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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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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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On Turning 25 (Tuesday 2nd October)

On Tuesday 2nd October it was my birthday; a birthday I was not expected to reach. I turned 25; which is at least 2 years longer than I was expected to reach. I’ve lived a quarter of a century! At…

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Receiving my Honorary Degree of Master of the University from the Open University – 21/09/18

On Friday 21st September 2018 I received a prestigious accolade: I was awarded an Honorary Degree of Master of the University from the Open University, for commitment to public services. What an incredible thing to receive, to be recognised in…

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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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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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Accessibility, Complex Needs & Hospitals – A Blog In Honour of Adam Bojelian

I’m a 24 year old young lady with a life-limiting condition that has caused complex physical and medical needs. I am completely dependent on a specialist electric wheelchair, although forced to spend a lot of time in bed, I require…

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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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