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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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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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Happy 70th Birthday, NHS – Thank You For Keeping Me Alive

Happy 70 Birthday, NHS.Today we celebrate the NHS and all its successes and glory. An institution not only providing free healthcare for all, regardless of need or ability to pay, but one that is a national treasure. The NHS may…

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#ExpOfCare Week; A Patient Perspective on Professionals’ Attitude, Behaviour, Approach & Compassion & its Effect on Experience Of Care

#Hellomynameis Lucy Watts MBE. I’m a 24 year old young adult with a progressive, life-limiting condition that has caused very complex medical needs. This means I spend a lot of time in the company of healthcare professionals and far too…

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Hope For A Diagnosis: My NMCCC Admission March 2018 for a Muscle Biopsy

This week I was admitted to the Neuromuscular Complex Care Centre (NMCCC) at the National Hospital for Neurology and Neurosurgery, Queen Square (NHNN). This admission was for my muscle biopsy, long awaited - I’ve been waiting since 2016, and we…

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Another Year Over, A New One (almost) Begun – Reflecting on 2017

2017 has been an incredible year, I feel truly privileged for all the opportunities I’ve received, all the new roles and projects, all the experiences, places I’ve been, things I’ve done, people I’ve met. This year Molly and I started…

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