Tuesday was Bipolar Awareness Day and marked the start of a new James Lind Alliance priority setting partnership (PSP) that we are co-funding and for which we are providing co-ordination support from our JLA “hub”.
I’m really pleased that we are involved in this work, as it will enable those with direct experience of this severe and distressing mental illness to set the research agenda. Mental illness of many sorts remains desperately misunderstood, impacting on the lives of those affected and those who love and care for them. The “one in 4” statistic (that about a quarter of us experience some kind of mental health problem every year) is stark reminder – if we need it – that this is not just someone else’s problem.
The idea for this PSP was generated by Tom Hughes, a psychiatrist at Leeds and York Partnership NHS Foundation Trust, which is co-funding the work. Oxford has a keen interest and long track-record in bipolar research, and both Mary-Jane Attenburrow, a psychiatrist, and Jennifer Rendell, a research fellow, have joined me on the PSP steering group.
Bipolar – sometimes known as manic depression – is characterised by significant mood swings including manic highs and depressive lows. Most people with bipolar experience alternating episodes of mania and depression and it affects men and women of any age and from all social and ethnic backgrounds. More than a million people in the UK have bipolar, yet on average it takes 10.5 years to receive the correct diagnosis, before which most people will have been misdiagnosed on average 3.5 times.
This PSP is a great example of collaboration across universities, hospitals, charities and patients, and we were delighted when the major new mental health charity MQ: Transforming Mental Health also offered to co-fund. As Cynthia Joyce, MQs Chief Executive Officer who sits on the steering group says, “This exciting project gives a voice to patients, their families and healthcare professionals when it comes to research. We want future research to be informed by people directly affected by bipolar. It complements our recent survey on depression and will give us real insight into the issues that matter most to patients and their families.”
In an extraordinary example of patient power, by lunchtime on Tuesday, just a few hours after the survey launched, 827 people, most of them patients with bipolar, had proposed their research questions via the survey. By the end of the day, this number had risen to well over 1,000. I’m not sure people of my age should ever use the word “awesome” – but it truly was.