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Time to misbehave
Listening to Thought for the Day this morning suddenly helped me to digest an extraordinary week. Vicky Beeching spoke about how honesty and truth must come first and niceness and love are not always synonymous, so sometimes love requires unsettling the status quo. Laurel Thatcher Ulrich famously wrote: ‘Well-behaved women (and men) rarely make history.’ Many others and I have been doing some misbehaving over the past week, and we all need to do more!
Firstly there was the first European Conference on Hepatitis C and Injecting Drug Use, which was packed full of people with passion and commitment fighting to improve access to HCV and OST. People put themselves at risk to demand better services. Knowing a little about the oppression in some European countries, I was truly humbled by the user and harm reduction groups working in those countries. Misbehaving and fighting for their rights can easily lead to them ending up in prison.
Then came the Action Summit on Naloxone – again a full room of committed people who want to unsettle the status quo of poor to no naloxone provision in England. How can PHE and DH point us towards localism as a reason for not sending out a clear national message, as hundreds of people die because of the lack of a safe, evidence-based, effective medication, whereas in Wales – where they have it – drug-related deaths have reduced by 53 per cent? Hopefully the newly set-up NAG (Naloxone Action Group) will continue to misbehave and get change.
But sadly there are many too fearful of losing jobs or funding and keeping their heads down. How can DrugScope repeat their State of the sector survey with no mention of harm reduction at all (just one brief mention of ‘harm minimisation’ – harm reduction for wimps). The single mention of naloxone only reinforces the October 2015 date – what about now? It is a licensed medication and at a minimum should (and legally can) be prescribed to everyone who uses opioids, leaves detox or rehab and starts OST. That is the message that needs to be carried. In the survey, there is nothing re access to OST, maintenance, pressure to exit treatment etc and nothing explicit on NSPs, although many of us in the harm reduction group had asked for many of these things to be added after the last survey. If you are doing a state of the sector survey you have to ask the right questions.
From endless emails, posts on SMMGP and other forums, Twitter and phone calls, it is clear that people are being forced into options they are not choosing for themselves. Services are being cut, re-tendering is causing chaos, commissioners are ignoring the enormous evidence base and commissioning services for detox only, and most importantly people are dying. I was first saddened and then angered to get a phone call from a drug worker just after I had listened to Thought for the Day to say she was being forced to reduce the methadone by 5mls a day on a very vulnerable patient of hers after he had failed an appointment. She completely understood that this was the most risky thing to do and instead wanted to visit him. I hope she misbehaved and potentially saved his life.
We all know the system isn’t working and it is time to stand up and be counted and misbehave – there’s lots we can do. We have been lied to, told there’s no alternative, no choice, and that you don’t deserve any better. To give the last word to Mahatma Gandhi, ‘Be the change you want to see’.
Dr Chris Ford, clinical director of IDHDP, by email
Walk this way?
As someone who has attended the last three recovery walks I was really looking forward to Manchester this year. The walk has always been a massively inspiring event, bringing people together from all across the country to celebrate recovery.
However, I have to say what a disappointment Manchester was to me and my family. Firstly, it was clear that the numbers attending were massively down from Brighton and Birmingham, perhaps even half as many as last year. If it’s going to be in Durham next year it’s a fair bet that many from the south like me won’t be able to attend, so are there going to be even less next time?
I was also really disappointed that this year there didn’t seem to be anything to entertain families. I’d travelled up with two young children and had hoped that like previous years there would be something to keep them entertained, but alas there was very little.
Finally, I had travelled up by coach and had spent a fair bit on transport etc which when you’re on benefits isn’t easy. I had at the very least expected there to be free water as there had been on previous years. Not only were there no free water bottles but I was expected to pay £1.50 for a can of pop! Also last year at Birmingham we had got free t-shirts but this year we were expected to pay a fiver for the privilege.
All this makes me feel the walk has lost its original ethos. It now appears to just be a money-making and promotional tool for the organisers. Perhaps it is time for local activists to reclaim the walk. Maybe we could have locally organised regional walks that involved local people and promoted local groups?
Yours in disappointment,
Charlie Gillespie, by email
Time to reflect
I am a person in long-term recovery since 1999 and have seen some really good models of delivery in drug services over the years, but also some not so good practice. I believe that service users are experts by experience and are absolutely the best people to work in the field. However, what has bothered me throughout my career is the welfare of service users when they move into long-term recovery and are then employed by a service.
I have seen people be employed when they are clearly not ready and I’ve seen them relapse and get dismissed or leave. To my knowledge there has never been a national policy on this and agencies just have their own policies – for some it’s six months, others say two years.
Some people can be off work with a serious illness for 13 months or more, but services employ people in recovery after six months? We often forget that a lot of addicts have not had formative years and so need to make up for this and relearn how to live a ‘normal’ life, for want of a better word. Some people may not agree with me and say they are ready, and I appreciate that this is a subjective matter. However, I think that after treatment and recovery there should be a ‘time to reflect’ period. It would put ex-service users in a much better position to become a practitioner if they spent two years doing this, in my opinion.
Agencies have a moral and professional duty to protect people they employ and should have rigorous systems and policies for this. Sadly this is quite often not the case and service users are put on a pedestal as a promotion for the wonderful work the service has done, or for stats on how many ex-service users they proudly employ.
We should be looking to embed guidelines nationally so commissioners and strategic influences are on board and it becomes part of the tendering process at the very least. You could argue that just because it’s an ex- service user they have the right to be treated the same as any other employee and I would agree, but I think the process for ‘time left’ services needs to be looked at properly.
I am not naïve enough to think that this has not been discussed a thousand times before, but with the current climate of the recovery movement across the UK and with organisations such as the UKRF, as well as localised movements and SU involvement, surely it is time to put this on the agenda again in a bigger, better way.
Steve Loxley, by email
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The headline on page 4 of your October edition (‘England and Wales see sharp rise in drug deaths’) is misleading. England saw a rise of 21 per cent in deaths from drug misuse, from 1,492 in 2012 to 1,812 in 2013. In Wales, by contrast, there was no change in the number of drug misuse deaths in 2013 compared with the previous year, with 135 deaths recorded in both years. Discussion on the reasons for the diverging patterns of drug misuse deaths over the past few years, in your magazine and the wider community of those involved in substance misuse policy and practice, would be of great value.
Chris Emmerson, information analyst specialist, health protection, Public Health Wales, Cardiff
Correction: Our headline was misleading, as there was no change to the number of drug misuse deaths in Wales, but the ONS report does state: ‘However, mortality rates from drug misuse were still significantly higher in Wales than in England.’ DDN