Last year, drug treatment services in the borough of Hackney changed. Three services merged into one, or, perhaps I should say ‘two and a half services’ merged into one, because as yet I fail to see any evidence of this elusive ‘third’ service anywhere in the new system. Treatment services in Hackney are pretty much the same as they’ve always been, just even more shit now. That’s all.
The new service is called the Hackney Recovery Service, and the other two agencies involved are the treatment service formerly known as Lifeline, which was a drug treatment and support centre in Hackney, and the S.A.U (Specialist Addiction Unit) formerly based at the Homerton Hospital, which is where I was receiving treatment.
Both services seemed to me to be working well. I had been to Lifeline myself a few times, for SMART recovery meetings and a couple of workshops, but I never met anyone who had anything negative to say about it – indeed, I would often hear the opposite; addicts in treatment would voice praise and relief at having discovered a place that they felt understood the problems they faced and could work well with them. Although I never heard as much positive feedback from other addicts about the S.A.U, I personally had worked hard to forge a good balance with a decent key worker there, and, as far as treatment services go, it was working for me. I say ‘as far as treatment services go’ because in my entire experience of drug treatment services, I have become painfully aware of how badly they are lacking in decent or effective treatment options. In options at all, for that matter. I have always maintained that the S.A.U do not deserve the ‘S’ in their title, because there is absolutely nothing ‘specialist’ about it, and that ‘treatment options’ should not have the ‘s’ on the end of it, because there are no options – there is one option. There is maintenance therapy, and that is all. Admittedly there are three ‘options’ (Ah, but really it’s that ‘two and a half’ thing again!) for maintenance treatment; You can go on a methadone ‘script, or you can go on a subutex or suboxone ‘script, however, essentially they are all the same thing – drug replacement treatments.
There are many examples of why I do not believe the ‘S’ should be attached to the title of the Specialist Addiction Unit, nor to the end of ‘treatment options’ – certainly too many to mention here – but a good example is this; when I first relapsed and had to address my addiction again, my preferred treatment option at that point in time was to go on to naltrexone. Naltrexone is a drug that sits over the opiate receptors in your brain, resulting in the inability to ‘feel’ any opiate based drugs, including heroin, that one might try to use. It is commonly referred to as a ‘blocker’. You must be totally free of all opiates in your system before undertaking naltrexone treatment, otherwise the drug will effectively push all remaining opiates out of your system, putting you into the worst state of withdrawal you ever experienced, and there will be nothing you can do about it because you are now on a ‘blocker’, thus anything you might try to take to ease the withdrawal symptoms, including subutex and suboxone, will be ineffective. I spoke to two different drug support workers, one from the S.A.U where I was receiving treatment, and one based at the St.Mungo’s hostel in which I had just been allocated a room. I told them that I would like to go on to naltrexone in order to prevent a disastrous relapse throughout my stay in the hostel, a place renown for housing many chaotic drug users and addicts. At this stage, my relapse was not too bad, it was salvageable, hence my decision to go on to naltrexone, but I was dissuaded in every possible way by both of these drug support workers, who told me everything and anything they could dream up to convince me not to choose naltrexone but to go on to suboxone instead. As it turns out, naltrexone treatment is simply not available on the NHS, but rather than simply tell me this, I had two separate drug support workers both pressurising me to go on to suboxone, which, they informed me, is a blocker, like naltrexone. The problem is, that I am not stupid. I am not an uneducated person. I know that suboxone is 4-parts subutex to 1-part naltrexone, and that, if taken as directed, the 1-part naltrexone is ineffective. I am not denying that naltrexone is present in the drug, it is present, I am saying that it is only active if the user crushes up their suboxone tablets and injects them. Indeed, this is the only reason why the 1-part naltrexone is present in suboxone at all, as a measure to prevent addicts from crushing up their tablets and injecting them. If taken as directed – under the tongue – only the subutex is active, whilst the naltrexone remains inactive. Common sense, really, as it is not possible for a drug to be both a blocker and a maintenance treatment at the same time. Before suboxone, there was just subutex. Before subutex, there was only methadone. In my view, they are all simply different versions of the same thing – drug replacement therapy. In this case, I decided I would rather go back on to methadone, because I have got myself clean from methadone in the past and so I know exactly what to expect. But both of these drug support workers sat there and bare faced lied to me; they told me that I was wrong, told me that the naltrexone does work as a blocker when taken as directed, and that I “shouldn’t believe everything I read on the internet”. Exactly why they assumed that this is where I got my information from is beyond me, for it is not where I got my information from. I had a friend in private treatment for addiction at the time, and my source of information was a very experienced and practicing doctor from the Stapleford (Belgravia) Clinic in London. A very expensive service, but one that offers a wide range of treatment options – they really can put the ‘s’ on the end of ‘option’ – and, rather tellingly, also the only clinic in London where one can get treatment for addiction without the information going on to your medical records, thus, vitally, keeping your job in many cases. But back to the story. I have these two drug support workers both sitting there telling me I was wrong, and so, exhausted, I eventually asked to see a doctor. A Real Doctor, not just a key worker. To this day that meeting with that Doctor remains one of the most relieving and satisfying moments in my addiction journey. I am now sitting in a room with both of the aforementioned drug support workers who told me how wrong I was, and a Doctor. I put to the Doctor the information I know about suboxone in exactly the same way as I previously put it to both drug support workers. The doctor listens to me, and replies “Yes. That’s exactly right.” Such a simple moment for her, but such a massive and significant one for me. Needless to say, both keyworkers avoided any eye contact with me, and neither of them ever broached the subject again.
I met someone just last month who is on suboxone, and it seems they are still giving out this total misinformation about the drug, as this man was convinced that he was on a blocker. Think about it for just a second; if the blocker actually worked, how can the maintenance therapy, then, actually work? If the naltrexone was active, the subutex would not be able to reach the opiate receptors in your brain, thus you would be sick. How can it ‘hold’ you and ‘block’ opiates at the same time? It’s a no-brainer to me. But that is exactly how we are treated in drug treatment services; as total no-brainers.
It turns out that the third party in the merger of drug treatment services in Hackney is apparently some sort of involvement with St.Mungo’s Broadway, but from what I can see they don’t really have much involvement at all, unless you include referring their clients for treatment, which is pretty much what they’ve always done anyway. I’ve had a lot of interaction with St.Mungo’s myself over the years and I have a lot of good things to say about them. In my experience they are one of the only organisations that work with vulnerable people who bring about genuine results, who offer genuine support and understanding in order for people to be able to improve their lives. By ‘vulnerable people’ I am here referring to people with addictions and complex mental health needs who have been affected by homelessness, and in my experience of treatment services, St.Mungo’s Broadway have been the most understanding of how all this affects a person, and so it was with no great joy that I learned it was indeed St.Mungo’s Broadway who are the third partner in the new drug treatment services in the borough of Hackney. Why? You might ask. Why, if I have such positive experiences of St.Mungo’s Broadway, am I so dismayed to find that they are the third party involved in the new Hackney Recovery Service? Well, I shall tell you why. Because the new Hackney Recovery Service is absolutely awful, that’s why. It feels as though we have taken one huge step backwards into the dark ages of addiction treatment.
First, let me tell you how this major change in treatment services was rolled out across the borough, from my, i.e. a client’s, point of view. This was my second time round on a methadone ‘script because I relapsed. (I would argue that treatment services do not make one aware of all the potential relapse triggers out there, nor how formidably powerful addiction is even once you’re clean off drugs, they do nothing to educate you about the nature of addiction nor do they offer any encouragement or support at all for you to get to the root cause of ones addiction problems.) My treatment was based at the S.A.U and I had painstakingly built up what I thought was a good relationship with a drug support worker there over at least a four year period. However, I was not told by my support worker, or indeed by anybody, to expect this major shake up to my treatment as services in Hackney were about to undergo this major change. Nobody told me anything.
I had stopped seeing my support worker for some time in the run up to this chaos. It is not unusual in itself for me to not see my support worker, but to see someone else instead who would give me my ‘scripts. As I said, I thought that my support worker and I had built quite a good worker>client relationship; I had learnt to trust her to a certain extent and I hoped that she had some respect for me, not just as her client and somebody who was doing well in their recovery, but also as a human being. As it turns out, I was very, very wrong. It wasn’t unusual in itself that I shouldn’t see my suport worker every time I attended – if I ever had a problem, I could always e.mail my support worker and she would arrange a meeting for us, so nothing seemed so out of the ordinary in that. During the final weeks of my attendance at the SAU I was told – by my actual support worker, in fact, she told me exactly this the last time I saw her, unbeknownst to me the final time I would ever see her, she said that “a new service is being created in Hackney and you have the choice; you can move over there now, or you can stay here in this service.” Well of course I said I’d like to stay put; I’m doing well in my recovery, I’m a low risk client, we have a good relationship and I don’t realy want to shake things up in my treatment and recovery. Given the choice, I’d rather stay put. “Okay, that’s fine, you can stay here.” I certainly was NOT told that ultimately this service would be ceasing to operate, ceasing to exist, and I wouldn’t have my support worker at all anymore. Despite that she clearly knew, even as this very meeting took place, exactly what was about to happen, she still sat there and comfortably lied through her teeth to me. Nobody whispered anything about this major change that was about to happen to me, nobody said a word. The only time a new service was ever mentioned to me was in that one conversation I have just cited, stating that I have the choice to transfer over to the new service, or remain at this one. They never, ever said that this service is closing down and that ultimately I will have to move over to the new service at some point. This in itself is a despicable way to treat any patient, least of all patients with addiction and mental health problems whom generally have much lower levels of trust, and require a lot more preparation for change than the average, healthy human being. This betrays to me two things; that drug treatment services truly do not understand the basics or the psychology of addiction, and that they simply have no respect or genuine care for their patients at all.
This is how I discovered that my treatment was being transferred over to the Hackney Recovery Service: One day I go into the chemist to pick up my methadone and the pharmacists assistant says to me “Oh, we have a message for you from the SAU.” That message was that I have an appointment at the new Hackney Recovery Service on this date at this time, written on a pharmacy medication label sticker. Now I was quite insulted by this, because like I said, I believed I had a good relationship with my support worker and, even if my support worker did not contact me directly for whatever reason (although I fail to think of a good reason why not) it’s not like the SAU did not have my contact details, my phone numbers and my e.mail. Why did they think it appropriate or acceptable to ring the chemist to give me an appointment, why didn’t they have the decency to ring ME?? To give ME the appointment? Needless to say, I lost all respect I ever had for my previous support worker in the weeks that followed, as the reality sunk in that she had so little respect for me as to not only not bother to inform me of such major change, but to sit there and lie to me about it, too. My trust in drug support services was irreparably damaged right then, and I shall never trust in another support worker ever again. Even the pharmacists assistant realised how unprofessional and rude this method of communication between treatment agency and patient was, and she seemed embarrassed to be handing me over the little sticker upon which she had written down the details of my appointment.
So that pissed me off for a start. Then, when I get to this appointment, it is absolutely chaos. I immediately recognise this whole shake up to be a big ‘downsizing’ exercise, clearly about funding and cuts, one that shouted out the message loud and clear that addicts just aren’t worth bothering about. It honestly seems that the whole system has just slid into chaos. A little confusion at the start of any new service is of course understandable, but it is now at least six months on and things are still no better.
This is a place that has just taken on the clients from two services, plus whoever else has been referred for treatment in the meantime, so it has double the clients, who enter through a side door down a back alley, into a waiting area less than half the size of the previous reception at the S.A.U. Everyone is crammed in there, and the location of the place seems designed to make you feel shame. Now, go anywhere where there is treatment for mental health and drug addiction and I guarantee you it is always tucked around the back somewhere. You go round the back, round the corner where nobody can see you and that’s where the mental health services are, followed by the drug treatment services. So although they try to say to you “There’s no shame, there’s no stigma here” there most certainly is. It’s unspoken, but by being unspoken it screams in your face. The subconscious messages being sent out by drug treatment services are depressing, degrading and disgusting. The Hackney Recovery Service is now a tiny, cramped room hidden down a dirty alleyway filled with the most chaotic drug users you can imagine. It’s fucking mental, and the staff haven’t got a clue what they’re doing in there.
I see some stranger who offers me no explanation or answers. The following fortnight, I see a different stranger who again offers me no explanation – she writes the name of somebody on an appointment card for me and when I ask her if I will ever be seeing my usual support worker again, she asks me who my support worker is and when I tell her she has a look on her face that says I won’t be seeing my usual support worker again, but she doesn’t actually say that, she just scrawls Deb’s name onto my appointment card anyway, I assume in an attempt to placate me, to get rid of me, and to get herself out of an uncomfortable situation. I would have more respect for her had she just told me the truth, which is all I have been asking for after all
I have now gone, overnight, without any notice or prior warning, from regular, stable, x 4 weekly appointments, with a healthy and supportive connection with a support worker, straight to x 2 weekly appointments in a totally chaotic environment where I could be seeing a different person each time to discuss my recovery. The whole thing is simply laughable. I had to ask on my 3rd meeting “Am I actually going to be allocated a keyworker or am I going to be seeing somebody new every time I come here?” Eventually I am introduced to a new keyworker. She’s alright, as far as people go, but quite frankly, it’s no different from any other support worker I’ve met – inadequate, with a failure to listen, uneducated about the basics of recovery, patronising and smug. For me it’s like starting all over again, with another stranger who knows nothing about me, clearly hasn’t been given any information on my history or current circumstances, and I find the whole process degrading and traumatic. They do not respect or support your recovery whatsoever. During that initial meeting when I was introduced to my new keyworker she was all over the place, she didn’t have a clue what she was doing, she clearly has far too much work on and cannot seem to cope with it. I think I have been to see her only one time where she hasn’t made a mistake either on my prescription or on my appointment card. Writing my date of birth on the appointment card rather than the date of our next appointment, giving me two duplicate methadone scripts instead of a methadone and a diazepam, not giving me a script on time even after I expressly told her “If I do not get it today, I will go into withdrawals and I will have to use to stay well.”, getting the location wrong – eventually she admitted to me that she doesn’t actually know where she is going to be at the time of my appointments; she could be at Tudor Grove, or she might be at the Mare St. location. I respect her more for this honesty than for the usual nonsense they try and feed you to cover up the truth of the matter. They clearly don’t know what they are doing at the Hackney Recovery Service, and I did not work so hard to get the chaos that drugs and addiction bring out of my life in order to have a treatment service reintroduce that chaos.
the original ‘appointment card’
mistake riddled appointment cards
we graduate to post-it notes
and finally, a scrap of paper.
In my experience, all a support worker is, is a big go between, between you and the doctor. I honestly believe that when you get to the stage that I am at in my recovery I should be able to go there between once every 4, 6 or 8 weeks, and be able to see an actual DOCTOR who is capable of answering my concerns. Should I ask any one of these support workers any of the questions that I would like to know answers to, they would not have a clue how to answer me. Questions such as what is the difference between methadone withdrawal and heroin withdrawal? What are some of the primary symptoms of methadone withdrawal? What is the half life of methadone and how does that affects ones reduction and recovery? What can I do to give my body and brain the basic building blocks it needs to recover from long term opiate use? What does long term methadone use deplete in the body and what are some of the long term after effects that can be expected? The truth is, that when it comes to real recovery, they know absolutely nothing and you are on your own.
My point is that treatment services in this country are just horrendous. It is not a treatment or a recovery service at all, it is a prescribing service, and they use that prescription to bully you, to belittle you, to make you feel shame, and they use it as a source of power over you. If you’re going away, on holiday or to visit your family for example, and you need a holiday script to take away, they act like you’re on parole, like you’re a criminal on tag – what right have they got to be asking to see my train tickets and for my families address? It is despicable. I would love to do something to improve services, something that can deliver genuine information on what addicts are going through and what to expect, about how to cope with and make easier the symptoms and discomforts of reduction and the path to sobriety; practical things that we can do to make that process easier. And I have some good ideas about how to do this. But I shall not reveal them here, or anywhere, until I am fully off of this methadone ‘script and far away from the drug treatment services damaging reach. Treatment services are currently the biggest threat to my sobriety and recovery from addiction. It stands in the way of me leading a ‘normal’ life, I feel tremendous stress every time I have to attend the service, and it is constantly hanging over me, never letting me forget I’m still a junkie. Besides giving me the methadone prescription that I need to gradually reduce from dependence, treatment services are the biggest hindrance to my recovery. I know that if I could go there less, and speak with an actual Doctor as opposed to a support worker, who’s knowledge about addiction really does pale in comparison with my own, I know I would be off methadone and reach sobriety twice as fast.
I do not feel that the Hackney Recovery Service have got the right to use the word ‘recovery’ because no one there seems to truly understand or appreciate what it actually means – they certainly don’t promote it. They don’t promote recovery at all.
I’m assuming they merged these three services into one under the banner of ‘improving drug treatment services and positive outcomes’ for everybody across the borough of Hackney but I fail to see how they’re doing that. They certainly have not taken the best of the old services and put that into action, quite the contrary, it seems to me that the best of the previous services has been totally lost. In one foul swoop they managed to undo all the positive work they had done with me, and I shall never, ever trust anybody who works in drug treatment services again for as long as I live. I continue in my treatment, protecting myself by engaging with the service as little as possible, by revealing as little about myself and my recovery as possible because I believe that to allow these so-called support workers access to the delicate inner sanctum that is the root of my addiction would be extremely unwise and would make me extremely vulnerable to relapse. I would be safer admitting these things to my drug dealers and fellow addicts than to any support worker in treatmet services. The only people I am prepared to speak to now on this deep level about my addiction are doctors – actual, real doctors, not smug little uneducated go-betweens that arrogantly call themselves ‘drug support workers’.