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.…
Thursday 27th November 2014 ~ Today I went to the children's palliative care conference "Leaders of Care - for equity, effectiveness and efficiency in children’s palliative care" run by Together for Short Lives to give a speech with my hospice nurse on transition.…
19th November 2014 - I gave a speech at the Children's Health and Wellbeing Partnership Takeover Day at the Department of Health. The event was organised to draw together important paediatric and child health professionals with young people and to work together…
The transition period is a difficult time. Young people have enough going on in their lives, so to be poorly and/or disabled just adds another dimension. Then when you factor in the change from children’s to adult’s services, it’s a…
I got an email through from Together for Short Lives yesterday with this letter attached; I'm going to the Department of Health to meet Dr Dan Poulter MP to discuss my care and how things could be improved! He said…
Dr Daniel Poulter MP, did you hear me? You probably won’t remember me; I gave a speech at an event organised by Together for Short Lives in Parliament in November 2013 which you attended. You had your picture taken with…
My name is Lucy, I’m 20 years old and I have a life limiting condition. You probably won’t have heard of it, it’s called Ehlers-Danlos Syndrome (EDS). It’s considered rare, but is becoming more prevalent as awareness and understanding of…