Alliance Policy Consultation

[Ken Stringer]

Hi There

First off to introduce myself, I'm Ken Stringer and I am current acting chief exec of The Alliance. In my time I have been a DAT coordinator, a treatment worker, a student, spent 8 years as an injecting drug user and before that was a maintenance fitter, cleaner, and butcher. If you have any comments or questions about the Alliance please get in touch with me - ken"at"m-alliance.org.uk (replace the "at" with @ to send.

I wanted to ask views of forum people about a new statement we're working on at The Alliance to describe our position on, amongst other things, recovery, treatment and the new mood in the drugs sector.

As an organisation we're receiving very mixed reports from service users. Some are describing a situation where they are being asked or even told to consider abstinence as their next goal in treatment. Others are describing refusal of detox or reduction. The one common factor between many of the cases is the service provider or commissioner taking an authoritarian stance - dictating rather than agreeing treatment options.

At the same time the national dialogue around drug treatment - both inside and outside the field - is becoming increasingly polarised, with both methadone and detoxification used as lazy proxies for the opposing sides. Many of these arguments however it seems are driven less by conscience or even opinion and more by opportunism. With significant budget reductions probably less than 12 months away,  providers and other interest groups are keen to carve out some unique territory in the governments spending plans  essentially by rubbishing whatever others are doing.

Caught in the middle of this are service users who depending on location, service provider and in some cases even key worker are receiving less than consistent service and in a number of cases treatment which is without doubt outside both the NICE guidelines and accepted good practice. At the same time we have the rhetoric of users choice, payment by results, and recovery itself.

Recovery by its nature as a treatment objective needs to be defined by each individual. This is accepted within the government's drug strategy and in DH/NTA/HO policy. Its a hard sell however.  It means taking any policy position as an organisation on specific issues is difficult. Its also clear that there are those - like The Recovery Group - who want to impose other meanings - talking about "worthwhile drug free lives".

After discussion earlier this year at board and team meetings, and in the light of the turbulence within the field I have been working from a fairly rigid advocacy driven perspective on this when I'm in discussion with government and other organisations. I have laid this position out below. I'd be very grateful for any comments on it from staff and board members. In particular I want to know if you think we should be taking a more robust position, or being more specific about the importance of key interventions. For example should we be pushing harder on the importance of maintenance? I'm also interested in having a discussion about whether we should be addressing service user issues with organisations other than drug treatment - so job centre plus, housing providers, mainstream NHS etc, given the contribution our client group should be expecting from them in order to achieve "recovery".

I would like to take this statement to some of the partnerships we work in to ask them to adopt it formally. I also think it would be useful to share it in a national publicity campaign (perhaps alongside a relaunch/refocussing of our website ). I would also like staff  and supportersd to be able to use it to inform dialogues they have with commissioners, fellow service users and others.

"The Alliance believes that the content and orientation of treatment provided for substance use is a matter for individual agreement between service users and their clinicians. We understand that service users have a right to access the full range of treatments that can help them improve their quality of life and manage their substance use. The Alliance believes that recovery is a matter of personal choice and that individuals have the right to define what their own recovery looks like, and to access the services that will enable them to achieve this.

"The Alliance recognises that there are a number of barriers to recovery including stigma, discrimination, unequal access to services, restricted treatment options and - despite the improvement gained over the past ten years - inadequate or incompetent commissioning, treatment services operating in contravention of national guidelines, and poorly developed mechanisms for financial gatekeeping which overtly and discretely exclude people from services.

"The Alliance is concerned to challenge interventions and approaches to substance use which further stigmatise the people who use drug treatment services and create hierarchies based on individuals use of substances. In a time of austerity in healthcare provision it is critically important that we do not allow an individuals recovery status to influence their access to healthcare or enable discrimination in the provision of services.

"The Alliance uses its organisational influence and orients its services and projects to promote the rights of individuals to access appropriate treatment and support
challenging any development in treatment services, commissioning or government policy which seeks to deny this right. We also look to increase public awareness of the mutiplicity of beneficial interventions that people experiencing problems with substance use may find helpful in order that we can avoid black and white or partyisan arguments and to promote evidence based practice that recognises the human rights of service users, their families and society."

I'm really interested in your views on this - and indeed on the position we should be taking in the current climate. I would be most pleased if you'd respond via this thread as I'd like to keep responses together, but if you'd like to email me, that's fine too.

Thanks

Ken

[simon]

Hi Ken,
Just exactly what site members want. I'll have a think and post later after i've been to see my butcher. I think you'll get some robust replies.

[Ken Stringer]

Thanks Simon - looking forward to them.

K

[sapphire]

Hi Ken,

Firstly nice to see someone detailing what it is the Alliance are trying to do with regard to current NTA etc guidelines.

I haven't had chance to read it all yet but regardless I do think that you do need to be much more robust in terms of advising people how important maintenance is.

I, and countless others, are being pressured into this "try 2ml a fortnight, you won't feel it" type reduction coertions from keyworkers and DSP's.

With the advent of the "recovery" movement in the UK and the subsequent impact this is having on DSP's equating recovery with abstinence I feel it is VERY important that the Alliance speak out on behalf of those on OST scripts that do not want a detox/to reduce.

With regard to your comments from people on scripts saying "my keyworker won't let me reduce etc", I often find that if you look into these cases more that you find that the reason the keyworker has advised them to stay on a script is that they are either still using or only just stable.
Often it is the case that people are ill-informed about both methadone and the prescribing guidelines, if service users were more well informed about this I'm sure they would feel more well equipped to insist that they want to reduce (if that is what they want).

So, until I have read your post properly I would say, that for now, I think absolutly that you need to be far Far more robust in your backing of maintenace prescribing as a valid treatment option. Why should people who cannot or do not want to achieve abstinence be stuck in a cycle of up/down on dosages just because the particular doctor at their DSP does not see maintenance as vaild.

There are tons of abstinence based recovery advocate groups and web sites out there, no one seems to want to take the corner of the maintained service user.

I also think that a lot of key workers assume that what all methadone patients want is abstinence. Yes, people may say thewy don't want to be taking methadone forever, just as I would like not to have to take my epilepsy meds for ever, but I think keyworkers misinterpret this as that we all want abstinence.

[Jimmy]

Hi Ken

This sounds promising (breathes long, hopeful sigh of relief) and, like Simon implies, is something that forum users will appreciate.

Firstly, I second all  the points suggested by Saphire; medically assisted recovery has not been accepted as a legitimate form of recovery in the UK and, I suspect, thousands of stable maintenance clients are being pressured towards, if not into, unwanted reductions. In my experience too, key  workers have always been keen to support reductions, unless the client is obviously unstable. This 'refusal to contemplate a reduction' line is, I would suggest, little more than a myth distributed by those set to make money from a system based purely on abstinence.

I would suggest that a) a lot more effort must go into presenting 'MAR' as a legitimate form of recovery; an option separate from abstinence, not a stop-gap prior to abstinence or something inferior to abstinence, and b) more attention should be directed at eradicating the social and institutional stigma that surrounds methadone and other similar medications, including injectable treatment.

Yesterday I had an appointment with the local DSP's newly appointed doctor. Although she claimed she would not pressure me into reducing, almost in the same breath, she suggested that I should nonetheless consider it - maybe set myself 'reduction goals'. I have made huge progress in MAR and would like it to be acknowledged. After spending near on 15 years trying to get drug free, long-term (possibly for life) treatment with subutex has been a Godsend. The constant pressure to reduce is becoming really detrimental - like a large, black cloud looming overhead, subtracting from the many positive aspects of my life. I think that any statement should indicate the psychological damage that can be caused by unwanted pressure to reduce; the impact it has on self-esteem; how it detracts from a sense of achievement. Living in constant dread is no fun and utterly deflating.

In sum, what I would like from my DSP is for my recovery to be acknowledged as legitimate, to have my reasons for not wanting a reduction (15 years of failed attempts) accepted, and to be able to continue my relatively happy, peaceful existence without pressure to do something that I know will not be in my best interests.

That's it for now, although there may be more to come.

Regards
Jimmy

[derek d j]

Good to hear from you, Ken. I can only echo the opinions above.

As I recall, you were present when the Cambridge 'injectables' received their 2nd opinions and will recall the assurances given by representatives of the provider regarding the return of their original prescriptions. This has not happened in numerous cases including my own. I no longer receive the prescription on which I prospered and met every single one of the recovery criteria. My repeated complaints of difficulties and adverse reactions to the change may as well be directed at a brick wall. Unless, as other users here suspect, we're being punished for having the temerity to challenge the provider's plans, I'd like to know for what reason my life has been made unnecessarily difficult.

And my case appears trivial in comparison to some of what I see reported on this site and elsewhere. I would strongly exhort The Alliance to demand some form of accountability and the introduction of national standards for both the qualification of treatment personnel and the implementation of clinical decisions. Unless maverick initiatives such as were witnessed here are outlawed, treatment will remain a postcode lottery and the objective best interests of users in treatment subjected to moralist fantasies and the cynical acquisition of government cash . Let's have a strict paper definition of recovery and good practice and it made obligatory for all involved to follow the same rules.

[froude]

Hi Ken,


Froude here,Im glad to here that you will be pushing harder on the maintenence side of things,too many Service Providers arent even acknowledgeing that maintenence is an important part in so many of our lives,making it easier for work,health,relationships but most of all to  the client.Over the past  months i know that me and many others have felt that we have been pushed into making decisions or decisions being pushed to us with no substance about reducements that we are not entirely happy with ,but say Yes to dropping a little here and a little there as we feel that if we do not we will be labelled as troublesome and put on a reducement programme.In me and my partners case we would not be where we are today if it was'nt for  maintenence ,we are both scripted methadone and we are both now being told/asked about reduction.In my case my new Keyworker,2 appointments later decided to reduce me,had'nt even bothered to get to know me,it just seems that reducement is top of the Agenda for D.S.P's across the Country.I also agree with what Saphire,Derek and Jimmy are saying ,especially feeling pressured into something that you know you are going to fail,as you have tried it before and it has not worked.I am 41 years old ,until i was 34 spent 90% of my time in prison and when released spent that time out of my head on Heroin or Crack,since being on our last methadone script(since 2004) both myself and my partner have moved into housing for the first time,had a little girl(3yrs now)and got our lives stable,undergone Hep C treatment(which was sucessful) and managed to lead a decent,healthy life,without the methadone maintenence we would, like many others probably be dead or in Prison doing a very long sentence,thankyou Ken,All the best ,Froude

[simon]

Hi Ken,
Drug treatment needs to be set aside from political interference it's odd we have very robust NICE and DOH guidelines but drug service providers are employing people who haven't even heard of them. Patients views are being swept aside and they are being treated worse than they were ten years ago. It is most odd to offer someone a way out of Heroin addiction but make it just a temporary one, why bother?
Patients are seen as a hindrance and for these 'charities' to make a profit they have to get rid of patients, get rid of staff and employ people with little experience.
I'd like to see patients empowered and let them have a greater lead and not just with a tick for service-user involvement and a £10 voucher. I'd like to see less 'charity' involvement and more NHS involvement i'd like to see more stability and stop all these re-tendering excercises - patients never say they are better afterwards.
Just two years after the 2007 NICE guidelines which very much backed MMT we had a change from the people with the money to say this 'Recovery' word and I can't stand what they think recovery means, they daren't even say abstinance.
I'm very clear in my mind that the best way to abstinance is long term maintenance and there is no quick fix for the majority of people. Detox is great for a minority of people and of course we need to have this available.
We do need set standards for people providing drug services such as the RCGP part 2 course but also we have commissioners who couldn't be trusted to buy a bag of crisps, so they need a shake up too.

[usandthem]

Thank you Ken. A great and very re-assuring post. I have dropped you an email.  usandthem John

[Ken Stringer]

I wanted to thank those who've responded for some interesting stuff - I'll be coming back on this over the next couple of days. prompted by what you've said in part we're looking  to get a quick snapshot of people's current experience of drug treatment - particularly in terms of substitute prescribing. We want to use this information to drive a bigger piece of research which we hope will help us campaign more effectively around service users rights in treatment. We would very much appreciate it if people could take some time (there are only a very few questions) and help us by filling this in.

http://www.surveymonkey.com/s/ZH8QTQM

Thanks

Ken

[sapphire]

Just wanted to add, in your first post you talk of people saying "My key won't let me reduce/keeps me on SUCH a high dose".

In my experience there is nearly always a reason why keys don't want people to reduce when the SU wants to and that is that they are either still using, are drinking, or are only just got stable on a script. I have never known anyone who genuinely wanted to reduce (and kept pestering their key) that wasn't "allowed" to.
Why they (keys) cannot apply this logic to people on stable maintenance scripts, who knows. 

[Jimmy]

Ken

I would like to see a situation where if a maintained patient wishes to stay maintained, that wish is respected as legit. - end of story.

My new DSP doctor, fair enough, was pleasant (sort of), appeared to listen to what I had to say and assured me that enforced reduction was not her style. Nonetheless, instead of accepting my position, she spent the next hour questioning it - trying to convince me how beneficial a medication free existence would be.

I have familiarized myself with clinical guidelines and other evidence, and have over a decade of reasons why reduction/detox, for me, does not and will not work. However, I can imagine that someone with less knowledge about SU rights, etc, would have left the session having agreed to a reduction plan and plagued with a whole heap of new anxieties. Their tactic is to wear us down Ken; what they would probably define as 'encouragement' is actually pressure/coercion. Although I shouldn't allow it to, the days and weeks before each appointment fill me with dread. It is completely detrimental and my own anxiety levels are beginning, once again, to creep up. It's making me so bloody angry!

I know now that this doctor and my keyworker, despite what I tell them, are going to be constantly on my case, 'encouraging' me to reduce. Although I will fight back, to be honest, I have far better things to be putting my energy into - life, for example.

My feeling is, some doctors, due to their knowledge of clinical guidelines, realize that blatant coercion could be reported as bad practice. Instead they try other tactics but with the same aim - to convince stable, productive people in MAR that they would, ultimately, be far better off minus their medication, despite evidence to suggest that most would not.

We need it as standard practice, for DSP workers (keys and doctors) to ACCEPT the client's choice to stay on medication long term or for life. Then, only if the client wishes it, should the matter of reduction be broached again. It would be great if any new consensus statement could include words to this effect.

Cheers
Jimmy

[Jimmy]

Oh yeah, now might be a good time for all effected Alliance members who don't usually post (about 1220 people I believe) to make a quick contribution. Even if it's the only post you ever make (which is totally fair enough by the way), it could well be worth it.

Regards
Jimmy

[simon]

Jimmy,
I've also seen patients who have been coerced by drug counsellors or even carried along by someone elses enthusiasm. I recall a couple of patients who stopped seeing drug counsellors because of this. I can think of a couple of examples where i've received information from counsellors saying a patient was really keen to reduce, when the patients came to see me they said they agreed to shut them up and didn't want to reduce at all, clearly something is lacking.

[sapphire]

Jimmy, you make some really vaild points. Please take note Ken!!