It started innocuously enough. Our business internet provider BT Infinity Broadband offered us a free upgrade: “You can now get faster broadband speeds in your neighbourhood because we’ve improved our network. And they won’t cost you a penny extra.”

Sounded great. What could be wrong with that you might ask?  Plenty as it turned out.  Someone, somewhere did the work on our line on a Tuesday and from then on – for the next seven days -  we were completely shut out of our broadband connection.  For a business broadband service, we certainly “got the business” from them. Not pleasantly.

That’s when you realise how powerless you are to get in touch with the great BT and tell them they have screwed up and will they fix it now!  A recent survey of ISPs found that BT Broadband’s had the “most tangled” process for getting help.  That was certainly our experience.  You have to do it their way – and there is only one – or not at all.

The only thing you can do is ring their Helpdesk somewhere in foreign parts and go through the well-worn ritual.  Learning point: make sure you have a paperclip to hand before you ring.

Help in foreign parts and a paper clip 

We did this twice. The next day.  Both times it took about an hour as the requisite tests are undertaken, resets are done, lights go off, then come back on flashing amber and then go a reassuring blue.  And that’s just for the hub. The same then has to be done for the modem.  The essential tool for both is a straightened out paperclip, just the right size for inserting in the “reset” hole at the back.

But to no avail. It didn’t work. Twice.  Everything checked out. Except we couldn’t get a browser (any browser) to work and no pages would open.  Verdict: system is normal but can’t be used.   But they did say something which turned out to be very significant, it was this: “Your order is still open and we would expect it to be closed.  That’s strange”.  So it was.  What to do?

Next day we talked to our own IT wizard. He did “ping” tests and confirmed it was all working, so the problems was not our connection, line or laptop. But he couldn’t fix it either as it was somewhere higher up in the BT system.

Finally we got a number from the helpful chap on the technical help desk in India to ring  in the “order dept” about this “open order” mystery.   Rang and had more two conversations that led on to two more rounds of fruitless on-off, reboots, resets with paper clips the lot. Exactly the same: system working normally, except that we couldn’t get on it.  All this time and bizarrely, Skype continued to work so Skypemail was our friend.

An engineer calls 

At the end of fourth session, just as I was tensing up to scream and threaten mayhem, they said the magic words: an engineer would call the next day sometime between 0830 and 1300.  And then I had to agree to a long caveat that if it was found to be my fault, or my pet’s fault, or my child’s fault or anyone’s fault but their’s  I would have to pay for it all.  Fine, just get the engineer here.

He duly came at midday, having rung in advance. Very friendly and polite and business like  And not optimistic he could rectify the problem.  Why? Because, he said, he had seen it before recently and just around the corner.  Same scenario: upgrade done, but  then service can’t be accessed.  Nothing to do with hardware, the line itself, the connection, or even the exchange.  It is much, much further up the line. And he couldn’t fix it, but would make (another) report that this was not an isolated incident. He left and wished us well, also taking the trouble to ring back later to say he had filed the report.  And then we were in digital limbo.

Making a complaint in digital limbo

In fact the problem was so high up it was in in “BT Retail Servers”, so said the helpful diagram with the pink border around the troublesome area which came up when we put our business line number into their fault tracker page.  And we were only able to do that once we threw ourselves on the mercy of our kind neighbours and got the codes for using their O2 connection.  It worked pretty well through the party wall.

That way we could make our first complaint using BT Broadband’s online web form on 1^st June.  The page promised a response within 24 hours – needless to say that was never adhered to:

Online complaint 1/6/13

After your Infinity upgrade on 28th, we were blocked from accessing it.  System “pings” so no problem with connection. But no web pages load and cannot browse.  Four fruitless calls to your helpdesks on 29 and 30 May and an engineer’s visit on 31/5 later, you now admit there is an “open broadband fault” on this line. We knew that days ago! When are you going to fix this!! I am a small consultancy business and completely dependent on being online.  I have been excluded from a paid-for service for four days already.  How much longer will this go on?  What compensation will you provide for an error which is wholly BT’s?  If I do not receive a reply and satisfactory resolution of this problem I will complain formally to the MD of customer services.

Back came an enquiry confirmation @ 16h11on 1-6-13 Thank you for your enquiry. We will respond to your enquiry as soon as possible. Please make a note of your enquiry reference number and use it in further correspondence.  Your enquiry reference number: 130601-003594

Anger and escalation

After waiting fruitlessly for a response to the automated complaint, our next stage was to escalate the complaint to the top.  So a formal letter was composed and dispatched by Royal Mail no less to Mr Warren Buckley, Managing Director, Customer Service, saying amongst other things:

Your records will show that the fault is at the BT retail servers and has nothing to do with our local broadband connection or hardware.  That was established by four calls to your help centres and an on site engineer’s visit on 31 May as well as by our own IT specialist.  Since then we have been in limbo. It is inexcusable for a business customer to be excluded from accessing a service for which we are paying when the fault is entirely within BT’s system.

I want to know the following from you. Please respond by email which we can access from a non-BT connection: 

1. How did the fault occur and why were we not informed about it immediately?

2. Why is it taking days to rectify?

3. Why has BT not kept us informed of progress and the anticipated completion time of any work?

4. How will BT compensate our business for its failure to supply the broadband service at least 5 days (and possibly more)?

The outcome

We are still waiting to hear from Mr Buckley.  And the upshot of all of this is, other than extreme annoyance on our part?

1. We are back online – our friendly BT engineer rang up to say “give it a try, it might be working”.  It was, but he wasn’t sure why. But we are grateful for his efforts.

2. We never had a reply from Mr Warren Bradley, assuming he is a real person and not some post box of convenience.  So we have no answers to our questions about why it had happened and why we were not kept informed.

3. Some one did ring days later to say that since we had been cut off for five working days (weekends don’t count for businesses it seems), we would be offered the princely sum of FIVE POUNDS 20 PENCE in compensation.  That’s really beneath contempt.  I’m sure BT now regards our complaint as “closed”.  Like hell it is.

Tweets of anger and desperation to #btbroadband  and @BTBroadband revealed a number of equally unhappy bunnies with BT Infinity Broadband.  But BT is impervious to it all.  Perhaps they have the same complaints handling that the NHS has?  Or, perish the thought, Easy Jet with whose “customer champion” we have tangled with before.

What we learned for next time

But it has taught us a simple but important lesson.  Next time BT Broadband offers anything, free or otherwise, to do with the service, we shall JUST SAY NO.   Problem is, they will then just do the “upgrade” anyway and we shall then suffer the consequences.  Sigh.

These huge hands have become very fashionable – seen most recently by me in Birmingham New Street station concealed for the most part behind the backs of rather embarrassed and giggling teenagers presumably there to give the newly arrived a clue in the chaos of the current works how to find their way out to the taxi rank. Directions do not work if they are not seen.

Don’t talk about the dosh

These thoughts are prompted by a KPMG report on health systems changing in response to ‘activist payers’ and how this represents another (yet another) chance to put patient engagement firmly on the NHS agenda. The report makes the point that the way things are paid for or rather what things are paid for influence the way patients get treated. An obvious enough point perhaps. Yet in the sort of fora and discussions we have with, for or about patients, for the most part we do have to go along with the great NHS taboo – never discuss the dosh. To mention money is to be a dupe of the forces of big money and capitalism. It is as if the survival of the NHS can only be assured by its status as a political and moral entity riding high above concerns about ££££ . The moral impulse is all and the economic imperative is vulgar and unmentionable.

The unseen driver

Yet if money remains invisible, a major (if not the major) influencer on the way the NHS treats us patients is hidden from those patients. This makes those choices being made on our behalf even more mysterious. Without understanding the real drivers of organisational behaviour because those financial incentives remain unseen as the invisible hand of the health market,  patient representatives are often left with the sole option of complaining after the event or trying to marshall arguments for or against change based on fragments of anecdotal evidence.

Learning for Leaders and the Role of Commissioners

We have written about the importance of patient leaders being well-trained and well-prepared. It is vital that they are able to ‘follow the money’. The new commissioning arrangements begin to make sense if they are up front about budgets and the provision of care.  Sir Ian Carruthers of the NHS was quoted recently as saying that while there have been some small scale achievements “We know that we now have to do it on a larger scale ..yet we do not yet know how”. He adds “although the Clinical Commissioning Groups will have a vital role to play”. I do not envy the commissioners – the list of ‘vital roles to play’ gets longer and longer but when they ask how they are going to do this, the list of answers seems a bit short.

Still ignorance admitted is as healthy a starting point as any even with a double dose of ‘yet’s. It would just have been nice to think that we have got a little bit further down the road than Sir Ian implies.

TGV or PTR – Pas Très Rapide

I can report back on both – the TGVs are fine so long as you do not expect them to run at 400kph – we took one south from Avignon and then back to Geneva from Nice and we spent most of that journey trundling along at a speed Virgin or East Coast could match and indeed easily surpass. The Geneva train – TGV Lyria – was not even a ‘real’ TGV – the train set looked very much like Virgin’s Pendelino. TGV is now it seems a brand of express trains defined by how often they stop, not by their average speed. The catering is poor and the rolling stock is looking a little frayed at the edges. They do however remain astonishingly cheap by UK standards – even first class is affordable as we last minute bookers found out as the exhausted French work force took a bridging holiday day after the mid-week celebration of VE day and filled the trains to the south in search of Spring.

Combien pour le doc?

But this value for money is left standing at the platform by the charges levied for French primary care. I had croakily asked the receptionist at the Avignon Mercure hotel – v handy for the Papal Palace btw – for a doctor’s telephone number since anti-biotics seemed to be called for. I spoke directly to Docteur Duval – a solo practitioner it would appear with no expensive receptionists/ practice managers in the way – and he said to come round now.  A five minute stroll got us to his city centre premises on Avignon’s answer to Oxford Street – up the lift to the second floor and we were in his spacious if slightly shabby premises  – the waiting room empty apart from a father and daughter who were seen before us.  5 minutes later, we were in his cabinet – a Victorian doctor’s practice room with display cases filled with fine specimens of the local rocks. Leaving my partner in one room, we adjourned to the examination suite.  Swiftly diagnosing my problem with the traditional tools of stethoscope and torch, he filled in the form – feuille des soins-médecin -  for my E111 claim for the consultation fee of 25€ (shoque, horreur) and gave me my prescription for the next door pharmacie – open he said until he told them when they could shut. He saw us personally off the premises after a brief discourse on how the euro was to blame for all France’s current problems, making sure that we avoided the small puddle of vomit at the door where he told us – helas! an infant patient had puked some little time ago. The pharmacy was indeed open and I was given my 5 days – 3 a day antibiotic course plus some hydrocortisone for the swollen throat. Now I thought would come the big bucks cost. Wrong: the bill was – check feuille des soins pharmacien/fournisseur – 12.84€. Call me spendthrift if you like but I don’t think I’ll bother claiming on my E111. Why bother making these tiny charges in the first place if the state then reimburses them anyway?

Save a Life? It gets even cheaper

Much relieved, we went on out for our evening meal in some historic square adjacent to the Pope’s old Palace where the prospect of an imminent cure did wonders for my appetite. Disaster. Over-enthusiastic gobbling while simultaneously coughing and talking (about the wonders of French healthcare perhaps – I can’t remember) meant a large piece of asparagus went down completely the wrong way and I was about to die from lack of air when my life was saved by the expert manoeuvring of an Emergency Medicine practitioner from the USA who had been sitting at the next table.

I was mute with shock and embarrassment – overcome by Brit-type apologies for making a fuss as in ‘Sorry I almost died’. My partner did however offer to stand him pudding but he said he had to be off. The car was on a meter or something. Charge for life-saving intervention – nothing.

How do you price being at the right place at the right time?

The Millar Adamson Craig Partnership supports user and public participation,  trains lay representatives and develops responsive  health, care and education organisations.  Feel free to contact us to discuss the opportunities.  Follow MAC on Twitter @publicinvolve

Tripping over the problem

You don’t have to go far to trip over  the problem.  Just dip into patient leader Michael Seres’ latest blog about the travails of being a patient when you are “the only patient in the room”.  On the basis of this bizarre experience, you will have to agree with him that “patients are from Mars and helathcare professionals are from Venus”.

A couple of weeks ago I had my first taste on the phrase that I had believed was consigned to the dark ages –  “what do patients really know.” I was invited to attend a clinical commissioning group strategy meeting in my area. It was a room of around 150 GPs and primary care practitioners. Amazingly I was the only patient in the room. In one of the breakout sessions we got on to discussing how doctors need to invest more in educating patients. It was simply a round table conversation and I spoke about peer to peer interaction and how doctors can actually learn from listening to patients, reading patient blogs and interacting on social media. The moderator and then the GPs around the table looked at me, told me that what I knew was only as a patient and then proceeded to tell me that I must be one of those nutty bloggers like mumsnet.  Whilst being compared to the highly successful website mumsnet is undoubtedly a compliment (not that it was meant that way), to say I was flabbergasted was an understatement. For once in my life I was silent. I didn’t know whether to rant, to respond or whether that response even deserved a reaction.

Theory good; practice often lacking

Why do these things keep happening?  It isn’t supposed to be like that.  Even the RCGP’s Commission on Generalism acknowledges that essential tenets of primary care practice embrace a specific ethos for :

empathy – intelligent use of insight into the whole setting of the patient’s plight

engagement – a commitment to active involvement in every aspect of the patient’s care

an appreciation of limits – understanding and acknowledging the specialist aspects of care

professionalism – in clinical communication, interactions and behaviour.

That should create lots of space for patients to have an independent role and for their experiences to have equal value.  But the theory gets left behind as the predominant colonial culture – “how we do things around here” –  takes over out there in practice.  Too many health care professionals – not all of them clinicians by any means –  have got a bad dose of the “white coat’s burden”.  They have to make patients better (in their own image).

They are the enlightened elite whose power needs no justification and whose whose beneficent duty (their burden) is to bring civilisation to us poor patients (the proxy natives) by persuading us to do as we are told (eg compliance with treatment) and use their NHS appropriately.  This is futile, of course, and just reinforces their colonial mindset that we the patients have to be educated.   But it’s the other way around: we have to educate doctors and other HCPs to stop saying ‘we have to educate patients/public” to do things better (our way).

Maybe it’s about who owns “truth” 

The estimable Dr John Launer has an insight on this entrenched colonial-cum-paternal mentality and it comes down to “who owns the truth” – doctor or patient?  What’s at the root of the inequality?

Partly this has been because of the social relations that have existed between doctors and most of their patients. Partly it is because of the specific technical expertise that doctors hold. While there has been a move in recent years—and for longer in private medicine—towards a form of consumerism centred around the rhetoric of “choice”, this has often been a veneer covering an entrenched paternalism in the way that doctors actually interact with patients. What has been largely missing so far … is an idea that patients’ views of their medical encounters—including or even especially when these encounters go wrong—should be accorded equal status with our own.

The patient’s truth  -  how he/she sees the world, their life, their illness, the future, possibility of death, returning to work, having sex etc – is of equal value to the doctor’s view, but the prevailing healthcare culture does not admit that patients are experts about themselves.  It’s that which has to change if healthcare is to emerge from its colonialism mentality.  And patient leaders are the hope for the future.

Emergency services a case in point

The flap over how we use emergency services illustrates how deep this “white coat colonialism” runs.  In many years working up close with the NHS in different lay roles I’ve seen clinicians, managers, policy wonks and pundits  decry our collective “failure” as patients to use emergency services ”appropriately” and witnessed campaign upon campaign to try to get us to change our nativist behaviour.  But what can they expect when their exhortations use ambiguous, subjective and value-saturated language?  ”Urgent” or “non-emergency” are some of the most subjective words – like fairness –  I’ve ever encountered.   Differences in understanding influenced by culture, gender, age, geographical implications are all forgotten; no wonder campaigns fail.

What is going on is that “they” the white-coated professionals feel they have a duty to civilise “us” the natives to their ways of rational decision making and appropriate use of services. “Appropriate” is a a particularly annoying word in the mouths of the po-faced and powerful. But I wonder how coolly rational and informed HCP behaviour is in the middle of the night with a screaming, feverish toddler under your arm?  Do they calmly consult NHS symptom checker online or bust a gut heading for the nearest A&E?  Are they rationale role models of appropriate behaviour or (as I suspect) do they revert to type just like the rest of us and “go native” to the nearest A&E?

Just follow the big flashing red arrow

In fact, going native may be how to “fix” the A&E problem.    GP Des Spence articulated a big part of the obvious solution and, surprise, it doesn’t start with trying to “fix the patients” for a change.

Keep it simple. Locate emergency departments in primary care centres, and make out of hours primary care available on a walk in basis.  Keep some morning slots open so that out of hours demand can be deferred. Monitor this. Finally, insist that emergency staff rotate through general practice, because over investigation in emergency care adds huge pressure on resources.

That’s good as far as it goes.  The rest of the fix is simple too: follow what the users do already.  Make the service happen where they want to go to get it.  And don’t berate them for going to the “wrong” place. Wherever they go, then its “right” for them.

To emphasise that, there needs to be a big flashing red arrow over every A&E with the words “come in here and we will sort you out”.  It would be a bit like the Tardis on the inside with something for everyone – even the drunks.

It can work because it’s what the public wants to do anyway.  So why not make it the natural solution instead of repeatedly struggling to make people behave differently?  Everybody wins and no one gets blamed for acting “inappropriately” and clogging up A&E because it’s where they are supposed to be.  Most importantly, the white coats’ burden is lifted and they can get on with being partners in care and not “care colonialists” –  cheers all round.

The Millar Adamson Craig Partnership supports user and public participation,  trains lay representatives and develops responsive  health, care and education organisations.  Feel free to contact us to discuss the opportunities.  Follow MAC on Twitter @publicinvolve

If you go down to your A&E department today, you could be asked a puzzling question:

“how likely is it that you would recommend this service to friends and family?”

Happy patient (image from bricklink.com)

From this month, NHS trusts are implementing their new friends and Family test, which in essence is using the NetPromoter® recommend question intended to highlight areas of excellence and Trusts, departments and wards that are struggling.

Not #Tripdvisor for the #NHS

The plans were reported in the Guardian at the end of 2012 (New mothers will rate midwives and doctors on childbirth care) and while I am all for transparency and scrutiny, I really struggle to see how this particular patient feedback programme is going to help the NHS.

The story was a source of amusement for the comedians on Mock the Week -

“OUCH! I’ve cut off my arm. Hang on a sec while I log onto Trip Advisor to choose a hospital.”

“I’m terribly sorry for your loss. Before George passed away, did he say anything about the food? Do you think he thought it was excellent, very good, or just ok?”

In an emergency, choice doesn’t really come into play – it is the luck of the draw where you are, and external factors such as having a consultant cardiologist in the crowd or your accident on Friday night coinciding with the booze rush-hour. Besides, patients don’t think that there is a choice, so why ask the question? In fact, can patients answer this very question? (more issues are raised in the Guardian: The friends and Family test is unfit for purpose)

Our own experience measuring customer satisfaction and/or willingness to recommend in business, when customers have generally received a helpful service for free, are mostly scores 10 out of 10 and a few 9′s. The fact there were problems in the beginning, that “we got there in the end”, or any event that isnit intended part of the customer experience are not reflected in the score.

The problem with Benchmarking

While poor scores can be used as a “lever” to encourage (or force) improvements, a score alone doesn’t help explain the why (root cause analysis, anyone?). This is why services like the very good Patient Opinion (which is a Trip Advisor for the NHS, but used by the NHS to fix issues) are popular and effective. In the absence of actionable data, perhaps departments will decide it is easier to game the system to boost their scores? And the danger with benchmarking is people become obsessed with Are we on the bottom? No? Well, that’s all right then.

Ultimately, if the average score across the UK hovers around 65 (out of 100), who decides this is a good thing or needs improving?

The guidance for NHS trusts acknowledges that the friends and family test does not replace existing feedback being collected on a local level, and leaves the decision on how to implement the patient survey with each trust. If the results are intended to be collated centrally this makes no sense. Surveys are not neuroscience but it’s easy to accidentally (or deliberately) artificially improve on customer feedback ratings, and this particular test really feels like a case of comparing apples to pears (and all other fruit).

Surveys can be powerful tools and help drive real improvement and (in business speak) “improve the bottom line”. But a saying from my old company won’t go away

“do it right, or don’t do it at all”

You can go home when you’ve filled this form in

When the nurse hands you your feedback form and tells you to fill it in before you can be discharged, tell the truth and just hope it’s not their shift when you come back to have your stitches taken out.

So step forward Patient Powered Improvement –  the new name for PPI.  As a bellwether, even the editors of BMJ have twigged to the importance of “patient powered health”.  Perhaps its clinical readers will take note, as they should also of the launch by Centre for Patient Leadership (CPL) of an impressive and inspiring tool kit  to help everyone get on board with patient leadership.  Its name could not be more apt: Bring it on – 40 ways to support Patient Leadership.  We believe that patient leadership provides a great example of Patient Powered Improvement.

Bring It On – the new CPL guide and toolkit

Bring it On explains what patient leadership means and the role and purpose of Patient Leaders. It aims to help NHS organisations foster patient leadership and Patient Leaders. It was developed as part of the NHS Midlands and East SHA’s work on improving patient and customer experience. The guide provides descriptions of key concepts and ideas and things that can be done to foster patient leadership. It includes examples, case studies, tools (such as self-assessment frameworks, checklists), top tips, useful background materials and places to go for more help.

The wide availability of Bring it On means there is now no reason why every part of the NHS cannot seriously consider enabling the development of local patient leadership as a valuable new asset to support co-created change which benefits everyone and makes better use of tight resources.  Its easy: just do what it says on the side of the new tin.

It is important to be clear about who “patient leaders” are. For CPL, who originated the PL programme, patient leaders are those patients, service users and carers who work with others to influence change.  They are everywhere: not just as representatives in institutionally-led engagement structures, but health champions, community researchers, patient entrepreneurs, activists and campaigners, peer to peer supporters and many more.

We agree.  The big challenge to the new NHS organisations in England is not to pigeonhole this, but to have the boldness to foster patient leadership and then to work with patient leaders.  That’s the kind of culture change that Robert Francis said had to happen.  And that’s the only way we can see to change the prevailing “look up not out” managerially based behaviour.  As they say in North America, “it’s time to get with the programme”.   And time is not on anyone’s side.

Patient Leaders Plenary needed

NHS England could help a lot with this.  It is is designing a “Civil Society Assembly”.  We think this initiative would be much more practical and useful if it was reshaped as an annual “Patient Leaders Plenary” –  a virtual gathering  where patient leaders  from around England could meet to exchange learning around their own development,  decide what they want to do and be supported to do it.  This may include what service changes have worked and how they influenced change.  A plenary with this rich mix would give the initiative purpose and focus and create a huge asset which commissioners and providers could use.

Crowdsourcing this plenary from Patient Leaders themselves would mean the evidence base would grow quickly and  have maximum clout and exposure to encourage wide adoption.  NHSEngland’s new three year business plan Putting Patients First  makes one of its offers “listening to patients and increasing their participation”.  That’s good but it has to mean a lot more than the Friends and Family test.   Having Patient Leaders in the right places – which means having them everywhere – could help to push things much further.

Patient Powered Improvement has to be the biggest part of what success looks like in the new arrangements.  We think the main driver for the “new PPI” has to be patient leadership.  Why? Because it’s the logical thing to do in an asset based approach to change and doing better with less.  We all know – from frustrating experience – that the traditional PPI involvement and engagement approaches have limitations. Of course, Patient Leadership and “PPI” are not synonyms, but the latter isn’t going to succeed without the former.  We the Patients should “put” ourselves everywhere, not be “put” places by others.

The Millar Adamson Craig Partnership supports user and public participation,  trains lay representatives and develops responsive  health, care and education organisations.  Feel free to contact us to discuss the opportunities.  Follow MAC on Twitter @publicinvolve

93 year olds with IPads 

My mother is 93 years old and has an iPad. She wants to know why she can’t FaceTime the practice nurse. So do I.

93 year olds with IPads like Roy’s Mum are  not the distant future.  Much of it is here already.  British society – the patient population  - is changing.    UK domestic internet access will soon be near universal and this will empower patients and service users like nothing else before.

Transparency and access to data about providers is a keystone of the information revolution objective of NHS England’s  Everyone counts: planning for patients 2013/14   Younger healthcare consumers will expect to access things on their tablets and smart phones like they do the rest of their lives.   And many of them will want to do this – with consent  - on behalf of their parents and older relatives to give them the benefit too even if they don’t have the technology themselves.

The NHS is not being responsive.

So, why can’t Roy’s Mum FaceTime the practice nurse at her surgery on her IPad  and thereby make fewer demands on them by sorting out queries in a simple and convenient way?  The answer is “it’s not allowed by the culture”.   Underlying that is an exaggerated fear about “confidentiality of named patient data”.

But one has to shout loudly at this point: “Whose data is it anyway?”  Information about me belongs to me.  If I agree that I don’t mind sharing information about myself over social media with a healthcare provider I trust and who is keen to do it, then that should be my decision and their’s not someone else’s.

But the guardian of all things medical the General Medical Council does not agree.  They contend:

“Social media sites cannot guarantee confidentiality whatever privacy settings are in place”. “[Doctors] must not use social media to discuss individual patients or their care with those patients or anyone else”. GMC, Doctors’ use of social media  -March 2013

Question: what does “social media” mean in the GMC’s prohibition.  Answer: the GMC doesn’t seem to know what is public accessible and what is not.  What about Skype person to person audio and video links and direct messages sent via Skype?  Or Direct Messages sent to a particular follower on Twitter?  Face Time for an IPad user is also “1 to 1″ with another IPad/smart phone user.  None of these are “publicly accessible” as far as I know.  Some surgeries have been using text messaging to remind patients about appointments, prescriptions, test results and other things.  It seems to work well.  Does the GMC not approve?  Not if we take their words at face value.

Throw out the Fax machine now 

It sounds like the GMC is simply trying for a blanket prohibition without understanding the differences in the technology and its applications.  This really has to change.  Some surgeries say they will communicate with patients via fax – FAX!  Who has one any longer? Mine went to recycling years ago.  Why not scan a query or report and send as an email attachment?  

The Kings’s Fund says that 60% of GP practices already have the IT in place to allow online access to our records, but that only 1% of them currently do this.  So “the culture” excludes the rest of the 99% of us – the customers and co-owners of the NHS.  There is no rational justification for this and we must demand that it stops. 

Hijacking my BP readings isn’t a concern 

I have taken by blood pressure readings at home for years and sent the results more or less dutifully to the practice nurse at our surgery.  We communicate normally by open email, which means that I don’t have to go see her and take up her time for routine advice that I know anyway.  Do I worry about my personal data being hijacked?  No. If someone wants my BP readings they are welcome to them.

It should be an individual decision depending on the kind of data.   If I were a celebrity footballer being treated for some exotic condition it might be a different matter, but for routine lifestyle things and long term conditions management – which take up so much surgery  and out patient clinic time –  why not use the simple IT solutions with everyone’s consent?  Sure, it could go wrong.  But if we don’t trust the customers and the clinicians first to try to get it right then we will never get anywhere by strangling this at birth as the GMC seems to be trying to do.

Stop the gulf of expectations widening 

Failure to maximise access through use of IT solutions just encourages the gulf to widen between our everyday experiences and expectations of how modern life works and the ability of the NHS to be responsive to us.  We are in the 21st century and most of the NHS is stuck in the previous one.   That undermines trust and confidence.  It also increases risks about patient safety and quality outcomes, to say nothing about user satisfaction.

It’s time to change things, starting with the Luddite advice the GMC is giving doctors about social media.

The Millar Adamson Craig Partnership supports user and public participation,  trains lay representatives and develops responsive  health, care and education organisations.  Feel free to contact us to discuss the opportunities.  Follow MAC on Twitter @publicinvolve

Perhaps the time is overdue for the eminences of the national religion that is our NHS to retire into a conclave and finally decide who is in charge. We won’t be holding our breath for the white smoke – those of us left with functioning lungs. We will have staggered away – our walking frames creaking under the load of our obese bodies – for another ludicrously underpriced drink as a further (final) test of our battered livers. Life goes on – with only the prospect of getting our care free after getting through our last £72000 to sustain us. Enough for quite a few drinks there.

Francis to the Fore

Those who chronicle NHS doings are in a particularly fevered condition these days. Not because they have been refused antibiotics by their GP – go see your vet instead – but because they are all agog at the imminent start of the new regime of commissioning. That is the future but there is also an appalling legacy of the past chronicled in the Francis report which the NHS must understand before it can leave behind.

Andrew Craig wrote in February about moving engagement and goverance on from Francis arguing for investment in patient leadership, stronger local mechanisms and strengthening governance with more support for non-executive directors and governors in Foundation Trusts. Who carries the can for mid-Staffs? is a question occupying the media mind and we contrasted the uncertainties of the NHS with the clarity of the maritime chain of command. March 6th was the sad day when the ferry Herald of Free Enterprise sank and the brutally clear verdict of the  enquiry was the Master of the Vessel is the man in charge on the day and he suffered the consequences.

New Model Consultation Needed

National Voices pointed out that Francis had in fact the old and discredited model of patient consultation in mind – patients outside shouting in. Their report lays out a lot of what has to be done straight away without forming working parties in every unit and department of the NHS to consider the 300 odd recommendations reporting back months or even years later.

It is a sad fact of public life (and the NHS seems particularly prone to this malaise) that enquiries beget enquiries so surprise surprise (not) another enquiry into NHS complaint handling. We have take a fairly radical line and say that if after years of studying the topic and volumes of guidelines produced, NHS complaint handling is still not working then we have to start again from scratch and think of a different way of doing this. Are complaints too difficile for the NHS? Doing the same thing over and over and expecting different results – is this insanity?

Finding New Ways to Do Things

Innovation is vital and two pieces looked at ways of changing the way we access and use NHS services. Caroline Millar was very much in favour of GPs taking up Sainsburys’ offer of free premises in their stores. In Caroline’s view ‘Convenience of access for patients and decent premises are surely assets for any good GP practice and will contribute to high quality care and a good patient experience.’ She regretted the dog in the manger attitude of some GP trade spokepersons.  Mind you it is not just GPs that may have difficulty in changing their habits and knowing how best to promote or to access health services. The public needs to understand when A&E is the best place to go and when they can get help somewhere else. Andrew doubted whether a campaign under the mystery name of ‘notalwaysaande’  – do you get it? – was a good way of doing it. If you were in Spitalfields recently and saw a large wounded yellow figure, that was what that was about. Another attempt to promote the right way to use emergency services is the 111 number for ‘less urgent’ cases- again Andrew questioned whether Wandsworth was going about it a way callers could understand.

A&E is always a flash point and ‘reconfiguration’ of those services – otherwise known to the public as ‘closing my A&E department and condemning me and my family to dying in an ambulance’ – a particularly good way of getting people going and ensuring that change means confrontation. So it worried our man at the conference where Sir David N (have we mentioned his name before?) seemed to suggest that you could only have care plans if you saved money by reconfiguration of other services such as A&E – see above. Co-design of services is essential if these unproductive adversarial shouting matches are not to continue. We have seen the sad consequences in the row about closing down Lewisham A&E.

 When Will There Be Good News?

Well Kate Atkinson has published another book – sadly not about Jackson Brodie – but good news nonetheless. In our world, there were some cheering signs of commitment to patient and public engagement in new CCGs. They want to do it differently, they want to do it right and they hunger for ways of understanding how well they are doing? Good luck to them. If they are looking for some principles to underpin the way they do their commissioning, take a look at the elements outlined here taken from the continuing narrative for integrated care devised by National Voices for the NHS Commissioning Board:

• All my needs as a person were assessed and taken into account.
• My carer/family had their needs looked at and were given support to care for me.
• I was supported to set and achieve my own goals.
• Taken together, my care and support helped me live the life I want to the best of my ability.
• I was in control of planning my care and support.
• I could decide the kind of support I needed and how to receive it.

And from there to our latest thoughts from integration to partnership.

GPs and health workers cannot still be in the driving seat, only explaining more and sharing data.

Patients must stop being just “patients”. We must be invested in to become assets, leaders and real partners in care and co-owners of the system we pay for.

See what else I think a really radical manifesto for primary care should have included to really break the boundaries.