020 3770 5336
I look forward to seeing you there - and meeting some of you for the first time
Meanwhile, you might be amused to read this from Optical Express in response to the RSSWG draft guidance!
'Optical Express has had concerns about the formation and process of the Royal College of Ophthalmology’s (RCO) Refractive Surgery Standards Working Group (RSSWG) from the outset. These concerns have been raised with the Officers and Working Group Chair of the RCO by senior Optical Express executives. Unfortunately, the draft guidance on refractive surgery suggests that RSSWG has not heeded these concerns, and we remain very worried that the guidance, the evidence in support and the current consultation is inadequate. We sincerely hope that RSSWG and the RCO will consider this response in detail and address the flaws we have identified in the draft guidance before finalising any new guidance on refractive surgery,
As background, Optical Express undertakes over six (6) in every ten (10) refractive surgery procedures performed in the UK. [scary] Optical Express has a bespoke Electronic Medical Records (EMR) and Patient Reported Outcomes (PRO) system at all clinics. Together with clinical diligence and oversight, the EMR provides a wealth of clinical and patient reported outcomes on hundreds of thousands of procedures. Decisions endorsed by the Medical Advisory Board of Optical Express are supported by analysis of this data. Optical Express has offered access to this data to the RCO Working Party for the development of these guidelines. However, this offer was not taken up by the RCO.
The proposed RCOphth standards leave me feeling enraged. The Working Goup must be completely clueless or corrupt, or both, because they are still churning out bullsh•t, about numbers of patients with complications and the severity of their problems. I am angry, because I have suffered for 9 years now, and have met many other victims who broke down as they explained what had been done to them, even years after the event. Many of our complications cannot be fixed, and it is as though the RCOphth refuses to accept that this is really happening to people.
In my opinion the new standards are based on lies, and will DO LITTLE OR NOTHING TO STOP THE UNETHICAL TREATMENT OF PATIENTS, THE LIES, BULLYING AND CORRUPTION WITHIN THIS INDUSTRY.
(i) Side effect: a secondary, typically undesirable effect of a drug or medical treatment.
(ii) Self limiting: ultimately resolving itself without treatment.
(iii) Vast majority: 90% or more.
I am one of many thousands of people who suffer with multiple ‘side effects’ after refractive eye surgery, including glare/starbursts, DES, photophobia, MGD, coma, poor night time vision, haloes… and these so called side effects are sadly not ’self-limiting' - they are for life!
Some of these side effects are caused by ‘higher order aberrations’ (HOAs), and entirely a result of laser eye surgery in my case.
It dawned on me that I’d never heard of HOAs pre surgery, so I had a quick look at OE and Optimax Consent forms, and could find no mention of HOAs under side effects. (do correct me if I missed it!)
Until we collect unbiased data, the use of exaggerated and unsubstantiated claims, like ‘the vast majority’ and ‘over 95%’ satisfied, should be avoided by the RCOphth/RSSWG.
My Beautiful Eyes campaigners will strongly contest the inclusion of these claims in the RCOphth standards, which are not just deceptive, but in my opinion downright dishonest!
'As electronic patient record systems become more widespread in refractive surgery, the opportunities to collect outcome data as a by-product of routine clinical care are increasing. We would like to gauge support for developing a national data set in refractive surgery with the future aim of informing [sic] a national database to include refractive surgery.'
Now why didn't I think of that
Of course the main hurdle with this (very obvious) method of collating post op statistics is how to ensure data is accurate and honest; who should be responsible for collecting it, and over what time period.
'Patients who have poor outcomes in refractive surgery may lose confidence in their original provider. They are then left with an open ended financial liability in relation to revision treatment. One of the key recommendations of the Keogh Report is that we should develop an improved system of redress. We would like to have an open discussion to field ideas for possible improvement in this difficult area'
(I'd love to be at the industry meeting on 19 October to hear what OE et al have to say about redress!)
This is a meeting I recommend as many of you as possible should try and attend!
After reading the RCOphth Refractive Surgery Guidelines Consultation draft I’ve spent most of the weekend angry!
Because anyone who believes that the purpose of the new guidelines is to benefit patients should think again! It is fundamentally about hobbling OE (and other high street providers) to profit small independent providers.
And on this rare occasion I am in full agreement with some of the points in OE's response to the draft!
• 'The Working Party’s membership, terms of reference, scope and unrepresentativeness have all indicated a distinct bias towards the interests of low volume independent providers.’ (P2)
• 'The lack of balance and clear objectivity on the Working Group is reflected in these documents.’ (P2)
I absolutely agree with the above, as I do with more of OE’s criticisms, but for entirely different reasons to theirs!
• 'The draft guidelines are supported by very little evidence throughout.’ (P4)
Agree - especially concerning the 95% success rate claimed by both the RSSWG and OE! (To be discussed in more detail later)
• 'The Lay Representative to the RSSWG cannot possibly represent the interests of patients who are either considering refractive surgery or have undergone the procedure. She has not had a refractive procedure and stated at the Industry Day on 11th May that she would never consider having refractive surgery..’ (P2)
When I discovered that Rea Mattocks had replaced me as lay rep, on 29 September 2015 I emailed Kathy Evans, 'Please advise whether the other LAG members were consulted or informed of Rea’s appointment to the WG. If so when, and why was I not? I would appreciate an answer to what I believe is a fair question.’
Kathy replied, 'The chair [Tom Brembridge] took chairman’s action and asked a suitable member of the Lay Advisory Group to undertake the task.'
Suitable how? Rea Mattocks has - as both David Moulsdale and I agree - no knowledge of (and never shown interest in) the refractive eye surgery industry whatsoever.
Interestingly, in response to an email from Rea on 24 January 2016, Tom Bremridge replied, 'I have read through the draft pamphlet on sight loss and registration. I am a bit hesitant about commenting on it as I am not visually impaired and am therefore poorly qualified to comment on a document which was drafted by visually impaired people.’
I trust Tom’s response highlights the College's hypocrisy in appointing Rea to the WG and needs no further explanation!
Although I agree with some of OE’s points, I vehemently disagree with most others!
• 'Anecdote, isolated cases or sensational media coverage should not cloud the perspective of the RSSWG against the views of the tens of thousands of patients who elect to undergo community refractive surgery in the UK each year and who report very high satisfaction rates.’ (P4)
Disagree, not least because the media coverage is far from sensational, all factual - with worse horror stories yet to be told!
A few weeks ago I was chatting with someone in the industry who told me that I misunderstood the RCO Council members, that they're not corrupt, but scared of David Moulsdale in case he sues the College!
David Moulsdale made sure that the only lay person with full knowledge of this industry was removed from the WG, but is now complaining that the neophyte who replaced me can’t possibly represent patients for the opposite reason!
Regular OERML readers may remember that in July 2015 I told Kathy Evans that the College had made a big mistake in removing me from the RSSWG, that they had allowed David to play them.
In December 2015, Shadow Chancellor John McDonnell also warned the College that they were giving away too much to the industry.
So what’s next? Will David Moulsdale perhaps advise OE surgeons to ignore the RCOphth entirely, or will they water down their guidelines to keep him happy?
OE’s response ends with this, 'We sincerely hope that RSSWG and the RCO will consider this response in detail and address the flaws we have identified in the draft guidance before finalising any new guidance on refractive surgery.’
The major flaw for me is the lack of input from patients, surely the very people the RSSWG should have been listening to!
I’ll be writing more on this subject in due course... I will also be submitting my response to the RCO - though I think they already have the gist of it!
They removed me from my position as nominated lay representative on the RSSWG simply to appease David Moulsdale, so I am now smiling like the Cheshire cat that I am!
Excerpt from OE's 20 page response to the Refractive Surgery Guidelines Consultation draft...
"The Lay Representative to the RSSWG [Rea Mattocks] cannot possibly represent the interests of patients who are either considering refractive surgery or have undergone the procedure. She has not had a refractive procedure and stated at the Industry Day on 11th May that she would never consider having refractive surgery. This does not suggest open mindedness and is another example of a serious flaw in the makeup of the RSSWG."
High five David - possibly the first time I agree with OE
"Dear Ms Rodoy, Thank you for your previous interest in the work of The Royal College of Ophthalmologist’s Refractive Surgery Standards Working Party." (RSSWG)
Given the following facts, I don’t know if I should be amused or insulted by the above sentence in the RCOphth email I received today!
• May 2015, I was invited to join the RCO Lay Advisory Group and was immediately nominated as lay rep to the RSSWG - the only reason I’d applied to join the LAG.
• June 2015, after spurious complaints from David Moulsdale (CEO Optical Express) I was removed without right of reply. My subsequent SARs exposed shocking collision between Moulsdale & RCO members.
• October 2015, the RCO appointed LAG member Rea Mattocks in my place… with zero knowledge about this industry and zero interest in it she was therefore a perfect candidate - for all bar the patients!
• December 2015, Shadow Chancellor John McDonnell and Chief of Staff Seb Corbyn accompanied me to a meeting at the College with some of the Trustees (hand picked by the RCO) to fight for my reinstatement to the RSSWG. The Vice President (Peter Tiffin) told John that they had to keep OE on board else they wouldn’t agree to the new Standards. John was astonished that the College were pandering to OE, and said as much!
• The RSSWG 'Public Engagement Session’ on 18 May 2016 was kept quiet - there would have been no 'public' present had an anonymous RCO insider not sent me details the night before the cut off date for applications.
• 18 May 2016, details of the RSSWG 'Public Engagement Session’ were kept quiet, and there would have been no 'public' present had an anonymous RCO insider not informed me about it the night before the cut off date for applications.
The seven members of public who did attend at short notice only did so thanks to my intervention (the RCO claim eight).
For a number of reasons I believe that RCOphth Chief Executive Kathy Evans is silently supportive of me.
Kathy was one of the (three person) panel who appointed me to the RCOphth Lay Advisory Group in May 2015, who immediately nominated me as lay representative on the RSSWG.
Kathy’s only part thereafter was to take instructions from the surgeons who actually hold the power and do their bidding...
As she did on 29 June, when she wrote, 'We have given a lot of thought to the composition of the Refractive Surgery Standards Working Group, since we attach great importance to its work. As you know, the RCOphth is not a regulatory body but it can contribute to better standards of care to benefit patients through the work of such groups.
We invited you to join the group, aware of your campaign to improve the standards of the sector. We have since received unsolicited information that you received a police warning about your approaches to one individual in the sector and that you have sent an email declaring that you “despise this industry” and state, in offensive language, that you will destroy it. We have taken legal advice on the matter and have come reluctantly to the conclusion that, despite your passion and knowledge, the evidence points to the fact that you would not be a constructive member of the group.
We therefore feel we must withdraw your invitation to join the Refractive Surgery Standards Working Group. We would welcome you as a member of the Lay Advisory Group on the grounds that, whatever your views about Laser Refractive Surgery, you would be able to contribute to the wider work of the Lay Advisory Group, as you indicated at your interview. It next meets on Thursday 13th July, please let me know if you will be able to attend.'
This was without the right of reply, after surgeon Council members/Trustees (incl Bernie Chang) accepted a spurious complaint from David Moulsdale.
Excerpts from The Royal College of Ophthalmologists Report and Financial Statements 31 December 2015:
• One employee earned between £90,000 and £100,000 in the year [Kathy Evans]
• Subscriptions [from surgeon members]: 1,230,000
• Total funds: 12,319,000
• The College is exempt from corporation tax as all its income is charitable and is applied for charitable purposes. Charity number: 299872
It doesn't take a genius to appreciate that the RCOphth is more concerned with its income than the well being of patients!
NB: Unlike the RCOphth, I offer the right of reply to all those I mention and criticise on my sites…
Read 21 July post to understand the following...
On 14 Jun 2016, at 17:31, Sasha Rodoy wrote:
If the greater part of the group’s work is completed then why was I invited to, 'submit my request with new evidence to support' my position to be in the group?
Last year I was removed from the RSSWG without right of reply, allegedly due to ‘unsolicited information’ provided by David Moulsdale - somewhat disconcerting given that even murderers are allowed to present a defence before sentencing!
However, I subsequently provided the trustees with enough evidence to prove, not only that Moulsdale's accusations were without substance, but the reasons why he was desperate to have me excluded from the group.
I would therefore appreciate being told the reason(s) my recent request was turned down, and also the names of trustees/Council members present.
Sadly, there remains no representation of patients/public on the group, with Rea Mattocks' position a complete farce.
With that in mind, I doubt that my comments, or anyone else's, will make any difference to the content of the documents.
Meanwhile, I would like to point out to the trustees that the majority (if not all) of comments sent on the previous documents were entirely a result of my urging people to do so.
Similarly, there would have been zero attendees at the meeting on 18 May had someone not (anonymously) sent me details.
I doubt that I will waste my time sending comments on the two further documents because the College have proven that they have no intention of taking into consideration my expertise knowledge.
I look forward to your earliest response.
On 5 Jul 2016, at 16:55, Sasha Rodoy wrote:
I am disappointed that you have chosen not to reply to my email of 14 June. Please understand that your decision leaves me with no option but to ask you to supply all information about me that I am entitled to under the Data Protection Act 1998.
• all RCO emails/correspondence/documents where my name is mentioned
• the minutes of the trustees' meeting on 10 June 2016
Please note; while I understand that you have the right to redact third party information, should you edit emails as you did with emails sent in response to my previous SAR, then I will make a complaint to the ICO.
I look forward to receiving the requested information within forty days.
In accordance with the DPA you are entitled to charge a fee of £10 to provide this information, in which case please provide BACs details by return so that I am able to make immediate payment.
When Bernie approached me the first thing I said to him was that I had good information that he was 'friendly' with David Moulsdale. He denied it, but then said, 'The only contact I’ve ever had from him was an email…'
Stressing the word ’spoken’, he continued, 'The only contact I’ve ever had - remember when we had that meeting at the College [4 December w John McDonnell], and you asked have I ever SPOKEN to him, ever SPOKEN to him…’
I interrupted and asked, ’So which email did you have from him?’
Nervously Bernie replied, ‘It was an email… that was saying… that… he felt that, because he represented most of the work done that they should have more than one representative on the WG, and that, err, he had some meeting somewhere and, would I be... and invited me to that meeting, would I attend it. And I said, urm… no, I wouldn’t attend it, and that we looked at the applicants for the WG, and we felt that what we needed was a broader representation of the group that involved, people not just from the commercial sector, but also from academic, also from hospital consultants - that’s the only thing I’ve ever had from him.’
I said, 'Yes, but come on, I’ve seen your emails provided under my SARs, and you were very keen to get me removed [from the Working Group].'
Bernie: 'That was in response to the information that was sent, which was…'
I ended his sentence for him, ‘...nonsense!'
Because, after lobbying Bruce Allen with weekend phone calls, David Moulsdale sent the information concerning me to the WG Chairman on 26 May 2015, which Bruce forwarded to the College a few days later.
Yet Bernie’s emails, intended to influence the Group to object to my inclusion, predate this!
On 14 May Bernie wrote, ‘Perhaps we need to ask the Group whether they can work with her?’,
In his email to the College on 29 May Bruce wrote, 'One of David Moulsdale's key concerns is that Sasha Rodoy should not be involved with the College. He alleges that she is a fraudster and feels strongly that her activities should not be legitimised by inclusion on any College panel. I have emphasised to him that we can only proceed on the basis of facts (not hearsay).’
Unfortunately, the College did NOT proceed on the basis of facts and removed me from the WG without right of reply!
Two important questions that need answering:
• Did Bernie Chang disclose David Moulsdale’s email correspondence to fellow College Trustees and Refractive Surgery Standards Working Group members?
• And, who else besides Bernie Chang did David Moulsdale invite to his ‘meeting somewhere’ to discuss the WG?