Today I had a very successful hospital appointment at the National Hospital for Neurology and Neurosurgery with the neuromuscular team, seeing Dr Ros Quinlivan. The outcomes of the appointment could be crucial for myself and my family, and turn everything…
The #ANurse4TheJs fundraising page is located here: https://mydonate.bt.com/fundraisers/anurse4thejsHere is our campaign video: The J’s Hospice have been supporting me since April 2011, and within the first fortnight my hospice nurse saved my life. Since then they have supported us in a…
Today is World Hospice and Palliative Care Day, celebrating supportive/palliative and hospice care around the world. This year's theme is Living And Dying In Pain: It Doesn't Have To Happen. Palliative care has been a part of my life since April…
Most of you reading this will know my story, my struggles and my successes. I'm not here to recount them to you. However, it's my 23rd birthday today. Big deal, right? I'm only 23. The thing is, it is a…
I am a medically complex patient who spends long periods in hospital, whose care is spread across 7 different London hospitals with about 12 consultants involved in my care, and who relies on and is kept alive by our NHS.…
It’s no secret if you know me that I have a life-limiting/life-threatening form of a condition known as Ehlers-Danlos Syndrome. Sadly, though some people with the condition can lead a normal (or relatively normal) life, for me it has caused…
To my wonderful followers, friends and family, I am writing to you in a desperate situation. I need a new wheelchair but the one I need has a cost of £22,412.39 and we cannot afford this nor will the NHS provide it. So…
It's Dying Matters Awareness Week (18-24th May 2015). This year’s theme is Talk, Plan, Live. This is my way of showing support and encouraging people to make plans for when they die. Knowing you will die earlier than normal, for some…
Children’s Hospice Week, 11-17th May 2015, has almost arrived! Join us in making a difference to the lives of life-limited and life-threatened children and young people and their families in the UK and all over the world. As Ambassador (‘Young…
I know this is slightly different and perhaps not my normal sort of blog post, but this is something that is very important to me. I have recently been appointed Global Youth Ambassador for the ICPCN (International Children’s Palliative Care…