So…56 Dean Street fucked up. Yes, from the reposts of reports and comments in my social media feeds, it would appear the consensus is that they ‘FUCKED UP’.
Europe’s busiest and most visible sexual health clinic accidentally disclosed the names and email addresses of some 800 patients in a group email containing open CC’d contact details instead of a ‘blind’ BCC set up. This is not good – granted. I myself have done the same thing, not with such confidential information but I have fucked up on that front a few times too. I can’t diminish the severity of this clerical error. But it was an error, no malice, a plain old fashioned mistake. And please before you launch an attack…I do not intend to try to trivialise what has happened here. What I am going to do is ask you look at it with some some heart and with a sense of what our community’s responsible reaction to it should be.
56 Dean Street can not undo what has been done. All they can do now is apologise, offer their support to those affected by the incident and make damn sure they put processes in place that will ensure this can never happen again. And I am sure as hell they will do this above and beyond their own requirement to damage limitate.
Here is a clinic on the cutting edge. Making actual changes to the system and to lives. There is only one way Dean Street have been able to become the innovators and open armed ‘family/best friend’ style sexual health clinic that they are. The reason is HEART. Everything they do is with heart. But the risk of having a heart is that it can be broken. And I know every single person that works at Dean Street and Dean Street Express or that collaborates with them will ALL be sickened and upset that this has happened.
Of course we should be fucking angry! But pause a moment and ask exactly what we should be angry about. We should be disappointed with Dean Street that this happened but not angry. Instead allocate you anger where it ought to be. Be angry that we still live in a world where a person living with HIV should even have to be frightened that others might find out about their positive status. The others from right across the board…employers to family to friends to lovers to allies and to enemies. Be angry about this. Be angry but be active! CHANGE THIS. We can’t find a cure today but each and every one of us can take a little bit of power away from HIV TODAY! We just have to be kind and stop all this HIV stigma bullshit that we still drag around and hock up on the regular! And I mean both internal and external HIV-phobic actions.
Be angry also at budget cuts to sexual health. Perhaps if Dean Street had been allocated more support and resource this situation would never have occurred. DO SOMETHING ABOUT THIS TOO! Demand that we have the appropriate allocation of budget for Dean Street and their sister clinics around the UK.
Dean Street have offered me so much love and support over the years. Now they need it and it’s only fair and human and ‘with heart’ to offer it back in return.
Let’s not scaremonger and erode all the amazing work we are all doing as a community to open up the dialogue about HIV by stepping away from Dean Street. Let’s keep that great work alive and breathing and push it further. We need to encourage regular testing, early diagnosis and early treatment. All these parts of the chain will reduce new transmissions and allow us to start to work towards a HIV free world.
Let’s try at least to find the advantages and the opportunities hidden in this unfortunate situation.
This is my stance, I hope you join me.
STAND TOGETHER – MAKE A DIFFERENCE
gregowenblog 
I was actually on the list – and I couldn’t feel more sorry for the person who made the mistake… It was a small human error that has really unfortunate disappopriate results.
I love Dean Street with all my heart. I will never forgot everything they have done for me since my diagnosis – I really wish this didn’t happen for them as much as me.
It is a world class service and have called folks to give them my support.
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I think your blog has been a brilliantly honest and accurate description of what happens when someone goes through the shock of HIV diagnosis – and I’d like to thank you for it. It’s been revealing and thought-provoking for me, and will help many other people currently going through the same thing now – and in the future.
The problem with this data breach, though, is that the world is NOT yet the understanding, compassionate, informed place place (however much we want it to be). Nor are we all as open and honest about our status as you have been (for varying reasons and circumstances – some of us would like to be, but can’t because of family circumstances, the work we do, and so on). I am understanding towards this human error – and yes, we have all sent emails we immediately wanted to claw back – but the way Dean Street’s email system operates should not even allow this (and in future, probably won’t).
I agree that most of the staff there are wonderful in most respects, and the level of patient care is excellent. It’s probably one of the best places to be cared for with HIV in the entire world. But right now I think your sympathy and concern should be focused on those whose names and email addresses have been forwarded, and which can’t now be recalled. Those details are not in the wider public domain (yet, at least), but I know many people who are terrified that it could become so, and there are undoubtedly those whose status has been disclosed to other people they know who never intended or ever needed to do so. Let’s hope the world does indeed change, but in the meantime Dean Street need to look urgently at ensuring this could never happen again, and offer every assistance and support to those it has affected.
Keep up the brilliant blog, and good luck with everything. x
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Ben, I was on the list – but trust me – my sympathies are with the Clinic, Alan and the poor staff member…
They could be liable for up to 500K fine – which you can imagine would cause devastation to the services that they provide..
And then you have media hungry idiots claiming all types of things that I don’t fell.
Please goodness nothing bad comes from this and no-one looses their job.
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If everyone on the list is HIV +, it would be a pretty low blow (understatement of the decade) for that list to make its way to the media because someone who is HIV + would have done it
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How’s about a ‘Supporting HIV testing and destigmatising test day’ in support of Dean Street, in support of the staff, in support of the considerable mentoring and support work, in appreciation that mistakes happen, in support of the work (past, present and future) that these people do ??
Get a few celebs in … Get people queuing and wake up London to the need of these services … Just a thought 😉
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This a great idea…
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To be fair from what I can tell the list didn’t go public as such it went to other patients of the clinic. That in its self is a saving grace. In addition to quote sky and other media it was a news letter letting subscribers know about services offered at Dean street. It does not mean all names on that list have the same condition. The more people who tell the media how scared they gives more temptation to some one fucked up enough to use that information for personal gain. So the best way to makes this go away is to stop talking to the media. Yes funding is needed, if that fine goes through, it will only effect the people the clinic is trying to help. As it is. That list is no different to seeing who is in the waiting room at any one given time. We need to calm down it won’t happen again I’m sure.
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Brilliantly stated. Thank you
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Meanwhile in Sydney I was at a community forum about HIV and the usual request at the beginning of the meeting for confidentiality about HIV status and I was thinking to myself “We live in a jurisdiction where discrimination against HIV is illegal and yet we are faffing about saying how we need to be protecting anonymity.”
No wonder more than 30 years into the epidemic we are struggling with stigma.
Our Poz community creates secrecy around something that should be as un-noteworthy as having a migraine.
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Bring it Harley! X
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I work as a Band 7 nurse for a leading HIV clinic in London. I’ve been here for the last 5 years. When I arrived we were a team of 4.5 nurses (the 0.5 being a par timer). The number of patients during this years has increased from 2,500 to over 3,000. My team has been reduced to 3.6 nurses. One recently decided to leave and hasn’t been covered yet, another one went on maternity leave. During the month of August on Tuesdays and Fridays I’ve been on my own. The rest of the days there were only 2 of us. My clinics are overbooked, I have to double book appointments in order to see my patients when they need it. Apart from seeing my patients I have to liaise with doctors that need help with their patients as well as phone calls and emails. Since no one else is around all the messages end up with me. Yesterday I told my line manager that I’m over stretched. I can’t pay attention and I lose concentration very easily as I have too many things of my head. Remember, where there use to be 4 of us, now there is 1 or at the best of times 2. I told my line manager that I was worried I could make a mistake since I feel overwhelmed by work. It’s unlikely that we’ll go back to 3.6 nurses before Christmas. Then I heard the news about Dean Street. It could have easily been me. I feel sorry for the person who made that mistake, but I’d like to tell them that I could have perfectly made the same mistake. Those patients that feel angry about what happened should direct that anger in the right direction.
It’s not doctors, nurses or admin staff the ones cutting down the number of staff in the NHS. If the number of patients increases and the number of staff reduces I’m afraid that errors like this will continue happening.
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I think if a root cause analysis of this incident finds this was due to unpredictable human error as opposed to a culture of negligence then no fine should be levied. That money is needed to continue the excellent work Dean Street has been known for.
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The worse thing you can do in a crisis (and this was a major crisis for the clinic) is to bunker down, stay quiet and hope it goes away. For better or for worse, media doesnt work that way. Sorry if you dont like it but thats just the way it is (you may remember a factory that blew up in Cheshire I think it was a couple of months ago, several people died and the owners of the factory stayed silent and all it did was make the problem worse…’look this terrible thing has happened and they cant even apologise etc etc etc)
So 56 Dean St, and Alan inparticular dealt with the crisis brilliantly, by fronting up and saying sorry and dealing with it head on and proactively. I spoke to various journalists yesterday about how they had handled it and each and every one said ‘text book way of dealing with a crisis’
So this ‘stop talking to the media and it will go away’ is wrong. They needed to talk to the media and I personally, who was also on the list, felt it was a great opportunity, yes to say how disappointed I was with the clinic as I expected better, but also, and each and every time (and you can check) say what a great clinic they are, I am not going to stop going, their reputation has taken a knock but it isnt ruined (I rebutted what Jeremy Vine implied yesterday as I was on his show), the people there are great and really this is a story about HIV stigma, so why is it that stigma still exists in this day and age.
That argument got traction in the times I was live (LBC, 5LIve and Radio 2) but when they did a prerecord, it mainly got edited out ….although C4 news and News at Ten all included my sound bite ‘I am not ashamed of having HIV but for some people its a struggle’
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Agreed on a positive talk to the media. That’s not what I was referring to. The media are hungry for people’s misfortune. That is a fact. They want people to tell them there are scarred that list gets into the wrong hands, then they follow up on a big fine.
With respect no one was killed and you can’t compare the two, that said you are correct the response I got was fast and professional and for me the situation is closed. I called them to give my support. From what I can see the story has faded and this is in the main because people effected have actually being grown up about it and aside from the odd interview, no one really gave the media the bait to blow it up more than what it was, a newsletter about the services offered, not HIV results. I just hope that the judicators see this forgiveness, the effected on a whole seem to have given , and find a way to work out something more effective than a fine that just hits the people.
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