Patient charter on genome sequencing is a call to arms to the NHS, charities and researchers

It is one of the boldest and most exciting initiatives in UK health research and care that I have witnessed.  It's also happening at lightning speed. In the eighteen months since the Prime Minister announced the 100,000 Genomes Project to coincide with the NHS's 65th birthday in 2013, we have gone from almost a standing start … Continue reading Patient charter on genome sequencing is a call to arms to the NHS, charities and researchers

A bit of a public involvement mash-up including that idea for an NHS Civil Society Assembly

So here's my unsubstantiated personal theory. It is that one of the root causes of the problems besetting today's NHS' is our failure to pay proper heed to the growing crisis in accountability and responsibility that has been a feature of our increasingly complex health system over the last seventy years.  From almost the day … Continue reading A bit of a public involvement mash-up including that idea for an NHS Civil Society Assembly

Rare Disease UK Consultation Days on Govt’s Rare Diseases Strategy

Just had an email from Rare Disease UK (RDUK) saying they are setting-up four consultation days for patient groups to discuss the rare diseases consultation paper put out by the four health departments across the UK a few weeks ago.  Here are the dates: Wales - Cardiff – 1st May – location TBC /England - … Continue reading Rare Disease UK Consultation Days on Govt’s Rare Diseases Strategy