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Slide 1…intro
SLIDE 2
Introduction: My name is Erin O’Mara and Im an aussie who has lived in London for the last 30 years,
and I am here today because I have been on injectable prescription of various sorts for 15 years and I
have also spent my career being a local, national and international drug user activist, so I hope I have
something to offer this discussion today.
Click SLIDE 3
Im this presentation I will firstly discuss a bit about the importance of involving our community in the
development and review of injectable services,
Then I will go into more detail about my own experience of injectable services and how I have come to
the conclusions I have, and add in some top tips as we walk our way thru today and while doing this, I
hope to highlight some of the myths we have around injectable prescribing.
But Essentially, I want to talk to you all about control and some of the regulations you believe might be
essential in order to control your service but which actually aren’t – or rather, there are better ways you
can obtain the same results, - without all the stress, grief and worry that overly regulated clinics and
their clientele,-experience.
How much rests with US
I recognize the difficulty here is, that this is no ordinary drug treatment option. Being the first service to
introduce, what I like to think of as the Holy Grail of prescribing, - and perhaps some of the health
professionals involved will know this, is that to proceed which such a treatment model means you will
soon share, with a few other courageous countries, the weight of an entire ideology, you will become,
perhaps unwittingly, quiet ambassadors for this brilliant yet vastly misunderstood drug treatment tool,
and everyone involved in OST injectable prescribing around the world, will be waiting with baited breath
to see how you progress; as today, all our fragile treatment futures appear to be tied to one another, if
one injectable programme FAILS, then we all fail a little….
I understand how the weight of this may also bear down on many shoulders, however, Im a glass half
full kinda gal, and I certainly know OUR community, PWIDs will be standing by in solidarity – and we will
be praying for your courage, your commitment, and your humanity, and will be supporting you to make
an injectable service that, I hope, really hums with opportunity, flexibility and innovation – because we
believe it can be done! But sadly, we usually have to settle for less, or much much less, sometimes
seeing just see snippets of excellence, because bureaucracy and power usually bears down on a
different kind of service and it can strangle the life out of any developing injectable service daring to use
its clipped wings to take flight...
But, like I said, I am an optimist and I KNOW my peers, my comrades, my community. This is where I
really want to stress that PWIDS are a huge reservoir of untapped potential you have to have on your
side when embarking on a quality injectable programme , they can be your strongest allies, a kind of
mirrored support structure, people capable of making a drug service thrive IF they are happy there, and
where they can care about the service and the staff as much as they care about their own treatment.
This is the ideal. “But Is this really possible?” I hear you wonder? Well, YES IT IS – and lucky for you all,
you don’t have to look far for a shining example!
SLIDE 4
One only has to look to our incredible womxn at Metzineres; YOUR service, in YOUR town! A service that
began with next to nothing in terms of money, yet because they were dedicated, innovative and
courageous, they managed to make the kind of service for women who use drugs that are also escaping
violence, actually want to come to, to spend their free time at, to even protest in the streets with, to cry,
laugh, feel safe and secure at, ,.... At Metzineres, they GET IT.
In my opinion, after 30 years of seeing drug services and drop ins from around the world, the wonderful
women at Metzineres encapsulate the very essence of how to make a meaningful service fit for purpose
that and much, much more. As some of you will know, they even all worked together to turn the local
obstructive community into a supportive force, they brought homemade paella to the local community
park and shared it with the locals! The locals actually love them today, Ive seen it with my own eyes!
Oh it isnt easy, but it isnt rocket science either.
Click SLIDE 5
I could rave about Metzineres all day because it is the very definition of what we now know as
Meaningful Involvement. (And It really is THAT important) . This is a service that defines the gold
standard of care and support - but it does so BECAUSE of its meaningful involvement… It communicates
with its service users, day in, day out, all the while the service lives, develops and empowers every
woman who comes within its orbit. This is the kind of service we should be talking to and looking at,
when thinking about how we can involve users in a way that makes a difference and doesn’t simply
become another loosely fitted bandaid on a leg that’s falling off….
Now I do realise that an injectable service will have the beady eyes of Spanish citizens bearing down
upon it, and you may be thinking the only way ahead is by using some extremely tight regulations and
protocols. But I want to use this speech today to tell you that that, just isnt true.. That there are ways of
prescribing injectables to make them fulfill both your obligations and the clients needs.
Now most of you will probably know that it is from the Swiss where we get todays injectable clinic
template from, but I just want to add, the ‘on-site injectable treatment option’ of the Swiss began in
1992 – that was 32 years ago!!!! And many would like to think we are ready to move forward and be a
little braver in our prescribing of injectables, we know it works brilliantly, so lets look at shaping the
template to make life better for everyone.
By working together with your clientele in the design, implementation and reviewing of your injectable
service, you really can build a service that will easily meet your targets of reduced crime, virtually no
illicit drug use and increasingly healthy and happy people. It really isnt that hard if you prescribe a drug
like diamorphine or hydromorphone–but - just as important is that
CLICK SLIDE 6
- you regularly strive to improve your service based on working together with your clientele and -
you have the structures in place to ensure client concerns get regularly addressed and your
solutions are flexible, changeable if they don’t work, and even innovative – and trust me, there
is LOTS of room for innovation!
But bury your service in weighty regulations, punitive rules and inflexible protocols, and people will
begin to drop out. They wont thrive as we all want them to, and We will end up voting with our feet -
and possibly go back to the street – anything, just to have a bit of control back in our own lives. I have
seen it happen. Ive done it myself. Because even dangling high doses of diamorphine in front of our
faces is not enough if the clinic looms too large over your very existence with its inflexibility, its
unwanted interference in your life, its rather creepy demands to hover over you as you inject, or simply
its premise of distrust – like making u travel daily between some teeny window of, lets say, 9-11am, to
shoot up on site once or twice a day, 365 days a year - all because they don’t trust you to take it home.
CLICK - slide 7- where is the trust? Start as you mean to go on!).
All of these things happen daily in injectable clinics, and I have experienced them all - and none of them
are necessary. And I hope to try and explain here briefly, why its ok – why its essential - to ease up on
the controls a bit..
I have learnt, over many years, just what are the things that make up a good treatment service, and the
things that make the whole experience a misery. But before I start, let me just go over my ‘credentials’
regarding my experience with injectable treatments, and then ill talk about some of my different
treatment experiences and ill also slip in a few good prescribing tips along the way.
Click Slide 8
My experience:
But regarding myself, I started injecting at 15, by 17 I had a heroin habit and was a sex worker for about
6-7 years in kings Cross, Sydney Australia, as well as London. I also started methadone back then, and
would constantly bounce from one methadone clinic to the next for the next 15 years and because I
could never adapt to methadone, I seemed to just drag my life and my health through the streets of
Sydney and London til I really couldn’t take it anymore. I got HIV and HCV and was losing almost every
vein from my neck to my feet. You all know by now how rough things can get, I don’t need to explain
that bit.
I will go on to tell you today how a good approach to diamorphine prescribing changed my whole life –
and took me from the street to taking part in events at the united nations. I can honestly say that, no
there was no ‘wife’ behind me, - but there was a good solid diamorphine programme that stood
behind me all the way, allowing me to flourish and move forward.
But before that, let me just layout my injectable credentials, shall we say.
CLICK slide 9
Since around 97/98, I have experienced 6 different injectable services. Mostly diamorphine but also
injectable morphine and injectable methadone. Those 6 pretty much covered, I think, the spectrum of
UK injectable prescribing - at one end was the clinic from hell, at the other was the best example you
could hope for. And the rest were somewhere in the middle.
So I don’t have time to tell you about all 6, so Im gonna focus here on the best and the worst – and I
hope these stories will explain how I got to the following tip suggestions I have here for you today.
So Ill start with the worst so we can end finally on a better note.
I discovered my first diamorphine trial in London, at Chelsea and Westminster Hospital, it was actually a
trial but it produced the clinic from hell. This place was where I discovered that, even with the massively
tempting carrot of sterile diamorphine injectables, your freedom and your mental health, were actually
more important.
The problems at this clinic were many. From the outset their was blunders, suspicion and distrust, not to
mention humiliation, the resulting degradation and general overall stress and misery.
First bad choice - , The power imbalance between staff and clients seemed insurmountable – and
believe me, we tried to even proceedings; And such was their fear of user involvement, or starting a
service user group or even having discussions or papers aimed at trying to sort out the many problems
we experienced at the service, it only went towards blank stares and worse, making this place the most
disempowering place I have ever been too – even though they were prescribing the drug I needed most
- diamorphine. They actually bore down on the ‘troublemakers’ basically until we left. Which brings me
to tip 1:-
Click slide 10
TIP ONE: Embrace User involvement! Ease up with the control and suspicion, and start with more
trust.
So how else was this place so hellish in ways I urge you not to repeat! It was really, essentially, about
the control they exercised over your life.
Now they Let us take it home - but the dose here was too low and being a trial that was
developed on that basis – the same smallish dose for everyone - it was also immoveable - everyone had
basically exactly the same. Which was just too low, again because they never bothered to ask us or
work with us around what could work for each person. If they had asked, we could have saved them and
ourselves, a whole lot of grief.
CLICK SLIDE 11-
Tip 2: Don’t cap the dose We are all individuals and it’s a complete myth that we will just ask for
more and more, I can absolutely guarantee you that does not happen. Everyone Ive ever met, and even
in Switzerland where they can basically have what they want – no-one really goes above 500mg –with
most settling somewhere around 350mg over an entire 24hr cycle.
But they used control in many other ways. Daily trips to the clinic meant – 45mins to get there,
45 minutes hanging around, longer if u had appoints, 45 minutes back, 45 minutes getting dosed at
home and having a coffee – so that’s 3 hours of ones day revolved around the clinic. (Imagine if you had
to do that twice a day – that is 6 hours potentially out of your day!!
SLIDE 12 WTF?!
You just couldn’t get the time to break away and move forward. You whole head, and most of
your social circle still revolved around the clinic. My friend did manage to start law at Uni, but travelling
became such an issue that he dropped out after 12 months. So – tip 3
CLIDE SLIDE 13
Tip 3: Don’t make the clinic the centre of peoples lives!!! Everyone needs to feel like we have
some control in our lives!.
But my friends and I were struggling for yet more reasons….
They had punishments like reducing your script even further if you used on top of your lowly dose, with
anything. And people did, not a lot, but sometimes we would end up using our whole tiny script by the
afternoon so by the next morning we would literally be in withdrawals while trying to make OUR way
across town yet again. So sometimes we would use. But that left you in an ever decreasing script
reduction spiral, which only made matters worse.
They also went to the toilet with you for urine tests, they would refuse to dose us if we lost or
forgot to return the empty ampoules – I hope we have time to talk about the mytholofy around
diversion altho I have included in my extra tips – which are all available to you, if you leave your email
with me at the break.
So, You also had to be there between 9-11am every day, not one single minute later, (or you wouldn’t
be dosed) and even tho we had take homes on Sundays, but there were no other days off all year every
year. I ask you WHY?… Basically, there was a myriad of things that made it hellish to attend. We were all
deeply unhappy and we hid things. Lots of things. About our health, about our lives. Coz we were
scared. And I mean it when I say it was traumatic, not just for me but my family who would have to
listen to me cry into the phone too often.
CLICK SLIDE 14
Tip 4 - Never use punishments – You don’t need them to be effective –they have the opposite result.
I desperately hope we have moved away from those days a bit – so I wont go on more –and we need to
get to the good story -. Suffice to say – not involving us in this service made it a place that started out on
the back foot, and remained there, becoming a place that was just hell to go to. People drifted away.
So after about 18months I left and went back to the pretty crazed and unhealthy existence of daily
blackmarket street drug use on top of, this time, injectable methadone, a pretty horrible and scarring
kind of drug that for some reason British doctors are more able to give you than diamorphine for which
you need a special license that is also tied to a special location. There is only about 150-200 of us left on
diamorphine today.
But Let me move quickly on to the best treatment I experienced.
After an awful stint of 18months on injectable methadone, I got on at the Maudsley Hospital. I wont go
into how, only that it was as hard as moving mountains. And I was lucky, It was the Old British System,
one doctor, find your dose level, pick it up from your local chemist round the corner from where you
live, pick-ups which went from daily, to a few times a week, to weekly. Now by the time I got to the
Maudsley, I had a habit on crack, heroin, methadone, I was taking benzos and for the first time, even
drinking alcohol!
But my dr learnt along with me. First I was prescribed 550mg diamorph daily and I picked up daily at my
chemist. Now transformation dosent happen overnight. You must allow us some room and have the
right support available when and if we need it. I was a mess when I started remember. What happened
to me – and this brings me to my last and possibly most important point – was that because stabilizing
meant getting out of my surroundings, which had become a total mess by then, and which depressed
me no end, my Dr, Dr Emily Finch bless her heart, allowed me to take my prescription to my mothers in
the country. For 3 months I stayed with her, I picked up at mums local chemist, saw Dr Finch every 2
weeks in London and got a new script, and in the interim, mum and I would come back to London and
clear out my house, until it was all lovely and I moved back in, stable, happy and working hard on the
first British, drug user run health and harm reduction magazine Black Poppy, which would continue for
another 10 years.
CLICK SLIDE 15
So the 6th
tip is -
Tip 5 Allow takeaways! This is crucial. The clinic can connect with our families, even once or twice as in
my case, but let us go and stay with them if possible –JUST make it easier not harder to do the things
that help. If that hadn’t of happened I don’t know if I would of made it through. I was never punished, I
had virtually no urine tests coz she wud ask me and I would just tell her if I had something, the odd party
drug was about it, (I was much younger then after all!) .
But as well as establishing Britains first, rather famous, user magazine, I also became a local, then
national, then international activist, and was able to go all the way in my work to the United Nations
itself. I could never ever have done that without take home dosing, and a flexible open approach from
my doctor..
CLICJK SLIDE 16
And tip 6 – be flexible not inflexible.
I could say so much more about why it was successful, how dr finch let me try diamorphine tablets when
I wanted to stop injecting, and when that didn’t work so well, she let me try tablets 3 days a week,
injections 4 days a week.. She was flexible. She let me attend and speak at conferences all around the
world, coz she knew it had meaning in my life. She worked individually with her patients, we all had
different issues after all, and we built up great trust – and my whole life turned 360 degrees.
This flexible, open and honest approach changed my entire life. I was also on the steering group for the
on site injecting trial called RIOTT in London, but I saw people just weren’t keen to take it up in decent
numbers, which is really tragic considering the opportunity it held, and I don’t think it was as successful
as it could have been because people basically never left the confines of the clinic.
I cannot stress how important it is to allow people the chance to move away from their clinic, start
thinking of themselves as a community member – something they just cant do when their entire life
revolves around their treatment service.
So That’s my time up – as I said I have more tips on my handout here, write down your email and Ill send
you a copy of the tips and powerpoint.
Click Slide 17
So I wish you the greatest success going forward –I hope you might take home a few thoughts from this
today and keep in mind that these programmes can be so empowering, so life changing if you go
forward in trust – trust us – and I know you will create a service that thrives.
TIPS:
Tip 1: User involvement will sort out the bumps and the curves in the road and make the place happier
for everyone. Embrace it. In the planning, implementation, and reviewing of your service! Ensure you
have structures in place that will guarantee dialogue and concerns are aired regularly
Tip 2: Don’t cap the doses, ensure they are individualised.
Tolerance settles. High doses of opiates consistently just make a person tired, and we don’t
wanna be over tired all the time, but we need to feel safe enough to reduce. Make sure it is not too
difficult in the beginning to change doses up and down, people always settle down on average doses,
don’t worry!
Tip 3: Don’t make the clinic become the centre of peoples lives! It should be the least intrusive way of
prescribing you can manage. People have to stabilize, get time to get their heads together, think about
school and college.
Tip 4 - Never use punishments – You don’t need them to be effective –they have the opposite result.
Clients WANT to be honest, so create an environment free of punishments and people will tell you what
they are doing, if anything. Don’t over panic about clients using on top – 95% of the time it wont be
heroin anyway, but may be the odd party drug or coke. We ARE drug users after all. Let people talk and
together you can find ways of making changes in the persons life to reduce any extra drug use. People
will share if they are starting to have a problem (eg with coke). But it can happen, and that’s ok, no one
wants a problem so will be eager for support if they feel able to discuss the issue with you (the clinic)
Tip 5: Utilise take aways –don’t have to start straight away –people can start daily and after 6-8 weeks
go twice weekly. MUST Utilise Take Aways! – There are many ways to ensure this is safe for the regulators:
People can start picking up or injecting at the clinic daily and when settled they get take home doses, once a day,
twice a week, weekly. But NEVER make the clinic a constant in peoples lives! Utilise local pharmacies for a daily
pick-up that is around the corner from their home; Use other OST services like Harm Reduction /injecting Centres
that are more local for the client to inject on site. Last resort: You can have injectables at the clinic if you
absolutely have to, but at least you MUST let people have the evening shot at home
Tip 6: Diversion There is a lot of fears around diversion – that we might create a whole new sterile
heroin blackmarket and the public will go crazy. Its actually a MYTH. But firstly, let me say, heroin
dependent users are NOT going to sell THEIR ‘holy grail ampoules’ – for street heroin! WHY?? It is crazy
and in my large experience it almost never happens. Also – for the clinic if worried, I state that its an
easy fix, (excuse the pun!) we 1) just return our empty ampoules. They all have a serial number on them,
its easy to monitor them and hardly anyone is going to buy drugs blindly, just liquid already mixed up in
a syringe these days. No 2) Diversion isnt the nightmare you think. It saves lives. Why? Because
someone buying your sterile drugs off you now and again, is usually coz they are desperate and looking
for heroin. What do you think they should have – a sterile, measured amount off you, where they know
exactly what they get, or blackmarket smack–and lucky dibs?
Tip 7 get the drug correct. Ask First!! And trial it by your clients. Hopefully hydromorphone will be the
way to go, said the happier Canadians, but if you use something else ASK US FIRST! Try other opiates,
like methadone tablets, 24hr Morphine or 12 hr morphine tablets or patches to add to injectables - a
combination so one has some longer lasting opiate in the background can be REALLY important when
using a short acting drug like hydromorphone or diamorphine. Just keeps the brain chemistry on a
plateau as well.
Tip 8: Exit Strategies: People will always want to come off treatment, but it is a very scary thing to do. It
is essential that you make it clear to the person that they can come back easily if they leave, its ok, they
don’t need to worry they will be forgotton if they relapse. Relapses happen often and they should be
able to try again. But if you make it hard or impossible for people to come back, you risk letting them fall
again by the wayside and lose all that progress by going back to the street or methadone linctus, the
drug that never worked for them in the first place.
Tip 9: NO to drug manufacturer Monopolies! It is essential to ensure there isnt a single supplier of your
treatment drug. Or, if there is, make sure your client group are ringfenced –to make sure that should
any manufacturing crisis occur, that hospital patients AND PWIDs at your service, will be the FIRST to get
their drugs. Britain has had this problem repeatedly, having two, then one manufacturer –and we have
had regular diamorphine ‘droughts’ where people end up not getting their medication and the result is
to destabilize clients who are often in their 50s and 60s and have been stable for years – spiraling them
back down onto the street –in a matter of weeks!~! Ive seen it – coz it happened to me as well as many
others!
Tip 10: Offer access to CBT training for people who want to change from IV injecting to IM injecting.
Many older users may want to try this out – its critical to be supportive and experiment along with the
person to help them with the transition. IV use is a very ingrained habit and it needs to be carefully
‘unplugged’ and IM injecting replacing it. Cognitive Behavioural Therapy can be useful for this. Don’t
hover over people injecting, it is extremely personal (I think its like being naked) and unpleasant when
someone is watching you. You can address injecting behaviours by doing short classes, ideally peer led
or run together with a peer and a doctor or harm reduction person. There are some pretty bad injecting
habits people have so instead of making them feel bad etc, educate people with lessons on good
technique, tourniquet use, etc. Consider other peer led training such as naloxone and ensure everyone
is naloxone trained and has a few doses at home.
Tip 11: Make alliances with local drop ins, hopeless services, adult education services and harm
reduction centres. Whether its for using injecting centres for drug pickup and/or using at, Its good to
share ideas, let your clients know about the services around them (in the only client study of injecting
rooms across Europe, the no.1 reason people attended them was to combat isolation! So getting people
out of the house is a positive thing to encourage and making other services available and known about,
will ensure people use them, but under their own control, which is essential.
Tip 12: When moving in to a new area to set up the clinic, make an effort to introduce both health
professionals, government suppporters and, crucially, the clientele themselves. Let people talk to each
other, explain how the service will run, bring a person from the successful injecting centre in Granada to
talk to the locals and explain how this treatment will change peoples lives. Encourage loccals to come to
a meeting using a big lunch – ask Metzineres, they did this brilliantly and won over their community with
a big dish of home made paella!
Tip 12: Encourage family involvement if a client wishes it. Families can be a fantastic source of stability,
and it can be good for them to meet the clinic staff and feel more knowledgable about the treatment.
Also, this helps when people want to stay with their families somewhere else for a few weeks here and
there. These breaks can be sooo important, especially if a person is struggling with poly drug use, ensure
you work with the client and allow pickup from a local pharmacy or another closer harm reduction
service. Getting away from ones own environment, especially at first, can be really important to allow
people to stabilize. Even if they have to go to the chemist every day to collect their medication, if they
can go back to the families home afterwards, it can speed up the stabilizing process by weeks or months.
Make breaks away a part of the programme, not an odd occurance.
Tip 13: Allow PRIVATE time for client only meetings and allow such groups to flourish (see also tip 1).
You can pay expenses to a peer organizer who can run meetings where people can talk about more than
just clinic concerns – discuss injecting techniques, and health issues. Get a gauge of peoples knowledge
and work with the group to help find solutions to their group issues outside the clinic eg: constipation,
procrastination, varicose veins/cellulitis etc if a problem for older injectors, peoples feelings around
changing from IV to IM injecting, isolation…Provide a way for the group to feed into the service itself if it
needs solutions. Be open to such support needs as they are often very important to ones progress and
stability and have possibly never been acknowledged or discussed before. Bring in speakers eg on
health and harm reduction issues.
Tip 14: Encourage people to write their stories, their experience of the treatment, both before, during
and after transition to injectables. These stories are often great ways to tell the clinics story to the public
(anonymous etc) and share the with other treatment services around the world. Injectable clinics are
rare across the globe, and statistics about progress are often dry and boring and don’t say much about
the reality at the clinic. But the drug treatment toolbox needs to evolve – we need better, more
innovative treatment options and we need to know about it when treatment is a success for the people
and staff. Stories are a great way of recording this progress (you could pay people a small fee for taking
part) and it will help keep the public on your side.

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Mesa 3.3_ErinOMara_speech.pdf

  • 1. Slide 1…intro SLIDE 2 Introduction: My name is Erin O’Mara and Im an aussie who has lived in London for the last 30 years, and I am here today because I have been on injectable prescription of various sorts for 15 years and I have also spent my career being a local, national and international drug user activist, so I hope I have something to offer this discussion today. Click SLIDE 3 Im this presentation I will firstly discuss a bit about the importance of involving our community in the development and review of injectable services, Then I will go into more detail about my own experience of injectable services and how I have come to the conclusions I have, and add in some top tips as we walk our way thru today and while doing this, I hope to highlight some of the myths we have around injectable prescribing. But Essentially, I want to talk to you all about control and some of the regulations you believe might be essential in order to control your service but which actually aren’t – or rather, there are better ways you can obtain the same results, - without all the stress, grief and worry that overly regulated clinics and their clientele,-experience. How much rests with US I recognize the difficulty here is, that this is no ordinary drug treatment option. Being the first service to introduce, what I like to think of as the Holy Grail of prescribing, - and perhaps some of the health professionals involved will know this, is that to proceed which such a treatment model means you will soon share, with a few other courageous countries, the weight of an entire ideology, you will become, perhaps unwittingly, quiet ambassadors for this brilliant yet vastly misunderstood drug treatment tool, and everyone involved in OST injectable prescribing around the world, will be waiting with baited breath to see how you progress; as today, all our fragile treatment futures appear to be tied to one another, if one injectable programme FAILS, then we all fail a little….
  • 2. I understand how the weight of this may also bear down on many shoulders, however, Im a glass half full kinda gal, and I certainly know OUR community, PWIDs will be standing by in solidarity – and we will be praying for your courage, your commitment, and your humanity, and will be supporting you to make an injectable service that, I hope, really hums with opportunity, flexibility and innovation – because we believe it can be done! But sadly, we usually have to settle for less, or much much less, sometimes seeing just see snippets of excellence, because bureaucracy and power usually bears down on a different kind of service and it can strangle the life out of any developing injectable service daring to use its clipped wings to take flight... But, like I said, I am an optimist and I KNOW my peers, my comrades, my community. This is where I really want to stress that PWIDS are a huge reservoir of untapped potential you have to have on your side when embarking on a quality injectable programme , they can be your strongest allies, a kind of mirrored support structure, people capable of making a drug service thrive IF they are happy there, and where they can care about the service and the staff as much as they care about their own treatment. This is the ideal. “But Is this really possible?” I hear you wonder? Well, YES IT IS – and lucky for you all, you don’t have to look far for a shining example! SLIDE 4 One only has to look to our incredible womxn at Metzineres; YOUR service, in YOUR town! A service that began with next to nothing in terms of money, yet because they were dedicated, innovative and courageous, they managed to make the kind of service for women who use drugs that are also escaping violence, actually want to come to, to spend their free time at, to even protest in the streets with, to cry, laugh, feel safe and secure at, ,.... At Metzineres, they GET IT. In my opinion, after 30 years of seeing drug services and drop ins from around the world, the wonderful women at Metzineres encapsulate the very essence of how to make a meaningful service fit for purpose that and much, much more. As some of you will know, they even all worked together to turn the local obstructive community into a supportive force, they brought homemade paella to the local community park and shared it with the locals! The locals actually love them today, Ive seen it with my own eyes!
  • 3. Oh it isnt easy, but it isnt rocket science either. Click SLIDE 5 I could rave about Metzineres all day because it is the very definition of what we now know as Meaningful Involvement. (And It really is THAT important) . This is a service that defines the gold standard of care and support - but it does so BECAUSE of its meaningful involvement… It communicates with its service users, day in, day out, all the while the service lives, develops and empowers every woman who comes within its orbit. This is the kind of service we should be talking to and looking at, when thinking about how we can involve users in a way that makes a difference and doesn’t simply become another loosely fitted bandaid on a leg that’s falling off…. Now I do realise that an injectable service will have the beady eyes of Spanish citizens bearing down upon it, and you may be thinking the only way ahead is by using some extremely tight regulations and protocols. But I want to use this speech today to tell you that that, just isnt true.. That there are ways of prescribing injectables to make them fulfill both your obligations and the clients needs. Now most of you will probably know that it is from the Swiss where we get todays injectable clinic template from, but I just want to add, the ‘on-site injectable treatment option’ of the Swiss began in 1992 – that was 32 years ago!!!! And many would like to think we are ready to move forward and be a little braver in our prescribing of injectables, we know it works brilliantly, so lets look at shaping the template to make life better for everyone. By working together with your clientele in the design, implementation and reviewing of your injectable service, you really can build a service that will easily meet your targets of reduced crime, virtually no illicit drug use and increasingly healthy and happy people. It really isnt that hard if you prescribe a drug like diamorphine or hydromorphone–but - just as important is that
  • 4. CLICK SLIDE 6 - you regularly strive to improve your service based on working together with your clientele and - you have the structures in place to ensure client concerns get regularly addressed and your solutions are flexible, changeable if they don’t work, and even innovative – and trust me, there is LOTS of room for innovation! But bury your service in weighty regulations, punitive rules and inflexible protocols, and people will begin to drop out. They wont thrive as we all want them to, and We will end up voting with our feet - and possibly go back to the street – anything, just to have a bit of control back in our own lives. I have seen it happen. Ive done it myself. Because even dangling high doses of diamorphine in front of our faces is not enough if the clinic looms too large over your very existence with its inflexibility, its unwanted interference in your life, its rather creepy demands to hover over you as you inject, or simply its premise of distrust – like making u travel daily between some teeny window of, lets say, 9-11am, to shoot up on site once or twice a day, 365 days a year - all because they don’t trust you to take it home. CLICK - slide 7- where is the trust? Start as you mean to go on!). All of these things happen daily in injectable clinics, and I have experienced them all - and none of them are necessary. And I hope to try and explain here briefly, why its ok – why its essential - to ease up on the controls a bit..
  • 5. I have learnt, over many years, just what are the things that make up a good treatment service, and the things that make the whole experience a misery. But before I start, let me just go over my ‘credentials’ regarding my experience with injectable treatments, and then ill talk about some of my different treatment experiences and ill also slip in a few good prescribing tips along the way. Click Slide 8 My experience: But regarding myself, I started injecting at 15, by 17 I had a heroin habit and was a sex worker for about 6-7 years in kings Cross, Sydney Australia, as well as London. I also started methadone back then, and would constantly bounce from one methadone clinic to the next for the next 15 years and because I could never adapt to methadone, I seemed to just drag my life and my health through the streets of Sydney and London til I really couldn’t take it anymore. I got HIV and HCV and was losing almost every vein from my neck to my feet. You all know by now how rough things can get, I don’t need to explain that bit. I will go on to tell you today how a good approach to diamorphine prescribing changed my whole life – and took me from the street to taking part in events at the united nations. I can honestly say that, no there was no ‘wife’ behind me, - but there was a good solid diamorphine programme that stood behind me all the way, allowing me to flourish and move forward. But before that, let me just layout my injectable credentials, shall we say. CLICK slide 9 Since around 97/98, I have experienced 6 different injectable services. Mostly diamorphine but also injectable morphine and injectable methadone. Those 6 pretty much covered, I think, the spectrum of UK injectable prescribing - at one end was the clinic from hell, at the other was the best example you could hope for. And the rest were somewhere in the middle.
  • 6. So I don’t have time to tell you about all 6, so Im gonna focus here on the best and the worst – and I hope these stories will explain how I got to the following tip suggestions I have here for you today. So Ill start with the worst so we can end finally on a better note. I discovered my first diamorphine trial in London, at Chelsea and Westminster Hospital, it was actually a trial but it produced the clinic from hell. This place was where I discovered that, even with the massively tempting carrot of sterile diamorphine injectables, your freedom and your mental health, were actually more important. The problems at this clinic were many. From the outset their was blunders, suspicion and distrust, not to mention humiliation, the resulting degradation and general overall stress and misery. First bad choice - , The power imbalance between staff and clients seemed insurmountable – and believe me, we tried to even proceedings; And such was their fear of user involvement, or starting a service user group or even having discussions or papers aimed at trying to sort out the many problems we experienced at the service, it only went towards blank stares and worse, making this place the most disempowering place I have ever been too – even though they were prescribing the drug I needed most - diamorphine. They actually bore down on the ‘troublemakers’ basically until we left. Which brings me to tip 1:- Click slide 10 TIP ONE: Embrace User involvement! Ease up with the control and suspicion, and start with more trust. So how else was this place so hellish in ways I urge you not to repeat! It was really, essentially, about the control they exercised over your life. Now they Let us take it home - but the dose here was too low and being a trial that was developed on that basis – the same smallish dose for everyone - it was also immoveable - everyone had basically exactly the same. Which was just too low, again because they never bothered to ask us or work with us around what could work for each person. If they had asked, we could have saved them and ourselves, a whole lot of grief.
  • 7. CLICK SLIDE 11- Tip 2: Don’t cap the dose We are all individuals and it’s a complete myth that we will just ask for more and more, I can absolutely guarantee you that does not happen. Everyone Ive ever met, and even in Switzerland where they can basically have what they want – no-one really goes above 500mg –with most settling somewhere around 350mg over an entire 24hr cycle. But they used control in many other ways. Daily trips to the clinic meant – 45mins to get there, 45 minutes hanging around, longer if u had appoints, 45 minutes back, 45 minutes getting dosed at home and having a coffee – so that’s 3 hours of ones day revolved around the clinic. (Imagine if you had to do that twice a day – that is 6 hours potentially out of your day!! SLIDE 12 WTF?! You just couldn’t get the time to break away and move forward. You whole head, and most of your social circle still revolved around the clinic. My friend did manage to start law at Uni, but travelling became such an issue that he dropped out after 12 months. So – tip 3 CLIDE SLIDE 13 Tip 3: Don’t make the clinic the centre of peoples lives!!! Everyone needs to feel like we have some control in our lives!. But my friends and I were struggling for yet more reasons…. They had punishments like reducing your script even further if you used on top of your lowly dose, with anything. And people did, not a lot, but sometimes we would end up using our whole tiny script by the afternoon so by the next morning we would literally be in withdrawals while trying to make OUR way across town yet again. So sometimes we would use. But that left you in an ever decreasing script reduction spiral, which only made matters worse. They also went to the toilet with you for urine tests, they would refuse to dose us if we lost or forgot to return the empty ampoules – I hope we have time to talk about the mytholofy around
  • 8. diversion altho I have included in my extra tips – which are all available to you, if you leave your email with me at the break. So, You also had to be there between 9-11am every day, not one single minute later, (or you wouldn’t be dosed) and even tho we had take homes on Sundays, but there were no other days off all year every year. I ask you WHY?… Basically, there was a myriad of things that made it hellish to attend. We were all deeply unhappy and we hid things. Lots of things. About our health, about our lives. Coz we were scared. And I mean it when I say it was traumatic, not just for me but my family who would have to listen to me cry into the phone too often. CLICK SLIDE 14 Tip 4 - Never use punishments – You don’t need them to be effective –they have the opposite result. I desperately hope we have moved away from those days a bit – so I wont go on more –and we need to get to the good story -. Suffice to say – not involving us in this service made it a place that started out on the back foot, and remained there, becoming a place that was just hell to go to. People drifted away. So after about 18months I left and went back to the pretty crazed and unhealthy existence of daily blackmarket street drug use on top of, this time, injectable methadone, a pretty horrible and scarring kind of drug that for some reason British doctors are more able to give you than diamorphine for which you need a special license that is also tied to a special location. There is only about 150-200 of us left on diamorphine today. But Let me move quickly on to the best treatment I experienced. After an awful stint of 18months on injectable methadone, I got on at the Maudsley Hospital. I wont go into how, only that it was as hard as moving mountains. And I was lucky, It was the Old British System, one doctor, find your dose level, pick it up from your local chemist round the corner from where you live, pick-ups which went from daily, to a few times a week, to weekly. Now by the time I got to the Maudsley, I had a habit on crack, heroin, methadone, I was taking benzos and for the first time, even drinking alcohol!
  • 9. But my dr learnt along with me. First I was prescribed 550mg diamorph daily and I picked up daily at my chemist. Now transformation dosent happen overnight. You must allow us some room and have the right support available when and if we need it. I was a mess when I started remember. What happened to me – and this brings me to my last and possibly most important point – was that because stabilizing meant getting out of my surroundings, which had become a total mess by then, and which depressed me no end, my Dr, Dr Emily Finch bless her heart, allowed me to take my prescription to my mothers in the country. For 3 months I stayed with her, I picked up at mums local chemist, saw Dr Finch every 2 weeks in London and got a new script, and in the interim, mum and I would come back to London and clear out my house, until it was all lovely and I moved back in, stable, happy and working hard on the first British, drug user run health and harm reduction magazine Black Poppy, which would continue for another 10 years. CLICK SLIDE 15 So the 6th tip is - Tip 5 Allow takeaways! This is crucial. The clinic can connect with our families, even once or twice as in my case, but let us go and stay with them if possible –JUST make it easier not harder to do the things that help. If that hadn’t of happened I don’t know if I would of made it through. I was never punished, I had virtually no urine tests coz she wud ask me and I would just tell her if I had something, the odd party drug was about it, (I was much younger then after all!) . But as well as establishing Britains first, rather famous, user magazine, I also became a local, then national, then international activist, and was able to go all the way in my work to the United Nations itself. I could never ever have done that without take home dosing, and a flexible open approach from my doctor.. CLICJK SLIDE 16 And tip 6 – be flexible not inflexible. I could say so much more about why it was successful, how dr finch let me try diamorphine tablets when I wanted to stop injecting, and when that didn’t work so well, she let me try tablets 3 days a week,
  • 10. injections 4 days a week.. She was flexible. She let me attend and speak at conferences all around the world, coz she knew it had meaning in my life. She worked individually with her patients, we all had different issues after all, and we built up great trust – and my whole life turned 360 degrees. This flexible, open and honest approach changed my entire life. I was also on the steering group for the on site injecting trial called RIOTT in London, but I saw people just weren’t keen to take it up in decent numbers, which is really tragic considering the opportunity it held, and I don’t think it was as successful as it could have been because people basically never left the confines of the clinic. I cannot stress how important it is to allow people the chance to move away from their clinic, start thinking of themselves as a community member – something they just cant do when their entire life revolves around their treatment service. So That’s my time up – as I said I have more tips on my handout here, write down your email and Ill send you a copy of the tips and powerpoint. Click Slide 17 So I wish you the greatest success going forward –I hope you might take home a few thoughts from this today and keep in mind that these programmes can be so empowering, so life changing if you go forward in trust – trust us – and I know you will create a service that thrives. TIPS: Tip 1: User involvement will sort out the bumps and the curves in the road and make the place happier for everyone. Embrace it. In the planning, implementation, and reviewing of your service! Ensure you have structures in place that will guarantee dialogue and concerns are aired regularly Tip 2: Don’t cap the doses, ensure they are individualised. Tolerance settles. High doses of opiates consistently just make a person tired, and we don’t wanna be over tired all the time, but we need to feel safe enough to reduce. Make sure it is not too
  • 11. difficult in the beginning to change doses up and down, people always settle down on average doses, don’t worry! Tip 3: Don’t make the clinic become the centre of peoples lives! It should be the least intrusive way of prescribing you can manage. People have to stabilize, get time to get their heads together, think about school and college. Tip 4 - Never use punishments – You don’t need them to be effective –they have the opposite result. Clients WANT to be honest, so create an environment free of punishments and people will tell you what they are doing, if anything. Don’t over panic about clients using on top – 95% of the time it wont be heroin anyway, but may be the odd party drug or coke. We ARE drug users after all. Let people talk and together you can find ways of making changes in the persons life to reduce any extra drug use. People will share if they are starting to have a problem (eg with coke). But it can happen, and that’s ok, no one wants a problem so will be eager for support if they feel able to discuss the issue with you (the clinic) Tip 5: Utilise take aways –don’t have to start straight away –people can start daily and after 6-8 weeks go twice weekly. MUST Utilise Take Aways! – There are many ways to ensure this is safe for the regulators: People can start picking up or injecting at the clinic daily and when settled they get take home doses, once a day, twice a week, weekly. But NEVER make the clinic a constant in peoples lives! Utilise local pharmacies for a daily pick-up that is around the corner from their home; Use other OST services like Harm Reduction /injecting Centres that are more local for the client to inject on site. Last resort: You can have injectables at the clinic if you absolutely have to, but at least you MUST let people have the evening shot at home Tip 6: Diversion There is a lot of fears around diversion – that we might create a whole new sterile heroin blackmarket and the public will go crazy. Its actually a MYTH. But firstly, let me say, heroin dependent users are NOT going to sell THEIR ‘holy grail ampoules’ – for street heroin! WHY?? It is crazy and in my large experience it almost never happens. Also – for the clinic if worried, I state that its an easy fix, (excuse the pun!) we 1) just return our empty ampoules. They all have a serial number on them, its easy to monitor them and hardly anyone is going to buy drugs blindly, just liquid already mixed up in a syringe these days. No 2) Diversion isnt the nightmare you think. It saves lives. Why? Because someone buying your sterile drugs off you now and again, is usually coz they are desperate and looking
  • 12. for heroin. What do you think they should have – a sterile, measured amount off you, where they know exactly what they get, or blackmarket smack–and lucky dibs? Tip 7 get the drug correct. Ask First!! And trial it by your clients. Hopefully hydromorphone will be the way to go, said the happier Canadians, but if you use something else ASK US FIRST! Try other opiates, like methadone tablets, 24hr Morphine or 12 hr morphine tablets or patches to add to injectables - a combination so one has some longer lasting opiate in the background can be REALLY important when using a short acting drug like hydromorphone or diamorphine. Just keeps the brain chemistry on a plateau as well. Tip 8: Exit Strategies: People will always want to come off treatment, but it is a very scary thing to do. It is essential that you make it clear to the person that they can come back easily if they leave, its ok, they don’t need to worry they will be forgotton if they relapse. Relapses happen often and they should be able to try again. But if you make it hard or impossible for people to come back, you risk letting them fall again by the wayside and lose all that progress by going back to the street or methadone linctus, the drug that never worked for them in the first place. Tip 9: NO to drug manufacturer Monopolies! It is essential to ensure there isnt a single supplier of your treatment drug. Or, if there is, make sure your client group are ringfenced –to make sure that should any manufacturing crisis occur, that hospital patients AND PWIDs at your service, will be the FIRST to get their drugs. Britain has had this problem repeatedly, having two, then one manufacturer –and we have had regular diamorphine ‘droughts’ where people end up not getting their medication and the result is to destabilize clients who are often in their 50s and 60s and have been stable for years – spiraling them back down onto the street –in a matter of weeks!~! Ive seen it – coz it happened to me as well as many others! Tip 10: Offer access to CBT training for people who want to change from IV injecting to IM injecting. Many older users may want to try this out – its critical to be supportive and experiment along with the person to help them with the transition. IV use is a very ingrained habit and it needs to be carefully ‘unplugged’ and IM injecting replacing it. Cognitive Behavioural Therapy can be useful for this. Don’t hover over people injecting, it is extremely personal (I think its like being naked) and unpleasant when someone is watching you. You can address injecting behaviours by doing short classes, ideally peer led or run together with a peer and a doctor or harm reduction person. There are some pretty bad injecting habits people have so instead of making them feel bad etc, educate people with lessons on good
  • 13. technique, tourniquet use, etc. Consider other peer led training such as naloxone and ensure everyone is naloxone trained and has a few doses at home. Tip 11: Make alliances with local drop ins, hopeless services, adult education services and harm reduction centres. Whether its for using injecting centres for drug pickup and/or using at, Its good to share ideas, let your clients know about the services around them (in the only client study of injecting rooms across Europe, the no.1 reason people attended them was to combat isolation! So getting people out of the house is a positive thing to encourage and making other services available and known about, will ensure people use them, but under their own control, which is essential. Tip 12: When moving in to a new area to set up the clinic, make an effort to introduce both health professionals, government suppporters and, crucially, the clientele themselves. Let people talk to each other, explain how the service will run, bring a person from the successful injecting centre in Granada to talk to the locals and explain how this treatment will change peoples lives. Encourage loccals to come to a meeting using a big lunch – ask Metzineres, they did this brilliantly and won over their community with a big dish of home made paella! Tip 12: Encourage family involvement if a client wishes it. Families can be a fantastic source of stability, and it can be good for them to meet the clinic staff and feel more knowledgable about the treatment. Also, this helps when people want to stay with their families somewhere else for a few weeks here and there. These breaks can be sooo important, especially if a person is struggling with poly drug use, ensure you work with the client and allow pickup from a local pharmacy or another closer harm reduction service. Getting away from ones own environment, especially at first, can be really important to allow people to stabilize. Even if they have to go to the chemist every day to collect their medication, if they can go back to the families home afterwards, it can speed up the stabilizing process by weeks or months. Make breaks away a part of the programme, not an odd occurance. Tip 13: Allow PRIVATE time for client only meetings and allow such groups to flourish (see also tip 1). You can pay expenses to a peer organizer who can run meetings where people can talk about more than just clinic concerns – discuss injecting techniques, and health issues. Get a gauge of peoples knowledge
  • 14. and work with the group to help find solutions to their group issues outside the clinic eg: constipation, procrastination, varicose veins/cellulitis etc if a problem for older injectors, peoples feelings around changing from IV to IM injecting, isolation…Provide a way for the group to feed into the service itself if it needs solutions. Be open to such support needs as they are often very important to ones progress and stability and have possibly never been acknowledged or discussed before. Bring in speakers eg on health and harm reduction issues. Tip 14: Encourage people to write their stories, their experience of the treatment, both before, during and after transition to injectables. These stories are often great ways to tell the clinics story to the public (anonymous etc) and share the with other treatment services around the world. Injectable clinics are rare across the globe, and statistics about progress are often dry and boring and don’t say much about the reality at the clinic. But the drug treatment toolbox needs to evolve – we need better, more innovative treatment options and we need to know about it when treatment is a success for the people and staff. Stories are a great way of recording this progress (you could pay people a small fee for taking part) and it will help keep the public on your side.