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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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Awareness Weeks, Months & Days in September

Well back to blogging but on my new website. I thought I’d do a post about a few awareness days/weeks/months that are current this month or fall this week. Sepsis Awareness Month  First off, September is Sepsis Awareness Month. I’ve…

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Sepsis Survivors: How My Family Has Been Touched By Sepsis

(c) UK Sepsis TrustSeptember is Sepsis Awareness Month and Wednesday 13th September is this year's World Sepsis Day. My family has been touched by sepsis a number of times. We know too well how serious sepsis is. There’s an estimated…

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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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More Questions, More Tests But Hopeful For Answers – Health Update 10-11-16

Today I had a very successful hospital appointment at the National Hospital for Neurology and Neurosurgery with the neuromuscular team, seeing Dr Ros Quinlivan. The outcomes of the appointment could be crucial for myself and my family, and turn everything…

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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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