The importance of user led advocacy

A post by guest blogger Sapphire from The Alliance…

My experiences in treatment have been long and varied. When I started in treatment in the mid 90’s, it was all very different. I was put on a dose of 35mg methadone, as being young, and a girl to boot (women were routinely put on lower doses than men, regardless of whether their substance use was larger or more chronic). The man I was living with was put on 50mg, despite him using the exact same amount of drugs as I, and having a not dissimilar build.

35mg was nowhere near enough to keep me well for 12 hours, let alone 24. Needless to say that led me to continuing my illicit heroin use. At the service I persistently asked for increases, only to be declined.

As I was working at the time, the prescribing service felt I would be better in shared care as there was more opportunity to see the prescriber out of office hours, so I went to my GP surgery for my prescription. The GP was pretty good, and did increase my dose some, although at this time I did not realise the importance of optimal dosing, and thought that the ‘right’ dose was just the lowest amount that stopped you being sick for most of the day!

The GP was a pretty good prescriber, and was sympathetic to my needs and was well read on the evidence and latest innovations in the substance use field. After more discussion with her, we increased my dose further, to 100mg, in the hope that it would be the right dose for me. At that time, the late 90’s, having a dose of 100mg was seen as quite high, and many people were surprised.

During this time, I was still using most of the time, but instead of using heroin which would show up on a drug screen (these were the bad old days of 3 positive drug screens and you were out on your ear) I was buying illicit methadone and using that on top. I got into a routine of taking about 200mg a day, and was able to function, work and was quite comfortable.

After some upheaval in my personal life, I ended up with an additional addiction to crack cocaine, which led to me losing my job, my home and everything else. This was the lowest point in my life: I was homeless, turning to illegal means to support my habit, and my mental health was suffering very badly as a result of all the crack use.

It got to the point where the crack took its toll so much that I was hospitalised for mental health issues. The hospital that I was sent to had a self contained unit used to treat substance use disorders, so they decided that would be the best place to put me whilst they decided what I needed.

During my time there, I was stabilised on a dose of methadone where I didn’t have to resort to illicit means to top it up. This was really a pivotal moment for me, getting optimally dosed on methadone. I was given 220mg a day, and for the first time since being addicted to opiates, I felt that things were getting better, and it was possible to get my life back. It was a very good feeling, and looking back, I am very grateful to that doctor who realised that most of my problems stemmed from not being optimally dosed with methadone.

After being in the unit for 2 weeks and detoxing from the crack and stabilising on methadone things certainly got a lot better for me. I was able to move into a new home with my husband, go back to college and generally get on with life.

As when my husband and I moved in together we had moved to a different part of the country that meant transferring to a different treatment service, which was very problematic. Not only was the transfer difficult with the new service taking ages to generate the new prescriptions even though they had 8 weeks notice to do so, they were also horrified by my dose. I don’t think they had anyone on anywhere near the dose I was on (the average dose was around 60mg) and they could not understand that I was not getting ‘high’ or over sedated from my dose.

This is what led me to the Alliance. As I started having more issues with my new provider, I began to realise that I needed to learn how to advocate for myself, and learn what the guidelines were around such matters are dose levels, time in treatment and reductions.

Once I had been at the new service for about a year, they started mentioning to me that there was a new government initiative, and that I must start reducing, as they were not allowed to keep people on the same dose for as long as I had been.

I spoke with the Alliance, and found out that although there had been some changes in the government drug treatment policy since the Coalition had come into power, there was nothing that said patients could, or should, be forced out of treatment.

The members of the Alliance provided support, and advised me of the guidelines I might need to quote to my service provider, such as the Orange Book[1]. The support was invaluable, as I felt very alone in the matter, as the very people supposedly supporting me in my substance use issues were the ones causing me problems in that area.

The pressure was so intense, and every time I went to collect a prescription I was terrified that it would have been reduced without my say so. It was amazing to have the support and advice from the members of the Alliance who knew where I was coming from, and from other people that had been in the same situation.

There was also pressure applied around the ECG and prolonged QTc interval issue. I was made to have 10’s of (in my opinion) needless ECGs and told that I did have a prolonged QT interval.

The Alliance pointed me to the Orange Book, where I learned that I did not in fact have a prolonged QTc interval, and that either someone at my service was misinformed, or they were using patients’ lack of knowledge around this issue as a means to talk them into agreeing to a reduction they didn’t really want.

After being advised by the Alliance to start by making a formal complaint, and quoting the Orange Book and NICE guidelines stating that coerced or enforced reductions against the wishes of the patient are unadvisable as they are unlikely to be successful and put the patient at risk of relapse together with the levels of QTc interval that are acceptable for methadone prescribing, the service conceded that I did not in fact have a prolonged QTc interval, and did not push the reduction matter any further.

It was very disappointing to feel that my service were not really interested in my best interests, or what I wanted, seemingly only in how many people they could get out of treatment.

However, although my service now were not pushing me into something I didn’t want, and that wasn’t in my best interests, I knew that my service, and others across the country were doing the same thing to countless other patients; this is what led me to take a more active role in the Alliance.

In this day and age, it is very important to have a user led advocacy organisation, as sometimes it’s very difficult to understand and empathise with exactly what a drug user or person in recovery is going through.

Some doctors and treatment staff are excellent and do a very good job, but in some cases pressure from local commissioners, financial pressure and the introduction of payment by results mean that some staff are not always incentivised to do the best thing for the patient.

In my own case, my service was put up for tender and taken over by a third sector provider late last year, and I have to admit I was very worried. At the Alliance we have heard some terrible accounts, many of which have come from the new third sector providers’ patients. However, my fears were completely misplaced and the organisation running the service now is excellent. I really could not ask for better. All the staff are knowledgeable about the medical, pharmacological and psychological aspect of substance use, and they also have great empathy with the patients, which is absolutely essential.

For the future I do worry what the coming change in government is going to mean for drug treatment. I hope that we aren’t going to go down the road of time limited treatment, discharging patients for positive drug screens, and not allowing patients the chance at getting optimally dosed, which as I know from personal experience, can make such a massive difference to your entire quality of life.

I am so thankful for that doctor that assessed me and realised that I would likely fare a lot better were I optimally dosed. Once that happened I was able to start my life again, and do all the things that everyone else does. Optimal methadone treatment really has given me back my life, and ensured that it didn’t end prematurely.

Having the Alliance to turn to for advice and support was essential to me, and without that I would really have been lost. I don’t think some people understand how stressful and anxiety provoking it can be for a service user when their prescriber wants to make changes to their prescription that the patient is not in agreement with, and an organisation like the Alliance is essential in advising patients whether what the prescribing service is doing is perfectly reasonable and within guidelines, or something that is not in the patient’s best interest and therefore needs further investigation.

To contact the Alliance visit the forum at

 – Sapphire, The Alliance


[1]Department of Health (2007) “Drug Misuse & Dependence: UK Guidelines on Clinical Management