Dear Ms Milton
May I begin my letter to you by thanking you for inviting me to attend the Round Table Meeting of 15th September 2011 as a service user along with the Service Manager of MIC. I listened intently to the various questions posed and the answers given by the attendees. As a service user and iatrogenic addict of 42 years, I had hoped to have more of a say in the points raised. I feel I was not listened to, or given a fair opportunity to have a say by some attendee’s present. I wish to be very clear on this, I am however raising the point that I felt it was my prom dance, and I was not asked to dance. The experts talked about multiple issues covering over the counter medicines and illicit drug use, an area on the whole that just does not apply to iatrogenic addiction. Hence the real meat on the bone, which for myself is benzodiazepines, fell way way short of getting on the main menu.
I have never been to a meeting like this at a Government Department before and I could see that those present in the main, would do this type of discussion daily, on an array of subjects relative to their fields of expertise and as such are well versed in the terminology used, and the pace at which such a meeting is run. So I hope you will appreciate how I am also well versed in the field of iatrogenic addiction from an actual service user’s view point. That said I wanted to write to you nonetheless and kindly ask if you would read through my letter and consider my points exclusively from a service user and iatrogenic addicts point of view. I offer up no resistance to proper debate, the opposite would be true, I quite literally embrace it which leads me onto my points Ms Milton.
(1) The discussions centred heavily on “over the counter medicines” and “illicit use of such.” Equal time was not given to benzodiazepines with over the counter medicines taking precedence over the very complex and unique issues relating to iatrogenic benzodiazepine addiction.
(2) An attendee was vocal very early on in the meeting about “we shouldn’t focus just on benzodiazepines” and went on to cite that the problem is more “misuse of benzodiazepines and over the counter medicines,“ again the agenda was acutely steered in a direction toward misuse of over the counter medicines. Based on this fact, the agenda was disproportionately in favour of misuse of medicines. The equally vital subject of iatrogenic addiction was just not discussed in any depth to qualify as a debated subject. How is the department to address this when attendees wishing to discuss iatrogenic addiction were ignored more often than not by the Chair, in favour of other attendees talking about better labelling of over the counter medicines.
(3) After great difficulty in getting to put a question, I raised the proposal of “commissioning of dedicated benzodiazepine services being put in place whereby a GP could signpost an iatrogenic addict to that dedicated service, and this would allow the GP to continue to prescribe a benzodiazepine throughout that patients withdrawal, without fear of being jumped on as they, (GP’s) would be working closely with a dedicated service and prescribing under a joint expertise for an individual patient in each case“. This was not put on the flip chart as an action, and bearing in mind you said something like, “not everything costs money” in answer to a point made by an attendee, can I ask if this suggestion is not considered a viable one by the department.
(4) There was an admission by an attendee, and I quote, that “we are responsible for iatrogenic addiction and it’s hard to look at a patient and say it’s my fault, but what do you say to them“, (Patients).The attendee was interrupted at this point by another attendee continuing to raise misuse issues of over the counter medicines. The agenda was not kept to in this regard, and you had said “Chris Heffer is a good referee” May I again ask for clarity on why benzodiazepines featured so very low on the agenda and why there seemed to be little room for iatrogenic addiction discussion.
(5) The issue of “forced withdrawal and rapid reduction” from benzodiazepines where also raised. This was not put on the flip chart to be dealt with under any actions drawn from the meeting. In addition there was no recognition of the debilitating affects of withdrawal and the symptoms, which leave untold damage and life’s in ruins. Yet it remains a fundamental ingredient to any iatrogenic addiction success or fail rate.
Chris Heffer suggested another meeting in 6 months time, this is too long in my view to draw up an agreed set of action points. I feel with your own experience working in the NHS you are strongly placed to use the clear empathy you expressed about the benzodiazepine issues, which you raised on the BBC Face the Facts programme, to take forward and help put benzodiazepines firmly on the table. I acknowledge you are the first Minister to say you will “get a grip” of this situation, and I thank you unreservedly for that Ms Milton.
My only caveat to this is your view that not everything has to cost money. Dedicated benzodiazepine services and support centres will involve funding. Again I ask is this option to be ruled out completely.
I further feel that the Round Table meeting was devoid of any firm actions for future help of iatrogenic addiction and would be grateful for your views on a way forward with real time action for the estimated 1.5 million suffering each and every day. The real point is that those suffering would tread water more easily if they knew real action and help is blue lighting it’s way to them.
Again, may I take this opportunity of thanking you for inviting me to attend the meeting.
Yours Sincerely
Josh Jarrett