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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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Pseudo Obstruction Research Trust – Donate By Text

Christmas is a time for sharing and giving and being with family and friends.  Christmas day arrives and the celebrations begin.  Please spare a thought for those who will not be able to sit and enjoy a Christmas dinner with…

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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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