#Hellomynameis Lucy Watts MBE. I’m a 24 year old young adult with a progressive, life-limiting condition that has caused very complex medical needs. This means I spend a lot of time in the company of healthcare professionals and far too…
We awoke today to the news that one of our greatest minds, Professor Stephen Hawking, has passed away age 76. Stephen was an incredible person, he had intelligence that knew no bounds, determination and inner strength that would rival any…
This week I was admitted to the Neuromuscular Complex Care Centre (NMCCC) at the National Hospital for Neurology and Neurosurgery, Queen Square (NHNN). This admission was for my muscle biopsy, long awaited - I’ve been waiting since 2016, and we…
Last week, it was the World Health Organisation (WHO) Executive Board. The WHO is an international organisation who direct and coordinate international health within the United Nations’ system. The Worldwide Hospice Palliative Care Alliance (WHPCA) and International Association for Hospice…
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…
I’m a 24 year old young lady with a life-limiting condition that has caused complex physical and medical needs. I am completely dependent on a specialist electric wheelchair, although forced to spend a lot of time in bed, I require…
Many of you will know, in November 2016 it was confirmed that I have some form of neuromuscular disease by the fantastic team at the National Hospital for Neurology and Neurosurgery (NHNN) and would be embarking on a long process…
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…
According to Rare Disease UK, rare diseases affect 1 in 17 of us at some point in our lifetime, which translates to 7% of the population being affected by a rare disease during their life. This equates to 3.5 million…
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…