Sunday 12 July 2009

Conclusion of Informal Correspondence

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I received no replies to my last two emails, however, I did receive two read receipts for each so presume that Mr Gregor and M-s Smith both read them, the receipts can be published if anyone wants to see them; as I did not receive any guidance from the MHRA with regard redactions the emails have been published in tact other than redaction of my details.

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I will answer the hovering question - “why redact my details?”

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Quite simply I don’t see the need for them to be there, if a question or issue is raised that is pertinent and of concern to the wellbeing of the whole population – who asks that question or raises that issue is immaterial - as long as they're asked and raised.

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Also - I have no vested interest for personal or financial gain in collecting or disclosing facts and information.

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I did not become involved with the prescription drug boards or any other issue for self promotion – something another person involved just can’t seem to get their head round.

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Although from what has transpired since I published my first Blog “Tuesday1st UK: SSRI / SNRI Antidepressant Statistical Politics” and my name was brought into the MHRA PPES arena - his 'need' to know personal details is blatantly nothing to do with the subjects raised.

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Now the informal correspondence between Mr Gregor and myself have been published,

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( which has hopefully cleared - referring to the subject matter thus far - the unsavoury dross and detritus of Mr Fiddaman’s actions )

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once Mr Gregor is back in office I intend, on a more formal footing, to raise with him the areas and issues of concern referred to in my opening post and acceptance; these will cross link to dialogue already instigated with pharmacovigilance and FoI questions I have asked.

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NB – Before someone passes comment. I know there is an error in my last email which should have read Correspondence not ‘Conversations’, there are others too throughout the correspondence, but that’s dyslexia for you!

Sent: Wednesday, July 08, 2009 2:01 PM - Subject: Re: Patient and Public Engagement

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Sent: Wednesday, July 01, 2009 11:40 AM - Subject: Re: Response to Freedom Of Information request ref 09/180

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From: Gregor, Simon - Sent: Wednesday, June 10, 2009 12:11 PM - Subject: Response to Freedom Of Information request ref 09/180

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http://www.mhra.gov.uk/home/groups/es-foi/documents/foidisclosure/con049185.pdf

From: Gregor, Simon - Sent: Friday, June 05, 2009 11:27 AM - Subject: Out of Office AutoReply: Patient and Public Engagement

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As it was by then Friday, after receipt of the out of office notice and being concerned about publishing the informal emails without Mr Gregor knowing; I called Mr Gregors colleague and spoke with her about the situation, she read the email I directed her to, sent me a read receipt, marked the email urgent to ensure Mr Gregor would notice it.

He called a little later that day and we discussed the situation; as our contact at this point was on an informal basis this call will not be transcript or published.


During the conversation it was mutually understood that our correspondence thus far was informal, that I was reluctant to publish - but felt I had been left no choice. Mr Gregor seemed to appreciate my making contact to inform him of my intention to publish, rather than him just coming across the Blog or having it brought to his attention by a third party.


Our conversation ended on the gist that although the correspondence thus far was informal the decision whether to publish was left to my discretion as to whether I felt it necessary. Because of my reluctance about publishing I decided to stalled to see if the internet situation resolved – which it didn’t - if anything it escalated.

Saturday 11 July 2009

Sent - Date: Friday, June 5, 2009 11:27 AM - Subject: Re: Patient and Public Engagement


Attachment



Dear Mr Gregor


As Mr Bob Fiddaman has seen fit to escalate his targeting of me, and done exactly what I predicted and informed you he would do in my email of May 22nd 09–


Again, I stress, I am not asking you to comment - but I do need to question your discernment in discussing matters with Mr Fiddaman and by doing so giving him license to put others (including myself) in a compromised situation that he can - and will use for further self promotion and / or castigation - depending whether those put forward choose to work with you - or not.”


by posting the following


http://tuesday1st.wordpress.com/2009/06/03/delusional-anti-seroxat-campaigner-rants/

“See minutes of meeting Bob Fiddaman had with MHRA.

Ask yourself why Mardi Bennett refuses to acknowledge that the meeting was about ALL SSRi’s.

Bennett has been offered the chance to meet with the MHRA, in fact, it was Bob Fiddaman who recommended they speak with her. It is not known if she has the balls to face them face to face. I’m sure if she ever does she will repeatedly harp on about the ’single issue of Seroxat’.

Mardi Bennett continues to rant and rave about Seroxat campaigners, despite evidence that her fixation, Bob Fiddaman, has tried to make changes with ALL SSRi’s.

Is it because the minutes to the MHRA meeting do not fit in with her blinkered views that she still continues in her quest to fit peices of a jigsaw together that aren’t actually there?”

on a blog he has started specifically for the purpose on June 2nd 09

http://tuesday1st.wordpress.com/


after I wrote an explanatory post , June 2nd 09, uksurvivors group due to concerns about another person - “Steve” – who had become involved and had been directed by Mr Fiddaman to read there -


http://groups.yahoo.com/group/uksurvivors/message/44709


“Steve” - obviously uneducated in the arena he had been baited into by Mr Bob Fiddaman, of his deleterious reputation and calculated, devious manipulation was probably expecting --after complying with a request for more information to “put the records straight” -- the posts about the family to be removed - NOT just edited!


Stressing again that I am not asking you to comment, but being aware that you are following the Blogs and therefore Mr Bob Fiddamans activities -,I refer you to the following two Blogs


http://strangfordbryce.blogspot.com/


http://jeremybryce1953.wordpress.com/


which he has claimed ownership of by way of stating he was editing one: -


http://farm4/. static.flickr. com/3601/ 3586075255_ 55b2b82a04_ o.jpg


where he has targeted others family members and myself.


In direct response to a question from another member of the Yahoo groups I posted the following on June 3rd 09

http://groups.yahoo.com/group/uksurvivors/message/44782

when I didn’t receive a response by the following day, June 4th, I copied it to two other boards I knew the questioner posted on, including the one “Steve” had been directed too.


Mr Fiddamans vitriolic attack --including his starting his Tuesday1st blog-- I feel leaves me no option but to publish our correspondence to clarify my position, either on my blog or on a more permanent fixture; Where if taken forward will be a public record befitting discussions related to the MHRA Public and Patient Engagement Strategy (PPES).


I appreciate the privacy aspect of this decision, but trust this will not be met with any objections as all correspondence about the MHRA PPES, can be requested under the Freedom of Information Act, used and quoted -- usually out of context -- by others.


I would also appreciate your letting me know if there is anything you would like redacted from our correspondence before it is published, which I plan to do at the weekend.


Kind Regards


Redacted


From: Gregor, Simon

To: Redacted

Sent: Tuesday, May 29, 2009 12:28 PM

Subject: RE: Patient and Public Engagement

Friday 3 July 2009

Introduction: PPES invitation acceptance, decision and reason to document correspondence with the MHRA

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After a great deal of consideration, written and verbal consultation with the Mr Simon Gregor the Medicines and Healthcare products Regulatory Agency (MHRA) Director of Communications – I am publishing the following correspondence between him and myself.

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The Patient and Public Engagement Strategy (PPES) is - as its title states – an official contrivance to engage Patients and the Public – therefore of Patient and Public interest.

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Without passing any judgement on Simon Gregor or the MHRA, I still don’t really see how the PPES - a public relations (PR) exercise - is going to improve the areas of medicines control and the efficacy and safety of the drugs being licensed.

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However, as Simon Gregor has eloquently stated in his correspondence, he see’s the function of the MHRA communication department as much about listening, as it is about disseminating information;

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in theory this is commendable, but I feel some apprehension insofar as – unless there is a major shift in the industry devised regulatory paradigm the MHRA work under at present –

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and changes in Government legislated regulations which facilitate the MHRA - and therefore the industry it self-regulates, free reign without any official checks and balances, and answerable to no one –

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there will be little improvement in the service and protection it affords patients, in prescription drug safety and efficacy monitoring, and no protection or channel for recourse or recompense when things go wrong - and things do go wrong.

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This is a fact NICE(1), the MHRA, NHS and Government are acutely aware of and freely admit to - as all medicines are registered, licensed and monitored for efficacy and safety on the merit of risk-benefit profile ratios.

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There are several areas where there appear to be opportunities for improvement in the current system, unless these are explored and avenues opened to facilitate change the situation will stagnate and patients will remain in the same vulnerable circumstance.

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As Simon Gregor has offered the opportunity for discourse I have -- after deliberation -- written and accepted his invitation to discuss these issues with him, however, due to my health limitations and time restrictions meeting on a personal basis will not be possible at this time;

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so am doing so on the understanding that current discussions will be carried out through the written medium or by telephone, and all correspondence and transcripts of telephone calls / discussions will be published here for open public record.

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This will raise public awareness to areas of concern within the medicine regulatory system, give a record of the level of commitment to involving Patients and the Public and hopefully show that those areas of concern can and will be improved -– or not as the case may be.

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Publishing this correspondence will also offset others unnecessarily engaging the MHRA FoI (Freedom of Information) department with requests for information, stop erroneous speculation or resulting replies and items being quoted out of context, misinterpreted and otherwise exploited.

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Having discussed with Simon Gregor publishing our informal introductory basis correspondence thus far, I would like to make point that they are only being published to put the records straight with regard the current circumstance;

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whereby the contemptuous, disrespectful activities of Mr Bob Fiddaman of the fiddaman.blogspot continues – along with his stalking and harassment, in an attempt to undermine, intimidate and discredit me - for some warped perverse reason known only to himself.

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Whilst eager to involve Patients and the Public, the MHRA being aware that the situation has arisen in part due to their involvement, appear to have done nothing to assuage the situation, despite that involvement being used as ammunition in the unfounded, vitriolic if fanciful, venomous attacks.

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In taking up this opportunity for discussions with the MHRA I am under no illusions - but feel it would be prudent for other Patients and members of the Public to approach any PPES(2), PPIP(3) with caution and consideration to a lack of concern by and support - if need arises - from the lead organisations.

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Acronyms:

1 The National Institute for Clinical Excellence

2 Patient and Public Engagement Strategy

3 Patient and Public Involvement Program