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hospice

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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Finding Rainbows

Fifty-five thousand. 55,000! That’s how many views this blog has amassed at the time of writing this post. 55,000 people over the past 22 months have read my blog, or at least one of my posts. That’s 55,000 people educated…

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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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Personal Health Budgets

6th September 2014I recently transitioned over to a Personal Health Budget from Social Services Direct Payments and we are still sorting out the funds and what I need as my needs are increasing greatly year on year. Direct Payments worked…

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Dr Daniel Poulter MP, Did You Hear Me?

Dr Daniel Poulter MP, did you hear me? You probably won’t remember me; I gave a speech at an event organised by Together for Short Lives in Parliament in November 2013 which you attended. You had your picture taken with…

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Parliament speech for Together for Short Lives

Yesterday I went to the Houses of Parliament for the Together for Short Lives reception to encourage MPs to adopt the eight priorities they have set out for the next government. I was a guest speaker, giving a speech about living…

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