NRES publishes lies about SMILE study – 1st April

1st April 2011

To: Joan Kirkbride <joan.kirkbride@nres.npsa.nhs.uk>

Cc: janet.wisely@nres.npsa.nhs.uk, “sally.davies” <sally.davies@dh.gsi.gov.uk>, “Bill.Davidson” Bill.Davidson@dh.gsi.gov.uk

Dear Joan,

Thank you for your mail of 16th March. I believe you may have again been misled by the SMILE research team. You said:

“1. It was never the intention that Alastair Gibson would provide research interventions and no change has been made since initial submission.”

In March 2010, this announcement was made on Alastair Gibson’s

Withinspiration website:

““Breaking News – NHS and Lightning Process research collaboration.

“A new pilot study involving the Lightning Process and the NHS has been awarded £164,000 for research into the treatment of CFS/ME in children and adolescents. Alastair Gibson is one of the two practitioners working with the NHS and the young people in this exciting research study. Find out more.”

As you are aware, Alastair Gibson is one of two LP traders named in the study outline. The other is Phil Parker. You have not explained what Gibson’s role was intended to be, and you are not able to name the LP traders who are involved with the direct interventions. I did as you advised, and wrote to ask the research team for this information, but have received no reply.

2. Thank you for confirming that NRES did receive the correct information about the ASA ruling against Alastair Gibson’s trading of The Phil Parker Lightning Process through “Withinspiration”.

You say: “The name was given incorrectly in the summary document provided to the SW2 REC.”

I assume you mean the summary document provided for the review meeting. This suggests that the committee that conducted the review meeting was not fully appraised of the facts of the case prior to the meeting. There were only two LP traders named as involved in the study: Alastair Gibson and Phil Parker. Both sell the Phil Parker Lightning Process. The ASA ruling was against the false claims of cure of disease by means of the Lightning Process. It is not therefore, substantially relevant to the ethical considerations of the study, whether it was Phil Parker himself or Alastair Gibson’s trading of the same product that was the direct subject of the ASA ruling. If this was simply a matter of using the wrong name, it begs the question why you deemed it necessary to publish such a fulsome apology to Phil Parker for the embarrassment caused him by this simple mistake, and why you did not point out that it was the other LP trader named in the study that was the subject of the ASA ruling, rather than referring to Alastair Gibson’s business as an “entity”.

In your apology to Phil Parker, you said:

“Mr Parker has confirmed that the complaint that was investigated by the Advertising Standards Authority (ASA) did not concern him but rather an entity called “WithInspiration” with whom he has no financial, employment or other interest. It is a private business managed by a registered Lightning Process Practitioner and he had no ability to influence the day to day management or marketing of this business. The complaint made and subsequent adjudication was not related to Mr Parker and he has never been the subject of any complaint investigated by the ASA or by trading standards.”

You had been in receipt of all the documentation and correspondence relating to SMILE and so you must have been aware that this is untrue.

As Alastair Gibson is a registered Lightning Process trader, Phil Parker does have financial and other interest in Alastair Gibson’s business and he does have an ability to influence Alastair Gibson’s marketing of the Lightning Process – I expect you have a copy of the Phil Parker Group Code of Ethics and are aware of the financial arrangements pertaining to LP practitioners’ trading of the LP. As the adjudication related to Alastair Gibson’s claims about the LP, and as Alastair Gibson is an authorised LP trader, it was, by definition, related to Phil Parker. It was also untrue that Phil Parker has never been the subject of complaint investigated by Trading Standards – you did not say you had been told this, you stated it as fact, yet you had been told that he was the subject of complaint, and you have been provided with evidence that a complaint against him was under investigation by TS at the time you made that statement.

You were not only publishing untruths, you were also asking members of the public to publicise those untruths, which you untruthfully said was in order to “reflect the correct position”.

3. You were sent our response to the minutes of the REC review meeting on 17th January – it is now 1st April. This is an unacceptable length of time to respond to matters which the REC should have taken into consideration originally, and which the NRES should have thoroughly investigated in preparation for the review. You have given no reason why you should take so long to consider the points raised, other than the length of the document.

4. I have been informed of your response to the news that Phil Parker and his associates, under the name of the Phil Parker Group, are currently the subject of investigation by Trading Standards and the Advertising Standards Authority. I believe you were sent the letter from the TS investigating officer in which he stated:

“I will also be making a complaint to the ASA on behalf of Hampshire Trading Standards to ensure that they cover all the areas that we have issues with – this will include their website and any YouTube videos TPPG, or its associates, have published.”

I gather you wrote:

“We note the statement that Lightening (sic) Practitioners have been willing to comply with the law when advised to do so and do not think there is any further action required by NRES at this time.”

This is an incredible statement for the NRES to make under the circumstances. You have said before that if new evidence is submitted then you will take that into account. You felt it necessary to issue a full apology for incorrectly stating that Phil Parker had been subject to a ruling by the ASA. You now have evidence before you that the Trading Standards investigating officer is sufficiently concerned about the “number of areas of TPPG (The Phil Parker Group) advertising methods which could mislead consumers” that he wishes to ensure that the ASA will cover all the areas that TS themselves “have issues with”.

It is totally irrelevant to the ethical considerations of this study whether or not the LP traders involved in this study will amend their advertising to comply with the law. The pertinent issue is that they are currently breaking the law and were doing so when children were recruited for the study. This means, as you have been told before, that the young people and parents/care-givers concerned were subject to promises of therapeutic benefit from the Lightning Process.

Moreover, I can confirm that Alastair Gibson did not amend the content of his website after the ASA ruling, as ASA’s remit did not cover website content at the time. This means that he did not act on the implication of the ASA ruling that his website was in breach of Trading Standard regulations, even though he knew he was named as involved in the study at that time and that research participants would be advised to read its content, which included reference to SMILE and a link to the details of the study on the Bristol University website. To be clear, his website was in breach of OFT, TS and ASA guidelines. To also be clear: Phil Parker’s own website and advertising material has also been in breach of these guidelines – which TS now confirm they deem to be the case currently – it is Phil Parker’s main LP website and his trading practices that have been the main focus of their investigation. So what you are, in effect, implying, is that it is acceptable for these traders to make false and unsubstantiated claims and to provide misinformation and promise of therapeutic benefit to research participants, provided they have been caught doing it by Trading Standards and have complied with any adjudication made against them, regardless of the ethics of the matter.

Myself and others, including organisations that represent a large number of people, have provided you with relevant facts and information that show clearly the reasons why it is neither safe nor helpful in scientific terms to proceed with this study. I believe I have been given information by the NRES which is untrue, and have beenrequested to publicise such information.

I have concerns with the apparent lack of due regard to the rights, safety, dignity and well-being of the child research participants and a lack of scientific rigour in the study proposal approved by the ethics service. This is not the standard of behaviour, professionalism and competency that the public expect from senior officials working for the NHS, and certainly not from the Ethics Service.

Yours sincerely,

(Patient Advocate)

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