Dear Ms Milton,
I wrote to you on 2 August 2011 and also David Cameron on 6 August and 2 September expressing my concerns regarding the damage that prescribed benzodiazepines have caused not only myself but many others. I spoke on the Radio 4 programme “Face the Facts” on 3 August 2011 on which when asked what you made of Dr Gerada’s assertion that “there isn’t much of a problem and withdrawing from benzo addiction isn’t that hard” you said that “I would disagree with her, that’s not the story I hear from people who are addicted to these drugs”.
You went on to say “I’ve met people who’ve been addicted to some of these drugs for 20 or 30 years – wrecked their lives, wrecked their jobs, wrecked their families. It’s a silent addiction. We all know about illegal drugs, we all know about alcohol, we don’t know about
this group” and that “It’s an issue that’s fallen through the cracks” and “We are going to get a grip of this”
Well, having now attended the roundtable meeting on 15 September 2011 and received the Department of Health’s recent reply of 26 September 2011 on behalf of David Cameron, I would like to say that not only is it an issue that has been pushed through the cracks by the government and the Department of Health rather than fallen as you said, it is now being swept back under the carpet.
I sent an email to your office which Yemi Fagun acknowledged receipt of on 23 September 2011 expressing my dissatisfaction at the roundtable meeting and my concerns are as follows:
1. Exclusion of Professor Ashton and the APPGITA from the consultation process and involvement in future policy formulation.
2. When a question arose regarding funding the response indicated that there is no funding available. A policy without funding is not a policy at all.
3. Chris Heffer’s permission was required in order to speak and patient representatives and addiction workers were rarely picked and were sidelined. Any patient representatives’ suggestions that were made were not discussed, written down or translated into action points.
4. The discussions centred heavily on OTC medicines and illicit use. Iatrogenic tranquilliser addiction was barely addressed and nobody took responsibility for it.
5. There were no clear actions or recommendations regarding help for those suffering from involuntary tranquilliser addiction. Tranquillisers featured so low on the agenda that I do not see how any actions are possible to determine and points that I raised about
dedicated withdrawal services and the practice of enforced and rapid withdrawals were not even put on the flip chart for “action”.
6. It was hard not to conclude that user groups were invited so that it was possible to say that they were present and as a pretence of consultation.
I also take issue with further points and statements in the Department’s reply of 26 September 2011.
7. One of the NAC report’s authors was Professor Strang who made a false declaration of interests. He has a consultancy with Genus/Clonmel who make lorazepam, diazepam, lormetazepam, oxazepam, zopiclone and zolpidem, all tranquillisers and subjects of the report. Despite being notified no action or enquiry has followed.
8. The reply to me refers to the report’s suggestion that there is no convincing evidence of lasting anatomical or functional damage after long-term use. There is evidence in Professor Lader’s studies in 1980 reported to the Medical Research Council showing brain damage in 7/14 long term users and this was never followed up, then or now, despite promises to do so in the review. The onus is on the Department of Health to show the drugs are safe and there is no convincing evidence that they are.
Professor Ashton addresses long-term damage in her supplement to the Ashton manual and states that more research is necessary. At this point, may I also say I was disappointed to read in the minutes of your meeting with Jim Dobbin MP and Lord Sandwich on 6 September 2011 that you still did not know what Professor Ashton did or where she worked, after a year and a half of your leading the review.
9. The Department is not engaging widely but ignoring patients like me and ignoring experts like Professor Ashton and relying on people like Professor Strang who recently admitted regarding benzodiazepines of being ignorant on the subject.
10. Regarding the Department’s comments about the MHRA I could not disagree more. The MHRA acts as a conduit to allow the free flow of pharmaceutical trade with no regard for patient safety. Ativan destroyed my life and many other people’s as well. I have seen Dr June Raine’s responses to John Perrott’s enquiries and she has failed to supply any answers as to how the adverse effects of Ativan were clearly documented on other countries’ data sheets, yet there were no warnings on the UK data sheets. In the 1970’s the US and Australian data sheets listed convulsions, tremor, abdominal and muscle cramps, vomiting, sweating with additional warnings of anxiety, agitation, irritability, tension, insomnia plus a further list of ADRs showing Wyeth knew about these at the time. Also the UK regulatory authorities did not even start including some of these until 1988 and convulsions were not included until 1990.
I was put on Ativan when I was 11 and kept on it until the age of 33. I was constantly in withdrawal during the day between doses and was blamed at school and by parents for my behaviour, which in reality was caused by the side effects of Ativan; I tried not to take it on occasions and suffered terrible withdrawal effects and had to go back on it. Dr Raine cannot give an explanation as to why she will not investigate Wyeth withholding this information or why the regulatory authority took 18 years to start putting some of them on the data sheet.
For these reasons I do not accept the rose-tinted description of the MHRA in the Department’s reply.
11. The reply also states that there is clear guidance on the issue of prescription and usage of tranquillisers by GPs and psychiatrists. It’s the Department of Health’s responsibility to ensure these guidelines are followed and not just keep repeating them.
12. The last paragraph refers to support for people dependent on tranquillisers being the responsibility of local organisations. This seems a preamble for the Department to finally wash its hands of the whole affair. Coupled with the reference to “difficult decisions” and
it not being “appropriate for either ministers or the Department to intervene in local commissioning decisions”, the Department is approaching the point where it can declare the review complete, the consultations, or pretence of them, over and that the whole issue is now a local responsibility with no budget, This also means that the Department may continue a policy of inaction and fulfil an intention to support the addiction industry.
You have the unique opportunity to be the first Minister for Public Health to help people damaged by this health scandal which has lasted nearly half a century. I really hope the words you used on “Face the Facts” were not empty ones.