Can you help us raise £130,000 to build #AHomeForLucy, a fully equipped and custom built extension to the property that fully meets my health, clinical/medical, care, practical and access needs, and enables me to remain living in my home? An…
This blog is part writing therapy, part rant, part activism, part distress, part processing, part making peace. It flicks seamlessly between all of the above, so you never know quite what ‘part’ you’re in when you read it, heck sometimes…
Today it’s International Wheelchair Day and it celebrates the life-enhancing and life-changing benefits of having the right wheelchair, and celebrating the individuals who rely upon this piece of equipment to mobilise and live their lives to the fullest. I’ve…
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…
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…
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…
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…
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…
This week it’s Hospice Care Week. All of you know I am a palliative and hospice care advocate having been a beneficiary of such services since I was 17. You all know my story, being born with health problems and…
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…