Service Users meeting in Milton Keynes

[OP8S]

In Scotland a care plan is a living legally binding contract between su's & providers which at no time should be witheld by the provider. Sorry if that's irrelavent to anyone in England/Wales. I'm just posting what I know to be true.

[Fluoro]

I feel slightly reasssured with what Jimmy said regarding his local Commissioners astonishment at the idea of having time-limited treatment as a blanket approach to opioid addiction. However, whilst I don't want to piss on anyones chips or sound cynical/negative, Jimmy did point out that his Commissioner is just responsible for his area (Milton Keynes).

Therefore, although his (the Commissioners) opinion may be taken into account before any final decisions are made about the prospect of implementing a time limit on substitute prescribing, he is ultimately not at the top of the ladder with decision making on a national level. I'm not having a go at you Jimmy-in fact I applaude you for having the balls to go and put your point accross to the people that matter in your area.

I just think that this new Government has ideas/policies that they want to implement, irregardless of the human cost involved. David Cameron is trying to sell himself as a man of the people, when in fact that could'nt be further from the truth. He went to one of the most prestigous private schools in the country, has undoubtedly had a sheltered upbringing, and therefore will never be able to, subjectively anyway, truly understand social problems like poverty/alcoholicism/drug abuse. He is a muti-millionaire, his wife is the daughter of a barroness, and this week he had the audacity to say that Sure Start childrens centres are brimming with middle-class people "like his wife and son". Thats an insult to the middle-classes, never mind the working-classes as well. I know this may not sound relevant, but it could'nt be anymore relevant. We are gonna be having people who have had these kind of upbringings and therefore a lack of social knowledge making very important decisions about our lives.

[Flip]

Absolutely agree Tomo!

I posted a while back questioning just who would be picking up this "burden" that "we've" supposedly incurred. So far I've seen nothing to contradict my original thought that it would be the poor carrying  the burden  while the rich went  on their merry way  probably accruing a few more benefits as they went.

Flip

[skunkworks]

   David Cameron is trying to sell himself as a man of the people, when in fact that could'nt be further from the truth.

   We are gonna be having people who have had these kind of upbringings and therefore a lack of social knowledge making very important decisions about our lives.

Cameron is like the Greg Stillson character -  played by Martin Sheen in David Cronenberg's adaptation of Stephen King's 'The Dead Zone'

[simon]

If the PCT's are to be disbanded and the councils have to save so much money, who will pay for commissioners?

[campanula]

um, well if the recent sputtering from Prof.Steve Field in last weeks Observer has anything to do with the current 'guidelines' we all have reason to be very afraid indeed. Us druggies, already the lowest of the low, will now be joined, no doubt by fatties, denied insulin for their 'undeserving' type 2 diabetes. Drinkers and smokers, well, time to rot in puritan hell. Fast cars and crashes, mmm, i wonder - perhaps only if they are driven by an unemployed people Naturally, these health 'benefits' are likely to be pulled for us, the great unwashed proletariat since it is generally perceived that we are apathetic and do not bother to vote. Ultimately, it is going to be a numbers game. As a historian, I realise that the 'lessons' of history are rarely learnt, sespecially with a 5year mandate to get ones head in the trough and chow down. Why were people not out in the streets in rage during the 1930s (apart from a few northern cities which didn't really count) - because even though there were 3 million unemployed, 27 million still had jobs and in many places such as the south-east, things had never been more prosperous. Sorry to vent but I feel deeply pessimistic by the rise of the corporate care provider and subsequent lack of regulation and accountability. Our GP practice has done its best to kick us off the books after our doc retired and frankly, once money becomes tight, all kinds of justifications can be made - best of all being 'it's your own fault'

[simon]

You must be helped to recover - it's the future... oh wait... we've been here before and it didn't work.

[skunkworks]

You must be helped to recover - it's the future... oh wait... we've been here before and it didn't work.

.. reminds me of an answer given by a high ranking officer in the United States Marine Corps during the Viet Nam War:
    - when asked why he had just bombed a ville back to the Stone Age he replied
      "in order to *save* the village - it became necessary to *destroy* the village" ......

[derek d j]

Out of interest and because it may help others (including me) in the future, what has the last few months taught you in terms of 'user rights' and 'where to turn'?

At first, it was bloody difficult to know where to turn.  Under the previous sp, anything came up you just rang or popped into the clinic and asked your keyworker or doctor.  We wasted some time trying to do thiis.  When it started to dawn on us that we were being utterly dismissed and, incredibly being told a crock of shit "for our own good", things grew even more difficult.
Cambridge users move in all sorts of different circles; we elder ones had long lost touch with one another, &there was no'users group''.  Those of us who found our anguish too much reconnected with one another, and found we were all feeling the same.  It was dreadful; we almost had to pretend we were better than we felt so as not to make the others feel worse, if that makes sense.  We really just wanted to forget about it and do normal things, pretend it wasn't happening.

When the enforced 'reductions' began to bite, we couldn't 'forget about it' any more.  We went online and looked.  Werang a users magazine in London whse editor met with us, filled us in on  the structure of drug treatment, pointed us in the right direction and wrote on our behalf to the NTA and DAAT (thanks, big E)

Thats when it got really scary, when we found out just what we were up against.     Read the history of the shaping of British drug treatment since 1968 for yourself to find out why.   Enuf said.

Then we rang The Alliance-obviously huge thanks to lindee and all there-who helped us draw up an 'official complaint', which sets the whole thing in motion.  At time of writing, Addaction is conducting its own internal inquiry, and will kindly tell us the results by August's end.)

As regards 'users rights', you do have them.  Unless your sp decides you don't.   The you have to appeal loudly;we simple folk  found it was essential to have somebody 'organised' state them clealry and repatedly on our behalf.(again thanks, lindee ).  Even then, there's no guarantee our user or even human rights will be respected. we're addicts', pieces of shit not deserving rights at all who ought to be grateful we're not in jail or compulsory detox camps.  (how long before some bright spark comes up with that 'answer' to the 'state-maintained problem'?)  Against an entrenched mindset that sees all protest as 'troublemakers' spoiling their efforts to  'help' us(by cutting off our scripts -man, its some mindfuck) we are set for a long fight.

It has becoming blindingly obvious to us that this is a nationwide issue and there is far more than a local script dispute involved here.
This is a battle of ideologies, between , well, you decide for yourself.  

We need a large, loud choir that  sings the same song, and knows what its singing.  Anyone who can carry a tune  out there got any ideas?

[OP8S]

We all have the right to see our own "care-plans" if we are obtaining our scipts from a service provider & there shouldn't be anything in there that you don't agree with ( within reason ) maybe that's something we should all be looking at more often. I've only looked at mine once since I signed on the dotted line & of course we are all well within our rights to see our own GP's notes. If you find that you are responding well to a certain drug regime than a different one then make sure that it is noted, if you have managed to make the complete switch from heroin to another sustitute drug then surely M.M.T works for some people  & to take that away from them would very probably set them right back to square one. Make sure every positive action we have made from the first time we had to fess up to the Doc. is because we don't have drug "problems" anymore, we just have to go to the chemist & pick it up. The only problem that I have is that it is not my drug of choice, but I am not a rich man who can afford to keep myslef habited up by seeing an understanding private G.P. I have to tow the N.H.S line & although not particularily happy that it's methadone I have to take each day, the very fact that I don't have to go through the whole scoring carry on daily means that my medication allows me to live a normal life. Working full time, looking after kids, which I can pay my full attention to now that I am on some kind of substitute script. All I have to do is see my G.P once a month at the meth clinic, then make one visit to the pharmacy a week to be observed & pick up the rest. At best this takes up one hour of my week & that incudes measuring & consuming my daily dose, which my kids haven't ever seen me do, compared to finding the money to score as much & as often as possible being on methadone has a very liitle if not negligable impact on my life. Surely for that reason alone it makes sense to keep me or anyone else on a maintainence script, before that I was going to see my G.P at the local health centere weekly, at the least & was always phoning in with ridiculos excuses to get my script early. I would prefer to be maintained on a different drug, but I quite often remind myself that I am being supplied with a pharmacuetically Class A drug & all for the price of my prescription pre-payment card which was about £58 last year... the similar amount of gear would last me a night at best.

[Jimmy]

Hi friends

Tommorow (14/09) I will be attending another SU's + significant others meeting in Milton Keynes.

Will comment on the forum in due course.

Hope your all ok

[Jimmy]

Ah yes, the meeting - I forgot to comment.

It was actually a Quarterly Progress Meeting relevant only to the Community Drug and Alcohol Centre (CDAC); attendees consisted of myself, the commissioner, the manager of CDAC, and the lead clinician at CDAC.

One of the issues under discussion referred to the small percentage of patients successfully completing treatment ie, discharge free of all substances. I pointed out that for many SU's success IS maintaining contact with services, stable and progressing in life on substitute medication. I also mentioned evidence pertaining to a 'natural history of addiction', revealing that many SU's eventually bring there treatment/contact to an end entirely of their own accord. Also, having 'exiting treatment substance free' as the only measure of success points to an idealized view of what treatment is all about and totally disregards the complex nature of addiction. Moreover, completing a detox/reduction plan and leaving treatment drug free is relatively easy to do and, to me, should not be viewed as a true measure of success; continued abstinance for 18 mnths - 10 yrs following dischagre would be a more accurate measure.

I also brought up the change in clinical guidelines that would be necessary to move from a harm reduction/maintenance to abstinance-based treatment model. I said I would find it hard to believe how independently written clinical guidelines could possibly be appropriate one day but unfit for purpose the next.

Overall I was pleased with my contribution and felt I managed to keep the discussion grounded in reality. As was the case last time the response was positive and I have been left with the impression that those responsible for services in MK are against arbitary time limits and all for care tailored to the individual. However, I am also painfully aware that any plan to deliver decent services at a local level are pretty much meaningless without support from national government.

Whatever happens, it feels good to have been able to at least put my viewpoint across; its definately something I will continue to do whenever the opportunity presents itself.