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Children’s Palliative Care and the NOW Campaign

I know this is slightly different and perhaps not my normal sort of blog post, but this is something that is very important to me.  I have recently been appointed Global Youth Ambassador for the ICPCN (International Children’s Palliative Care…

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Courageous Parents Network Piece

I recently wrote a piece for the Courageous Parents Network about living with a life-limiting/life threatening illness, palliative care, end of life planning and quality of life. It's a brief summary of my journey since becoming ill, the support I've had,…

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It’s Christmas Time

It’s that time of year again: it’s Christmas time. Where has 2014 gone? It seems like yesterday that mum took the decorations down, and now they’re going to go back up again. Christmas is a difficult time for many people for…

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Leaders of Care: Speech on Transition

Thursday 27th November 2014 ~ Today I went to the children's palliative care conference "Leaders of Care - for equity, effectiveness and efficiency in children’s palliative care" run by Together for Short Lives to give a speech with my hospice nurse on transition.…

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The J’s Hospice Charity Ball Speech

Bev (left), Mum Kate and I22nd 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…

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Children’s Health and Wellbeing Takeover Day – My Speech

19th November 2014 - I gave a speech at the Children's Health and Wellbeing Partnership Takeover Day at the Department of Health. The event was organised to draw together important paediatric and child health professionals with young people and to work together…

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SEND, Transition and Outcomes for Young People

The transition period is a difficult time. Young people have enough going on in their lives, so to be poorly and/or disabled just adds another dimension. Then when you factor in the change from children’s to adult’s services, it’s a…

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The Listening Project: Living While Dying

Earlier this year I went to the BBC studios to do a recorded conversation for The British Library and BBC Radio 4 as part of The Listening Project. It will be archive for many years to come in The British Library. Mum…

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Turning 21 – The Journey into Adulthood

Sunday 14th September 2014 - It’s my 21st birthday on the 2nd October, and I am truly grateful I am here to reach this milestone. Every birthday is a milestone for us, but turning 21 is a huge one. For someone…

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