Guidelines?!

[sapphire]

I have copies of the Orange Book, and the December 2010 Strategy Guidelines, does anyone know if there are anymore recent additions to either of these, or indeed any other publictions relating to methadone prescribing guidelines?

Reason being I need to print them out and stick them up my keyworkers arse under my keyworkers nose.
Anyone know?

[Jules]

Hi Sapph

As far as I know there are no recent additions at present.  SMMGP do have some good guidance documents on their website though which may be useful:

http://www.smmgp.org.uk/html/guidance.php

Good luck!

Jules

[OP8S]

Every DSP should have a copy of the guidlines & changes of policy available to SU's, even the information to make a formal complaint. The commissioners demand that in any other sector of care. I see no reason why drug dependants are treated in any other way. Is it ECG by any chance sapph ?

[sapphire]

Ok, Jules I read most of that and it seems to suggest that there should only be concern where the QTc interval is over 500ms.

My QTc interval is 457, which my own GP and a cardiologist say is fine, but the DSP doctor says "Well, they're not the ones prescribing, I am and I feel you're at risk".

So, am I at risk?? Accoring to the Orange Book in females anything up to 470ms is deemed as fine, anything above that then the dose may need looking at.

My DSP doc is reducing me really quickly on the basis of this (457ms) ECG, which everyone else medical says is 'withing normal paramaters'.

I am having a really hard time, as the DSP doc has said that if my QT doesn't come down then they may take me off methadone altogether, which for me would just be a death sentence.

I cannot understand why my GP and the one of the cardiologists at my local (big) hospital are saying I'm fine but the DSP will not listen to them.

I'm at my wits end, as if they cut off my script, well, it's ta ta Sapphire.

Plus, whenever I have my ECG I get ultra nervous, and in the research I have read it seems emotion and anxiety can raise blood pressure, which in turn increases the QT interval.

For example, my last ECG, my BPM was something like 144 (obviously tachycardic), but on an average day to day basis I have no high blood pressure or tachycardia.
MY GP and cardiologist are quite happy with my heart and my methadone dose, but the DSP doc will not listen to them.

AAAARRRRRGGGGGHHHHHHHH,

I really don't know what to do, there is no one else who could prescribe for me, everyone in my area is funnelled through the DSP, and in this new dawn of 'recovery orientated' stuff I feel like they are using this to get me off my script quicker.

Ideas anyone?

Jules - I would like to get the Alliance involved, but am wary of making a bad situation worse, if you see what I mean? What do you think?

[Jules]

It's frustrating Sapph.  At the end of the day, YOU are armed with the information but if you feel you'd like some additional advice please feel free to email beryl@m-alliance.org.uk or ring the Helpline.  We only get involved with a person's consent and are also there to discuss your options without taking it further.  Just don't get stressed on your own.

Jules

[bp]

I must admit Sapph, I'm not aware of anything new but I know someone who will know, as indeed does Jules. I do believe that these DSP folk try to blind us with science sometimes and wondered if you ever challenged the doctor or asked him/her to explain exactly what's been said. Anyway, will check it out, have a chat with Jules and we'll see what we come up with.
Cheers
B

[sapphire]

Hi Beryl & Jules.

I did try to question the doctor on 2 ocassions, saying that the Orange Book guidelines said that as long as a womans QTc did not exceed 470ms then there was no need for concern, concern was only if it was over 470ms and then dose should be altered a little, or over 500ms, which was quite a cause for oncern.

Mine is only 457ms, and it would have been lower except I got so stressed that they would stop my scriptupon the results of the ECG that the ECG showed massive tachycardia. I have no tachycardia normally, just then when I was so worried.

Research I have done also says that hightened emotion and stress (like when I had the ECG's done) can increase the QT interval during the time of stress, when in rewality for the reat of the time there is no problem.
I queried this with the doctor at DSP and she said, "Anxiety and emaotion will have no effect on the QT interval", when many scolarly journals prove her wrong!

The doctor said "Well, they are just guidelines, and your QT is prolonged". I can't see how it is prolonged if a GP and 2 cardiologists are saying it's 'withing normal parameters'.

I have asked my GP (who is very good), and have had a 48 hr cardiac halter monitor which showed NO problems, and the cardiologist my GP spoke to said there was no reason for me to discontinue methadone. Also I'm not on a huge dose, although it is over 100ml/day.

My GP did write to the DSP to say that he was fine with me continuing methadone, as I was within normal parameters, but the DSP doc just said "Well, he's not prescribing is he, I am".

What to do??
 
Beryl/Jules, any other more up to date info you can find would be great, as when I showed them the bit from thre Orange Book, they said, "It's from 2007, things have changed since then".

I'm so scared, if I lose my script god knows where I'll be. 

[OP8S]

My QT interval is around the same that yours is sapph, has been borderline now for the last 5 ECGs. It's just a hussle to grind you down, they're starting to send me for ones the whole time now. This has only been in the last year though, I've been on this dose for several years without so much as a dizzy spell & since they never gave me an ECG upon treatment my QT interval may of been borderline anyway. My GP has said that he won't enforce any reductions on me unless it gets to the 500m/s mark, which is a relief. Your GP sounds like a complete arse though, thinking he knows more about cardiology than an actual cardiologist. I don't suppose your DSP GP would make time to have a meeting with the cardiologist would he ? By the sounds of it no.
Good luck, yet again !

[derek d j]

Oh, Sapph, it doesn't seem right.

Does your consultant know he terrifies you? A mission to reduce prescriptions rarely make for good medical practice. Maybe he's under instructions and, like the rest of us, inclined to the path of least resistance. I'm sure you'll correct his mistake in that respect.

[sapphire]

MY DSP doctor has received letter(s) from my long term GP,and a note from a cardiologist saying that there is no reason to remove me from meth, as I am in the 'normal' QT range.

What they are doing now is reducing me mega quick down to 80ml, then if my QT isn't lower, off meth altogether.

I know my QT won't be lower as it's the stress of the ECG's and all the palaver that goes with it that increases my BP, and as such my QT.

I told my DSP doc this, and he said, "a bit of anxiety won't affect these tests", even though the BMJ research I have read says otherwise.

The thing that's really pissing me off is that this is all about figures for the DSP, they know full well my QT is fine but they are trying to brow beat me into compliance.

I have an appointment with my own GP this week, to tell him the extent of the situation, and see if he can intervene, as if not, well, heroin here I come if they remove my script.
I'm hoping he'll hook me up with a cardiology appointment so the cariologist can tell the DSP doc that they are not doing the right thing.

After I have spokem with my GP, I am going to call the Alliance, as I really need someone to talk some sense into this doctor. I even showed htem thre Orange Book guidelines, and they said,"I am prescribing, and it's up to me to determine risk".

What aout the risk of me going back on drugs and dying - which seems far more likely than dying of a QT interval that is no more prolonged than the majority of the population, drug using or not.

I am so fucking stressed out b this that I have been using, and I always just stick to my script.

Jules/Beryl - if I ring the helpline after my GP appt. do you think there's a chance of getting this doctor to see sense?

I feel so deflated,I've built a whole new life since being stable on methadone, and it seems to be slowly slipping away, and I can't do a thing about it as the doctor just will not listen to me.

She sees me as some lowlife 'junkie', and how can I possibly know more about methadone treatment than her?!

[Anon33]

I have copies of the Orange Book, and the December 2010 Strategy Guidelines, does anyone know if there are anymore recent additions to either of these, or indeed any other publictions relating to methadone prescribing guidelines?

Reason being I need to print them out and stick them up my keyworkers arse under my keyworkers nose.
Anyone know?

[OP8S]

My god sapph, you've been up & down like the proverbials this year alone. You've reduced to 26ml, wasn't managing on that & so was sent back up again. Now they're reducing you at a rate I certainly wouldn't be happy with. All the stress can't be doing you any good at all. Could they not of maintained you on the same dose for several months before sending you for another ECG ? Your heart must be the most investigated organ of 2011 ! Mine looks like it will be investigated every couple of months even though the cardiologist says things are just borderline. Like I said my QTc interval was similar to yours, still not considered that dosage shoud change unless, I asked for it to. They do seem to be trying to grind me down with these ECGs that are always within a few m/l, not one of the ECGs I've had has my resting pulse been less than 100bpm. When I asked the nurse about it being a bit high ( normal is 60-80bpm ) she said "oh everybodies different" which rather takes away that my QT interval is slightly elongated, because " everybody is different ".

[Jules]

I'm glad you're seeing your own GP this week Sapph - good call.  Let us know how that goes but, in the meantime, if you want to PM me or Beryl with any details (eg: your area, DSP etc) you'd rather not broadcast, we're always here and confidentiality is guaranteed.

I had to have a 24 hr BP monitor recently - what a pain in the arse that was and now I have to have medication although I'm still convinced it's stress-related given the year I've had.  Your GP sounds a good sort though so let him/her know what stress this is putting you under.  If he/she and a cardiologist can't convince your DSP GP, then you should take it further.

Take care & best wishes

Jules

[simon]

I can't believe this YET AGAIN! it's not even just about Qtc prolongation other risk factors must be taken into account. The Cardiologist should have the final say and when I got a letter from one saying 'This patient must have his methadone reduced and stopped and NEVER have it again' I sat up and listened.
Try PALS (Patient advice and liaison service) should be available by calling the local primary care trust.
They may be guidelines but you've also got the NICE ones and methadone is on the list of essential medications from the World health organisation. If PALS or the helpline can't sort it ask for a letter to back what the doctor is saying up and ask to see a solicitor. Complain to the GMC!

[OP8S]

Tough talk , but it really has come to this sapph. Things are tough enough & I'm sure it's not a pleasant thought at the start of the New Year but it seems like the only way you're going to get them off your back is by making formal complaints to independent bodies. You sound like your prescribing GP is some kind of wicked opiophobe witch & so should be burnt at the stake for all the stres she's caused a " angelic " maintenance patient, as in you stick to your script, have detoxd from benzos & do not give them any positive u/s . Occassionaly maybe that's your business though.
Is this the intention, to harrass people of scripts that they have been on, leading productive lives. If that's the case I may well lose all my recovery capital that is so important. I put of my last ECG saying that I'd still be away, it had only been a couple of months since the previous one. I expect I shall be getting these letters at least quarterly until anything changes, which it hasn't since my first ECG & I doubt whether it will.
It does feel like pressure to me to reduce. Which leaves an air of uncertainty at the back of the mind. My cardiologist was of the same opinion as yours, that I was within reasonable parameters, borderline prolonged QT & didn't advise any reduction if I didn't want it. So far my GP has been good to his word, but when it's hard enough to hold onto a script anyway the last thing you need are all these ECGs, you've been on double the dose you're on now & survived ! I've been on a higher dose also. Never had any ECGs entering treatment, I just think it's harrassment to push you off.