Over The Top: Tackling Medical Power

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APPGITA submission to the Labour Party Public Health manifesto

Andy Burnham MP, Shadow Health Minister, hosted two seminars at Westminster on the subject of addiction to medicines. As a result of these seminars a working group was formed, which included the late Jim Dobbin MP, chair of the All Party Parliamentary Group on Involuntary Tranquilliser Addiction.The purpose of the working group was to provide Andy Burnham and Luciana Berger, Shadow Public Health Minister, with a manifesto submission on addiction to medicines.

Jim Dobbin presented this  submission from APPGITA produced by Mick Behan to Andy Burnham in May 2014.

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International Benzodiazepine Symposium

New Year greetings, John,

I have not heard back from you for some time.  I keep sweeping APPGITA’s posts into my www.AdvocateForSocialReform.com website, applauding your efforts to awaken your government and the psycho-pharma Goliaths to the benzo scandal that continues to plague so many for decades.

Here is my latest attempt to do likewise:

An International Benzodiazepine Symposium
September 15-17, 2016
Bend, Oregon

A gathering of people in the United States and abroad–health care professionals, neurological researchers, government officials, pharmaceutical representatives, former and current benzo dependent patients–anyone on either side of the psychopharma fence, whose lives have been impacted by psycho-pharma’s iatrogenic ‘takeover’ of millions of people’s brains; and how we are going to resolve an almost 60year blunder using principles of  Ethical Responsibility and Restorative Justice.

Sincerely,

Marjorie

Marjorie Meret-Carmen, M.Ed.

Advocate For Social Reform
Bend, Oregon, USA

meretcarmen@aol.com

541-312-1740

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Correspondence with Duncan Selbie, CEO, Public Health England

Dear Mr Perrott                                                                                                   9 January 2015

I note you have also written to Rosanna O’Connor,  and she will respond in detail to your concerns, including on the proposed pilots.

I recognise that you are not happy with this approach. Notwithstanding, I hope you will provide comment on the pilots and help shape and guide them.

Best wishes, Duncan
Duncan Selbie
Chief Executive

Public Health England

0207 654 8095

Protecting and improving the nation’s health

Dear Duncan,                                                                                                      10 January 2015

Constructive comments have already been sent repeatedly and in abundance to PHE and the NTA over the years by Professor Ashton and the late Jim Dobbin MP (APPGITA Chair). All of these have been ignored by the NTA and PHE.

PHE has also ignored Anna Soubry’s direction laid out in her keynote address at the NTA seminar on addiction to medicines.

We already have a world recognised expert in benzodiazepines in Professor Ashton and successful withdrawal charities for prescribed tranquilliser withdrawal with 30 years experience and 85% success rate with drug free withdrawal outcomes, based on the Ashton manual, whose practice simply needs to be duplicated nationwide.

Local areas do not have this expertise and neither does PHE.

Rosanna O’Connor does not take any notice, does not understand the subject and continues to adopt a substance misuse approach to involuntary tranqilliser addiction..

I will not be party to endorsing PHE’s flawed policy on addiction to prescription tranquillisers.

When this issue flares up again, which it will, I will be the first to focus attention on PHE’s role in its failure to provide appropriate withdrawal services.

I suggest that you investigate this yourself instead of relying on officials who do not understand the subject and have their own agendas and that you also visit Bristol and District Tranquilliser Project, which provides advice and support to some of the 1.5 million patients addicted to these prescribed drugs through no fault of their own.

Regards,

John

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Correspondence with Rosanna O’Connor, Director Alcohol and Drugs, PHE on the PHE outline proposal intended to support a small number of pilot areas to improve their responses to addiction to medicines

Dear Rosanna,                                                                                                   4/1/2015

Thank you for your email in which you asked for my comments on the PHE outline proposal intended to support a small number of pilot areas to improve their responses to addiction to medicines.

I must say that campaigners are very disappointed in this draft. I had hoped that the correspondence and information provided to PHE and the NTA by APPGITA, Professor Ashton and through our recent meeting last year would result in an increase in PHE’s understanding of the issue of involuntary tranquilliser addiction, but having read the document which you sent this is obviously not the case.

The draft guide repeats the same mistakes made in previous documents, including the PHE Commissioning guide and also reports submitted by the NTA and the NAC to inform the Department of Health’s policy review on addiction to medicines. All of these conflated the populations of involuntary tranquilliser addicts (ITAs) and illicit drug users and mixed up tranquillisers (benzodiazepines and z drugs) with opiates and other drugs.

The draft is overly complicated adopting a “one size fits all” approach and continues to misrepresent ITAs as substance misusers. There is not one mention of “iatrogenic” or “involuntary” in the document.

The only result will be a decrease in understanding of the issue by those who read it.

All the above points have been made clear to the NTA (now PHE) by APPGITA and Professor Ashton many times and I am beginning to wonder if PHE’s continuing lack of understanding of the issue is deliberate.

ITA is a simple issue – doctors have prescribed addictive tranquillisers beyond the 2 -4 week CSM prescribing guidelines issued in 1988. Tranquillisers used long-term alter the patient’s brain chemistry. The problem patients face are severe physical and psychological withdrawal symptoms experienced on dose reduction because the brain has to re-adapt to pre-drug conditions whilst reducing dosage. In many cases these symptoms last for many years after cessation and patients describe them as coming in waves.

Tranquilliser withdrawal therefore requires specialist advice and support and the treatment requirements are very different to those associated with illicit use and opiate addiction. The support and advice required is the same nationally, hence the ludicrous situation created by the Health reforms of having 152 local authorities and 212 CCGs all evolving treatment responses separately.

More detailed comments on the draft document you sent me are as follows; quotations from the draft are in italics:

Background

“The 2010 drug strategy requires local areas to “consider dependence on all drugs, including prescription and over-the-counter medicines”

The Drug Strategy 2010 is a substance misuse document which has no relevance to ITA. I have made this clear many times to PHE and you.

“Medicines problems can be a bridge into, or occur alongside or as an alternative to, illicit drug use, especially in secure environments”

Illicit drug use in prisons has no relevance to ITA.

“Plan

Clinical advice – clinical team consultant psychiatrist”

ITA is not a mental disorder but a condition created by taking tranquillisers long-term resulting in altered brain chemistry. The main problem patients face is dealing with and understanding the withdrawal symptoms whilst the brain re-adapts. This process may take many years during which specialist support is required.

Psychiatrists diagnose mental disorders and then prescribe drugs often leading to polypharmacy. Psychiatrists’ over-prescribing, mis-prescribing and poor and dangerous withdrawal advice has contributed significantly to the cause and continuation of the problem.

Clinical advice may be found in the Ashton manual, the NHS Clinical Knowledge Summaries and the BNF. The “Orange Book” is on substance misuse and is inappropriate. Also, the Factsheets produced by SMMGP are predominantly on substance misuse with only lip service paid to ITA.

Benzodiazepine expert Professor Lader said on “Face the Facts” in 1999 “It is more difficult to withdraw people from benzodiazepines than it is from heroin. It just seems that the dependency is so ingrained and the withdrawal symptoms you get are so intolerable that people have a great deal of problem coming off. The other aspect is that with heroin, usually the withdrawal is over within a week or so. With benzodiazepines, a proportion of patients go on to long term withdrawal and they have very unpleasant symptoms for month after months. I get letters from people saying this can go on for two years or more. Some of the tranquilliser groups document people who still have symptoms ten years after stopping.”

“Plan                                               

Data – NDTMS and advice on accessing and analysing prescribing data”

The NDTMS does not collect information on ITA and I recall at our meeting that you said that there were no plans for NDTMS to collect data on ITA in the future either.

“It would also cover qualitative evaluation of the pilots.”

Qualitative evaluation should include the following:

1. Using an outreach approach working with GP surgeries to identify ITAs as it is a hidden problem

2. Providing patients with information about their predicament and offering specialist withdrawal advice and support without pressure or threats to cut off prescriptions.

3. Service providers’ withdrawal protocols should follow the slow taper method with the patient in control as per the Ashton manual, with drug free goals (recovery can never occur whilst still on tranquillisers).

“Funding will not be provided for service provision although limited funds will be made available for development activity, such as local events.”

Why will funding not be provided when the scale and nature of the problem dwarfs substance misuse for which funding and treatment is available?

Commissioners and service providers are still unaware of the scale of the problem, estimated at around 1 million. The NDTMS figure of 3906 quoted in the PHE Commissioning Guide has significantly contributed towards a continuation of this lack of understanding. Commissioners will be led by the Commissioning Guide to believe that the scale of the problem is small making allocation of funding extremely unlikely.

Interest

PHE centre alcohol and drug teams were asked in 2013 to suggest areas that might be interested or had expressed an interest in a pilot. Responses then included:

Southwark, London

Newcastle and N Tyneside, North East

CRi Dudley, West Midlands

Derby, East Midlands

Havering, London”

I am interested to know the reasons given by those expressing an interest in the issue. Are these areas aware of the benzo.org.uk website and the work of APPGITA? I see that one of them is Derby. Derby actually decommissioned ITA withdrawal services last year in a joint decision with ADS which provided them. The reason given was lack of uptake indicating that their approach was wrong in identifying ITAs because there will be several thousand in every local area.

Number of pilots and their selection

We probably only have the resources centrally to support a maximum of 4-5 areas.”

As I said at our meeting, this is inadequate. Coupled with the misinformation in the draft document intended to support these areas it is very likely to fail.

“Examples of different stakeholders’ contributions:

Primary care medical practices, commissioned by NHS England for general medical services, retain responsibility for initial responses to patients experiencing problems with prescription and over-the-counter medicines”

Primary Care medical practices have in fact been responsible for creating and sustaining addictions to tranquillisers for five decades. To refer patients back into this system will not provide a solution.

Doctors’ professional organisations continue to treat ITA as substance misuse to suit their own purposes, passing the blame on to the patients.

“Local authorities are responsible for commissioning services for drug and alcohol dependence, including ATM, which may work directly with severe and complex cases or provide specialist expertise and support to primary care”

Which specialist expertise? With very few exceptions the only expertise I am aware of is that provided by the withdrawal charities such as CITA and the Bristol and District Tranquilliser Project (BDTP). My survey proved that ITA is not being treated by local areas. Effective responses require drug and alcohol services to read, understand and implement the Ashton manual – many have not even heard of it – and to follow the successful withdrawal advice and support as practiced by CITA and BDTP.

I would recommend that you visit BDTP which would give you valuable insight which may then be passed on to the pilots.

“Medicines management, and especially controlled drug accountable officers (CDAOs), monitors and ensures the safety of prescribing”

This is incorrect. CDAO’s have no remit or jurisdiction over doctors’ prescribing which is deemed “clinical judgement”.

“Community pharmacies, which may be commissioned by NHS England, CCGs and local authorities, are an important frontline in identifying problems, especially with over-the-counter medicines, and providing a first line response”

I am informed by a local pharmacy manager that pharmacies do not take up issues such as the over-prescribing of tranquillisers because they do not wish to fall out with the doctors or challenge their clinical judgement.

There is no record of any pharmacy taking up this issue with GP surgeries.

“Some areas have a long history of providing effective, integrated responses. Some of these have been featured in PHE-collated practice examples from which others can learn.”

Please send me details about these examples.

“High levels of prescribing and need for attention to ATM in the area (North East, North West and Y&H feature heavily in the prescribing data and some parts have already done some work on the issue. South West has supported dedicated and integrated services and been keen to develop further)”

Please send me details about the work already done by these areas.

In summary, if these pilots are to succeed and pass on their understanding to other areas it is crucial that the support and advice given to them increases their understanding of the issue. The draft you have sent me will have the opposite effect.

I hope that you will take my comments on board and I will be happy to provide advice on any amended proposals.

Best wishes,

John

 

John                                                                                       23/12/2014

As promised when we met, we have progressed our plan to support a small number of pilot areas to improve their responses to addiction to medicines. We have to leave it to the areas themselves to decide where and how they focus their efforts, according to local need, but we have provided our PHE Centre teams with the attached outline proposal and they have started to identify a small number of areas interested in taking part.

I would really welcome any comments or suggestions you may have on the attached outline, or on how the pilots might be improved, as I fully appreciate your interest. We will be aiming to confirm the local pilot areas and to support them in working up their plans in the New Year so comments by the time we all return to work in earnest in the week beginning 5 January would be great.

In the meantime, I hope you and Steph have a good Christmas time and a Happy New Year.

Best wishes,

Rosanna

Rosanna O’Connor

0203 682 0501

07776 250 724

 

Dear Rosanna,                                                                                             4/1/2015

As you will have gathered by my email I did not realise that you have already sent the outline proposal to the PHE Centre teams but having read your email again I realise that the document has already been sent. I fail to see how anyone would understand about involuntary tranquilliser addiction by reading your outline proposal which does not explain that this is about people who have been damaged by taking drugs prescribed by their doctors only and by the nature of the pharmamcology of the drugs require specialist support and help, many of them for years.

Professor Lader was correct in saying these people will “go to their graves with their pill bottles beside them”.

Why did you not consult APPGITA before sending it out?

Yet again, decisions are made behind closed doors and patients will continue to be damaged and misrepresented as substance misusers.

Regards,

John

 

Dear Duncan Selbie,                                                                         4/1/2015

Having had what I thought was a productive meeting with Rosanna O’Connor and Alex Sienkiewicz last September on the issue of involuntary tranquilliser addiction I am more than disappointed to receive the PHE outline proposal intended to support a small number of pilot areas to improve their responses to addiction to medicines, which is a pointless, confused document which will be no help whatsoever to those addicted through no fault of their own to tranquillisers prescribed by their doctors.

You may read correspondence between myself and Rosanna on the All Party Parliamentary Group on Involuntary Tranquilliser Addiction (APPGITA) website link below.

When you have read this correspondence would you please provide me with an explanation as to why PHE have got this so wrong?

Correspondence with Rosanna O’Connor, Director Alcohol and Drugs, PHE, on the PHE outline proposal intended to support a small number of pilot areas to improve their responses to addiction to medicines

Regards,

John Perrott

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Response from Sarah Wollaston MP, Chair Health Select Committee 11 December 2014

Click here to read letter

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Response from DH on behalf of David Cameron

Click here to read response to letter below from DH on behalf of David Cameron 18 November 2014

The Rt Hon David Cameron MP
Prime Minister
10 Downing Street
London
SW1 2AA

6 October 2014

Dear Prime Minister,

I am pleased to see your comments about the late Jim Dobbin MP during the debate (below) on 8 September and that you again acknowledge the importance of the issue of addiction to prescription drugs.

Regardless of what you have been told by the Department of Health, nothing is happening on the issue of involuntary tranquilliser addiction. I enclose my survey of 152 local authorities as proof of this.

Given that there are 1.5 million people estimated to be on these drugs long-term, that equates to 9000 – 10,000 average per local authority. As you will see only 180 patients have completed treatment drug-free in 47 local authorities.

This means that only 0.04% involuntary tranquilliser addicts have been successfully treated since April 2013 when the Health reforms were introduced.

The last response I received from the Department of Health (below) states that it is not its responsibility and refers me to individual local authorities’ complaints procedures. This is a problem created by the health and care system and it is the responsibility of the Department of Health.

Previous letters to you from Jim Dobbin MP and the All Party Parliamentary Group on Involuntary Tranquilliser Addiction (APPGITA) have been forwarded to the Department of Health for response which is not satisfactory as the Department of Health is the main obstacle to helping these patients.

I would therefore ask you to personally intervene on this issue as I did in my previous letter.

I would suggest that you meet APPGITA member and my MP, Eric Ollerenshaw, to discuss a way forward.

Yours sincerely,

John Perrott

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Letter from Prime Minister’s office 23 October 2014

Click here to read response from David Cameron’s office to letter below

The Rt Hon David Cameron MP
Prime Minister
10 Downing Street
London
SW1 2AA

6 October 2014

Dear Prime Minister,

I am pleased to see your comments about the late Jim Dobbin MP during the debate (below) on 8 September and that you again acknowledge the importance of the issue of addiction to prescription drugs.

Regardless of what you have been told by the Department of Health, nothing is happening on the issue of involuntary tranquilliser addiction. I enclose my survey of 152 local authorities as proof of this.

Given that there are 1.5 million people estimated to be on these drugs long-term, that equates to 9000 – 10,000 average per local authority. As you will see only 180 patients have completed treatment drug-free in 47 local authorities.

This means that only 0.04% involuntary tranquilliser addicts have been successfully treated since April 2013 when the Health reforms were introduced.

The last response I received from the Department of Health (below) states that it is not its responsibility and refers me to individual local authorities’ complaints procedures. This is a problem created by the health and care system and it is the responsibility of the Department of Health.

Previous letters to you from Jim Dobbin MP and the All Party Parliamentary Group on Involuntary Tranquilliser Addiction (APPGITA) have been forwarded to the Department of Health for response which is not satisfactory as the Department of Health is the main obstacle to helping these patients.

I would therefore ask you to personally intervene on this issue as I did in my previous letter.

I would suggest that you meet APPGITA member and my MP, Eric Ollerenshaw, to discuss a way forward.

Yours sincerely,

John Perrott

 

Debate 8 September 2014:

Paul Flynn (Newport West) (Lab): Perhaps the best way we can honour the memory of Jim Dobbin is to ensure the continuation of the fine work he did here and on the Council of Europe to help those who have become addicted to prescription drugs….

The Prime Minister: It is a rare event for the hon. Gentleman and I to be in almost complete agreement, but I think this is it! I agree with what he said about the importance of the issue of addiction to prescription drugs…….

Prime Minister’s Questions 23 October 2013:

Jim Dobbin (Heywood and Middleton) (Lab/Co-op):

A total of 1.5 million people in the UK are addicted to the benzoadiazepines diazepam and “Z drugs”. I know of one individual who has been on those products for more than 45 years—a total life ruined. They are not drug misusers; they are victims of the system of repeat prescriptions. Will the Prime Minister advise the Department of Health to give some guidance to the clinical commissioning groups to introduce withdrawal programmes in line with the advice from Professor Heather Ashton of Newcastle university, who is the expert in this field, to give these people back their lives?

The Prime Minister:

First, I pay tribute to the hon. Gentleman, 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.

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email to Dr Sarah Wollaston, Chair, Health Select Committee

Dear Dr Sarah Wollaston,

Thank you for your email and letter regarding the Health Select Committee considering involuntary tranquilliser addiction as a subject for future inquiry. I have since sent further data listed below to Sharon Maddix to forward to David Lloyd, Clerk of the Health Select Committee.

1. Prescriptions 2012/13 http://www.hscic.gov.uk/catalogue/PUB13887/pres-cost-anal-eng-2013-rep.pdf

This shows total 2013 tranquilliser prescriptions at 16.9 million, antidepressants 53 million giving a total of 70.2 million prescriptions, an increase on the 2012 total of 67.3 million

2. Drug poisoning admissions 2012 drawing attention to ICD-10 classifications T424 benzodiazepines, T426 Z drug tranquillisers and antidepressants at T430 and T431.

3. ONS drug death statistics.

Death from illegal drugs 2012 heroin, morphine and cocaine deaths are 579+139 =718.

Deaths from prescribed drugs benzodiazepines 284 + antidepressants 468 =752

4. The papers in the links below by Dr Reg Peart referencing 142 academic papers and articles on the risks associated with benzodiazepine use

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

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

5. PQs on tranquillisers from Jim Dobbin MP and Eric Ollerenshaw MP January 2008 – September 2014

 

The document to which you refer, Drug Misuse and Dependence known as the “Orange Book” only provides guidelines on withdrawal for drug misuse.

You are confusing involuntary tranquilliser addiction with a substance misuse issue.

There are already appropriate guidelines for withdrawal for involuntary tranquilliser addicts (ITAs) including the BNF guidelines, Professor Ashton’s manual and the NHS Clinical Knowledge Summaries (online).

What is required is not more guidelines but for doctors to follow existing ones including the 1988 CSM 2 – 4 week prescribing guidelines and the withdrawal guidelines above.

The PHE consultation is about misuse. PHE has no interest in helping ITAs and that is why we need a Health Select Committee inquiry to investigate the following:

1. Doctors ignoring existing guidelines which caused the problem in the first place.

2. The lack of appropriate withdrawal services as shown by my survey of 152 local authorities (attached)

3. The harms, medical and socio-economic, caused by long-term tranquilliser use and detailed in Dr Reg Peart’s 142 papers.

 

I have already met Rosanna O’Connor, Director Alcohol and Drugs, PHE in September this year to discuss this issue. Rosanna O’Connor said:

a)  There is no central accountable body taking control of the issue of addiction to prescribed tranquillisers

b)  It is not within the remit of PHE to provide national specialist withdrawal services for involuntary tranquilliser addiction (ITA) or to tell local authorities how to spend funding or what treatment to provide which is a local decision

c)  Campaigners should be focusing on NHS services to provide a solution and not PHE and substance misuse services

d)  The National Drug Treatment Monitoring System (NDTMS) does not collect data on ITA and neither will it do so in the future

e)  Most local authorities are not providing treatment for ITA

f)  Most ITAs remain hidden in treatment by their GPs

g)  There are only a handful of withdrawal charities (less than 6) providing specialist tranquilliser withdrawal services nationally

I hope that this clarifies PHE’s position on the issue.

None of the APPGITA agenda is within the Terms of Reference of the PHE consultation and therefore deferring consideration of ITA as a subject for inquiry until account is taken of PHE’s response to the consultation is inappropriate.

Kind regards,

John Perrott

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Parliamentary Questions on involuntary tranquilliser addiction January 2008 to October 2014

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