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April 6, 2012

Dear Mark,

Thank you for sending me the draft notes of the roundtable meeting on addiction to medicines held on 15 March 2012 and also an update to the draft consensus statement.

Firstly, I would like to ask you why people representing different and diverse problems which are a subject in their own right and have very different solutions have all been grouped together as if one solution will fit all. A substance misuse approach has been imposed upon all the service users and providers by DH, RCGP SMMGP, NTA, MHRA, doctors and psychiatrists who are dominating the round table proceedings. Involuntary tranquilliser addiction is not substance misuse and theories and remedies based on this are inappropriate.

You asked for my comments and they are as follows.

In your draft notes you say that overall, the group stated that they were happy with the concept of signing up to a consensus statement.

I would like to state that I am not happy with the concept of a consensus statement because when it was first introduced it was not agreed by all the attendees and subsequently it is being imposed by the professionals upon the service users and providers.

My comments on the updated consensus statement are as follows:

I also saw in your notes regarding benzodiazepine dependence that the group unanimously agreed that psychological therapies, including cognitive behavioural therapies can be beneficial. I do not agree with this and therefore it cannot be unanimous. I do not consider my addiction to be substance misuse so how can CBT help me?

In your notes you stated that "the MHRA reported on their work to develop e-learning packages" but the MHRA are part of the problem by:

I was put on Ativan when I was 11 and abandoned on it by GPs until I was 36. Adequate warnings should be provided by the MHRA on the SPCs and PILs and these should be publicly available. I believe that these drugs are too powerful to put on general prescription.

The consensus statement says that for people with some conditions such as serious mental health issues, longer-term prescribing of suitable benzodiazepines may be appropriate. This ignores the fact that the medical profession does not understand that symptoms which may be misdiagnosed as serious mental health issues are often caused by toxicity, tolerance and withdrawal. The consensus statement is just a green light to maintain the status quo and keep people on them with maintenance prescribing.

The consensus statement states that dependence is a hidden problem but the people responsible for hiding it are those dominating the round table.

The round table has not provided any real action points either but just vague aspirations with no time frames. These are all being actioned by the people who are part of the problem.

I would have suggested action points at the first meeting but I was sidelined and did not have my views heard so I will list them for you now:

  1. A working party on withdrawal comprising those who are most successful in the field i.e. all the withdrawal charities, to design a best practice, to be endorsed by the DH and signed up to by the Royal Colleges, to be used nationally uniformly to give a coherent national strategy for the treatment of involuntary tranquilliser addiction using the current charities as pilots. The charities are successful at withdrawal so what they practice should be followed 100%.

  2. Patients should be fully informed of the dangers of addiction and side effects prior to prescribing benzos. Adequate warnings should be provided by the MHRA on the SPCs and PILs and these should be publicly available.

  3. The BNF 2-4 week guidelines to be strictly adhered to with new patients and the first two weeks are to be considered as treatment and the final two weeks as the tapered withdrawal period.

  4. The Chief Medical Officer should issue clear instructions to control polypharmacy. This is the treatment of ADRs and withdrawal symptoms caused by benzos misdiagnosed as the re-emergence of original problems or development of new ones with further psychotropic and other medication.

  5. Withdrawal symptoms can persist for a long time (up to 5 years and beyond after complete withdrawal.) Some have persisted for long enough to represent permanent damage i.e. 5 years plus. A package should be designed providing medical, psychological and social support during withdrawal, post-withdrawal and for those with long-term damage.

  6. GPs to supply patients prescribed outside the guidelines with the Ashton Manual and inform them of their predicament offering them the choice of withdrawal and support.

  7. To stop the practice of enforced/abrupt withdrawals by reduction/cessation of prescriptions. I and other patients who have complained about their doctors in the past have been strongly advised against complaining by their surgeries or deregistered; this is not fair and incidents such as these should be investigated.

  8. A positive statement from DH that patients should not be discriminated against or stigmatised as substance mis-users as they were following medical advice which caused their addiction.

  9. DH to devise an effective method of enforcing the prescribing and withdrawal guidelines.

  10. Non-pharmacological routes are to be considered the primary treatment for patients with mental health problems such as anxiety, depression and insomnia.

  11. DH to liaise with the Department of Work and Pensions to improve recognition of involuntary tranquilliser addiction and access to benefits for those suffering from this unrecognised illness.

These are action points that I consider necessary and wish them to be logged in the round table minutes.

I see that the next round table meeting is not until December, 9 months ahead. It does not appear by this that DH is treating this issue with any urgency and while these meetings just drag on people are suffering the worst kind of mental torture caused by doctors continuing to ignore prescribing and withdrawal guidelines.

I would like you to provide a response to all my comments above and ensure that they are circulated to all members of the group.

Yours sincerely,

Josh Jarrett

Ashton Manual · APPGITA

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