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Dying Matters Week 2019 – Are We Ready? Our Short Films

This week it has been Dying Matters Week 2019; 13th-19th May. The theme this year was “Are We Ready?” and what a great theme it is, as we really aren’t ready and we need to be. Dying Matters Awareness Week…

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#OpenUpHospiceCare 2019

This week it’s #OpenUpHospiceCare week, run by Hospice UK. A successful campaign that seeks to break down myths surrounding hospice care, raise awareness of the amazing work of hospices and to secure support for hospices and encourage communities to get…

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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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2018 – What A Year! & Looking Ahead to 2019

What a year 2018 has been. Such highs, such lows, but overall, it’s been an incredible year. I have had such fun, achieved a lot, received recognition for my work, been involved with even more work and projects, I’ve given…

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Caldicott Principles & Information Sharing At End Of Life – Blog Adaptation Of My Speech

Introduction: This blog is an adaptation of a speech I gave at a Healthcare Conferences UK (HC UK) conference on information sharing for patients and families, and across services at end of life, delivered at the “Caldicott End Of Life…

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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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