Involuntary/Coerced/Forced Reduction

[Ken Stringer]

Hi There

I'm trying to find out more about cases of involuntary reduction or changes to scripts. When I talk to providers they are telling me that they would not change someone's prescription without their consent. But users are telling me that this is happening and the evidence is building through the survey that this is the case.

What I want to know is *how* it happens.

Do key workers make direct threats that if you don't accept (whatever change) then there will be consequences?

Do they talk about it just being policy (government or otherwise) and that it simply *will* happen?

Do they apply pressure to convince people to do it?

Is this about the power imbalance between users and workers?

Any information you have about this would be really useful - I guess I am trying to work out as well if more advocacy supp[ort would help here - and whetehr we should be training more people to act as volunteer advocates. Any views you have on this would also be useful.

Thanks

Ken

[usandthem]

Thanks again Ken. I can only speak on my experience. I have been constantly badgered and I keep saying 'No - Im not ready' Key Workers reply. "Well you can't stay on it forever". I then keep saying I am not ready and she actually started arguing with me saying it is all in the mind and a reduction has never hurt anyone. I also am trying so hard to stick by my guns but now the session is always cold and there is no relationship forged here. I fear every appointment and they keep offering me referrals for training and jobs and I have been signed off for deep depression. It feels more like probation. You feel like you are being constantly cornered. They want me to give in and reduce for them. I want out of this service fast. Very poor and no provision of care. It has got worse over last 6 - 7 months. John

[sapphire]

Ken,

In my experience of 3 different DSP's in different parts of the country it has worked like this.

The second that a Service User starts giving urine samples free from illegal or unprescribed meds the pressure is on to reduce.
The following is the same conversation I have with whatever keyworker I have (they all seem to read from the same script!)

It usually starts with the keyworker saying, "Well Sapphire, now you are giving clean urine samples, what are we going to do about your script?".

I say "Nothing, I am happy with the way it is, my script is what is stopping me using and is helping me to lead a productive life, every time I have tried reductions/detox's it has led to disaster. I already have HepC from my last relapse, which was due to being reduced when I didn't want to, I don't want any more health problems that could have been avoided".

Keyworker - "Well Sapphire, you don't want to be on methadone for the rest of your life do you? I think we should look at reducing you 2ml a fortnight, you won't feel it honestly".

Sapphire - "How do you know I won't feel it, you have never taken methadone or been addicted to drugs, plus it doesn't really matter whether I would "feel it" or not, the dose I am on is helping me rebuild my life, stopping me using and I have no desire at this moment to change it, I have all my "recovery capital", so what is the problem?".

Keyworker - "Well Sapphire, you're being very defensive about it, are you sure that's not a bit of denial creeping in as to how much you depend on methadone?".

Sapphire - "Damn right I depend on it, it stops me using, as I just told you."

Keyworker - "Well Sapphire, the doctor wants you to have another ECG, the last one indicated that methadone was definately harming your heart, and plus you can't stay on it forever"

Sapphire - "Hang on a sec, there is not even any evidence that methadone causes prolongation of the QT interval, it is thought it might, but that is a bit different from itdefinately harming me isn't it? Plus my QT interval was only 450ms, which my cardiologist said was fine for a woman and is also well within the NTA Orange Book guidelines. Or do you know something about hearts and methadone that my cardiologist and the NTA does not?"

Keyworker - "Well Sapphire, you seem to know your stuff, perhaps you'd like to talk to the doctor about this and explain to him why you disagree with him and his medical degree and think you know more about it."

Sapphire - "I don't want to see the doctor, I don't want to reduce, I have no problem with my heart, this has been proven by the 10 ECG's you've made me have over the last 12 months, and the 1 24 hr and 1 48 hour monitor my cardiologist did to prove to you there is nothing wrong with my heart. Perhaps I do know more about this issue than you, I have done extensive research on it, you couldn't even tell me what the NTA guidelines are. But I can't possibly know something you don't can I, after all I am a lying junkie."

Keyworker - "Well Sapphire, I'll see you in a month and we'll look at a reduction plan then"

At which pont Sapphire loses plot and goes medieval on the CDT's ass.

DSP's in general just do not seem comfortable or happy to continue maintenance prescribing. The doctor at my DSP said last time I saw him that "I could get off it, if I put my mind to it".

Well I don't want to reduce or get off it, it is stopping me using, how many times do I have to try to explain that, only for keyworker to say "Well, you don't want to be on it forever do you?".

I don't know if I do or do not want to be on it forever, I do know that for the short to middle term future I have no plans that include reducing/detoxing and can they not respect my wishes for fucks sake?

The problem is that too many keyworkers and DSP doctors still see addiction as some kind of moral failing and methadone as a short term measure,until this XA/12 step/short term measure mentality is removed from DSP staff, we will get nowhere fast.

DSP's are also using things like this QT Prolongation issue to put the fear of god into Service Users who are not up to date on the ins and outs of long QT syndrome, and getting them to reduce when they don't want to be, telling them "it's hurting your heart", but upon examination their QT interval is actually perfectly fine and well within the NTA guidelines on the subject.

It has got to the stage for me now that I feel I will have to take drugs, just so they stop mithering me to reduce. I already did reduce from 220ml/day to 26ml/day and relapsed, nothing in my life has changed so why do they think I can do it now when I couldn't then?

This is a huge bug bear of mine and I could go on about it all day, but I'm sure you're all asleep by now!!
Oh, and I would second usandthem's comments about it feeling more like a probation service than the MEDICAL TREATMENT it is supposed to be.

How can we as Service Users' have a therapeutic relationship with keyworkers who can and do introduce punitive measures regarding our medication, medication that we need to get through the day.
Far too many keyworkers play little power trip games and introduce punitive measures like stopping scripts for no real reason (one example, being 10 mins late for an appt. when never late/missed appt. before).

Can you tell I'm annoyed about this?? <sapphire disappears in poof of smoke>

[OP8S]

Very precise sapph, it sounds exactly like the more recent run-ins that I've had with my key / CDT recentley. Nurse has told me that she'd be happier when my QT interval is down to 440, though doesn't seem the slightest bit concerned that my resting pulse is 100/min, everybody's different she tells me (?) surely that applies to your QT interval to a degree. They've never used the formula that a cardiologist would use which takes into the account body mass & other variables but want to continue to monitor my borderline QT which they're welcome to do so but after several ecg's where the correct machine hasn't been available & other postponed appointments it does become to feel like they're trying to wear you out. Especially if you don't go along with these reductions that are on the political agenda  (so keys say )&  stand your ground, not just to be awkward but because you know it's important to your well-being. If you want to be maintained then you need to take the risk of standing up to your provider it seems now.
We've only got a couple of substitute meds available in this country compared to others. To lose MMT a widely accepted method of treatment, is just forcing people back into the illicit market again.
Also how many people will be put of entering treatment if they know that they're going to be constantly pressured to reduce their medication after handing in a few clean u/s. It's hard enough taking the first step anyway.
I'm sure many users have heard the exact same story over the last year. I've heard about Gov reductions from my key * likely * , and also that I hand in clean tests. I wouldn't be if it wasn't for my script, I can gaurantee you that.
The Gov reductions story has been told to me by others who have seen different keys, must be scripted ( excuse the pun ). I tell them it's bollocks & to sort their dose out with the GP & tell him that they want maintenance if they do. Some do & those are the ones that are no longer getting continually hussled by keys, others prefer to moan about it & do nothing , next thing they've been reduced & are still moaning about it. There's not many areas of medical treatment where the patient has to be so pro-active about getting the support they need & it only seems like it will get worse.

[froude]

I think Saph has hit the nail on the head,basically happening in my area.Came out of Prison in 2004 with the promise of methadone maintenence,had a brilliant key,then she left(seems over the years the best keys get poached)they put me onto the Mental Health Team and from then on have been having problems like one week my benzo script was halfed by accident,so instead of 40mil of diazepam was scripted for 20mil for week(had bad time)then they didnt give me appointment for about 3 months,Keys not turning up for appointments and scripts being sent by post day before script is due,script sometimes not at chemist ,on and off with keyworkers,finally got keyworker who was social worker(abused in care system when young,so have problems with any any social workers),had him for 2 weeks and then asked me to reduce on methadone(didnt get to know me in 2 weeks)rang my D.S.P and now have appointment tomorrow with head honcho.I do not want to reduce on methadone feel like i was hoodwinked into it ,at the moment im doing well and so is my partner Jo on Methadone,life i better,health is better.Would be helpful if Keyworkers actually knew what they are doing ,seems to me that everything is abstinence with my D.S.P.Thankyou Ken ,All the best Froude

[Jimmy]

Since CRI replaced the old NHS-run CDAC earlier this year my keyworker of 7-8 years (who is an ex-user and has always given me freedom to choose) has been gently preparing me for the possibility of reductions in the near future. I have always maintained that when it happens I'll challenge it with whatever means I have. My key is supportive; he knows how much a maintenance script has helped me. My doctor of 7-8 years, also supportive, left in disgust 2 weeks after CRI took office.

I attended several service-user meetings prior to CRI winning the contract where I was assured that stable maintenance clients would be transferred to GPs and their script continued with only 'minimal contact' with the DSP. Turns out CRI were telling porkies and all SUs are now being 'encouraged' to reduce - those on benzo scripts forcibly so.

My first meeting with the new doctor a fortnight ago was an hour spent defending my right stay in MAR. Although the doc will not 'force me to do anything', she will however be expecting me to prepare myself for reduction, if only by very small amounts. It is clear that reductions are on the cards. Although I escaped with my script this time, pressure to reduce will surely be cranked up in the near future. Thing is, from past experience with subutex, I could half my script and still feel completely comfortable - and probably keep 'them' happy for the next year or so. But it's the principle that matters; why should I have to reduce at all, and if I have no intention of going all the way, what is the point. My treatment is evidence-based, completely legitimate, and suits me down to the ground.

Fortunately, I won't be seeing the doctor again for 3-4 months but will have 4-5 weekly key appointments in between. Interestingly, DrugScope, in their reply to my complaint, insisted that all DSPs exist under the 'NHS constitution' where a patients right to access their preferred treatment would be guaranteed. I'll try this one during my next appointment.

So yes, coerced under the auspice of 'encouraged' reduction has become a reality; users unsure of their rights are particularly susceptible and many who I've spoken with have returned to the street rather than face the hassle. Those who defend their right to maintenance find themselves labelled as stubborn, obstinate or refusing to help themselves. A lot of the professional literature sees the value of MAR; America, the prohibition capital, has taken steps to promote and reduce the stigma attached to it. When is the UK going to follow suit?

Regards to all
Jimmy

[Ken Stringer]

Sapphire - and everyone else, this is really useful.

Our survey is currently suggesting that 60% or so of those in treatment currently believe that their views are taken seriously or very seriously by their key worker/doctor. The same percentage however believe they have been pressured to change their prescription. Does this mean that people are feeling challenged but no change is taking place because their views are being listened to?

A number of professionals tell me that people in long term maintenance need to be challenged about this long term maintenance and given the choice of reduction (amazing how often people now confuse challenges and choice - maybe its the fact that they both begin with "ch"?)

As the Alliance should we be saying that no one on long term maintenance should ever be asked about reduction? If they should be asked how can we safeguard their right (and yes I believe it is under the NHS constitution) to remain in the treatment they feel helps them?

One thing which has been suggested is that we should create a drug treatment service users charter of rights and ask the big providers to sign up to it?What do you think?

[usandthem]

Yes Ken I think we need a safegaurd for users choice. This CRI recovery service is not a service its an an outrage. It is probation painted up as something else. The service staff are predatory and not friendly to anyone wanting to stay in maintenance. After all this is about life and death. It seems all of the current advocates for the GMC i.e NHS DIRECT, PCT, NTA, NICE, after recieving my concerned seem to want to help - but then I never hear from them again. I think this is rooted in government agenda being stubborn. So why don't the government bring in stringent policies to reduce everyone instead of painting it up to be a 'recovery service' that wants to give so much help to the user? There is so much bias against maintenance within CRI and even mentioning the word you alienate yourself from the Service. Terrible service and puritanical and I will never go back there and neither will any other of my former addict friends will never put ourselves in for this. This is not the care I was signed up for. I would have stayed on gear otherwise. I am seriously thinking of cutting down using street gear - less hassle and you are in control of your own future instead of being bullied. I hope this is soon discovered as a major fail and is consigned to the dustbin of medical/clinical errors.

[NeilHunt]

My two penn'orth...

The bottom line: OST is one of our best evidenced treatments. Anyone who can benefit from it and wants it should be able to have it as long as required.

But...

1. It's reasonable for providers to evaluate whether it is working well, still what the person wants, whether anything else is needed and so on, periodically. In fact this is pretty much a requirement of good care planning and not doing this is an abdication of their duty of care. One standard that might be good to clarify would be the frequency with which this happens. In particular, too often could be deemed harassment.

2. Care planning is fundamentally a client/patient centred activity and must primarily be about what the person whose care plan it is needs. If someone feels coerced to change, something has gone wrong. I'd like to see this stated in black and white.

3. There is a real resource issue that we can't ignore. The NHS doesn't give infinite numbers of hip replacements, fertility treatments, acute admissions for depression or anything else. All things being equal there is a quantity/quality trade off and beyond a certain point the quality will be so poor that safety and effectiveness are compromised. I'd like to see a clear Alliance statement about how we would best like this dilemma resolved where resources are inadequate.

At the moment, I think some people are being pressured off scripts to make way for new referrals and to address some of the poor quality treatment that can arise where keyworkers have excessive case loads. Arguably, there is a treatment contract once someone is receiving OST and it’s a breach of that contract to vary it once it starts. I'm sure this is why a lot of people are pissed off. But would we prefer that new treatment episodes are not started if resources are insufficient? This the puts people outside of treatment at risk of course! Although in a sense this is "their problem" i.e. providers/commissioners, I think that not addressing this dilemma head on could make anything from the Alliance seem to lack credibility, because we would be ignoring a basic reality of the environment  in which these decisions and choices are made.

Personally, I feel more inclined towards a clearer defence of people's need for long term maintenance where that clearly exists and a clearer statement of the minimum quality standards for treatment including good access to relevant psychosocial support and (re)integration services (as per best evidence) and reasonable limits on workers' caseloads (necessary for client/patient safety and their well-being too). Only then will levels of under-resourcing become plainly visible. There's no easy answer, but I think it might be easier to campaign for more, better treatment if waiting lists start to grow than if we accept a gradual dilution of quality and dubious practices that cause people to feel coerced out of effective treatment.

4. We may need to recognize the limits to the evidence-base. Yes, the evidence generally supports OST, but it is not completely clear (in my reading of it anyway) on key issues such as its effectiveness when people are still drinking at high levels, injecting/using on top extensively, attending infrequently and so on. Of course, people should start by asking questions such as whether the dose is right etc, but it's not always just about dose and there are sometimes genuine, reasonable grounds to question whether treatment is safe, whether the person is benefiting and whether the treatment is actually effective in any given case. I honestly don’t think these questions can easily be answered with reference to the evidence, because so often they hinge upon particular aspects of someone’s situation. Ultimately it is sometimes a clinical judgment, but this is where there is also scope for clinicians to manage people out if they are trying to hit performance targets. I don’t know the answer to this whatsoever, but I think it is a problem we should acknowledge. 

That’s more than enough from me I think!

Best
Neil

[usandthem]

Yes I agree with every word of Neils clear statement and thank you for that piece, that was a very informative read. I think there does need to be a balance between those seeking to come off maintenance and those needing to be left on maintenance. If it is about cost provision then why did they start to give people that choice, in the first place, to enter maintenance. Some people take longer to sort their lives out whilst on treatment. Some may need their maintenance to last a longer time than others; depending on how the methadone has effected stability in their lives - or whether MMT has had a better effect on them than the next user. Some thrive on a quick recovery and are usually more settled in their personal lives - or more confident and outgoing. I have been a stable illicit drug free user receiving maintenance and methadone has been a cure all for me. Like many others in treatment I do have underlying mental issues which drove me into addiction in the first place. However being over encouraged or , if I can be frank, forced to reduce off my methadone is their way of solving the matter then they are ignoring what is common sense. Anyone who is pushed against their Will - will resist.

[froude]

I agree with Neil &usandthem,with out any doubt anyone forced or hoodwinked into taking reductions will rebell,and it could come to the point where they are reduced quickly to get that person off and you can bet someone new is taking their spot over,its like you been on it to long your gone,disgrace if you ask me,coming from someone or an organisation who is in the community to help but all they are doing is fucking you over,with out doubt Maintenence is the way forward if it works for you,as ive said before it works for me so why change something that aint broke.All the best Froude

[sapphire]

Ken, I don't think people on maintenance should never be asked about reduction, of course they should. All treatment options should be discussed with them,including abstinence. All people on OST scripts should have regular reviews (this is supposed to be "medical" treatment after all).

The issue is that when a service user is "challenged" about their "choices", if they wish to stay mainttained then that should be the end of the story unless the user brings it up again.

We are adults, we do not need to be "encouraged" off a medication that is helping us lead proserous and full lives, I know if I were to be forcibly reduced I would inevitably end up back on the street scoring.

The crux of the problem, I believe, is that too mainy keyworkers and DSP doctors see abstinence as the "true" goal of treatment and that methadone is only a stop gap measure or something those of us with "weak wills and morals" cling to.
Until we challenge those attitudes we are fighting a losing battle.

I do believe a service users charter would be of some use, only if it is to be used in the defence of Service Users, not to be used as another stick of punitive measures to beat us with.

I worry like mad about my keyworking appointments, as I know at every one there will be more pressure to start reducing again, and I feel like I can only put them off for so long.

The bottom line is, they do not see I have the choice to stay maintained long term, and will forcibly reduce me if they want to, even though this flies in the face of the NTA guidelines, so why would a Service Users' charter be any different?

[Pogle]

3. There is a real resource issue that we can't ignore. The NHS doesn't give infinite numbers of hip replacements, fertility treatments, acute admissions for depression or anything else. All things being equal there is a quantity/quality trade off and beyond a certain point the quality will be so poor that safety and effectiveness are compromised. I'd like to see a clear Alliance statement about how we would best like this dilemma resolved where resources are inadequate.

At the moment, I think some people are being pressured off scripts to make way for new referrals and to address some of the poor quality treatment that can arise where keyworkers have excessive case loads.

I'm not sure I agree with this. Not about the resource issue, but about a necessary impact on quality. If someone is stable on medication, doesn't feel the need to sit down one day a week or month and talk to some amateur psychologist about what their auntie may or may not have done to them when they were 4, and yet this is what they are required to do, that is poor quality treatment. Its also expensive.

Caseload weighting is such a political issue in drugs - and becoming more of one. Because people who do not want to reduce are deemed to be failing now, they become more expensive as lots of time and energy has to be spent on "motivating" them.

On top of this we have duplicate treatment systems all over the place, with intensive DIP services bleeding treatment monies out of the regular system to support one that sees the same clients but less effectively. We also need to stop paying top dollar for consultant psychiatrists who frankly are only in addictions cos they couldn't cut it in the depot clinic.

Coerced reductions will also in the end cost more money, as brining someone back into the system in chaos is more expensive than keeping them stable within it. And that's to say nothing about the increased healthcare costs - including those for managing overdose and HIV - thatw e will surely incur as harm reduction becomes more and more of a dirty word.

[sapphire]

I'm not sure I agree with this. Not about the resource issue, but about a necessary impact on quality. If someone is stable on medication, doesn't feel the need to sit down one day a week or month and talk to some amateur psychologist about what their auntie may or may not have done to them when they were 4, and yet this is what they are required to do, that is poor quality treatment. Its also expensive.

That a good point Pogle, I really don't feel the need to see my keyworker as often as I do, and I am sure this is the case for many people stable and giving "clean" tests. The time could then be freed up for use on people who wanted more intensive input from their DSP.

[OP8S]

^ I agree, much time wasted going over the same subject. I think my key can do more good supporting those that *want* to detox. I & I'm sure most others are very aware of the medication that they take, & will decide to reduce once they feel ready to. If you decide that you want to be maintained on your dose I see very little point in seeing key. My GP always asks what dose I want when I see him at the clinic & until I decide for myself that I want to reduce I see very little point in going around in circles with key. This provides key with more time for other users with the bonus that I don't have to justify why I want to remain maintained once a month. Also, it's none of keys business what happened when I was 4 years old ! They do seem to want to find a negative life experience that has " made " you resort to taking opiates. There may well be a reason, other than a pleasant way to get high. If there isn't then they just can't seem to get their heads around the fact that you're not a particularily damaged individual & like the effects of a drug other than alcohol.