; and for services it means showcasing the wide range of support that helps families make the most of every moment.”

“We will be encouraging people to share the moments that matter to them on social media throughout the week by posting pictures, videos and comments on Twitter and Facebook, using #momentscount “

Please help us raise awareness of and funds for children’s hospice and palliative care by sharing your moments that count along with the hashtag #momentscount 

To kick it off, five moments that count to me:

1. Giving my speech in Parliament. It was my first speech, and the very start of my charity work. Having been a painfully shy child, I wouldn’t even put my hand up in class to answer a question, not because I didn’t know the answer, but because I hated being the centre of attention and being put on the spot! I just wanted to blend in. Then I became ill and my transformation began. Suddenly I had to speak up, advocate for myself and my confidence grew with every time I was put in this situation. It was when I went through the transition from children’s to adult’s services that I started to develop and felt more and more at ease. Suddenly I had to speak for myself and fight for whatever treatment, care and support I needed. However much as I was at-home in meetings and appointments, I was still terrified of speaking to more than a few people and hated feeling under pressure. When I was offered the opportunity to speak for Together for Short Lives in Parliament, how could I say no? All along the journey my illness has taken us on, my overwhelming desire has been to make a difference. When this opportunity arose, I grabbed it with both hands. I’d never given a speech before in my life, I was always too nervous, but was surprisingly calm despite the nerves. Mum, however, was wringing her hands and looked terrified. Then it was my time to speak. I read my speech to all the MPs and children’s palliative care professionals. I finished with a round of applause, and I was elated. Dr Dan Poulter MP laughingly said he couldn’t follow me speaking, as my words were more powerful than his. And I haven’t looked back since. Palliative and hospice care has allowed me to use my experiences and knowledge to be a voice for others, especially those who are unable to speak for themselves and to enlighten the public, professionals and commissioners alike, as well as to make a difference. I want to make every moment count.

2. Molly and I winning Friends for Life at Crufts. Knowing that people were voting for us and though us worthy winners was so special. The weekend away at Crufts was amazing. Winning £1500 for Dog A.I.D. (Assistance in Disability) and accumulating 1 million hits for the charity was also a highlight. 

3. I was honoured when my main consultant, Professor Aziz, asked me to continue being such a positive role model for other Ehlers-Danlos and digestive condition sufferers. I look to him for approval as I respect him so much. Through him, and the rest of my team, I am still here and able to make a difference. 

4. I was asked to speak at an event where the focus was children and young people’s health. At the end of my speech a parent asked if she too may speak for a few moments. She told the audience that she had a son with disabilities who is the same age as me but that he is not in a position to speak for himself nor does he have the ability to fight for himself. This lady thanked me for being his voice, for fighting for him and all the other children and young people who may not be able to speak for themselves. My mum looked over at me and caught my eye. We knew at that moment that I was doing something worthwhile and perhaps this was my purpose in life. 

5. Through my illness and my charity work, I have met some wonderful people, many of whom have become friends. I have had some incredible experiences and grown as a person in ways that would have been inconceivable had I not been unwell. 

Each new day is a gift. I know my time is limited, so I want to make every moment count. These are five special moments which matter to me, that count in my life. Join me and share yours, too. 


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