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Patient from Hell: Lies, damned lies and statistics

Wed, 10 Mar 2010 09:00:00 GMT

The failures of Mid Staffordshire show that mortality data is not the best way to judge a hospital, argues the Patient from Hell Dick Vinegar

What worries me about Mid Staffordshire NHS Trust is that it was not complaints from patients' relatives that triggered the scandal, but the mortality statistics. And when Dr Foster, in 2007, first exposed these rates as being 25% above the national average, the chief executive tried to rubbish them, putting them down to coding errors and poor quality of data. It then took two years before the Health Commission finally exposed Mid Staffordshire in March 2009.

This reminded me of reading, just after I had had a thyroid operation in 2000, that my hospital topped the post-operative mortality league table. So count yourself lucky, dear reader, that I am still here to entertain you.

A year or so later, I found myself making a sick joke about this to an audience of hospital trust chief information officers, in Portcullis House in the heart of Westminster. The joke went down like a lead balloon, and in the coffee break, they all avoided eye-contact with me. Except one, who shuffled over to ask me whether the hospital in question was 'H' hospital. Indeed, it was.

He introduced himself as the IT manager, and explained that the hospital had presented the statistics all wrong. These were the early days of mortality statistics, but he had already learnt the hard way that massaging stats was an essential part of an NHS executive's management skills. The welfare of the patient is secondary.

So, when Richard Francis QC, in his report on Mid Staffordshire in February calls for a single hospital standard mortality ratio (HSMR) as an "impeccably independent and transparent source", he is crying for the moon. Hospital trusts have become expert in manipulating data, and will do so even if the most rigorous mortality standards are imposed, if they sense that their figures are bad.

And, even if they were scrupulously honest and not trying to massage the figures, different coders will interpret the rules differently. That is a law of nature. And the stats will vary between hospital and hospital.

I have an even more fundamental objection to mortality statistics as a way of judging whether a hospital is failing. They are always out of date, even without the delays caused by hospital administrators trying to rubbish them. The original Dr Foster alert in July 2007 covered the years 2003-06. Yet it was not taken seriously until March 2009. During those years, how many people died?

Even in a world with streamlined and accurate HSMRs, by the time they are published they will be at least two years late. That is inevitable. Hence, another law of nature: stats cannot be both timely and reliable.

And mortality stats are not the only criterion by which to judge a failing hospital. Patients may not die because they are left lying in their own faeces. They may not increase the mortality ratio. What matters more, as Richard Francis has twigged, is that the regulators paid no attention to the concerns of patients and relatives, but responded by referring "to data of a very generic type, such as star ratings, CNST (clinical negligence scheme for trusts) levels and so on". He concluded that "benchmarks, comparative trust ratings and foundation status do not in themselves bring to light serious and systemic failings".

Hitherto, statistical data has rooled OK in the NHS. Maybe Mid Staffordshire will be the turning point when the NHS turns away from computerised dodgy stats and tick lists, and turns to the evidence of patient complaints and the evidence of inspectors' eyes, ears and nose.

I apologise to you readers, who are mostly IT types, particularly coders who have sweated long hours producing all this stuff, for degrading the importance of the statistical data. But a lesson in humility never did anyone any harm. Computer systems are not the most important things in healthcare. Clinical skill, sympathy and common sense are.

It worries me though that the six month review of Mid Staffordshire in September 2009 found that it had not yet implemented an effective complaints system. Ingrained bad habits die hard in the NHS.

Patient from Hell: Is the iPad right for iPatients?

Wed, 24 Feb 2010 09:00:00 GMT

Apple's latest release has the makings of a device for patients, but it has a few big flaws, reckons the Patient from Hell

A year ago, when I was spending much of my time in hospital, I suffered severe internet-withdrawal symptoms. I could neither browse my favourite sites, nor handle my email. I was in a quandary. Should I buy a laptop or netbook, to tide me over until I got back to my trusty iMac? That would have been expensive, and fiddly to set up internet access from my hospital bed.

Or should I go for a Blackberry or an iPhone? Easy and tempting. But there were two problems – other than money. With my shaky ageing hands, keying stuff in on the tiny keyboard (Blackberry) or touch screen (iPhone) was a no-no. And my failing eyesight gave me difficulty reading the small screen.

So, I did nothing, sat and suffered in my hospital bed, and waited for something more patient-friendly to turn up, before I found myself having to go into hospital again.

So when Steve Jobs announced his tablet last month, himself fresh from a hospital bed, I became very excited. The iPad seemed to be the answer to a patient's prayer. It has a decent-sized visible screen (9.7 inch), which the visually impaired can enlarge material further if they want. It has a touch-screen keyboard about three times the size of the iPhone keyboard.

At 1.5kg, it is about a third of the weight of a normal laptop, and therefore more comfortable on the bedtop. I know this is important, because my friends Tom and Charles, coincidentally, both spent their last few months proof-reading books. They didn't look comfortable. Pressing keys and manipulating trackerballs is not easy in bed. The iPad's touchscreen looks more bed-bound friendly.

And, another important point in today's MRSA-infected hospitals: the iPad presents a smooth wipeable surface, unlike the keyboards of laptops or netbooks, where all sorts of bugs may lurk.

All this assumes, of course, that the hospital allows you to use its WiFi. Now for the downside. I expected the iPad to be a large iPhone, but it isn't. It's a large iPod Touch, with no hint of a phone about it. So the patients would still have to bring their own mobiles into hospital, or use the hugely expensive hospital bedside telephones.

As well as a phone, I had also expected an inbuilt camera, for two purposes. In hospital, it would be nice to see and be seen by family members when you Skype them. And when you go home and get telecare – as everybody will within five to ten years – the medic or social worker can have a better idea of your state of health by looking at you.

Talking about telecare, I have been wondering whether the iPad would be the ideal platform for this. It has an easy user interface and it is designed to link to the outside world. Sadly, in its present configuration I think not. Telecare implies linking up arrays of sensors and instrumentation to the patient, but the iPad lacks connectivity, with just one USB port used for charging and connecting cameras.

So, overall, I regret that the iPad mark one is not for iPatients. But I'll bet that it will evolve into an iPhonepad, with a camera and more input ports. So, wait for iPad mark two or three, which could be the fully featured telecare machine.

Patient from Hell: The Patient's better half

Wed, 10 Feb 2010 09:00:00 GMT

The Patient from Hell doesn't have any close medical relatives to give him clout, but he and his wife have found a way to get the best out of the NHS

The big moments in any patient's health crises are the consultations with hospital doctors, but it has always puzzled us that patients go into these totally unprepared. It seems nuts that ill people go on their own into consulting rooms, and have to remember all their symptoms.

Then they have to listen to what doctors say, ask sensible questions and remember the answers. But an ill person is ill, for heaven's sake. The faculties are impaired and the chance of productive interchange between doctor and patient are minimal.

Yet, I suspect that about 95% of consultations are such asymmetric affairs, where the input from the patient and the final output to the patient are tiny. The official record of the consultation will be purely the doctor's view.

So, about 15 years ago, when my wife and I started going together to any important consultations, we would prepare beforehand a list of the symptoms and a set of questions. We would do this on a computer, so that we could cut and paste the questions into a coherent order.

There is another reason for doing as a computer print-out; it makes the doctors nervous and aware that we are people they can't mess with. And, course, before going into the consultation, we would do a quick browse of the internet, to see if there were any relevant facts we could glean, to understand our condition better and to make our questions more to-the-point.

During the consultation, it would be the non-ill person who would ask the questions and would write down the doctor's answers. This would give us valuable ammunition to fire, if the consultation was not followed by the action decided. The next stage might be to send a patient review of the meeting to the consultant, to become part of the patient's record. Cheeky!

When we started conducting consultations our way, some doctors, particularly the senior consultants who were at that time completely in-computent, were shocked and angry. Younger registrars, who were enthusiastically coming to grips with the first generation of hospital records, were quite supportive.

Eight years ago, I outlined our approach to a GP, who was at that time on the IT Committee of the BMA. He exploded. "You're the patient from hell," he said. "It is people like you who are driving the NHS into bankruptcy, because every consultation with people like you has to take three times as long as consultation with a normal patient."

I thought he was joking, as we were in a pub quite late one evening when he said it. But I have since met some of his patients who find that fast patient-throughput is a hallmark of his surgeries! I am, however, grateful to him, as he gave me the title of these columns.

More recently, attitudes seem to be changing. Nowadays most doctors – except the pushy, impatient, career-oriented ones – seem to relish our approach. One of the things that endeared me to 'Fastrack Hospital' when they started treating me this time last year for a life-threatening condition was that their brochure suggests that patients should bring a relative or friend to the initial consultations, and do exactly as my wife and I have done for years. To me, this was a beacon of light, shining in a wasteland.

This was the first time that I have seen any NHS document recommend how patients should approach these all-important consultations. It is high time somebody else did some thinking.

Patient from Hell: Friends and family beat Choose and Book

Wed, 27 Jan 2010 09:00:00 GMT

If you want a quick hospital appointment, deploy a friend or relation with medical clout, says the Patient from Hell

Last autumn, I recorded in this column the difficulties experienced by my friends Charles and Tom in getting timely and effective diagnosis and effective hospital treatment for their cancers, from which both died. In November another contemporary, Bill, had to wait nine weeks for a surgeon to deal with a prostate crisis, which turned out to be malignant.

It is a long-established theory that the NHS is a two-tier system. The higher tier, which gets great service according to the theory, is white, middle-class, university-educated, articulate, internet-savvy and speaks proper. The lower tier is the rest of us – in other words, about 95% of the NHS's patients.

In the last year, when I see what has happened to Charles, Tom and Bill, I find that the above theory needs modifying. They were white, middle class and so on, and therefore should have qualified for the top tier service, but nevertheless the system beat them. I have come to the conclusion that it was partly their fault; they were not stroppy enough.

They had a problem: they grew up during the war, and went to boarding schools. Consequently, they grew up with an automatic deference to authority. So when they came to be messed around in the last six months of their lives by the glacial diagnostic processes and poor communications of the NHS, they were reluctant to make waves, or, as I would put it, demand their right to better treatment than the rest of us. So they didn't.

This infuriated Charles's son, a neurology consultant, who wanted to march in with big feet, to use his medical eminence to extort better treatment for his father from the lackadaisical (though prestigious) hospital, which was treating him.

Both his father and his mother opposed their son, on the grounds that rocking the boat would be counter-productive, and also because it was wrong socially and morally to 'pull rank' medically. I understand that colossal family rows ensued.

In the end, it was only when Charles told the hospital that he couldn't take any more chemotherapy, and the hospital responded brusquely that he was on his own then, that Charles's son weighed in with the patient advice and liaison service to get decent palliative care for his father. This worked a treat. I ask myself whether his intervention earlier might have accelerated his father's treatment in hospital, extended his life, and reduced the trauma to his family.

Last week I heard of another contemporary having to call on family medical clout to get a consultant appointment in an acceptable length of time. This time it was a sister-in-law in a university town, aged 85, who had an MRI scan at the beginning of December and then an interminable wait for a consultant appointment on which hangs a major operation. When the appointment finally came through just before Christmas, it was for a date late in January with a junior doctor who had no knowledge of her case.

Her GP was furious, and suggested that my sister-in-law should ask her formidable consultant paediatrician son to intervene. He did, and bingo, he got an appointment two weeks earlier than the original date, with the right consultant who knew her history. To make doubly sure that she got the right clinical advice, the consultant son travelled some distance to support his mother at the appointment.

I found it significant that it was the GP who suggested that the son should march in. To me, it was a tacit acknowledgement from one part of the NHS that the normal appointment system, Choose and Book or whatever, for this hospital is a shambles, and the only way to sort out the problem is to "pull medical rank".

I find this rather shocking. It is no longer good enough just to be white, middle-class and articulate, to get top-tier and timely treatment!

I blame the coexistence in some hospitals of Choose and Book with traditional telephone appointments, causing both systems to foul up and leave patients in the lurch. I suggest that hospital managers and Connecting for Health spend some time sorting out this rather elementary problem, before they embark on any brave new computer initiatives costing millions.

In a fortnight, I describe a way of getting good service from the NHS, even without medical clout.

Patient from Hell: No hiding place for Cameron

Wed, 13 Jan 2010 09:00:00 GMT

The Conservative leader's plans for the NHS take the right attitude, but lacks distinctive policies, reckons the Patient from Hell

David Cameron has been reading the Patient from Hell. Or bits of it at any rate. In launching his draft manifesto for the NHS, released on 4 January, he proclaimed that he will publish all information about doctors and hospitals, so that there will be no "hiding place for failure". He offers "an information revolution, so that everyone will know who is providing a good service and who is falling behind".

Great, that's what I like to hear. The patients will be given the tools to fight back under a Tory government.

But hang on a bit. Is the Tory search for better ways for the patients from hell like me to answer back much different from current Department of Health attempts to give the patients a louder voice? It seems to me that the Cameron "reforms" are no different from what Labour is currently trying to do with the NHS.

For instance, David Cameron wants to "decentralise power, so that patients have a real choice", and will encourage hospitals to compete for patients. Surely, Labour's choice agenda, enshrined in the dreadful Choose and Book software, has been trying to do just that for about five years? Not with much success, I should add. Shouldn't an incoming government try to avoid the mistakes made by its predecessor?

Cameron, chasing his ideal of decentralisation, wants to create "fully autonomous foundation trusts". Again, this is exactly what Labour has been trying to do for years. As a patient, I sometimes worry about this policy. In these columns I have described the bad communications and administrative failures which I believe shortened the lives of two of my oldest friends, Charles and Tom (A matter of life and death, 26 August 2009). Both of them were treated by foundation hospitals.

Furthermore, the hospital trusts which recently fell foul of the Care Quality Commission, Colchester and Basildon, both had foundation status.

I begin to fear that the greater autonomy enjoyed by these hospitals could actually contribute to their poor patient care. I go on to think that, maybe, the constituent parts of the NHS can only provide an acceptable level of service, if they are heavily regulated from the centre. Now that's a really heretical statement with which to start the New Year!

On health records, David Cameron announces: "We will put patients in charge of their own health records, with the ability to choose which providers they share them with." This sounds good on the surface, but does not specify the important things about health records, which are where they should be held – on the Spine or by GPs or PCTs – or what they should contain – just basic information such as allergies or complete records of treatments at whatever hospitals or clinics the patient may have attended over the years.

At least, the draft manifesto document seems to have abandoned the idea of handing the patient record over lock stock and barrel to Google or Microsoft. That's a blessing.

David Cameron says loudly that the most important people in the NHS are patients. After that I feel a bit mean to niggle, but there is still a lot of work to be done before the Tory party has a coherent healthcare policy which shows clear blue water between it and Labour. Half-baked is a word that springs to mind.

Patient from Hell: No help from the big beasts

Mon, 14 Dec 2009 12:20:56 GMT

Patients are getting a raw deal from the professional institutions in the health service

When NHS patients look for help, where do they tend to find it?

Not from the august bodies that have been set up over several hundred years to control, supervise and promote the practice of medicine. Not the hospital governors, not the Royal Colleges, not the General Medical Council, not the BMA, not the Patients' Alliance. Not even the local press and MPs. Not, above all, the Nursing and Midwifery Council, which chose to strike off Margaret Haywood for blowing the whistle on appalling conditions at the Royal Sussex Hospital in Brighton (although her appeal was successful). A vulnerable patient like me seems to have nowhere to turn to in the face of this regulatory breakdown across the NHS.

I don't know much about these august bodies, but have suspected for a long time that they are part of the problem not the solution. The one that has the highest profile, and seems to me to betray the most subconscious unreconstructed 19th century attitudes in its public statements, is the BMA. I know it is not a regulator but a trade union, but surely it should pay some attention to the plight of the patients in its members' care.

Instead, what it does is to deplore websites like patientopinion.com and Iwantgreatcare.org, which encourage the patients to answer back. The BMA fears that individual doctors and hospitals will be smeared by anonymous malcontents and other patients from hell. Yeah, OK, there is a remote danger of this, but surely it should welcome these running surveys – costing the NHS nothing – which can give advance warning of which clinicians and hospitals are failing. Or perhaps the BMA is only interested in protecting its medical members?

It seems to me that when statistics based regulation is being shown to be too slow, and whistle blowers are terrorised into silence by management, that these 'healthcare 2.0' websites provide a new desperately needed line of defence for patients.

In March Gordon Brown announced a new NHS initiative for patient feedback, Working together: Public services on your side. Immediately, some panjandrum from the BMA complained that "the consumerist approach being advocated by the government is not well suited to the NHS. Patients are not supermarket customers, and doctors are doing more than providing an easily rated commodity….. There is a risk that this exercise could reduce NHS care to a meaningless popularity contest, encouraging perverse behaviours and an emphasis on the superficial."

I would have thought that there is not enough consumerism in the NHS. The consumer is hardly heard, despite the mantra intoned by all levels across the higher echelons of the NHS that "patient safety is paramount" and "we welcome feedback from patients". Indeed, doctors could learn a lot from some of the customer service practices of supermarkets.

Worse still, the panjandrum's statement betrays contempt for the patient. Of course, every patient realises that the NHS is not a supermarket. He or she expects better, more empathetic service from doctors and nurses than is on offer in a supermarket, and realises that what he gets is more than a commodity. Patients are not stupid

Whatever makes the panjandrum think that if a patient is moved to write a review about treatment from a doctor or hospital that may have saved his life, that he will approach it as a "meaningless popularity contest" and emphasise "the superficial". The very idea is insulting and patronising to the average patient. But it does reveal how far attitudes at the top of the BMA have to move before they reach the 21st century.

Patient from Hell: A tale of two hospitals' data

Wed, 02 Dec 2009 09:00:00 GMT

Hospitals vary hugely in whether they share data with patients – or with their own departments, says the Patient from Hell

A favourite argument among politicians and IT-pundits right now is about the question of "who owns my data?" This is a largely Tory reaction against Labour's perceived penchant for creating monster 'Big Brother' databases, like the identity register and the health service's Spine. They think it would be cosy for all citizens to "own" their own data. I almost agree, up to a point.

I am a patient of two hospitals. One is the specialist 'Fastrack Hospital', which sends me copies of all the pathology readings, discharge summaries and outpatient reports that they send to my GP. The other, a general hospital, keeps me in the dark.

The contrast between my feelings about the two hospitals is stark. At Fastrack, I really believe the rhetoric about "patient and the clinicians are all part of the team" – even though I sometimes have doubts about the treatments some of the "team" are handing out.

At the general hospital, I feel that the doctors are holding something back, just because I am not copied in. I am being most unfair, because their treatment is excellent – and, more importantly, they laugh at my jokes.

My suspicions may date from an operation I had there 17 years ago. It was most successful, but gave me, without any warning, a life-changing side effect. (As this is a family column, I will not spell out what the side-effect was.) I have never trusted them wholly ever since. I remain frustrated and resentful that they do not give me the chance to check out that record of mine.

Conversely, I enjoy seeing my Fastrack record. It gives me a feeling of being somehow in control. In theory, I would like to go further, and question some of the details, which are plainly wrong and misleading. But I have not so far plucked up enough courage to do so.

So I am still quite far from truly "owning" my record. In fact, I don't think I want to own it. That would imply having to manage it, which I, and most other patients, would be quite incapable of doing.

Another nice thing about my Fastrack record is that it is not just in the hands of the doctors. I found when I was an inpatient that physiotherapists, people in the lymphodoema clinic and pharmacists had access to it.

This is not the case in the other, general, hospital. How the doctors in that hospital can pretend that all these services are part of the team, but not allow them access to my vital statistics, is beyond me. Actually, I do understand it. It is 19th century medical snobbery. That's what it is.

So, all I ask is that my record is all in one place, and is accessible to me and ALL those who are treating me. Not much to ask, surely, but we still seem to be miles away.

To comment on this article, email sh@kable.co.uk

Patient from Hell: Delivering summary justice

Wed, 18 Nov 2009 09:00:00 GMT

There is no point in hospitals providing discharge information quickly if they leave out all the useful details, says the Patient from Hell

When my mate Bill left hospital after his prostate operation last month, he was presented with a discharge summary. This took the form of a lengthy proforma, which had boxes for recording all the readings taken during the operation and afterwards. Bill was a bit puzzled because "not recorded" was written in nearly all these boxes. The result was that the discharge summary did little more than announce that he had had the operation.

I was rather shocked by this. Clearly, the summary form had been designed to carry a lot of meaningful information, but the doctors had just not bothered to enter it. This was a particular shame in Bill's case, because he had never been in hospital before, and this discharge summary could have been the foundation stone for his patient record.

I find that I am not the only person to be worried about inadequate discharge summaries. I read a few days later that a body called the Care Quality Commission has written a report, which says that 81% of GPs found that "information shared between GPs and hospitals when a patient moves between services is often patchy, incomplete and not shared quickly enough". The GPs' main grumble (from 53% of those responding) was that they didn't receive discharge summaries in time for them to be useful, despite a national target for April 2010 for all summaries to be sent within 24 hours.

Bill's hospital at least achieved that target, and thereby wins brownie points, but ignores the need for the discharge summaries to be meaningful. I can imagine the consultants receiving the news that they had to achieve a 24 hour target, and exploding "all right then, we'll give them their summaries within 24 hours, but they can't expect us to record anything useful in such a ridiculously short time".

Quite right, they can't, if they use the traditional method of hand-writing the discharge: sending it to Bangalore with all the other outpatients' reports for transcription, correcting all the mistakes on its return to the UK and stuffing the typed results in the strike-bound Royal Mail.

But there are other ways, like voice recognition, which would make meeting the 24 hour target a doddle. But I understand from suppliers of such systems that persuading doctors to change their hallowed working practices to adopt voice response is like drawing teeth. The CQC "advocates the roll-out of an IT system, suitable for sharing more information in an effective way". And now they say it!

Delving further, I find that in 2007 and again in 2008, the NHS Alliance wrote horrified reports about the same thing, and that also last year, the Royal College of Physicians and Connecting for Health were cooperating to develop standards for documentation. I am glad to hear it, but shocked – although not very surprised – that their efforts have not yet percolated down to the hospitals and GPs after two years.

I sometimes think that the NHS is made up of various bodies, like the Care Quality Commission, the NHS Alliance and the Royal College of Physicians, who seldom talk to each other. They have each suddenly realised – years after it has become all too glaringly obvious to humble patients like me – that hospitals do not communicate properly with GPs. They produce reports saying that the situation is dire and something must be done. But where is the drive to push solutions through together? Not from what is laughingly called "Connecting for Health", that's for sure.

Meanwhile, according to the CQC, only 53% of GPs get the summaries in time for the first follow-up appointment. Let's face it: producing timely or accurate records is not high among most hospital doctors' priorities.

Patient from Hell: Taking care of the Bill

Wed, 04 Nov 2009 09:00:00 GMT

The Patient from Hell finds that one of his friends is having his chances of surviving cancer hit by hospital bureaucracy

Recently, I chronicled the problems of two friends of mine, Tom and Charles, with NHS systems. Now Bill*, another mate of mine, is in deep trouble. (If anybody is of a squeamish disposition, look away now.)

About three months ago, he had a prostate crisis. His GP relieved it with a catheter and then booked an appointment with a consultant urologist. This was supposed to happen in four to five weeks, and finally happened in nine, because of scheduling problems.

This delay shocked me. Surely, if somebody in their late 70s has prostate trouble, you suspect you-know-what and jump all the queues. When, finally, he got round to seeing the consultant, he agreed, obviously, that he needed an operation, which happened in another three weeks.

The tests done after the operation have found malignancy (surprise, surprise), and he has just had a series of scans to see whether the cancer has spread. At last, a sense of urgency has crept in, but I get angry about the nine weeks he has lost because of hospital bureaucracy. Hospital systems may be in place, but are not working in a timely fashion. And Bill does not live in the sticks, but in a university city.

Bill is one of those chaps who has always steered well clear of doctors. He has never gone in for periodic health checks or any that nonsense. In his ignorance, he had always believed the mantra that the NHS is the best health service in the world, but until now, he has never had to test it.

His view, after four months of medical and emotional trauma, has changed: he is impressed by the doctors, but already finds the NHS systems are rubbish. He has also realised that the administrators and many hospital staff operate for their own convenience, not the wellbeing of the patients.

I find this a tad harsh, but it seems, from my experience, a useful hypothesis to base a strategy of self preservation within the NHS. Absolute trust is no good. Bill may be shaping up to be a doughty Patient from Hell.

He is a quick learner, and has twigged that his chances of survival depend on effective coordination and communication. So he has asked his GP to mastermind of, and be the information hub for, all his treatments in hospital or wherever. Unlike my usual hospital 'Fastrack', his hospital does not copy all consultant-to-GP letters to the patient, and so Bill has less access to what is going on than I have. And therefore less personal control of his own treatment. So, the GP must fill the gap.

His GP told him that nobody has asked him to do that before. This amazes me. I had always thought that that was what GPs were for. Indeed, it was this function – not just prescribing pills – that justifies their large salaries. My own GP makes sure that I am treated by the best surgeons around, in the hospital departments most likely to sort my various ailments. But I am not sure whether he would want to be the guy who is calling and coordinating all the shots, and telling hospital consultants to take a jump.

This is what Bill is asking for, and rightly so. The GP is the person where all the care pathways meet. So I was delighted by the positive response by Roz Foad of the BCS to my tentative suggestion last month that the GP, not the Spine, should be the custodian of the electronic care record. If the GP holds the record, then he rules the clinical world. And Bill may survive.

*Not his real name

To comment on this article, email sh@kable.co.uk

Patient from Hell: Dead serious blogging

Wed, 21 Oct 2009 08:00:00 GMT

Some of the best medical advice comes from blogs written by patients suffering from life-threatening conditions, finds the Patient from Hell

Today's patients have one great advantage over our predecessors: the internet. I am not talking about official NHS websites, worthy though they are, but patients' blogs. I started using them back in February after my operation, when I had an irritating build-up of fluid underneath the wound, which had to be aspirated every five days at 'Fastrack Hospital', the specialist hospital where I am being treated.

The doctors were rather vague about how long this uncomfortable condition could last. All the official guff on the condition made it clear that the medical profession had no answers on why it happened or which patients were liable to get it. I found studies of it done in Hong Kong, Warsaw, and of all places, Teheran, but they were contradictory and clearly had found no pattern to the occurrence. The only thing they did emphasise was that the surgeons did not cause it. But, thought I, in the immortal words of Mandy Rice-Davies, "they would say that, wouldn't they".

I asked one of the doctors treating me why there were no UK studies of the condition. He answered cheerfully that the occurrences were so random, that no one in the UK was prepared to waste their time or precious budget on research which would probably be inconclusive. This was at least honest, but not very reassuring!

So, I turned to the blogs, and learnt a lot about how patients coped with the condition. Some indeed had suffered from it for a year or more, and were in some distress. Like me, they were somewhat annoyed with the medics for not coming up with a cure. But I did notice that most of the bloggers stopped blogging about this after a spell. So, I could assume that the condition had gone away. I felt more reassured by the blogs than by the doctors that my discomfort was temporary. Indeed, for me, it stopped of its own accord after about two months.

Over the weekend, I checked out some other medical blogs. One in particular caught my eye, about an aspect of my own long-term condition. The bloggers have all become quite expert on their diseases, and share that information very clearly, and perhaps more importantly, give each other moral support. About 10 postings were made last weekend between a group of about five patients and a nurse. This breadth of instant support is something utterly new, and could make up for many of the deficiencies of the mainstream NHS.

I found the interactions particularly interesting, because some of the patients concerned are being treated at Fastrack and other hospitals near me. Some were open about misdiagnoses and other shortcomings in the past by some of these hospitals and doctors – never Fastrack, I am glad to report. One particular local hospital came in for a lot of stick, confirming horror stories I heard from fellow-inmates of my ward during my stays in hospital earlier this year. These blogs strengthened my resolve never to allow myself to be admitted there, even if I am run over by a bus outside its gates!

I believe that these patient blogs, particularly by patients with life-threatening diseases, are deadly serious and give a straighter view of bad practice in the NHS than the dedicated websites, official or unofficial, which review hospitals and GPs. Furthermore, BMA spokespersons cannot put up their habitual whinge that doctors' careers can be ruined by a single anonymous malicious posting on what they call grassonmygp.com sites.

These bloggers are fighting for their lives, and they tell it how it is. The BMA, GMC et al should scan them regularly and pay attention. They might even learn what patients really think.

To comment on this article, email sh@kable.co.uk

Comment: We've grown a strong Spine

Wed, 14 Oct 2009 08:00:00 GMT

Responding to last week's Patient from Hell column on where to store patient records, the Spine is already playing a central role

Dear 'Patient from Hell',

In response to the article in SmartHealthcare.com on becoming 'spineless', I wanted to write with some reassurance, but please note that I am speaking in a personal capacity, not as a representative of PHCSG or UKCHIP. However do check out the websites for details of what we do, for further reassurance!

GP records are indeed very much better quality, and more complete than hospital records, and the only cradle to grave records in the country. The reason for this is that GPs feel that they have developed their systems, they were mostly written by GPs for GPs and there is great loyalty to them.

They contain information on details of all your consultations, surgery appointments, your laboratory results, vaccinations, discharge summaries about your hospital treatment, medications past and present, allergies, adverse reactions, ECGs, Xray results, care pathways, contact with community services, referrals and more.

They act as an information source to clinicians seeing the patient for the first time, and as an aide memoire when reviewing patients. They are coded, so that searches and reports can be run across virtually any item recorded. GPs and their staff also maintain them well because they are paid according to the quality of the data in there for certain long-term conditions.

There are four main GP clinical system suppliers plus a couple of smaller ones and believe it or not, these suppliers are talking to one another on exchanging records between each other. We need the infrastructure of the Spine to pass records from one GP to another when you move. Over 500,000 of these transfers have already taken place.

We will also need it for electronic prescribing, so that your prescription can be sent straight to the pharmacy you chose, so there is less chance of an error in dispensing. If you have a lab test done at the local hospital, this will be electronically transferred into your GP system (it doesn't even need the Spine for that) within a matter of hours. It is hoped that discharge information will reach your GP in the same way before too long.

I note that your GP uses the Emis clinical system, used by 56% of the country's GPs. From my knowledge of the company, I can tell you that Emis has now developed an enterprise system, Emis Web, which can be accessed from anywhere with access to the NHS's own intranet, N3.

In a couple of years, when this is rolled out, you will no longer need to turn up at your local hospital with a GP printout. Your local hospital will be able to securely pull up a summary of your patient record (after you have given consent, unless unconscious, when there is an override with audit trail) and know your background and all the information they need to treat you. This is already happening in pilot sites in the UK. They can fill in a template which will feed information back into the GP system. The other suppliers are working on exchanging data with this system, and are advanced in developing their own.

In the same way, if you need access to care outside normal surgery hours, your surgery phone will direct you to an 'out of hours' service. The doctor there will be able to pull up details of your previous treatment to care for you safely, and feed back what they have done into the GP system, ready for your next appointment. This is already happening in parts of the country.

Your GP will be able to access your secondary care record details which the hospital has submitted to the Department of Health for payment, thus viewing your entire pathway through care. The second biggest GP system, In Practice Systems, has now signed a contract to exchange data with Emis Systems, so that 80% of the country will be able to use these facilities. Of the other two systems, one is in discussions with the big two, and the other has a different coding system, which has its own problems, but is now more open to co-operation.

On top of this your surgery can, if it wishes, offer you on line re-ordering of your prescriptions, booking your GP appointments, a way of sending messages to your GP, and a means of accessing your records from anywhere in the world. They may not have actioned all of these yet, because there are changes to practice management arrangements to get patients and staff able to run these. Other suppliers will be producing their equivalent modules.

You may have heard the press talking about Google Health or Microsoft HealthVault as an alternative to the summary care record. This was not in the Independent Review of NHS IT recently published, nor part of the Conservative's plans, they just said they would look at it, but it would not be an effective replacement for the SCR.

There is a place for patients to view their records and enter comments, but the record used by clinicians for decisions about your treatment needs to be created and maintained by them. Anyone could store their information on these databases if they so wished, and access them from anywhere with an internet connection, but I personally would think twice before giving my personal medical details to an American company which might have to disclose them to the US security forces.

So there will be alternatives to the national database – rather than the infrastructure to send messages, don't confuse the two. Pulling data from existing systems to a display on the screen, which is not saved when you log off – but an audit trail will record what you have seen – rather than pushing data into a central 'bucket' could be another way of achieving the objectives of data where it is needed, when it is needed, to treat the patient. The outcome of the next election may decide which route is taken.

I hope this has done a little to answer your article, I obviously cannot list everything that is happening, especially the consent and confidentiality issues which are being worked through, but thought you deserved an update?

With all good wishes,

Roz Foad MSc MBCS CITP
Chair BCS Primary Healthcare Specialist Group (www.phcsg.org.uk)
Director of Registrations, UKCHIP (www.ukchip.org)

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Patient from Hell: Being Spineless

Wed, 07 Oct 2009 08:00:00 GMT

Those who wish to scrap centralised electronic care records should say where else they plan to hold the information, says the Patient from Hell

A consensus seems to be growing that a central 'Spine' of electronic patient records is insecure, possibly illegal and crash-prone. It might be OK, perhaps, for summary records, which show allergies but not much else. But even the Summary Care Record, which works along these lines, has after seven long years so far been rolled out to only 370,000 patients.

So, it will be decades, if ever, before a comprehensive national electronic record system could be introduced, even if everybody were in favour, which they demonstrably aren't. And the Tory party will stop it when they win the general election. So forget about a central national database of patient records.

The result is that if you live in Wimbledon and fall under a bus in Newcastle, you will have had it. Actually, it is worse than that. If you live in Tooting and fall under a bus in Kingston, you will have had it too, because Kingston is covered by a different hospital trust, so Kingston will have difficulty accessing your records.

If there is not going to be a national ECR database, the debate should have moved on to where patients' records be held instead. The alternatives are hospital trusts, primary care trusts, GPs or the patients themselves.

The Conservatives have suggested that the patient runs his or her own Google or Microsoft health record. It would indeed be nice, as a patient, to have total control of my record, but I would not trust other patients not to create fantasy records. And of course, the majority of really sick patients would have difficulty in creating and maintaining a coherent record.

Furthermore, data standards would have to be very tight so that the patient record can link to the GPs and hospitals. GPs and hospital doctors might have problems exporting data into the patient record. And who wants to entrust Google or Microsoft with their most personal details? Overall, not a good idea.

Some people say that the records should be held 'locally', without explaining what they mean by local. If that means hospital trusts, this is a bad idea. Hospitals are just one stage of the care pathway. You may remember, back in January, that the anaesthetist at 'Fastrack' Hospital wanted information about a heart murmur from my regular hospital before he would sanction an operation. He was not happy with the information he received, and called for an echocardiogram at a local private hospital – at immense cost to the NHS.

Last month I had an annual check-up with a cardiologist at my regular hospital. He called for another echocardiogram – at more expense to the health service – and was quite unaware of the January echocardiogram, or indeed that I was getting specialist treatment from Fastrack Hospital. Why should he be? Hospital doctors live in little boxes.

Another option is the GP. I am always very impressed by the way my GP surgery keeps my record, using Emis software. All the doctors navigate through my data at the speed of light. And once, two years ago, when one of them sent my wife off to the local hospital's A&E following an angina attack, the doctor selected and printed all the computer records about her cardio-thoracic treatments for the last 15 years in about five minutes, which we took with us to the hospital.

At the other end, the hospital doctor was amazed at the comprehensiveness of the info. She had never been presented with such a clear back-history. My mind boggled. If a consultant in a major teaching hospital found this extraordinary, I realised how deep in primeval gunge NHS records must lie.

So, GP records are better than hospital records, but the snag is that not all GP surgeries are as paperless as mine. Danny Bradbury's report on patient records in Canada shows how hard it can be to implement patient records across a community of independent GPs. The NHS's GPs are probably more disorganised and stroppy than Canadian ones. So it would be a nightmare to impose a workable, secure and standard national ECR on GPs.

An alternative 'local' solution would be to make primary care trusts the hosts of a decentralised national ECR. But I doubt whether PCTs have the right IT skills. And they would need massive funding. So, that won't work either.

So I can offer no answer. All alternatives have fatal flaws. But I am just a humble geriatric patient. Surely, there are a lot of clever fellows somewhere in the NHS who can help. I do wish they at least start a serious debate on where to hold my record. They should have started such a debate in 2002, when the NPfIT was dreamt up, rather than just sniping negatively at the Spine, which is all they have done ever since.

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Patient from Hell: Patience for patients

Wed, 23 Sep 2009 08:00:00 GMT

The Hayes review of NHS IT has its heart in the right place, but any effects will take years to make a difference, says the Patient from Hell

Last month, Dr Glyn Hayes published his Independent Review of NHS and Social Care IT, at the behest of Stephen O'Brien, a shadow minister for health. It makes a big claim, that "the patient must be at the centre of all information systems".

Great: as your resident patient, I have to applaud, but they all say that, don't they? As a frequent-flyer on the NHS, I have scoured Glyn Hayes' report, to see whether it addresses any of the patient-unfriendly things I have been going on about here in the last few months.

There is nothing about bringing the NHS into the email age, so that hospital medics do not have to talk by snail mail to other departments in their hospitals, to GPs and patients. This, I keep on saying, delays treatment to us patients and causes distress to our families. To enter the email age seems to me both a no-brainer and a low-hanging fruit.

There is nothing in the report on another of my obsessions, about cutting more paper out of secondary care, or trying to reduce the burden of transcription, which slows down the whole NHS in time and money. And patients like me suffer the consequences. GPs have been paperless for years. Why not hospitals?

There is hardly any mention of telecare, which seems to elderly patients like me a good way of avoiding MRSA and swine flu, by reducing the number of our visits to infected hospitals and GP surgeries.

But, I shouldn't be too beastly to the Hayes report. Its heart is in the right place: with the patient. Its main thrust is that the data collected should be about clinical patient outcomes, not management data, like targets and tick-lists. And, glory be, patients are to be involved with vetting the data in their records. I can only applaud.

There is to be no more 'rip and replace', and the National Programme for IT's local service providers are to be consigned to outer darkness, as is the Spine. Good news, but kind of negative.

The report calls for two immediate actions: implement PACS throughout the NHS and extend electronic prescribing to secondary care, which should enhance patient safety. Useful stuff, but hardly earth-shattering.

There is also a list of proposed culture shifts, which should help patient care in the long term. The royal colleges should promote information standards as they currently promote ethical and safety standards. Trust boards should be taught how to implement IT systems. There is the usual call for more professionalism in IT departments. And the relationship between health and social care right should be fixed at the top level.

All of this is worthy, but does not affect me, the patient, here and now. It may do in five years time. I confess to some disappointment. The distinguished writers of the report seem to be giving vent to their frustrations with the current NPfIT, but don't do much to find out what the patient really wants today. They are all clinicians or academics, so no surprise there.

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Patient from Hell: Administration & Emergency

Wed, 09 Sep 2009 08:00:00 GMT

When appointments can be booked online, why does a London hospital force terminally ill patients to walk between departments to book tests, asks the Patient from Hell

Further to the slow diagnosis and bad communication that my friend Charles* had to endure in his last weeks with terminal cancer – see previous column – two more aspects of his treatment enraged his family.

One was that after a hospital consultation about six weeks before his death, he was sent off to trail along endless corridors to book a CT scan. Then he had to find his way to another department to book another test. And I can tell you, even for somebody relatively fit, the distances in his hospital are immense. I sometimes wonder why they didn't install travelators, as at Heathrow or Gatwick.

Why couldn't these bookings be done from the consultant's surgery? If Choose and Book is supposed to get hospital referrals done remotely from the GP's desktop, why can't an internal hospital system cope with centralised booking of tests? To make terminally ill patients do the booking physically themselves seems a bit 19th century to me.

But what would I know: I am not a hospital administrator or chief information officer. I am just a patient who thanks his lucky stars that he is being treated at a specialist hospital that is small enough not inflict these cruel and unnatural punishments on its inmates.

When the hospital at last realised the seriousness of Charles' condition, the consultant called him in as an emergency admission early one morning. Rather to Charles' surprise, he was asked to present himself not directly to the consultant's ward but to A&E. He arrived there at 10am, passed through endless bureaucratic hoops and finally got a bed in the appropriate ward at tea-time – seven long hours later.

Why couldn't he go straight to the ward? After all, some lord high panjandrum of a consultant had deemed him worthy of an emergency admission. So why did he not receive emergency treatment?

I can hear hospital administrators reading this article, shrugging their shoulders and saying "what a plonker, not to realise that to have two admission streams, A&E and emergencies of existing patients, would cause chaos". Sorry; I insist. Clearly it is administratively easier to have just one admission stream, through A&E. But, is it in the interests of patients like Charles to go through the A&E bureaucracy – for no purpose, and with great distress?

It seems to me that, in the NHS, administrative convenience is still more important than patient care, whatever the rhetoric claims.

Ah, I hear you say, beds are scarce, and Charles should have been content to wait his turn. This is an argument I might accept, except that a week or two later, Charles was left blocking a bed for five days waiting for the cardio-thoracic wing to find a theatre slot to clear fluid from his lungs. In his hospital, the left hand did not appear to know what the right hand was doing. And beds were being blocked for no purpose.

Again, Charles's experience is so different from mine at 'Fastrack Hospital'. At an outpatients' clinic, a few months ago, the doctor reckoned that the wound of my operation had become infected. Within two hours, I was in a hospital bed being pumped full of antibiotic, and stayed there for the following four days until the infection cleared.

What is the difference between Charles' hospital and Fastrack? Size is one thing. Fastrack is small. Charles' is monstrous. Fastrack specialises in one family of diseases, and was only created about 50 years ago. Charles' is general – and has a long history of being one of the premier teaching hospitals in London. Maybe this is a lesson for the NHS as a whole.

* Not his real name

Patient from Hell: A matter of life and death

Wed, 26 Aug 2009 08:00:00 GMT

NHS informatics could have done more to help two of my contemporaries, argues the Patient from Hell

A few months back, I chronicled in these columns the problems of two aged contemporaries, Tom and Charles,* at the hands of defective administrative systems and clinical lack of interest. One of them lived in the Home Counties, the other was a patient of a mega-hospital in central London.

Last week, they both died. Since then, I have been wondering whether better computer and administrative systems could have reduced their suffering and the distress of their families, and prolonged their lives.

I quoted their cases originally as a contrast to the superb treatment I have been receiving at the specialist 'Fastrack Hospital', with its quite good computer systems. My aim was to contrast what is the best in the NHS with the run-of-the-mill, which is inadequate and distressing for the patient.

The following will of course be dismissed as 'anecdotal' by the medical establishment, because I use a sample of just two cases, but my sample is 100% of the current cases of which I have been following, and the two cases show similar failings. Maybe that gives them statistical significance!

Better technology might have allowed Charles to live for a few more months. He started suffering from a stomach upset last October, and went through the standard NHS 'serial' mode of testing. This goes like this: GP refers patient to hospital; one month passes. Consultant sees patient and orders a test or tests; two weeks pass. Test inconclusive; three more weeks pass while consultant writes report, the report is 'transcribed', referring patient to another consultant. More weeks pass before new consultant sees patient. He orders a new test; another two or three weeks pass, and so it goes on. The GP, and sometimes the patient, is informed of this process from time to time, usually by snail mail.

Cath Everett's article earlier this month about speech recognition quotes one-day turn-round times as opposed to one to two weeks on older transcription systems. I ask myself how dramatically this long, drawn out series of tests could have been concertina-d if speech recognition were used at all stages of the serial testing process, and whether its use would have given Charles a better chance of survival.

After many long months, the doctors finally diagnosed cancer, when it had become untreatable. 10 days elapsed before Charles was told of the biopsy result, and that was only because Charles's wife rang the Patient Advice and Liaison Service, the second time she had resorted reluctantly to this rather extreme course of action. None of this is directly related to computer systems, but it does relate to bad and slow communications.

At one quite early stage in the testing process, Charles's son, who is a consultant associated with another London hospital, got so angry that he tried to get his father transferred to his hospital. However, when the GP tried to arrange a transfer, Choose and Book revealed that this other hospital – no prizes for guessing its name – was not accepting any referrals, because its brand new computer system had gone haywire! So much for the effectiveness of IT in the NHS.

My other mate, Tom, also had difficulty getting the attention of doctors. By the time I heard of his prostate cancer, his PSA count was through the roof, but his problem was that he was in extraordinary discomfort and getting no palliative care. There seems to be a disconnect between the hospital trust and the PCT who would provide the palliative care. (Charles had the same problem, until his consultant son came in like an avenging angel, and sorted it out.)

Desperate to focus attention on his plight, Tom sent an excoriating email to his GP listing his more distressing symptoms. The GP emailed it straight to the hospital consultant, who gave him a consultation just five days later, and the palliative care started flowing. I am pleased to record that Tom felt emboldened to write his email having read the Patient from Hell.

The moral is, that if you are in extremis, patient administration and clinical systems are not going to help you much. Instead, you have to bang a very loud drum. If someone were to write some clinical software which makes doctors, nurses and administrators jump to attention when the patient calls, then computers will have made a real impact on patient care.

PS. If anybody from the American Republican Party reads this, I would like to point out that not all of the NHS is like this. On one of my stays in Fastrack hospital, I happened to be put in a palliative care ward. Here, hospital treatment and outreach palliative care were integrated, as patients were prepared for their – possibly last – return home. This is how it should be. I was moved. It is a pity that good practice does not extend further.

* Not their real names.

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