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…
This blog is an adaptation of a speech I recently gave at King George Hospital, Ilford, at the Barking, Havering and Redbridge University Hospitals NHS Trust day on palliative and end of life care. It was well received and I…
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’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…
On Tuesday 4th April, my hospice nurse Nicky and I sat down and talked the nitty gritty. We talked about how I am, what I've been up to, what's troubling me - the same as always. Then the conversation got…
Bev (left), Mum Kate and I22nd November 2014 - I attended The J's Hospice Charity Ball in the role of guest speaker and had a wonderful night. I spoke about my care from The J's and how they have helped…
Today, Friday 19th September 2014, is Jeans for Genes day. Jeans for Genes is an annual fundraiser for Genetic Disorders UK to change the world for those living with genetic disorders. People pay to wear jeans at school or work…
Saturday 30th August 2014To my beautiful mum, Thank you so much for all you do. You keep me alive each day physically and mentally, giving up your life to save mine. You gave me life in the beginning, and continue to…