Monday, 24 June 2013

Complaining To Your Drugs Service & Injectable Script Progress

East London NHS's Stance On Injectable Opiate Prescribing

So, this post is about my experiences dealing with the SAU, or, 'Specialist Addiction Unit' at our local hospital, Homerton (Hackney East London), a run down of the various letters sent back and forth on behalf of my friend and the unit's addiction consultant psychiatrist,manager and the clinical director...

The issues I raised and the hospitals responses are quite generic and I would have thought other drug services around the UK operate similarly, if you were looking into other treatment options for yourself. 
I guess I've been acting as an advocate on her behalf, having someone fighting your corner, who also incidentally knows and understands how it all works, can work wonders for your self esteem and seems to have a positive effect on how well the professionals involved with your care behave ;)

This post may well piss people off, I know that a large percent of the general public probably view drug users and heroin addicts especially, as a problem for society, I'd go as far as to say sub-human, undeserving of love, compassion and tax payer money.
Sadly, the average citizen views heroin addicts as scumbags that would sell their own mother for a hit.
This isn't helped by the media, on the whole, if a news story concerns a heroin addict it will revolve around a mugging of an old lady for the £5 in her purse. The stereotypical dirty junkie.
This is also, probably the only time the public are told about heroin addicts, most don't know one or have any kind of contact with one. The message is clear, beware the scummy junkie, he'll mug you and won't think twice about it as he has no conscience or care for you.
Now, the reality...
There are an estimated 300,000 heroin addicts in the UK, that's just the ones that are registered for treatment and in receipt of maintenance scripts.
300,000 is a conservative estimate, for every addict in treatment there is a mother with kids too scared to access treatment for fear of social services getting involved, for every one in treatment there is one working in an office, holding down a good job, terrified of going to his/her GP for fear of being judged or losing their job. For every one in treatment there is another that can afford private healthcare, being prescribed MST from a private doctor or clinic..
My point is there is a huge amount of opiate addicts that slip under the radar, working, paying taxes, getting on with it! The 'functioning addict' I guess I'm one of them, I've always worked and supported myself and my drug use, I've always believed if one wants to use drugs then one must also support oneself and not expect others to pay for or support my habit.
Maybe people like me are in the minority, I don't know, I get the feeling there are lots of us though.
Now of course there are also your 'car crash, live to die' junkies.
These are the ones that commit crimes to pay for their drugs, most are in treatment, on scripts which for all it's negatives, gives you the option to use, being on methadone takes away the requirement to find money every day.
Sure, there are plenty that will steal, rob, lie, blag, do whatever it takes to get high.
In a society that criminalizes drug users and doesn't provide adequate prescribing of inject-able opiates, there are, unfortunately, those that will commit awful crimes.
I don't believe, in my heart, that the ones that mug old ladies actually want to do so, no-one gets off on stuff like that, it comes from a desperate place. I know they will have that on their conscience forever and so they should, I'm not condoning it in the slightest, I think it's disgusting, but I think simply punishing the person without any kind of constructive treatment is unhelpful and pointless.
It pisses me off that all addicts get bunched in with those that go that low.
Iv'e never in my life mugged anyone, Iv'e never stolen from my family, if anything I kept well away from my family when I was at my worst. I'm not trying to make out I'm mr goody two shoes but I am saying that despite the drug addiction, we still have a conscience, we are still human beings, we are your brother, sister, mother, father...
At my worst I spent a couple of years living on the streets in Brighton, I slept in car parks with a few other addicts. We would get up early and go begging or sell the big issue, I used to have to keep everything I owned in my sleeping bag, I'd make sure I had a hit made up ready from the night before for the morning.
Waking up sick in the freezing cold it's the only thing that keeps you going.
They were bad times but still I never mugged anyone, I begged for change and shoplifted occasionally. Only ever food though, I wasn't very good at shoplifting bigger goods and frankly couldn't be bothered.

So, my point is this.. Drug addicts are people too, people that have lost their way for whatever reason, usually some kind of abuse as kids. We're fellow human beings with feelings and dreams, don't judge us too harshly or quickly, this world needs more compassion and love not judgment and hatred.

So, onto the letter.. :P

So, a little background, if I maybe haven't covered it in previous posts...

She is a little younger than me, 30, with a long history of IV drug use, ten years plus. 
More recently (the last few years) she's been injecting 'speedballs' so crack cocaine along with the heroin. 
She has limited peripheral venous access having used the veins in her arms and legs for many years meaning the usual areas like arms and legs are thrombosed and the veins collapsed. 
She is therefore a femoral/groin injector. She's been injecting in her groin for about three years too. 

She has been in and out of treatment for around 15 years, various attempts at rehab (9-10 times?) methadone and subutex maintenance (small and large/optimised doses, the maximum being 130mg), DIY/home detox, 'community' detox (Home detox under the advice/support/comfort medications of GP), dihydrocodiene, morphine... Etc

In total in the entire length of using illicit drugs, the longest she ever managed to stay 'clean' was about a year, in 2004. 
She is currently prescribed 60mg oral methadone, on daily supervised pick up.
She still uses heroin and crack cocaine on top 3-4 times a week, an average 'hit' for her is three bags of heroin and one crack-or about 0.6 grams heroin plus 0.2 grams crack. She will usually inject this amount three or four times in a day, costing around £30 per shot. She struggles daily with drug cravings and withdrawal symptoms. She doesn't feel her current treatment of 60mg methadone 'works' or is even keeping her out of physical withdrawal. 
Traditional treatment has had little effect in the long term and she wants to try something new. 

Ok, so in my opinion my mate is a perfect damn candidate for IV opiates, ideally heroin (diamorphine), although IV methadone would also be an option. She feels that her addiction is as much to do with the physical act of injecting as it is to anything else. 
In her words she has, and always has had, a 'needle fetish' in other words, using IV drugs is almost a ritual, similar to rolling a joint or mixing a drink I guess. Some users become almost obsessive about how and where they prepare/cook and use. The act of tying off, finding a vein, pulling back and shooting becomes so ingrained, if you think about it from a CBT point of view, the reward is the hit. It's usually preceded by hours of hustling, shoplifting, sex work, whatever... Obtaining cash then obtaining the actual drug/s is all part of the addiction. This reward system is particularly strong when the user is in withdrawal, or has had to work extra hard to get the cash.... I can totally relate to and empathise with her, I was very similar..
I know for me at least, I was hooked on the whole process, running round scoring and finding a quiet corner or public toilet to shoot up in was all part of the attraction for me, maybe it's the knowing what you're doing is illegal/bad for you/dodgy.. Whatever, I got off on shooting a speedball in a public loo as much as the hit itself... Yeah.. Go figure mr psychologist ;)

Anyway.. As no other treatment has ever really worked, and she continues to inject illicit drugs on a near daily basis, with all the associated risks, I see injectables as a good option, it would be a method of harm reduction, she believes she can exchange her speedballs for a single, clean methadone or diamorphine shot. Cutting out the crack altogether. Pharmaceutical grade opiates are obviously also much less damaging to inject than adulterated street drugs.

After reviewing the NICE (National Institute Of Clinical Excellence) and NTA (National Treatment Agency) guidelines, she fits all the eligibility criteria so technically there is no reason she should be refused. 

I put all this, in writing, to her consultant, the unit manager and the clinical director ..Who, by the way, holds the requisite home office diamorphine/dipipanone license. 

Recently my friend has had a string of seemingly ever changing and frankly, bloody useless 'key-workers', I've been telling her to ask to see an actual doctor for months but apparently it's near impossible up there,.. at the 'SPECIALIST addiction unit' (Yeah, I'm annoyed, it was no better when I was there). They seem to specialise in doing as little work as possible, you might get asked to do the health assessment, otherwise it's just a case of handing out a blue script every two weeks and off you go. 

We talked about the lack of specialty care at the unit, along with the high staff turnover and the de facto issue of confidentiality and continuity of care. We asked for an actual doctor to assess her for possible injectable prescribing and told them that we felt the unit was no longer even providing a basic duty of care to its clients any more. (Managerial talk for 'oh dear, duty of care is rather important')

Strangely enough, this seemed to get quite the reaction!
She was telephoned days later and informed that as her complaint was rather serious it was being referred directly to the trusts' complaint department. 

She was asked to attend an appointment with a consultant from the neighbouring boroughs drug service to clarify the points she had raised. 
She duly went along, as did I. 

I have to say, we were pretty impressed with how the complaint was dealt with, the doctor asked her exactly what she was unhappy about and we discussed the possibility of injectables. 
He told us that he'd be carrying out a thorough investigation of our SAU and the staff involved, and that he'd look into the injectables issue. 

Fast forward two weeks...

She's called back again to see this consultant. 
He agreed with her issue around not being able to see a doctor when requested and said he'd be hopefully putting a system in place with a time limit when a request is made.. He assuaged her other minor issues and moved into the IV script..

Long story short..

Yes, she fits most of the eligibility criteria, 
yes on paper she would probably benefit from this intervention,
yes he agrees that studies from IV prescribing show very positive results, 
yes yes yes pretty much..!

Oh, wait though.. We can't do it because we don't have the facilities/staff/money/home office licence/lives in the wrong part of London/worries she will inject in her neck/groin which rules out treatment..

Blah blah..

My take on it?

He thinks it's a good idea but his hands are tied with beaurocratic   nonsense red tape and government guidelines. 
Apparently, starting someone on any IV script (methadone or diamorphine) is a big deal. Most people with IV scripts are long term, inherited patients. Initiating new scripts is rare as hens teeth. These 'grandfathered in' patients are pretty much regarded as long termers that the doctors would rather not have to deal with. 
The NTA guidelines state that the client must be observed for an initial period of time when initiating IV treatment, demonstrating safe and correct injection technique. (Not in the groin or neck, which is a whole other issue and personal gripe of mine, by the time a service user may be suitable for IV prescribing they usually have very limited venuous access anymore). 
To do this means the unit needs a specialist nurse and a room. 
See, to me that ain't really a big deal, but apparently it is. 
The client would need to attend the unit and be observed twice daily for at least three months. They would get one take home a week for the Sunday and would need to return the empty ampoule, proving they weren't diverting their script (Again, really? why on earth would they 'divert' the drug they want and have fought tooth and nail for?!) 
The prescribing doctor would require a home office licence, they would also want to be experienced and comfortable providing the script. (Funnily enough, there are barely any with the experience and confidence to do this) 
Apparently it's quite a big thing to take on and the vast majority of doctors would simply rather not get involved. 

I think, that really, it's just the fact that the government have made it so bloody difficult to provide this kind of treatment that no doctor wants to do it!

There was an outside chance of a referral to the maudsley hospital in south London. This is where the drug unit that did the RIOTT trials is based.  
IF, and I mean IF, she managed to get a referral and was accepted, she would be under the same rigorous and thorough regime. 
Having to travel halfway across London twice a day to inject in front of a nurse..and'd need to be pretty bloody desperate to do that!

Currently we're waiting for the investigating consultants report. 
It should be completed any day now, I'll update you all as we know more. 

What came out of this all is the following;

-It is technically possible to get an IV opiate script
-There are only around 300 doctors in the UK with the necessary licence, these are not evenly distributed throughout the country. 
-You're very unlikely to get injectables prescribed, particularly if you live outside the main cities
(Brighton and London both have provisions although they're near impossible to access)
-Be prepared to face a lot of hostility and red tape, whether its right or wrong, a lot will come down to the individual doctors personal beliefs/ethics/experience/preferences/prejudices etc
-Even if you manage to find a doctor willing to work with you, there's no guarantee the PCT will fund it, in comparison to traditional oral alternatives, ampoules are very expensive 
-Our current Tory governments drug strategy is to go against all the evidence and previous experience and focus on abstinence based treatment. Ie: getting you off your methadone script as fast as possible (Yes, I'll be posting about this issue soon)
-Get some advocacy, it can really make a difference! Look up the methadone alliance, RELEASE and local users groups
-Do your homework, presenting a well researched, sensible and concise case will make a big difference

As I was saying before, the reputation and stigma attached to heroin/crack cocaine addicts is one I have to battle with on a near daily basis. Sadly this prejudice can often carry through to the very people that are meant to help us, doctors, nurses, drugs workers even. 

Don't just lay back and accept the status quo, being ambivalent and passive with regards to the treatment you receive is what's expected of you. 
Drug treatment strategies in the UK rarely change and are nearly always led by politicians that certainly don't have your best interests at heart. Drug treatment is a controversial area and MP's make decisions based on public opinion. Not on evidence based and patient centred choices. 

Advocate for yourself and others, join your local drug users group, if there isn't one, start one!

As I've said many times before, addiction is not a 'one size fits all' problem. 
There are many factors that contribute to a person becoming addicted to drugs and alcohol.
Addiction crosses all social boundaries and classes. 

Ill leave you with this;

The consultant we saw told us he was very impressed we had written a letter of complaint. He told us it was a real novelty, to meet someone who wanted to bring attention to issues with their treatment. 
He told us that most complaints come in the form of kicking off and shouting in the waiting room, the client storming off when he'd got what he wanted. End of story..
To get some real feedback and the chance to make the patient experience better was something he was more than happy to do! 

So... Get writing :)




Oliver said...

There are also other human beings who work hard and have achieved a lot of things in their life and continue to do so, without touching an opiate, the point am making is that people simply have no time for addicts, they only got time for their family and at least people who have a good social life and hard grafters.

I do not too much about injectables being the answer, but I do know is making a choice to get clean and stay clean is the only way to get through life not full of major unhappiness and loneliness.

I quit my heroin use by listening to my dad, he said he'll kick me out, and my mother was always stressed, so I just one day simply thought to myself what the fcuk am I doing? I made the decision to quit there and then, never looked back since. I do believe some of our choices play a part and our personality traits, we need to rectify those before expecting other human beings to show compassion for us..There are other people worse off with no fault of their own and people simply do not have time or want to make time for addicts, thats the truth of it all.

We can only look out for ourselves.

ohyaya said...

When I used the ibogaine I did it with 3 people on board, the process went alright but it did not cure all of my withdrawals nor PAWS. I did heroin and then methadone, did meth for 11 months, weaned down, did ibogaine and some withdrawals for 4 months, then PAWS for almost 2 years. During that time I stayed indoors, was depressed and had no motivation. The ibogaine did not help me stop using the drugs in the sense that I saw what it can do my brain and body, but it did not do much for PAWS. Now I am on tramadol, going to be on that for a while until PAWS go away.