Outrage in Cambridge!

[derek d j]

 All 29 users on injecteabl presciriptions in Cambridge were told late April that their prescriptions were to be 'individually reviewed'; now they are all in the process of being switched, individually, to methadone linctus.
 Cambridge has no history of cavalier prescribing.  All those concerned were given their prescriptions only after all else had failed.  The group includes eight on diamorphine maintenance; all but one of these are in their late fifties and sixties and have had their prescriptions for an average of 17 years.  Between them they accumulated 45 criminal convictions for drug-related crime; since they've been on diamorphine, none.  Some have now gone decades without recourse to the black market; all live settled existences that, they believe, would not have been possible without their prescriptions, nor if their precriptions are removed.  Unsurprisingly, they share a costant sense of dread.  The statistics are not avialable for the 21 users on methadone ampoules but, broadly, their experiences appear to tell a similar story.
 The change, those affected were told, was ' on cost gorunds '.  Users note wrly that extra counsellors are being employed to help them ' structure their days' and similar gobbledegook innapropriate and insulting to grandparents approaching pension age.  They also comment on the costs of repeated and extensive outsourced 'drug testing', increased monitoring, ill-attended classes and beaucratic excesses since Addaction took over as dsp for Cambridgeshire two years ago.  Those on diamorphine also query why diamorphine linctus is not on offer as an alternative for those who experienced unhappy reactions to methadone.
 They are inclined to think a truer motive may be that their histories manifestly contradict the ' recovery equals abstinence' and ' one model fits all' approach to drug treatment. " It seems that if you're not a tabloid gutter junkie they're going to make you into one," said one user bitterly.
 Whatever the rights and wrongs of injectable or maintenance prescription for new users, it is an entirely different proposition for those already with a long history of succesful maintenance.  There is, for example, no recorded instance of anybody successfully conquering a diamorphine addicion aged over 55; for the sp to expect eight so to do indicates either an ingenuous or callously indifferent attitude to the fates of these individuals.  Their protests that physical, mental and spiritual realities are simply being ignored are met with a  glib' you'll thank us when you're on linctus',  It beggars belief but it's happening now in Cambridge; recoveries of decades duration are already beginning to unravel as users grapple with the stress and disruption of 10% monthly cuts.  But, hey what's the lives of a few ageing addicts when you've a masterplan?
 Addaction took over the contract here in 2009.  Is there any field other than that of drug treatment where an organisation can grow so big without challenge or investigation?  Since they arrived here, nodified addict numbers are down-no new scripts save for supervised syrup for the persistent&thickskinned-while, in the real world, dealers offer a free 'bag' if the customer waits more than 20 mins for delivery and a red light area has sprung up to accomodate poor women addicts.   It seems the only people to benefit since Addaction's arrival here have been unemployed social workers and corporate middle managers, black market dealers and, possibly, those wanting to come off and needing an instiutional support structure.  In time, the effects of what is arguably a simplistic,cosmetic approach to the complex problem of addiction will become apparent to the wider population; hopefully, it will then be discredited.(cold comfort for the 29)  But, as history teaches, people will swallow what they're told where ' drugs' are concerned.  
 So tell themthe truth-now, before they swallow the Maddaxtion fantasy and addicts everywhere swallow methadone syrup... in sleepy Canbridge, lives long mended by a judicious application of a programme of injectable mainenance are presently being ripped apart, and decent human beings treated like experimental  laborary animals.  Those of you who've done a kick know how long it took to regain anything like your natural energy and feel on top of things again; now, iimagine coming off in your sixties from a 20 year habit and figure  when you'd be right again.  Enuf said?i
  Let me be clear.  Longterm injectable maintenance is not for everyone; , just that very few who find it impossible to stop their using behaviour,whatever the cost, and on whom it produces a marked, and defineable improvement.  People like the Cambridge 29,  in fact.   Are they to be condemnded to an uncertain futurre. wth icriminilisation and disnintegration among the likelier outcomes, in order to "prove" that recovery means abstinence?  Unless somebody speaks out, and speaks out soon, it seems quite probable.  The 29 need your help and support and now.  Any ideas out there?

[physeptomaton]

Most of the people on injectables are among the first major wave of UK working class addicts  (some even older ones in their 60s and 70s from the Rolleston System and the days when consultant doctors, public school heads and accountants shared pharm smack or China White exist; but these are few and far between)

The '80s generation was when heroin really became mainstream on the streets with Middle Eastern supplies turning up everywhere ready to provide chemical succour to those crushed by the recession and ghettoizing of our inner cities, and also the pill culture reached its peak (barbs and strong opiates readily available from GPs and in huge quantity from obliging private psychiatrists, leading to massive diversion on the streets) and the hardcore of 80s users are mostly long clean or dead; why can't the few "Mother Superiors" with 20-30 year habits not be maintained on injectables, leaving syrup and bupe to those who haven't tried and failed them umpteen times before and still have a decent hope of opiate-free living?

I Support the 29 (and all others on IV maint.- St Helens is not far from my area, and they may be getting rid of amp 'scripts too under this new government.)

[simon]

Were they prescribed diamorphine as part of a trial?

[derek d j]

no, they are all survivors of a previous era..whilst initially subject to a 3 and/or 6 month trial, these were those who showed such marked improvement in whatever areas these things r decided that their prescrptions were then extended and eventually made permanent, subject to the prescribee not 'blotting their copybook' in any way and maintaining their newly stabilised existences.    It is these very existences they now feel r under threat.   Might this writer add that an unfortunate ommission of quotation marks and attributation in reporting the feelings of those affected may give the impression of hostility to addaction in general. This is not so; their approach towards the younger user is generally admirable and forward thinking, heir staff committed and enthusiastic and the most part of their work wholly praiseworthy.  But i do tend to think this decision is a mistake.

[simon]

I wonder if when they were originally given injectables they were underdosed on oral methadone?

[derek d j]

again no..these are the people on whom methadone, in whatever form or dosage, simply didnt work, they report 'lost my marbles' or'just gave me another addictiion without touching my need for heroin'..as i say, they are a v.small minority but nonetheless relevant for that.  much of the 'whys' of addiction remain a mystery, i think some of this group's self-insights of considerable value if parataxic distortions can b surmounted; certainly, the 'oldtimers' appear far more functional/articulate than their contemporaries on methadone

[skunkworks]

... "we’ve set out a bold vision for the future of the NHS - rooted in the coalition’s
core beliefs of freedom, fairness and responsibility" ...

... "We will make the NHS more accountable to patients" ...

...."patients will be at the heart of everything we do. So they will have more choice and control,
Patients will be in charge of making decisions about their care" ...

..."there will be a relentless focus on clinical outcomes. Success will be measured,
not through bureaucratic process targets, but against results that really matter to patients" ...

David Cameron - Prime Minister / Nick Clegg - Deputy Prime Minister / Andrew Lansley - Secretary of State for Health - Equity and excellence: Liberating the NHS July 2010

I must be missing something here ......

[simon]

It is possible to suggest areas of work on the NICE website, the problem with Diamorphine prescribing is that as far as I know there is no NICE guidelines and it's not part of the DOH guidelines. The GP practices will be the ones buying and providing most services soon. I wonder if it may be possible to buy from a different part of the country? It won't help them now though. I still wonder though if these patients were simply not on enough of the oral stuff and could be fast metabolisers. I've not seen anyone that hasn't done well given enough Methadone and we've quite a few on large doses.

[Jimmy]

It is also interesting how many methadone users have a negative response to Buprenorphine maintenance, and vice versa. Maybe its a case of different individual phycological and physiological responses to various medications. Whatever it takes I say; allow people access to the form of treatment that obviously works for them.

[derek d j]

i quote directly from one of the eight on diamorph..' over a 10 year period, i was prescribed methadone, 15x10mg amps was one, 200mg linctus another..it just made me feel numb, i never stopped doing whatever to get heroin, the meth at least killed my conscience..i had2physical dependencies,looking back i think i was quite mad, was like i was watching this fuck-up i'd become from an amused distance..i went into a mental hospital, was told i wasnt schizophrenic, didn't even meet the criteria4personality disorder, all they cld do was blame the drugs..but'clean', i found my thoughts, the emotional overload or something, paralysed me, i cldnt function, even wash, awful..i ended up in jail, only the arrival of an addict i knew saved me from a beating,the details of my offences were so unlikely the other cons thought i was a sex offender at 1st..came out, reused at once, had2accept meth script2ease physical withdrawals--i grew2hate myself, wlda committed suicide but thought i'd burn in hell,every day id take my meth2allow me2do what i had2 to get smack,more court,dreadful but i was beyond caring..finally found a consultant who tried diamorphine..my offending stopped overnight, that guy saved my life.  that was 22 years ago, i reunited with my family, started2care about people again, set about redeeming myself.  i got a life now, i'm at ease with myself, only difference between me&,say,people at work being 3 times a day they'd have coffee, i needed2take my meds.  this how i see myself, someone with an illness as yet not understood but at least they got the antidote.. i  know that methadone makes me worse, not better, only diamorphine does that,4me anyway, i cant see y this isnt as obvious2the experts as it is2me..the injections r just the most efficient way of absorption, its the diamorph i need not the fix. the future?  unless somebody up there sees sense, i have no future, oh jesus"   Sal

[wastedyouth]

These 29 obviously know what is best for them like most addicts, and if it works them why change it ,is it all to do with money?, is the problem now that they are getting older they need a liitle more help like most if not all of our elderly population need, and to me it sounds like thev'e found there excuse and their going to stick with it, talk about care in the community.  We need to support these 29 people they would not survive long after being taken off there medication.  The people that initially put these 29 on this type of medication surely have a part to play in making sure they are looked after to the best of their abilaty, it sounds like they were being used as some sort of experiment it's now turned out to costly and everyone is bailing out.  I support the Cambridge 29, if we dont stop things here they will just find it easier to bulldoze evey addicts script in the next few year/months.  Stop it now

The quote from one of the 29 surely shows they need our and other peoples support, they kept their side of the bargin there was no illicit use or illegal behaviour, i can see know reason for this shift.

[mcdermott]

Any ideas out there?

While it's reasonable for services to make decisions about how they allocate treatments on cost grounds, it's very unusual for a treatment provider to withdraw a treatment that's working well for the patient on the grounds that it's too expensive.

Secondly, the idea that there can be a blanket decision that's imposed on a whole group of people, regardless of their personal circumstances and their individual needs just seems completely wrong.

The question that you need to ask is, what's changed -- in your particular circumstances -- between, say, last month, and now? If the only thing that's changed is the financial situation of the treatment provider -- well, that's not your problem and it's not a reason to be interfering with your treatment.

If you feel as though it's going to have a deleterious impact on your well-being, then say so. Say so in writing, so that it goes on your case notes. And don't agree to anything that you don't feel is in your best interest or unless it will have a positive impact on your wellbeing or your stability.

If they do go ahead without your consent, then tell them that you do expect this to have a negative impact on your stability. You expect the decision to be under continuous review. And if your stability does suffer, then you'd expect that decision to be reversed.

Remember, you also have the right to a second opinion. What this means in this instance, is that you have the right to be seen by a consultant psychiatrist who is expert in drug treatment. It would have to be a consultant who has experience/expertise in prescribing injectables. I'd also want them to suspend any decision around my script until the outcome of that second decision is received.

Again, you might need to go over the head of your current provider to get this stuff. If your current provider is obstructuve, you might need to find out who is responsible for clinical governance at your service (it's probably your local PCT, or mental health trust maybe?) and take these issues up with them.

We're going to be entering challenging times. However, we do have certain rights, and we need to ensure we make full use of them.

Please keep us up to speed on what's happening. 

[mcdermott]

I still wonder though if these patients were simply not on enough of the oral stuff and could be fast metabolisers. I've not seen anyone that hasn't done well given enough Methadone and we've quite a few on large doses.

You wouldn't though, would you? People who don't do well on Methadone vote with their feet and don't hang around when they don't feel a service has anything to offer.

[simon]

You wouldn't though, would you? People who don't do well on Methadone vote with their feet and don't hang around when they don't feel a service has anything to offer.

We prescribed from a needle exchange and just grabbed people I think we got 150 people some had been using as long as 15 years and never been in treatment. At about a year we had retained about 80% of them.

[Jimmy]

We prescribed from a needle exchange and just grabbed people I think we got 150 people some had been using as long as 15 years and never been in treatment. At about a year we had retained about 80% of them.

and is it possible the remaining 20% may have benefitted from injectable treatment - as is the case with the Cambridge 29?