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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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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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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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NHS Peer Leadership Academy: Day 5 (final residential)

Continuing in my series about the NHS Peer Leadership Academy, where you can read the blog about Day 1, the blog about Day 2, the blog about Day 3, the blog about Day 4 by clicking those links, in this…

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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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Personalised Care & Palliative Care: How Can They Help Each Other?

I’ve been writing this blog for a few weeks now but got interrupted by my admission to hospital with sepsis last Sunday. Then yesterday I saw a blog by Tracey Bleakley, CEO of Hospice UK, talking about the very subject…

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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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NHS Peer Leadership Academy: Day 4 (second residential)

So, continuing my series about the NHS Peer Leadership Academy, here’s an update on Day 4 (aka day 2 of the second two-day residential, the first residential being in September, the final residential being in November). I am now home…

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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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