Disrespectful, Uncaring or just downright liars?
http://fiddaman.blogspot.com/2009/04/mhra-disrespectful-uncaring-or-just.html
I need to get something off my chest. What seemed a possibility has now been shrouded by utter contempt and ignorance. Maybe I'm being 'vexatious', a word often used by the MHRA when a member of the public disputes what answers the MHRA give them. In the past they have labelled Matthew Holford 'vexatious' and more recently, Strattera campaigner, Janne Larson has also been labelled 'vexatious'. Two people with two differing concerns regarding drugs licensed by the MHRA.
The MHRA can label me vexatious if it makes them feel better about their incompetence, because incompetent is what they are. Let me explain to you why.
On the 2nd of September 2008 I travelled, at my own expense, to London to meet with the MHRA. The meeting came about as a result of this blog and in particular the 'pot shots' I was aiming toward MHRA Chairman, Kent Woods. Of course, I was never given the reason why I was granted such a meeting, I just believe that my constant drum banging landed me my opportunity.
Former MHRA Communications Officer, John Watkins, was instrumental is setting up the said meeting and for that I owe him a great debt. I have no gripe with John, he is one of the good guys. He actually listened to patients and empathised with their plight. John has retired from the MHRA now which has left a huge brick wall facing many members of the public. Yes, someone else deals with 'complaints' now but there is no 'one on one' conversations... at least not to my knowledge.
During my meeting with the MHRA I raised the issue of SSRi withdrawal and how difficult it was for patients to taper off their particular SSRi with no guidance. The patient information leaflets [PILs] do not give the patient any advice whatsoever other than to withdraw slowly. How slowly?
I met with Kent Woods, a man I had previously lambasted on this blog. I had no problems looking Kent in the eye and to be honest he appeared to be a good host, he was charming and listened to what I had to say.
When I left the meeting I felt a sense of achievement. I had somehow managed to persuade Mr. Woods to meet with Dr. David Healy to discuss the withdrawal issue further. Dr. Healy and I have corresponded since and even he was surprised that I had got Kent to agree to meet with him.
7 months have passed since Kent Woods said to me that he would be happy to have the MHRA talk with Dr. Healy. David Healy has not been contacted by the MHRA.
Now, I can only assume that Kent Woods has either forgotten what he said or is being disrespectful and uncaring or... he was basically lying to me.
This morning I wrote the MHRA with the following:
It was addressed to Kent Woods and Sarah Morgan whom were both present at the meeting back in September. It was also addressed to MHRA Information and I copied Dr. Healy in.
----
Seroxat Sufferers
http://fiddaman.blogspot.com
----
The MHRA have not replied and that saddens me deeply. It also annoys me because as the months have passed I have felt more and more disrespected by the people that regulate the drugs you and I take.
7 months is ample time to pick up a phone and arrange a meeting with someone. This has not been done. Things take time but I expect a regulator of drugs to act more rapidly on an issue that is causing so many people hardship.
The MHRA know how powerful blogging can be, only yesterday a press release was made regarding a new MHRA strategy for greater public and patient involvement. I believe that many advocates who have wrote to the MHRA have been part of that decision by the MHRA. We are people who want answers, we are people who take the drugs that the MHRA license.
We are people.
Personally, I see this 7 month wall of silence as an act of disrespect toward myself and the countless number of people who are struggling with SSRi withdrawal. I see it as an uncaring MHRA who would rather score points for pharma by closing down small online pharmacies for selling fake erection pills. I see it as the MHRA lying to me to keep me from 'bad mouthing' them on this blog.
Mr. Woods, you picked the wrong man. I take your lack of any response personally. I do not beleive that it could take 7 months to even consider making that phone call to Dr. Healy. Do not fob me off with 'it takes time', it doesn't wash.
You have let me down Mr. Woods. You have let all those down who are struggling to taper off SSRi's.
I have to ask myself whether or not proposals were made to the BNF. The 6 monthly publication was recently published - nothing about SSRi withdrawal.
I have offered to help the MHRA get a better understanding of withdrawal. Your silence and lack of response is a kick in the teeth.
7 months of doing nothing is not safeguarding public health. Whatever you have done 'behind the scenes' is not good enough.
You want the respect of the public and patients?
EARN that respect and carry through with whatever you say. Don't make false promises and don't lie to people!
Rant over.
Fid
http://fiddaman.blogspot.com/2009/04/mhra-disrespectful-uncaring-or-just.html
I need to get something off my chest. What seemed a possibility has now been shrouded by utter contempt and ignorance. Maybe I'm being 'vexatious', a word often used by the MHRA when a member of the public disputes what answers the MHRA give them. In the past they have labelled Matthew Holford 'vexatious' and more recently, Strattera campaigner, Janne Larson has also been labelled 'vexatious'. Two people with two differing concerns regarding drugs licensed by the MHRA.
The MHRA can label me vexatious if it makes them feel better about their incompetence, because incompetent is what they are. Let me explain to you why.
On the 2nd of September 2008 I travelled, at my own expense, to London to meet with the MHRA. The meeting came about as a result of this blog and in particular the 'pot shots' I was aiming toward MHRA Chairman, Kent Woods. Of course, I was never given the reason why I was granted such a meeting, I just believe that my constant drum banging landed me my opportunity.
Former MHRA Communications Officer, John Watkins, was instrumental is setting up the said meeting and for that I owe him a great debt. I have no gripe with John, he is one of the good guys. He actually listened to patients and empathised with their plight. John has retired from the MHRA now which has left a huge brick wall facing many members of the public. Yes, someone else deals with 'complaints' now but there is no 'one on one' conversations... at least not to my knowledge.
During my meeting with the MHRA I raised the issue of SSRi withdrawal and how difficult it was for patients to taper off their particular SSRi with no guidance. The patient information leaflets [PILs] do not give the patient any advice whatsoever other than to withdraw slowly. How slowly?
I met with Kent Woods, a man I had previously lambasted on this blog. I had no problems looking Kent in the eye and to be honest he appeared to be a good host, he was charming and listened to what I had to say.
When I left the meeting I felt a sense of achievement. I had somehow managed to persuade Mr. Woods to meet with Dr. David Healy to discuss the withdrawal issue further. Dr. Healy and I have corresponded since and even he was surprised that I had got Kent to agree to meet with him.
7 months have passed since Kent Woods said to me that he would be happy to have the MHRA talk with Dr. Healy. David Healy has not been contacted by the MHRA.
Now, I can only assume that Kent Woods has either forgotten what he said or is being disrespectful and uncaring or... he was basically lying to me.
This morning I wrote the MHRA with the following:
It was addressed to Kent Woods and Sarah Morgan whom were both present at the meeting back in September. It was also addressed to MHRA Information and I copied Dr. Healy in.
----
Dear Kent, Sarah,
I am a patient man. One has to be when one has experienced a tapering of an SSRi over a period of 21 months.
My patience, however, is being tested to the limit with the MHRA and the proposals that were made at the meeting I had with you both back in September, 7 months ago.
Quite why no meeting has yet been arranged with yourselves and Dr. David Healy suggests to me that you are either, a, disrespectful or b, forgetful.
It takes less than a minute to pick up a phone to arrange a meeting with Dr. Healy, there surely is no red-tape to cut through over this issue is there?
I have been fair over this matter but it appears the proposal to meet with Dr. Healy was nothing more than a token gesture, it certainly appears that way to me as I'm sure it would to you both if you were in my position.
If GlaxoSmithKline or any other pharmaceutical company are not happy with you meeting someone who genuinely wants to help people taper of their drugs then please be forthright with me and have the decency to let me know.
7 months is more than ample time to arrange a meeting. I am certain if I pointed you toward an online pharmacy selling fake drugs you would move the earth to get a result.
People tapering from SSRi type drugs need help and 7 months of silence only goes to show just how much the MHRA seem to be bothered about this matter.
I would like an answer by the end of the working day. This is not rocket science and does not need lawyers.
I am very disappointed.
Regards
Bob Fiddaman
Seroxat Sufferers
http://fiddaman.blogspot.com
----
The MHRA have not replied and that saddens me deeply. It also annoys me because as the months have passed I have felt more and more disrespected by the people that regulate the drugs you and I take.
7 months is ample time to pick up a phone and arrange a meeting with someone. This has not been done. Things take time but I expect a regulator of drugs to act more rapidly on an issue that is causing so many people hardship.
The MHRA know how powerful blogging can be, only yesterday a press release was made regarding a new MHRA strategy for greater public and patient involvement. I believe that many advocates who have wrote to the MHRA have been part of that decision by the MHRA. We are people who want answers, we are people who take the drugs that the MHRA license.
We are people.
Personally, I see this 7 month wall of silence as an act of disrespect toward myself and the countless number of people who are struggling with SSRi withdrawal. I see it as an uncaring MHRA who would rather score points for pharma by closing down small online pharmacies for selling fake erection pills. I see it as the MHRA lying to me to keep me from 'bad mouthing' them on this blog.
Mr. Woods, you picked the wrong man. I take your lack of any response personally. I do not beleive that it could take 7 months to even consider making that phone call to Dr. Healy. Do not fob me off with 'it takes time', it doesn't wash.
You have let me down Mr. Woods. You have let all those down who are struggling to taper off SSRi's.
I have to ask myself whether or not proposals were made to the BNF. The 6 monthly publication was recently published - nothing about SSRi withdrawal.
I have offered to help the MHRA get a better understanding of withdrawal. Your silence and lack of response is a kick in the teeth.
7 months of doing nothing is not safeguarding public health. Whatever you have done 'behind the scenes' is not good enough.
You want the respect of the public and patients?
EARN that respect and carry through with whatever you say. Don't make false promises and don't lie to people!
Rant over.
Fid
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