Patient concerns re PHE Review emailed to Matt Hancock today

Michael Behan has campaigned for many years for justice for the victims of prescribed benzodiazepines and has an in-depth knowledge of this subject as it relates to the UK.  He was part of the class action in the 1990s.  Most campaigners now prefer the term “dependence” to describe the physical dependence on prescribed drugs rather than “addiction” as the two differ in significant ways.

https://www.benzo.org.uk/behan2.htm

https://www.independent.co.uk/news/doctors-dished-them-out-like-sweets-until-like-opium-they-got-the-masses-hooked-1310450.html

Today Michael Behan has written to Matt Hancock, Secretary of State for Health, outlining his concerns about the current PHE review of prescribed drug dependence and in particular the role of Rosanna O’Connor as Chair of that Review.  A number of patients by experience share his concerns and have agreed to support this email.  We fear that the current review will not address the many issues that need to be addressed and we believe a public inquiry is necessary.

 

Dear Mr Hancock,

I am writing to complain about the appointment of Rosanna O’Connor as chair of the PHE prescribed medicine review and the conduct of that review.

  1. Background – Drug addiction

The basic issue in the consideration of addiction to medicine (ATM) is to decide who is responsible for the addiction; is it the doctors or the patients?

Is the problem involuntary, iatrogenic addiction caused by doctors misprescribing , or is it a drug misuse problem?

Following on from these two opposing explanations are two opposing treatment responses.

The first is that discovered by benzodiazepine addicted patients in the 1970s and codified by Professor Heather Ashton of Newcastle University; slow, tapered withdrawal over a 6 – 12 month period. Gradual withdrawal with drug free goals is safe, cost effective and successful. It has been used worldwide by patients for decades and has been adapted for use in A/D withdrawal.

The second response is the drug misuse/harm reduction model in which patients are held responsible for their addiction.

In this approach, addiction is regarded as a ‘chronic relapsing condition’, in other words it is incurable and abstinence will be unsuccessful.

Drug misuse treatment therefore involves management, not withdrawal.

In the case of benzos, z drugs and A/Ds it means, in practice, that GPs continue to prescribe and DoH provides no withdrawal services.

In the case of illegal drugs, particularly heroin, harm reduction has meant drug substitution. Methadone is substituted for heroin and that is RoC’s background as Director of Deliverance for the National Treatment Agency, the methadone delivery service.

APPGITA, the All Party Parliamentary Group on Involuntary Tranquilliser Addiction chaired by the late Jim Dobbin MP, raised the issue of addiction to medicine in Parliament from 2009.

RoC put herself forward as a hard line opponent of the APPGITA campaign for withdrawal services and as an advocate for the drug misuse point of view.

RoC’s techniques included:

  1. a) Pretending ATM services existed when they did not
  2. b) Pretending there was negligible demand for ATM services
  3. c) Describing ATM as a drug misuse issue, thereby stigmatising involuntary addicts as misusers

RoC used her position and power as a Director of the NTA to support her campaign.

RoC is entitled to an opinion but hers is a controversial and contentious opinion.

  1. RoC is prejudiced

In October 2016 RoC was quoted as follows in the Daily Mail:

“In response to the BMA’s calls, Rosanna O’Connor, director of alcohol, drugs and tobacco at Public Health England, said: “Addiction to prescribed and over the counter medicines is obviously a concern and it is essential that people only take these medicines in accordance with medical advice.

“If people feel that they may be dependent on either prescribed or over the counter medicines they should seek help, speaking to a GP is a good first step.

“Public Health England supports local authorities to develop tailored responses to existing and emerging drug misuse issues in their area and, in conjunction with the NHS, to address specific concerns about addiction to prescribed and over the counter medicines.

“It remains important that all health professionals make every contact count with patients and are alert to possible signs of misuse and dependence, including to prescribed drugs.”

http://www.dailymail.co.uk/wires/pa/article-3863924/BMA-urges-helpline-patients-addicted-prescription-drugs.html

RoC advises it is ‘essential that people only take these medicines in accordance with medical advice’.

Patient groups have contended for 30 years that it is by following medical advice that patients become addicted.

Irrespective of which side of the dispute you agree with (ITA or drug misuse) an impartial review should have an impartial chairperson who considers both points of view.

The conduct of the review has been unfair and biased.

  1. Terms of Reference

The ToR were released gradually, the first version was ambiguously written and it was not possible to know what the review would involve. The ToR were clarified for the public when the minutes of the APPGPDD meeting of 6 June were released on 21 June 2018 and the minutes of the PHE Expert Reference Group meeting in April were published on the internet on 20 July.

  1. a)   Doctors

The review has instructed itself to examine patient characteristics and behaviour only in order to explain ATM. The review will not scrutinise doctors’ behaviour or prescribing. The presumption of the review is that responsibility for ATM lies with the patient, not the doctor. This is a ‘drug misuse’ agenda.

I have included a list in the appendix of doctor related issues that the review could have explored to understand ATM.

An unbiased review would have researched both possible explanations of ATM, drug misuse and involuntary addiction/dependence.

This is one example of RoC’s prejudice distorting the review.

  1. b)  Patients

A second example of prejudice is the exclusion of patients. Patient testimony is specifically excluded from the review; patient ideas, opinions, analysis and solutions are not accepted.

Yet it was patients, not doctors or pharmaceutical companies, who identified benzodiazepine, z drugs and antidepressants as addictive, (doctors, pharma, the licensing authorities CSM and MCA, and DoH insisted for decades the drugs were not addictive).

Patients identified the addiction as a physical addiction, not a psychological addiction.

Patients discovered the safe and successful gradual taper method of withdrawal, later codified by Professor Heather Ashton.

Recovering patients set up the first withdrawal clinics and support groups to help fellow sufferers achieve drug free goals, (DoH withdrew funding and shut them down).

Despite all this, RoC presupposes academics, doctors and their professional organisations have a monopoly of knowledge on ATM.

At the APPGPDD EGM at the House of Commons on 6 June 2018, RoC received a plea from campaigner Barry Haslam for testimony to be accepted from those harmed by ATM.

http://prescribeddrug.org/wp-content/uploads/2015/07/APPG-PDD-minutes-06-06-18.pdf

RoC and her ‘team’ denigrated patients and their testimonies. Listening to patients is rejected because their ideas do not have sufficient ‘strength’, ‘integrity’, ‘rigor’ or ‘robustness’. Hearings of patients’ ideas would be ‘out of scope’ and ‘not applicable’. PHE postulates a ‘hierarchy of evidence’ and patients do not meet the ‘quality criteria’ of that hierarchy.

In no other subject matter would this attitude towards victims be acceptable.

For example, the Grenfell inquiry and the recent child abuse inquiry would not and could not proceed without victim participants.

Doctors are excluded from scrutiny but invited to give evidence to the review. Patients are to undergo detailed scrutiny but are excluded from giving evidence.

  1. c)   Evidence ban

On 17 September 2018, in response to a PQ by Lord Hunt, Lord O’Shaughnessy disclosed a new restriction on the evidence to be accepted by the review. Evidence has to be less than 10 years old.

https://www.parliament.uk/business/publications/written-questions-answers-statements/written-question/Lords/2018-09-04/HL9971/

The main research work on benzo toxicity, addiction, withdrawal and post withdrawal syndrome was completed in the 1970s, 1980’s and 1990s. The research has been published in the academic literature.

http://www.benzo.org.uk/amisc/rpeart.pdf

http://www.benzo.org.uk/vot4.htm

Professor Ashton’s work will also be excluded from the review by the ban.

The DoH and PHE have routinely ignored all of the work and informally excluded it from their previous reviews and drug policy publications on benzos.

That exclusion is now overtly part of the ToR. The evidence ban demonstrates an intention to conceal the damage inflicted by benzodiazepines.

Again, RoC’s prejudice is controlling the review.

  1. Conflicts of interest

Conflicts of interest in this context refer to financial links with the pharmaceutical industry. The review contains multiple conflicts of interest.

Pharma opinion leader, Professor David Baldwin, has been appointed to the ERG. Professor Baldwin promotes drug use, not withdrawal. His appointment is the subject of a complaint to the RCPsych by an A/D campaign group.

https://www.madinamerica.com/2018/08/conflicts-interest-questioned-government-led-mental-health-medication-review/

https://www.madinamerica.com/2018/03/formal-complaint-uk-royal-college-psychiatrists-2/

Two members of the ERG have declared financial connections with the pharmaceutical company Indivior.

Those members have not declared, however, that the pharmaceutical company Indivior is promoting and marketing ‘anti-addiction’ drugs which are claimed to treat ATM.

NatCen has been appointed part of the review. Professor John Strang and NatCen wrote two previous reports on ATM in 2011 and 2017. Both were drug misuse reports, blaming patients as misusers and absolving doctors.

Professor Strang was exposed in the Independent newspaper for multiple undeclared financial connections with drug manufacturers.

https://www.independent.co.uk/life-style/health-and-families/health-news/professor-who-wrote-coalition-health-policy-was-paid-by-drugs-firm-2325928.html

Professor Strang is another pharmaceutical opinion leader.

Professor Strang and NatCen cherry-picked the literature to report minimal drug side effects and withdrawal symptoms. On page 21 of the 2017 NatCen report they claim benzodiazepine withdrawal symptoms last up to four weeks only.

  1. Conclusion

The drug misuse/patient blaming agenda suits the pharmaceutical companies perfectly.

No responsibility is attached to the manufacturers.

No scrutiny of doctors means no enforcement of guidelines which means continued overprescribing.

No withdrawal services mean no reduction in prescriptions or sales and no escape for addicted patients.

Professor Strang’s two Drug misuse reports were a waste of time and money for everyone else involved. Professor Strang blocked any reform intended by the Health ministers involved, Gillian Merron MP, Anne Milton MP and Anna Soubry MP and by Prime Minister David Cameron MP.

RoC’s review is a continuation of the same approach.

‘Drug misuse’ is the dominant ideology within the DoH, PHE and doctors’ organisations. They have no interest in drug withdrawal treatment or drug free outcomes.

RoC is a drug misuse administrator and advocate who has excluded opposing points of view from the review.

RoC is not an independent chair and her management of the review confirms that.

The likely outcome of the review will be the normalisation and management of ATM rather than prevention or withdrawal treatment.

The Prime Minister on Benzodiazepine Addiction: “First, I pay tribute to the hon. Gentleman (Jim Dobbin, MP), who has campaigned strongly on this issue over many years. I join him in paying tribute to Professor Ashton, whom I know has considerable expertise in this area. He is right to say that this is a terrible affliction; these people are not drug addicts but they have become hooked on repeat prescriptions of tranquillisers. The Minister for Public Health is very happy to discuss this issue with him and, as he says, make sure that the relevant guidance can be issued.” – Rt. Hon. David Cameron MP, Prime Minister, October 23, 2013.

 I look forward to your reply.

Yours sincerely,

Michael Behan  – Former researcher, Office of Jim Dobbin MP

 

Co-signatories

Barry Haslam – Ex-Chair Oldham Tranx

Graham Smith  – Expert patient by experience

John Perrott   – Former researcher, APPGITA

Fiona French – Expert patient by experience

Alyne Duthie –  Expert patient by experience

Pamela Wilson – Expert patient by experience

Andy D’Alessio  – Expert patient by experience

Janet Crouch –  Expert patient by experience

Jen Hider –  Expert patient by experience

 

 

 

 

Appendix

  1. Number of patients with lost or incomplete records
  2. Polypharmacy; patients prescribed psychotropic cocktails including benzodiazepines
  1. Prescribing trends from weaker to stronger strength benzodiazepines e.g. diazepam to lorazepam (ratio 1:10)
  1. Number of children prescribed benzodiazepines and z drugs
  2. Number of pregnant women prescribed benzodiazepines and z drugs
  3. Long term prescriptions – A schedule of the duration of benzo/z drug prescriptions by year showing the numbers prescribed from 1 year up to 50 years
  1. Number of patients who were warned they were at risk of addiction
  2. Number of patients who have received withdrawal advice and details of the advice given i.e. protocol suggested including tapering advice, number of withdrawal attempts and the number of successful withdrawals with a drug free outcome
  1. Number of patients prescribed benzos and z drugs deregistered from surgeries
  2. Number of yellow cards completed on benzos
  3. Number of deaths associated with benzos and z drugs
  4. Number of hospital admissions related to benzos and z drugs
This entry was posted in Benzodiazepine withdrawal syndrome. Bookmark the permalink.

2 Responses to Patient concerns re PHE Review emailed to Matt Hancock today

  1. Lynne says:

    Oh dear, Fiona, this sounds like a de-railment of the enquiry. Heart sinking.

    Like

  2. fhfrench says:

    I doubt we will have much influence at all.

    Like

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