At 11am today I met with Simon Gregor, the Communications Manager at the MHRA.
Simon had contacted me some two weeks previous to invite me to share my thoughts about the fairly recent MHRA Strategy Plan, which can be downloaded HERE.
We spoke at great length [almost two and a half hours] and, it seems, the MHRA are opening their doors to patient/advocate feedback.
The MHRA's vision is set out as:
Identify areas of work where the Agency can build and strengthen co-operative and mutually beneficial relationships with patients and the public.
Encourage and promote patient and public engagement in Agency activities, where appropriate, ensuring that the partnership is meaningful and effective.
Ensure that plans and decisions made within the Agency have been considered and influenced by patients and the public where relevant in their development.
Engage a diverse range of individuals within the Agency's work so that views reflected come from a wide constituency of people.
Ensure that the engagement of patients and public is championed and promoted at a senior level within the Agency.
Engage and consult with Agency staff and other stakeholders in the development of patient and public engagement within the Agency.
We discussed many issues and, dare I say, broke down some barriers. The angle, from what I can gather, is the MHRA have realised that patient and advocate input is vitally important to their business and vitally important to needless patient suffering.
Some may see this as a way of stifling those critics [such as myself] but I guess there has to be a point where 'enemies' sit down at a table and talk.
Simon has plans to speak with other advocates and patients and asked me to offer up names of those whom I thought could prove a valuable asset to MHRA coming to grips with exactly how we feel about them.
There are folk, two in particular that I would have liked to included on the list but they choose to write anonymous blogs, therefore I kept their anonymity, I speak of two good friends and advocates who write Seroxat Secrets and GSK Licence to Kill. If the authors of these sites wish to speak with Simon Gregor, they can contact me at my email address.
I think this is a massive opportunity for those of us who have criticised the MHRA for what we see as failings - Personally, I think Simon Gregor wants these opinions so the MHRA can move forwards rather than be stuck in this almost masonic situation they are currently in. If you read the strategy plan you will note that the previous meetings with campaigners have been beneficial to them. My argument with Simon was whether they were beneficial to the advocates.
As you know, my last meeting with Kent Woods seemed to go well. A meeting with David Healy was promised. 7 months went by and no such meeting had been arranged. It has now. David Healy is due to talk with the MHRA in late June. A new protocol for tapering will be put on the table.
The MHRA acknowledge there is an SSRi problem. These series of discussions with advocates will help them understand exactly how bigger problem they really have.
This IS NOT about Seroxat and to be honest I'm sick to the back teeth of stating this. This is about ALL SSRi's.
To this end I have given Simon names of advocates whom I think have something useful to say. This is their chance to sit down at the table and air their views.
Simon has agreed to meet with these individuals and also added BBC TV's, Shelley Jofre, to the list.
I put forward the following to Simon.
Charles Medawar [Social Audit]
Janice Simmons [Seroxat User Group]
Stuart Jones [Patient Advocate]
Stephany Gatchell [Patient Advocate]
Janne Larsson [Investigative Writer]
Matthew Holford [ It's Quite An Experience Blog]
Last, but not least, I put forward the name of someone who has in the past, and still today, accuses me of having only one issue as my concern [Seroxat] I am referring to Mardi Bennett who uses the nickname Tuesday1st, I wrote about her last week HERE. She bangs the drum on forums and recently created a blog. She is also a good friend of my cyber stalker, Jeremy Bryce. I would have put forward his name but he seems too busy impersonating other people, including me and if he is happy doing that rather than working toward a solution then I shall leave him to it.
I have emailed all those on the list. Simon is prepared to meet with them all, he is just waiting for them to respond either to me or him personally.
So, there you have it.
Banging the drum is making a difference folks. By their own admission, the MHRA are well aware of the power of blogging and now see the importance of involving patients and advocates.
We can sit back and criticize from the comfort of our homes or we can tell them face to face where we think they are going wrong.
I hope all those names I put forward today, grasp this opportunity.
Things are changing folks, at least they are this side of the pond
I'll be meeting with Simon three to four times a year from this point in.
It's a huge leap from 3 years ago when I started writing. It shows that collectively we can all make changes and get our voices heard and personally, I see it as two fingers up to Pharma. They may be able to silence litigants with 'gagging orders' but they will never silence patients/advocates who have issues regarding the way their drugs seriously affect people who take them.
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'THE EVIDENCE, HOWEVER, IS CLEAR...THE SEROXAT SCANDAL' By Bob Fiddaman
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