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Back @ the EPR Arms: April 2016 To share or not to share: That is the question

‘He went to Wales I think. Angelsey. Somewhere foreign that’s for sure’.

‘Not sure Wales is classed as foreign Bill’ I said to the landlord.

‘Well – it’s a long way away and they speak funny!’ he replied while he emptied the pot washer. Steam gushed out like a rising cumulus cloud, momentarily fogging his glasses.

‘So when did you take over as landlord Bill?’ I asked while he cleaned his glasses with his pot towel which was still securely wrapped around his waist.

‘Oh about six years ago. You know the old EPR Arms shut in, what was it, 2004 I think. Just like that. No rhyme or reason.’

‘Didn’t it open again as a fancy wine bar or something?’ I asked vaguely remembering a period when it was all shiny noisy laminate floors and high tables and even higher stools. Not for me.

‘I ripped all that up and put it back to what it was. Even got the same real ales back. Badgers Crushed Paw Bitter to name just one’.

‘Tapas!’ snapped a regular sat on a stool at the bar. ‘Tapas in Huddersfield. I mean – how was that ever going to work. Only bottled beer. Only tiny portions. Little Plates. Big Prices. Died a death. I say died a death. Know your market.’ He looked (and sounded) a bit like Fred the Butcher from Corrie and coincidentally shared his name. ‘That’s it. Know your market. We want us beer. Good beer none of that fancy bottled fizzy muck wi’ a lime shoved darn its s’neck.’

He was warming to his theme of the old days. Any minute now, Fred would say it was different in his day.

‘T’were different in my day’ said Fred, not letting me down. ‘I worked darn’t’pit and on us way back home, I’d have us pint to wash’t muck awa. It were part of us routine. ’

‘See you later Fred’ I said picking up my pint of Badgers Crushed Paw Bitter and having a quick slurp to get me across the room safely. I spotted a rowdy lot coming across the road from the hospital, so I wanted to grab a seat before they arrived.

Fred stayed where he was – on his stool at his bar drinking from his tankard. Not many folk do that anymore do they? Old Albert (God bless him) sat in that place. The only thing different between Fred and Albert was that Fred didn’t have a ferret. Or a flat cap. The world’s moved on. Old Albert used to cause quite a storm in the old days but now ferrets, along with ciggy smoking, have been banned. I must admit I don’t miss either smell.

The gaggle crashed through the door and they were all talking at once. ‘Did you hear what she said – her from Manchester way? They’ve done some brilliant work sharing records across their social care and GPs and hospitals. Why can’t we do that eh?’

‘Because our IG lead won’t let us’ said one lad pointing to Robert who had been pushed to the front to get the drinks in.

‘Why not?’

‘Consent.’

‘What scent?’

‘Consent. To share a patient’s or client’s information they have got to say they are happy to share their information. We have to tell them who we are sharing it with.’ said Robert attracting Bill’s attention with a curious wave of his wallet.

I listened to this from afar.

I noticed one of the gaggle was someone from medical records. I’d seen her last month at Thelma’s leaving do.

‘Ay up Loz’ I said. Lorraine was happy for me to save my breath on her name.

‘N’athen. Hows you doin’?’ she asked – like Geoffrey Boycott in a frock.

‘Whats this lot then Loz? What’s occurrin’ I asked.

‘Just had a DFC sesh over road’ she said..

‘Fried Chicken?’

‘No – Dame Fiona Caldicott. DFC. All about sharing records or not.’ She grabbed her (large) Chardonnay and popped across the room to join me. ‘Thanks Robert’ she shouted at the poor harassed (and now considerably poorer) man who had got the round in. ‘Have you heard of the Caldicott Review? The Caldicott Guardians? The Caldicott committees?’

I admitted I had. Actually a pet subject of mine.

‘Well you will know that (Dame) Fiona Caldicott was initially asked by the NHS Chief Medical Officer (CMO) to come up with some rules about sharing patients’ information,’ said Lorraine, ‘Mmm a hint of apricots’.

‘That was yonks ago though wasn’t it?’ I said, thinking about getting my second pint.

’Yes, you could say that. The original report was written in 1997. It was a different world then though – you could say far more ‘paternalistic’ and much less patient centred. It was officially known as guidance on "the protection and use of patient information" and identified the issues and complexities……’

‘And tensions!’ I interjected.

……………’ of sharing patients’ information. Tension? What tension?’ she retorted.

‘Well, we have on the one hand the need to protect and maintain patient confidentiality, and at the same time we need to share information about our patients. A tension.’

‘Yes you are quite right. There were some staff who adopted the ‘Computer says no’ attitude and used the Caldicott principles to smother any good meaning intentions to share data – speaking of which …….’

At that point, the bespectacled and harassed man who had just been relieved of twenty two pounds thirty pence by Bill at the bar decided he needed to sit down.

‘£22.30 that’s just cost me! Anyway, I can’t share an individual’s data unless they tell me EXPLICITLY that I can do so on their behalf.’

He sounded just like a jobsworth nasally stamp collecting trainspotter.

‘But how do you know WHO will need to see that patient’s data?’ I asked, wishing I had replenished my pint earlier as this could be a long long session.

‘Consent! Plain and simple. I need to know they are happy for me to share with anyone we intend to share it with.’ I could feel my BP rising and I don’t mean the cost of diesel across the road.

‘I think you will find that DFC’s Review of 2014 actually clarified that Robert!’ I said rather more forcibly than I had originally intended. ’She actually actually said ‘over recent years, there has been a growing perception that information governance was being cited as an impediment to sharing information, even when sharing would have been in the patient’s best interests’. And not just with named individuals but anyone with a legitimate relationship and delivering Direct Care. Anyone.’

‘If they don’t want to share their data then they are quite at liberty not to do so’ he continued in a nasally voice that instantly got up mine the minute it had left his.

‘Loz added gently ‘She also said that services cannot work effectively without trust and trust depends on confidentiality. However, people also expect professionals to share information with other members of the care team, who need to co-operate to provide a seamless, integrated service. So good sharing of information, when sharing is appropriate, is as important as maintaining confidentiality.

‘But if they don’t want their data to be shared with a member of any clinical team then I cannot allow any of that patient’s data to leave my organisation.’ A forceful end to an increasingly forceful conversation.

‘Whoa Whoa Whoa’ said Lorraine.’ I think we all agree that we must take care of all data we hold. And when we share it, I think we all agree that patients must be happy for that data to be shared. DFC said that her overarching aim has been to ensure that there is an appropriate balance between the protection of the patient or user’s information, and the use and sharing of such information to improve care. The issue is, we do not know who will need that data, so we can’t ‘up front’ ask for that specific permission for any specific individual. We must simply ask the patient to trust that we will manage their clinical information safely and securely and only people who need to see their information actually do do’

‘Doo –doo?’ I asked. ‘Doo Doo?’

And that seems a good place to pop to the bar to get my refill.

What is your experience of these tensions dear reader? How have you managed it? How do you ask and record consent? What do YOU do if a patient refuses to share their data? I would be really really interested and I can bring it up in the next episode of Back @ the EPR Arms.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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