When you have to hide doing public involvement you know there is something wrong

Ahead of the ‘INVOLVE at 21’ Conference last month I emailed a few patients and carers who’d worked with me over the years to ask them how much time they spent on public involvement every week. My idea – which is not original (I cribbed it from Canada) and stupendously naive as you will see… Read More When you have to hide doing public involvement you know there is something wrong

New mental health research framework announced: has Christmas come early?#NIHRmentalhealth

One of the unintended consequences of writing a blog is that it can be a helpful chronicle enabling you to trace the history of issues and events over many years. There is no better example than mental health research. So I can tell you that it is three years since the Mental Health Research Alliance… Read More New mental health research framework announced: has Christmas come early?#NIHRmentalhealth

Text of the ‘INVOLVE’ poem as read by me at #INVOLVEat21 yesterday – a thank you and a tribute to our community inc. absent friends

Here’s the self-penned poem (originally written in 2014) I read yesterday as part of my closing speech at ‘INVOLVE at 21’ and final one as Chair of INVOLVE. I read it as a thank you to everyone who is part of our community – patients, researchers, carers, health profs – and as a tribute to… Read More Text of the ‘INVOLVE’ poem as read by me at #INVOLVEat21 yesterday – a thank you and a tribute to our community inc. absent friends

Everyone has an ‘academic’ paper in them so get writing! Call to action. #publicinvolvement @BioMedCentral

‘Research Involvement and Engagement’ – the first academic journal in the world dedicated to public involvement and engagement in research – just marked its second birthday. HAPPI BIRTHDAY! (I hope you saw what I did there). Under the auspices of the publishing house, BioMed Central, ‘Research Involvement and Engagement’ has proved quite a success story.… Read More Everyone has an ‘academic’ paper in them so get writing! Call to action. #publicinvolvement @BioMedCentral

New NIHR Report highlights importance to health research of carer experience #carersinresearch @OfficialNIHR @CarersUK 

Since my Mum became a full-time carer to my Dad, our family has become more attuned to the plight of carers.  Not least the degree to which their needs go unmet in our increasingly overstretched health and social system.  The ‘blind eye’ has extends to research to a degree. After all, we talk about research… Read More New NIHR Report highlights importance to health research of carer experience #carersinresearch @OfficialNIHR @CarersUK 

Comment: We can all learn from the Hillsborough tragedy including medical research. #unaccountablepower

Last week the Right Reverend James Jones KBE published his report ‘The patronising disposition of unaccountable power: A report to ensure the pain and suffering of the Hillsborough families is not repeated.’  It was commissioned by the Prime Minister, Theresa May, when she was Home Secretary so that the perspectives of the Hillsborough families would… Read More Comment: We can all learn from the Hillsborough tragedy including medical research. #unaccountablepower

‘A blind man led me to my destination’ and others stories in public involvement by medical research charities @CR_UK @AutisticaUK @AMRC #OnTheFrontFoot

I have met many people along the way this past week who have told me their story. Like the old man who waited with me at the bus stop near my home. He wore tracksuit bottoms and a crumpled open-neck short beneath a thin raincoat. I noticed he had no socks on and that the… Read More ‘A blind man led me to my destination’ and others stories in public involvement by medical research charities @CR_UK @AutisticaUK @AMRC #OnTheFrontFoot