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…
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…
Customary to me, this blog reflects on what has been a very mixed year. Incredible highs, the highest of highs, and yet deep, dark, terrible lows. How can a year be so bipolar? So good, yet so bad, all at…
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…
You see me at my worst. You see me stuck in a bed in hospital, in pain, struggling, fighting repeated bouts of sepsis, reliant on more IVs and pumps than I already am at home, covered in bags and tubes…
On Tuesday 28th June 2016 I participated in a TweetChat with NHS PHB and others, discussing PHBs for wheelchairs to replace the inadequate wheelchair voucher system and hopefully improve the postcode lottery that currently exists. It was a wonderful debate…
We need a co-operative NHS, one in which patients and professionals can work together on an equal footing to improve our NHS and in which patients are valued for their expertise on the health service, being experts by experience. Patients'…
My poem about nursing and the loss of the bursary. I'm 22 years old, have a life-shortening form of a condition which is not usually life-shortening, but due to the complications I have, it sadly will be. As a result…
I’m not sure why society is not better equipped to support unpaid carers. Why they are so often undervalued. They save the UK on average £132 billion a year, the cost of running a second NHS, so why do we…
Merry Christmas Everyone!Thanks so much for your support throughout this amazing year. I can't quite believe all that has happened, despite the tragedies we have suffered as a family. It started with me writing the foreword to the Difficult Conversations booklet for Together…