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'…
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…
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.…
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…
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.…
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…
Today, Friday 19th September 2014, is Jeans for Genes day. Jeans for Genes is an annual fundraiser for Genetic Disorders UK to change the world for those living with genetic disorders. People pay to wear jeans at school or work…
6th September 2014I recently transitioned over to a Personal Health Budget from Social Services Direct Payments and we are still sorting out the funds and what I need as my needs are increasing greatly year on year. Direct Payments worked…