Founding member of the Research Network Shirley Nurock shares her experience representing Alzheimer's Society on the Medicines and Healthcare Products Regulatory Agency (MHRA) Public Consultative Forum.
Last year, like many of those affected by dementia, I was desperate to know when a Covid-19 vaccine would be available. Unlike most, I had a professional as well as personal stake in this question, because I represent Alzheimer’s Society on the Medicines and Healthcare products Regulatory Agency (MHRA) Public Consultative Forum.
The MHRA oversees the regulation of medicines in the UK. Until two years ago, very few members of the public had heard of them, but thanks to coronavirus, their profile has jumped.
Representing Alzheimer's Society
Pre-Covid, I attended frequent in-person meetings to discuss issues like medicine packaging and reported side effects of drugs.
My role is to consider those affected by dementia, so my experiences at Alzheimer’s Society and as a former carer have been very helpful.
For example, the MHRA was recently criticized for poor public and patient engagement, so I took part in a focus group on how to do it better!
The Alzheimer’s Society Research Network is a trailblazer in this field, so I outlined how we involve people affected by dementia at all stages of the research process, and the importance of recognising that different people have lay expertise in different areas.
Until last year, MHRA meetings were dominated by the possible impact of Brexit on regulation of new drugs and medical supplies, many of which are manufactured in the EU. Unsurprisingly, such concerns have recently been subsumed by coronavirus.
Board meetings are all online now.
Concentrating for two and a half hours with 25 faces onscreen isn’t easy, but it’s good to be able to question the CEO, the Board, and relevant experts on prioritising treatments.
It’s something of a miracle that treatments and vaccines for Covid have received approval so quickly, accelerating a process that usually takes years. However, there is a cost, as approvals for likely new treatments for other conditions have been delayed.
Despite the problems we’ve faced in the last few years, it’s good to know patients have a say on ethical questions about medicines.
You don’t have to be a representative on the Board to do this. The MHRA encourage all members of the public to use the Yellow Card Scheme to report adverse side effects of any medicine, vaccine, or medical device.
They find it particularly useful to hear from people with conditions like dementia, because this helps them assess whether some groups experience more side effects than others.
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