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I Have A Mitochondrial Disease: Update On The Search For A Diagnosis

Thursday 15th November I had a neuromuscular follow up with my fantastic consultant Dr Ros Quinlivan at the National Hospital for Neurology and Neurosurgery. I've been seeing Dr Quinlivan after I was referred to the National Rare Mitochondrial Disease Service,…

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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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My Thoughts On The Future of Hospices 

Recently two people got in touch with me and asked me a question about my thoughts on the future of hospices and hospice care. I spent about 2-2.5 hours thinking, brainstorming, and writing everything down in an email response. However,…

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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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NHS Peer Leadership Academy: Day 1 of the First Residential

NHS Peer Leadership Academy Day 1 Well, what a day today has been. I write this late as we’ve been on the go all day. I am shattered. But it has been absolutely amazing. Meeting so many incredible people on…

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Rare Disease Day 2017 – Do You Care About Rare?

According to Rare Disease UK, rare diseases affect 1 in 17 of us at some point in our lifetime, which translates to 7% of the population being affected by a rare disease during their life. This equates to 3.5 million…

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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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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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