Dear Anne Milton,
I initially wrote to the Department of Health in February 2010 explaining how I have been damaged by 35 years of being mis-prescribed the tranquilliser Ativan/lorazepam. I became a supporter and researcher for the APPGITA as a result of the Department of Health’s and the MHRA’s lack of action and effective policy.
My correspondence included the following concerns:
1. Exclusion of involuntary tranquilliser addicts from appropriate withdrawal treatment by the Department of Health.
2. Failure to treat or recognise the tranquilliser post-withdrawal syndrome by the Department of Health.
3. Failure to provide research into long-term or permanent damage caused by tranquillisers including following up Professor Lader’s studies in 1980 showing 7/14 long-term users had brain damage promised to be addressed in the review.
4. Fatalities including suicide, seizures, respiratory depression etc caused by tranquillisers.
5. Non-recognition of the illness of involuntary tranquilliser addiction or post-withdrawal syndrome in processing benefit claims. (DWP)
6. Failure to provide back to work support or rehabilitation for tranquilliser addicts and ex-addicts, particularly in the arrangements introduced under the Welfare Reform Bill (DWP).
7. Failure to collect relevant statistics on involuntary tranquilliser addiction.
8. Failure to address premature death caused by benzodiazepine induced ill-health – use of sleeping pills and minor tranquillisers increases the risk of premature death by more than a third according to a study published in the September 2010 issue of the Canadian Journal of Psychiatry.
9. Failure to address benzodiazepine teratogenicity or “benzo babies”. Birth abnormalities caused by exposure to benzodiazepines in utero.
10. Involuntary tranquilliser addiction is still being treated by the Department as substance misuse. I sent a paper to you a month ago and written by Professor Ashton and myself explaining why it is not. This follows a long standing pattern in which the Department quotes the guidelines, does not take any action to enforce them and then blames the doctors who in turn blame the patients.
11. The Department referred me to the MHRA for answers regarding Ativan. Dr Raine of the MHRA has failed to explain why in other countries Ativan data sheets included warnings of convulsions, tremor, abdominal and muscle cramps, vomiting, sweating with additional warnings of anxiety, agitation, irritability, tension, insomnia and others while there were no warnings in the UK at the same time from 1972 when the licence application was submitted, showing the manufacturer Wyeth withheld these. Also, Dr Raine has failed to answer why warnings only started being included in the UK data sheets from 1988 onwards. Therefore, these questions revert back to the Department of Health.
Apart from point 11, to which I would like a response as well, I was informed that answers to my points would be provided in the review, led by you for a year and a half now, but they have not been.
12. I am deeply concerned that the Department is continuing a policy of inaction regarding addiction to tranquillisers and despite assurances from you that views of patients will be given careful consideration, the facts point to the contrary leading to these further concerns.
13. Professor Ashton and the APPGITA have been excluded from the consultation process and policy formulation.
14. In reality, service users and providers have also been excluded because at the recent roundtable meeting attendees reported that:
a) Your policy advisor, Chris Heffer, who chaired the meeting, rarely picked patient representatives and service providers who were sidelined and felt their presence was only required as a pretence of consultation. Their comments were not discussed or put onto the flip chart of action points.
b) Prescribed tranquilliser addiction was barely discussed and the focus was on misuse and OTC medicines.
d) There were no actions or recommendations or a budget for sufferers of iatrogenic tranquilliser addiction.
I have also read the Department of Health’s response to Josh Jarrett giving further cause for concern regarding the following:
15. The prescribing guidance mentioned in the letter to Josh Jarretthas been ignored by doctors so whose responsibility is it to enforce guidelines are followed if not the Department of Health’s?
16. The reports found no evidence of long-term damage because there has been no research.
17. The Department is not engaging widely with interested parties as promised and now claimed for reasons already covered in this letter.
18. The Department claims involuntary tranquilliser addiction is the responsibility of local organisations but historically this has been the Department’s responsibility who supported the national withdrawal charity Tranx UK in the 1980’s.
19. The Department asserts in the letter that local bodies are best placed to assess needs for services but the opposite is true. There are no local needs as the tablets are the same nationally and the treatment is the same as well.
Also, service provision is negligible as the Department are aware e.g. there is only one service in London in the form of Camden MIND who are only able to provide help for Camden residents.
20. The letter to Josh Jarrett further states that “It is important to note that the long period of tapering dose required to support recovery from benzodiazepine dependency means that residential service provision is often not appropriate”.
Why then are abrupt 8-12 week withdrawal schedules recommended in the NAC report if the Department knows long periods of time are required for withdrawal and recovery?
Also, residential services are medically appropriate in difficult cases.
21. It is difficult not to conclude that the Department of Health has been playing around with this whole issue, not just with me, but with the APPGITA as well, involving countless bureaucratic obstacles. Examples of these are:
a) Jim Dobbin’s invitation to your launch of the reports supposedly went missing in the internal post.
b) At the meeting on 6 September 2011 with you the question regarding the number of patients left on tranquillisers long term arose yet again. On this occasion John McCracken suggested that the European Monitoring Centre for Drugs and Drug Addiction in Lisbon might have data.The data EMCDDA holds on this, if any, would only be concerning illicit benzodiazepine use by drug addicts who present for drug treatment and illicit drugs addicts who are being legally prescribed benzodiazepines alongside legally prescribed methadone? There is no routine data published on prescription dependency and that, further, John McCracken must know perfectly well that whatever data the EMCDDA gets for the UK comes from his own Department and so why would he direct APPGITA towards the EMCDDA in Lisbon apart from messing us around?
c) Lord Sandwich was given 4 wrong telephone numbers when he requested access to support services the Department maintain exist.
22. Regarding the new Health Bill, what provision will be made for involuntary tranquilliser addiction and whose responsibility will it be?
Yours sincerely,
John Perrott – Researcher for APPGITA