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Rare Disease Day 2019 – What Rare Means For Me

Today is Rare Disease Day 2019, celebrating people living with, and raising awareness of rare diseases.  There are between 6000 and 8000 rare diseases, with new ones being discovered on a regular basis and equally more and more already known…

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NHS Peer Leadership Academy: Day 6 – The Final Day

And so it is, the final day of the Autumn 2018 cohort of the NHS Peer Leadership Academy. This continues with my series in which you can read previous blogs sharing my PLA journey by clicking the hyperlinked text for…

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2018 Disability Power 100 List: Becoming One Of The Most Influential Disabled People in Britain

This week it was announced that I had been named as one of the 100 most influential disabled people in Britain, on the Shaw Trust Disability Power 100 List.  What is the Disability Power 100 List? The Shaw Trust Power…

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IHUG/ESNEFT User Group Celebration & Workshop; 12/10/18

Fantastic day today at the IHUG (Ipswich Hospital User Group) celebration at Ipswich Hospital today where I was giving a presentation and then supporting their workshop afterwards.   In my speech I talked about my work and achievements, how I…

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Home Artificial Nutrition Week 2016

Most people have heard of feeding tubes, seeing kids with cancer and other illnesses with a NasoGastric Tube taped to their face. People know it’s possible to be fed through a tube in your nose down into your stomach. However,…

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Christmas in Italy Concert in aid of The Wingate Institute – My Speech

I was asked to speak at the Chelsea Chamber Choir's Christmas in Italy concert, the beneficiary being The Wingate Institute, a prestigious, world-renowned research institute dedicated to neurogastroenterology, particularly gut failure. I was asked to speak by my consultant Professor…

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Junior Doctors – Why I Support Them

I am a medically complex patient who spends long periods in hospital, whose care is spread across 7 different London hospitals with about 12 consultants involved in my care, and who relies on and is kept alive by our NHS.…

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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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Chronic Intestinal Pseudo Obstruction and Motility Disorders Explained

Chronic Intestinal Pseudo ObstructionChronic Intestinal Pseudo Obstruction. Quite a mouthful, huh? Believe me, it's a lot harder to live with than it is to say it. Chronic Intestinal Pseudo Obstruction (abbreviated CIPs or CIPO) is a condition of the digestive tract…

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