A certain part of the country at present are dealing with what they describe as fall out from elsewhere., along with other factors.
As an advocate i and the Alliance are trying to help the people it affects.
Whilst talking with one of the managers there i was told that they felt very let down by the 'Field' in general, the new Orange book and the NTA.
Referring to the lack of clarity in the research around amp prescribing.
They mentioned in particular the caviat that says patients on long term and initiated elsewhere need to be left alone. I paraphrase of course. This is tantamount to 'writing ppl off' they say. (poignant).
They want to know 'How effective is amp prescribing?' No good research they claim.
In their opinion too 'long term amp prescribing doesn't reduce harm'.
The risks of strokes and bacterial infections were just two of the high risks mentioned.
The wish of not wanting to destabilising people was mentioned but they felt that maybe 'amp scripts is what got the client where they are if stable but that doesn't mean they need to stay there'.
The issue of needle fixation was raised and it was thought that treatment was missing a trick here by not exploring why they have this fixation instead of just 'enabling' that fixation by prescribing injectables.
Also the old debate about IV was discussed.
Off lic? Product Lic not for drug dependency? True confusion reigns here it is claimed.
Okay that was that.
Now this person convinved me of their good intentions and truly feels that these clients belong in Secondary (specialist) care but it seems locally that this will not happen. So even with these good intentions they are still stuck with the people.
They are truly concerned for these ppl.
If they cannot get them into secondary care there will be 'forced' reductions and conversions to oral.
This person is trying to help but has got an opinion on injectables and cannot find any good evidence to sway them.
In real terms this will mean many advocacy cases for me and many unwell patients, that have been possibly let down all along by the tretment system. Afteral someone prescribed for x number of years.
So the worker feels let down by the lack of research and the service users will be let down by new enforced prescribing regimes.
Please help with evidence, suggestions and comments.
My best
TonyB

Hello Tony
Not sure of the specific details here, but am concerned that you feel let down by the NTA. If you want to approach us formally I'm sure we can give a response.
Hugo

Hi Hugo
Sorry.
I do not feel let down whatsoever by the NTA or anyone else......... this week anyway.
I was putting fwd something that was said to me whilst pursuing a 'batch' of cases in a particular area. Not wanting to name the person or the area for obvious reasons i feel i may have not been clear enough.
To clarify the feeling of being let down was put to me by a manager when i called regarding advocacy cases.
Hope it is clearer now.
My best
TonyB

Hi Tony

I thought you were very clear.
And I understand that the expressed sense of disappointment was primarily about the lack of a supportive evidence-base.

But I hardly think that's the NTA's fault, or job: to build the evidence-base that is (I know YOU weren't suggesting it was).
The NTA do a job of pulling together some of the evidence across a variety of issues, and make a good job of that in my opinion in their very accessible 'Briefing'-type documents.
Yes, they have been given the task of steering the contingency pilots and are (I'm guessing) co-ordinating the diamorphine prescribing trials.
But hey, how many research priorities can they reasonably manage.
And research co-ordination is only one, smallish part of what they do.

Also, their realistic ability to influence clinical guidelines is quite limited and strictly demarcated via committee appointments etc.

The idea that the 'field' has disappointed strikes me as heartfelt but faulty, in the sense that the clinical reserachers out can only do that research if they have the capacity. It has been a known weakness for many years that the strategic commissioning of national research has been grossly under-resourced (comparable to other possible investment opportunities e.g. enforcement).
I don't see how the evidence-gap can be addressed by the field in any concerted fashion without that a corresponding resource injection.

Cheers
Simon

I have prescribed Amps for various people in primary Care for most of the last 30 years,and continue to do so. I would be happy to discuss therapeutic options for particular patients with GPs from other areas if that would be helpful to your advocacy.

Clearly as always, every case is different. However in situations where people have had legally prescribed injectable scripts over long periods, moving towards change from that needs careful discussion and negotiation, in the same way that all changes in any prescribing practice work best when explained rather than forced upon people.

Some people may well be helped by this GPs astonished reaction to their Amps, which may move them to feel that perhaps the status quo is not the only way, and there might be life after the needle. I have many patients who have stopped amp scripts eventually, some of whom are now opiate free, and long term users can be heartened to hear of this as the habits of a lifetime feel hard to change.

Your Doctor is asking for evidence that "long term amp prescribing reduces harm" but he is not thinking of starting new patients on amps, so maybe should rather be looking at the best ways of helping these people who are stable on established injecting scripts to move gradually towards contemplating the notion that it will be hard to continue to inject into extreme old age, and that maybe the time is coming to move away from it. Where lives are stable and injection sites reasonably healthy, I don't feel the need or feel i have the right to force any sudden change on people when apart from the injectable script, they seem to lead otherwise perfectly heathy enough lives in every way. However i do chip away with healthy living advice which includes giving up smoking, eating fruit and veg, moderating alcohol, having flu jabs, and considering moving gradually away from injecting, as I would recommend all these things for the sake of long term health and well being.

People get a bit bored with this and sometimes (as last week with a 60 odd year old couple) eventually say "we think we may try to stop the Amps in the New Year. You're probably right."

GPs are generally extremely good at this drip drip type approach to management of long term conditions. And although I continue to prescribe Amps for as long as it takes, i encourage people with the notion that if and when people eventually throw them away for good, they don't miss them or want to return to them and generally look very pleased.

I'll try and think of something more formal and of an evidence based kind when less tired.

Judith and Simon
As usual thanks erverso. What would i do without you guys.
Hugo i hope i was clear enough in my second post. Really and truly i have no problems with the NTA and as West Midlands S/U forum chair, working with the guys in GOV office there i would approach it through the proper channels please be assured of that.
Also i am not one to 'have a pop' at the 'Panto Villain' because i appreciate and welcome the NTA's contribution to our field and indeed my recovery..... with the introduction of evidence based treatment and a fairly robust system to deliver it, to name but two reasons.
I have already had great assistance from various regional leads in the last two weeks as i have tried to come to terms with the national advocate's role with the Alliance.
As Simon points out the disappointment was about evidence base and it wasn't me feeling let down.
Though i thought the person i spoke to had some good points.
Judith fantastic and thanks for taking the time to read and reply.
The facts are i have someone who may be swayed if presented with the correct and convincing evidence base away from their present thinking on Amp prescribing. This, if they did, would mean many people not suffering enforced conversion, detox or discharge and all the harms that follow that after 20 + years on prescribed (and not) injectables.
This is one area, geographically, hard to believe, even with local nuances, that this will not be an issue for other areas in time.
Please continue to relpy, as some of you will be aware i tend to use this forum as one of my first ports of call as an advocate, s/u rep and a person in treatment.
Thanks all
TonyB

Of course Tony, sorry if I came across as defensive, not my intention at all. I just know some providers, users etc. find it hard to approach the NTA (why I don't know, we are very warm and cuddly) so I'd be happy to pass on information where I can.

Hopefully when RIOTT reports in early 2009 we should have more info re: injectibles prescribing.

Hugo
Thanks. I just wanted it to be exactly so really.
As i do get on great with you cuddly bears at the NTA.
I find you all very approachable and thatb is good enough for me. I have spoken to two regional and one national lead today and yep....cuddly as you like. Just like us a the Alliance really. I see totally what you mean.
I wish people would approach you guys more and i spread that message wherever i go.
Great Re the RIOTT stuff but right now we, not trying to create mass hysteria, have a 'mass' (more than one) of people who will be 'off' their scripts before that. I accept that this will always be the case with an ever emerging evidence but to be honest i trust that this is where good collaboration could mean a life saved.
I must think more about this, i have been posting on my feet as it were.
Hugo thanks for responding, a chat would be great.
In reality there is a need out there (evidenced by my growing caseload) so if we all could help the people in this particualr area staff and s/u's alike it would be great.
I knew i wouldn't get the day off. Ahh well. I'm really sounding like a GP now
My best
TonyB

Tony, I question the safety of long term injectables. My subjective feeling is that sooner or later problems develop such as DVTs. I am currently reviewing our records to see why injectable scripts have been stopped over the last few years - ie was it for health grounds, or because of changes made by the patient wrt their drug use.
Does anyone know of any research along these lines? Does the RIOTT study look at this group of patients?
Whilst I agree with the don't fix it if it ain't broke approach, high risk prescribing has to be defensible using an evidence based defence. The 2007 orange book comments on the old British system, suggesting it is flawed. Is there any evidence to support long term unsupervised prescribing of injectable methadone?
Turning the discussion round, is there any data regarding outcomes if patients are moved gradually from injectables to oral methadone over, say 12 months? (either voluntarily, or involuntarily?)
Lastly, why do some patients prefer injectables?

Hi Rob
Some answers to your questions:

As far as i can tell RIOTT only randomised patients onto oral vs injectable methadone who had previously tried oral and failed, and as it is relatively short term (3 years - somebody correct me if i'm wrong) will not study the group your are interested in. See info at http://www.iop.kcl.ac.uk/projects/?id=10114
A paper on long term injectable methadone prescribing was published by Dr Louise Sell, lead consultant psych based at Drugs North West in Prestwich - as i understand it she had inherited a large number from the Wirral when John Marks emigrated to NZ -
Authors: Louise Sell a; Graham Segar a; John Merrill a
Affiliation: Drugs North West, Mental Health Services of Salford, Manchester, UK.
DOI: 10.1080/09595230123311
Published in: Drug and Alcohol Review, Volume 20, Issue 1 March 2001 , pages 57 - 66 http://www.informaworld.com/smpp/content~content=a713659487~db=all suggests quite good outcomes

Again I would try Louise Sell on the outcomes of moving away from iv rx - not found anything on this

Laastly another Dr Sell paper from 2004 may help with your last question - http://www.ingentaconnect.com/content/bsc/add/2004/0000...rt00013?crawler=true pasting abstract below:
Patients prescribed injectable heroin or methadone —their opinions and experiences of treatment
Authors: Sell, Louise; Zador, Deborah1
Source: Addiction, Volume 99, Number 4, April 2004 , pp. 442-449(8)
Publisher: Blackwell Publishing
Aims 
To describe the opinions and experiences of treatment of a cohort of patients prescribed injectable opiate treatment (IOT). Design, setting, participants 
Cross-sectional survey of all patients on injectable diamorphine or methadone at a tertiary referral clinic in the northwest of England in June 2000. Findings 
A total of 104 subjects were prescribed IOT, mostly male (87.5%) and with a mean age of 36.3 years (SEM 0.66, range 20-53). The majority (75.0%) were prescribed injectable methadone with the remainder (25.0%) on injectable diamorphine. Most subjects (93.3%) used intravenously, many (58.7%) into the femoral vein. Treatment was sought most frequently in order to procure a drug supply of known dose and purity, to improve family relationships and to avoid trouble with the police. Half were satisfied with their treatment but many wanted to change to injectable diamorphine or to increase their doses. Subjects cited many advantages of injectable diamorphine over injectable methadone, although benefits of injectable methadone were acknowledged. Conclusions 
Subjects articulated a consistent desire for IOT in order to `stabilize' their lives in a number of ways. This sample was recruited from one of the country's largest specialist IOT clinics. The generalizability of this study's findings to all patients in the United Kingdom currently prescribed IOT, however, was not examined. Nevertheless, these findings suggest that clinicians and policy makers should be aware of many heroin users' perception of IOT as long-term treatment and their clear preference for injectable diamorphine. Further investigation of differential outcomes between oral and injectable OT and between different injectable opiates is warranted.

This message has been edited. Last edited by: susi,

thanks for the info there Susi.
Rob