The Curse of the Dropped Kerb

I have a thing about dropped kerbs. Introduced to allow the easy passage of wheelchairs from pavement to road (and also allowing the partially sighted to identify crossing points thanks to the bubbled surface of the approach) I hate them.

While improving the safety of disabled people they impair that of the normally ambulant, particularly if they (we) are walking along the length of the footpath.  If you don’t look where you are going you suddenly find an irregular dip which throws you off balance and twists your ankle. I have lost count of the number of times this has happened to me, and on one occasion I even fell into the road.

So, health and safety experts – which matters more? Safe access for a small number of wheelchair users or safe passage for 97% of the population?  Are not these things a safety oxymoron?

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HOLIDAY OR NOT?

 

It has become a fact of medical life that leave can no longer be taken when you want it, but must fit into the rigid rota systems now commonplace. There is no longer the flexibility in staffing numbers to accommodate more than a couple of people in a team being away at once, partly because the European Working Time Directive means that working longer hours is now considered a sin.  What it does in terms of patient care continuity and safety is something for another day…

I recently learned a new management trick played on unsuspecting trainees.  Their posts rotate, and are of short duration at the start of their training. To fit all the holidays in it’s necessary for some of them to be allocated slots right at the start of a new rotation.  However – it is also necessary for them to undergo hospital induction (to learn about form-filling, health and safety and the vagaries of senior colleagues to name but three).

 So – you have a compulsory three day induction, but discover that your compulsory leave slot is in the first week of the job. It appears that induction is more compulsory than leave.  If that’s not an oxymoron then I don’t know what is.

Don’t let wool be pulled over your eyes

…or maybe not.

Our Trust decided it was going to have another round of back-office cuts to try and meet its deficit, so it set off by telling all the over-65 staff that they were to have their contracts terminated (there was a bit of a rush with this, as the law was to be changed to forbid this, to be enacted some 6 months later). We lost a senior orthopaedic surgeon, some of whose patients were so angry they followed him into the private sector, but we also lost two of our valued and hard-working clinic receptionists, who had spent the last 15 years or so manning the desk for the rheumatology and orthopaedic clinics.

I was sad at the manner of their exit, but returned the following week to discover that the reception desk was empty, and that my patients (many quite disabled) had to walk 60 yards round to main outpatients, queue for ages and then return to the rheumatology waiting area. It transpired that the reception staff had been cut by four. Two desks had been abandoned, and the remaining staff were tearing their hair out trying to cope with the large numbers of patients, who at peak times would be queueing almost 50 yards down the main hospital corridor.

I complained to our Medical Director who, Pilate-like, washed his hands of the matter. Well – I suppose the hand-washing set a good example on the C.Diff. front. After several other complaints directed at those to whom he had directed me I finally got an answer – which was that the restructuring had only lost one full-time equivalent post, and implying that the reception manager was falling down on the job. Having seen her, in tears, trying to cope a week before, I was not impressed so summoned her to ask if the figures were true.

She told me they were. However, they included two receptionists based at the cottage hospital, and one member of the pre-admission team, who could hardly be classed as main hospital receptionists either because they worked somewhere else or because they did another job entirely. None of them had previously been in the reception staff budget.

It got worse. My secretary was suddenly phoned by an anxious senior manager, telling her that she now had to collect a huge pile of outpatient outcome forms (the ones in colour), book the follow-up appointments and code the details. Otherwise, she was told, the hospital would lose oodles of money because it couldn’t claim for the work done. Guess who normally did this work. The receptionists they had just disposed of.

It is very sad when managers not only try to delude others, but appear to delude themselves. If you are faced with an improbable scenario, or offered some rumour, check it out and get the facts. Preferably in print. Then you can screw the bastards back.

Look after the pennies…

In our hospital it became apparent that we were missing out on income because we were not coding properly. I have no objection to chasing money if it is a consequence of better (or more ordered) practice. But things can get out of control.

In 2009 it was finally agreed that procedures done in NHS outpatients could be charged for. It was also decided that it was necessary to devise a new outcome form to take account of the 18 week target for completion of treatment. So a new form was devised on which all the new relevant information could be entered.

Now with targets there are certain subgroups of outcomes. A repeat follow-up patient need not be counted, so they require a box. There are several outcomes that “stopped the clock” – for example direct admission, first appointment default, discharge – and there are others that left the clock running or start a new one.

The new form appeared.

It was printed in colour.

Each of the clock groups was in a different colour which bore no relation to the goodness of the outcome – thus a stopped clock (which we didn’t have to worry about) was in red. The colour was in large blocks.

Now I know a bit about colour printing as I do some at home. It is quite expensive. So I thought “Why the hell are we printing these forms in colour? The colours mean nothing. They are expensive. The outcome sheets are discarded once the information has gone onto the computer, so if we are seeing 200,000 outpatients a year we are throwing away an awful lot of money.”

I have no idea how many outpatients were seen across our three hospitals, because  no statistics were provided, but if every one of my colleagues sees what I see then my figure is probably an underestimate.

So I wrote to a manager asking why the forms had been printed in colour. I was not given a direct answer, only told that it wasn’t that expensive (4p per sheer) and would easily be covered by the extra income that the forms would facilitate.

The cost of a black and white sheet might be at most 0.3p. So we were wasting over £5600 in unnecessary costs, but it doesn’t matter as we would get it back…

Actually, to be fair, someone did see sense, and the forms were changed to black and white – a good two years after I made a fuss.

Medical records and the Cloud

Computer illiterates will not know that the Cloud is the place where you can store your data without requiring it to be on some unreliable hard disk in a desktop computer. Basically it is a global collection of servers; your stuff could, in truth, be anywhere, and that is what has, perhaps, underpinned opposition to the development of an electronic patient record (EPR) system for the NHS (along with the fear that someone inappropriate will nick the data and find out you have AIDS, thereby changing your chances of getting life insurance).

I don’t personally have much of a problem with this (and no, I don’t have AIDS, although I did once perform a procedure on a colleague who had failed to reveal he was HIV-positive). In fact I use a secure service to keep my correspondence there, so I can access it at will from one of the sites I work at. After all, vast amounts of data on you are already held by your bank or banks, mortgage lender, financial adviser, Ebay, Amazon and any other retailer from whom you have bought online. It’s spooky, even knowing that, when you get emails suggesting things you should buy which are based on past purchases. It’s even more spooky when you discover that your car insurance renewal date appears to be common knowledge among all car insurers, and a dozen or so letters turn up suggesting you might like to consider switching. (I did actually pursue one such quote, which turned out to be uncompetitive, and then gave reams of personal information so they could quote for my house insurance also, only to find that the level of contents cover I had was several times their maximum.)

Medical data is fragmented. Your GP has some, maybe almost all. The various hospitals you have attended will have more. You may yourself have copies of letters about you, and a repeat prescription list. But it is very irritating for physicians to meet a patient for the first time and find that a vast swathe of necessary information is unavailable to them.

When my hospital merged with two others there was the devil’s own job trying to marry up the different IT systems and databases. It was 18 months before I could view X-rays and scans done on the other sites, so the best way to provide a one-stop service was to repeat the investigation. Not cheap[1], and not terribly good for the patient.

Perhaps the answer lies in the data stick. Everyone who has a computer, near enough, will have one (or more – I have about 12 – they appear as conference freebies) or seen one. They can be encrypted. So let’s give every patient a personal stick on which can go all their medical history, drug list, allergies, correspondence, investigation results etc. USB sticks are big enough nowadays. The patient can present it at their next consultation, the health professional can plug it in, enter a password and get access (perhaps even at different levels). Simples!

Of course, there will be much blathering about what happens if you lose your stick, it gets flushed down the loo, eaten by the dog (don’t laugh – when I was in the mobile phone shop a lady came in with a terminally chewed BlackBerry and mournfully reported that this was the fourth the dog had ruined) or run over by a lorry. Listening to the hysteria there has been over the EPR you would believe the world would come to an end. So why don’t people have the same approach to credit cards? Everyone has lost one or had one stolen, or knows someone who has. You might even have your bank account emptied. But the general reaction is to shrug shoulders and say “It happens”. What’s so special about a medical data stick? The plus side is you will never again encounter a doctor rolling the eyes heavenwards and bewailing his lack of information – or the missing notes.

Electronic communication is now the norm. We have emails, text messages, Twitter, Facebook and others. So why does communication between GP and hospital consultant interpose a raft of paper?

My secretary types a letter from a tape I have dictated and stores it on her computer. She then prints a copy, stuffs it in an envelope and sends it to the GP. The GP staff open it, scan it into their computer and shred the hard copy.

Let’s cut out the middle man, and email the letter. No paper, no post, no delay (indeed it would be even better with voice recognition software, so we could do away with the tapes, which always get scrunched up or separated from the pile of notes they refer to – but the last time I tried this the program wouldn’t recognise methotrexate and kept printing “me though treks eight” however hard I tried to train the bloody thing).

Oh no. Blather, blather, the internet isn’t secure, confidential things could go to the wrong people etc. As if the postman delivers everything to the right address, assuming they deliver it at all…

 

[1] The cost of integrating all systems in S London Healthcare Trust was put at £12m – which, as it had a deficit at the time of around £40m, was not exactly affordable.

The only way to beat a target is to cheat

If we rheumatologists want to increase our new:follow-up ratio we can

  • Count DEXA scans for osteoporosis as new referrals and not as tests
  • Pull all the simple stuff under the rheumatology label (eg all the back pain patients who go straight to our physio service – after all, we supervise it)
  • Book requests for earlier appointments as new patients (after all, it’s a new letter!)
  • Abandon the “SOS” (“give us a ring in 6 weeks if it’s not better and we’ll see you again”) system which patients love and is highly effective – and get the GP to re-refer
  • Discharge everyone and ask the GPs to refer them back – which they will have to do

If we want to meet 18-week targets we can

  •  List patients awaiting tests as “watchful waiting” (which stops the 18 week clock) rather than “awaiting tests” (which doesn’t)

I am aware of many who play such games. It’s sad that we waste our time inventing ingenious ways of beating the system instead of relaxing at home, doing research or writing letters to “The Times”.

Drugs, and why (not) to prescribe them

I don’t intend to embark on a discussion of overprescription and the use of dangerous drugs in an inappropriate way (although I did read a piece that incensed me, about why patients with RA should not receive methotrexate because we rheumatologists dish it out with gay abandon). Rather I want to discuss why some drugs are denied to patients by non-clinicians (or non-specialists) because of financial considerations alone.

In my long experience of dealing with applications to use drugs – and these are always for highly specialist things that almost always cost lots of money – I have encountered managers and clinicians who fall into two groups. There are those who take a pragmatic, and to my mind sensible approach, which is that if a clinician submits a detailed application there must be a good reason, and thus errs on the side of agreeing. There are also those who are jobsworths, and shelter behind detailed guidelines to find any excuse to avoid allowing use of something expensive while not always having any reasonable clinical argument to back up their decision.

Certolizumab is a case in point. It is a biologic therapy – a tumour necrosis factor antibody used in the management of severe rheumatoid arthritis. Because it is one of a family of TNF antagonists it has been treated as identical to the others available (infliximab, adalimumab and etanercept). A deal done by the manufacturers offered a free 3 month trial of certolizumab; as a result, some GP managers and therapeutics committee members decided that it should be the first choice TNF antagonist because of the cost saving (also it was presumed that TNF failure at 3 months was the end of the line for that particular treatment).

However this decision failed to account for several factors.

  1. The mechanism of action of the TNF antagonists is not physiologically identical, and there is therefore no reason to believe they should produce identical clinical effects. Antagonists ending in “ab” are antibodies against TNF but the human immune system can and does produce antibodies against them. Those ending in “cept” are fake TNF which blocks the receptor sites on cells.
  2. There are differences in side-effects (not fully detailed, but it appears that the “ab’s” have more serious respiratory side-effects than the “cepts”)
  3. It is never clear whether new “me-too” drugs will have exactly the same profile as the old ones, either in efficacy or side-effects
  4. It’s all very well comparing two drugs each against placebo and inferring they have similar efficacy, but without a head-to-head trial the verdict remains not proven, as the Scottish courts would have

So one must conclude that the evidence on which a decision to use certolizumab first, even though there is much less clinical experience of it, was not clinical evidence. Cost is the prime mover.

Another example is the use of Infliximab in Behçets disease – an uncommon but disabling condition characterised by nasty skin lesions (including involvement of the mucous membranes of the mouth and genital area) and an arthritis. I had one such patient whose disease responded dramatically to Methotrexate, but she developed serious side-effects. So we had to terminate the treatment and she had a major relapse.

She had already received all the standard starting therapy, so we were at a dead end. I was not going to use thalidomide, for which there was trial evidence of benefit, because of her age and the possibility of her becoming pregnant. There were two case reports of dramatic benefit from Infliximab given as a short course.

I applied through the local vetting committee for permission to proceed. It refused on the grounds that there were no clinical trials and that anecdotal evidence was not good enough. I could however use thalidomide…

So I was faced with a patient in serious trouble, but forbidden to use a safe drug and offered the ridiculous option of a seriously dangerous one that was, it seemed to me, mad to consider in a young lady. I fear I lost my temper as well as the battle. The patient moved away, having lost her job because of her disease, so I don’t know what happened to her. However in the intervening three years – guess what? Following up on the anecdotes a trial was done. It confirmed benefit. For the want of a nail…

At the end of 2012, some four years after this shameful episode, I learned at a rheumatology meeting some of the details of a new scheme to develop specialist centres for Behçet’s patients. All you now have to do to get authorisation for infliximab (which unsurprisingly has now been shown all over the place to work like magic) is discuss the case with one of the centre specialists and they will rubber-stamp it. There’s nothing worse than being ahead of one’s time.

And there was a third shameful jobsworth episode. A patient of mine with ankylosing spondylitis had, off her own bat, got herself funding for residential rehabilitation at the Royal National Hospital for Rheumatic Diseases in Bath. While there she had been entered into a trial of TNF blockade, and had been on treatment for three years. At this time the biologic drugs had not been approved by NICE for use in AS, so when the trial came to an end I applied for individual funding from her Primary Care Trust. This was refused. She was devastated as she saw that her condition would slide inexorably backwards. The refusal seemed to me to be both uncharitable and stupid. I knew that NICE had already issued draft approval and it was only a matter of time before full approval was confirmed. After that the PCT was legally obliged to cough up. But it stuck to its jobsworth principles, claiming that draft approval wasn’t good enough. Having had considerable experience of NICE decisions I knew that the only ones that got disputed were those that NICE had turned down. For the sake of a few weeks, maybe months, the PCT was prepared to make my patient suffer.

However she did not take this lying down. Instead she went to the regional television news, made her case, got the media firmly on her side (I added a bit of gravitas), caused a major public fuss and got her treatment. I still find it hard to understand the inflexibility of the PCT in the circumstances, but it all caused her, and me, considerable annoyance and inconvenience.