On Friday 10th November 2017 a very special event took place. Hosted by the Queen's Nursing Institute (QNI) with support from the Burdett Trust, the QNI Transition of Care Conference was a great success. It brought together nurses, healthcare professionals…
On Tuesday 7th February 2017, I attended my third event at the House of Commons for Together for Short Lives, with the theme of #forthe49000. The event was hosted by Stuart Andrew MP. A fantastic day was had by us…
To my wonderful friends, family and supporters, I have a very, very exciting announcement to make: I am now Lucy Watts MBE I have been appointed Member of the Most Excellent Order of the British Empire (MBE) in the Queen’s New Year…
I recently wrote a piece for the Courageous Parents Network about living with a life-limiting/life threatening illness, palliative care, end of life planning and quality of life. It's a brief summary of my journey since becoming ill, the support I've had,…
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…
Sunday 14th September 2014 - It’s my 21st birthday on the 2nd October, and I am truly grateful I am here to reach this milestone. Every birthday is a milestone for us, but turning 21 is a huge one. For someone…
It is hard to overcome an illness when it imposes so many limitations and treatments/problems demand such a lot of time throughout the day (and night). Some days it seems impossible. I’ve been ill for six years and eight months…
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…