10 Minutes for the Patient

Mr Jones comes to see me. He is only 62, but has high blood pressure, had a stroke two years ago and still has a noticeable limp as he walks down the corridor to my room. Like most patients, Mr Jones knows that he has 10 minutes for the appointment and has spent the time in the waiting room wondering how best to use it. His knee has been bothering him for a while and he has decided it is time to bring this to my attention, but he also knows that his review is due and he won’t be able to leave my room without having had his blood pressure taken.

What Mr Jones really wants to talk to me about, though, is that he’s been having trouble maintaining an erection. He’s not quite sure how to broach that subject, so he plays safe, taps his knee as he sits down and opens with ‘It’s this, doctor. Giving me some trouble, that’s the main thing.’

Like any good GP I clock that if the knee is the main thing then there must be something else as well, and make a mental note to come back to that later – but his blood pressure check is flashing on my computer screen, vying for my attention.

We talk about the knee for the first minute of the appointment, and then I reach for the blood pressure cuff. There is a good reason to tackle this first, since getting him up onto the couch to examine his knee might adversely affect the reading. The numbers are the same as last time – 145/85 – which is a bit awkward, as six months ago this was ok, but in the meantime the Government has changed the goal posts. Now the target is to get blood pressure below 140.

2 minutes

We spend a couple of minutes talking about this, discussing his medication and why we might need to increase his treatment. Since he’s not keen on extra medications – and I’m not convinced about the new target – we decide that he will borrow one of the practice machines and check his blood pressure at home. I wonder if I have just put the problem off for another day.

4 minutes

The amended blood pressure target is not the only new directive to be imposed by the Department of Health this April, so there are more boxes to tick before we can get back to the knee. There’s the new activity questionnaire for starters. Making some assessment of exercise has its place, but I am now required to ask the same questions of all patients with hypertension, however appropriate – or not – it might be. It seems wrong when I ask Mr Jones how much vigorous exercise he undertakes, and he becomes defensive when I enquire how many hours per week he spends doing housework, but we battle through. The advice we receive on the administration of the test states that it takes 1-2 minutes to complete; by the time I have added advice to do more exercise, and received the inevitable reply that this is not easy with only one good leg, that’s a fifth of his appointment.

6 minutes

We return to more familiar territory – I need to ask about smoking – we both know we’ve been here before when I ask if he’s still smoking. He shakes his head and replies: ‘Not the right time, doc.’ The expression on his face asks why I keep going on about it, when he’s made it quite clear he has no intention of giving up.

‘Have you any concerns about your memory?’ Mr Jones is a little taken aback, as he’s not heard this one before, but he is in an at risk group for dementia and so this is the question I am required to ask. It could have only taken a moment – a simple ‘no’ and we move on – but who doesn’t sometimes forget things? Mr Jones occasionally goes into a room and forgets what he’s gone there for – is that what I mean? It takes a little while to explore this further before we both decide that he is not showing early signs of dementia. He taps his knee.

8 minutes

There’s a blood test to sort out. He’s on a statin for his cholesterol, and although the guidelines I read tell me not to perform regular cholesterol checks once treatment is stabilised, the GP contract insists that I check it annually. Still, I like to keep an eye on his kidney function so it’s not entirely wasted. The forms take a while to print out.

‘Do I have to fast?’

‘No, that’s ok’

9 minutes

There’s not enough time to get him up on the couch to examine his knee properly, but I know he’ll need an x-ray to look for arthritis so I do a quick examination in the chair and print another form for him.

10 minutes

I have forgotten that the knee was only the main thing and make it clear that the consultation has ended. Mr Jones leaves with the forms. He’s happy with the x-ray, but he’ll have some explaining to do for Mrs Jones when he gets home. He’ll say the doctor was very busy and promise to ask next time.

The 10 minutes belong to the patient.

We need to give them back.

Mr Jones is not a real patient, but I know of many who share some of his frustrations.

The Real Cost of the Epanutin Scandal

Last year I published two posts on the scandalous price rise in the cost of Epanutin (phenytoin), an important treatment for epilepsy. You can read the posts here and here, but in short, here is the gist of what happened: Pfizer, the manufacturers of Epanutin, struck a deal with Flynn Pharma, a far smaller pharmaceutical company. Pfizer would continue to make the drug in the same way as before, but Flynn would now re-brand it, and in the process they would increase the price over 23-fold. The NHS would be held to ransom on the matter because the danger of switching a patient with epilepsy to a competitor brand was far too dangerous for the patient – and anyway there are no competitor brands.

At the time I was incensed by the huge unnecessary extra cost to the NHS of £44m per annum – and I still am – but over the last 6 months I have been deeply humbled by comment after comment posted on the blog by those who are bearing the real cost of this outrage – patients. 

I felt that these patient stories deserved a post of their own. We need to listen to them. Pharmaceutical companies need to hear these voices when they make business decisions in boardrooms, far away from the lives of the patients they tell us they care about. Politicians need to hear these voices when they consider the rights of big business against the care of the patient. The media need to listen too – perhaps pausing in their current obsession for exposing every possible fault in the NHS, and considering how patient care can be affected just as much by private companies and political policy as by frontline workers struggling to cope. Here are some of these voices:

Jeremy Whitehead had a fit when his brand was changed (this may not have been the Flynn Pharma change, but shows the danger of changing brands), and has decided to give up driving as a result:

I have had very little trouble until recently when the 100mg capsules of which I took 3 were presented in a different packaging labelled Epanutin but with a Malta licence. I started taking these and had a very bad fit shortly afterwards. Thank God I was at home and not driving my car.

I am within a couple of months of my 70th birthday and can’t put up with much of that sort of thing any more. I assume that it was the variation in brand which triggered my attack, but my main concern is that there will be other people in my situation who might not be so lucky, they could be driving around and have a horrible accident. I have returned my licence to the DVLA.

Tom McLaughlan expressed the anxiety that many patients on this drug are feeling:

What if the outcry against their pricing strategy were to result in Flynn pulling the drug?

I’ve been taking it for 31 years. Fifteen or so years ago my GP tried to take me off it but within hours of the transfer process being completed and me being on the new drug alone I had two seizures. So I went straight back on to the Epanutin and have stayed with it ever since. I do not want to face the likelihood of seizures again…

It is hard to underestimate the consequences of having a seizure in epilepsy that has otherwise been well controlled, and therefore the anxiety that can be created even by the possibility of this happening – Ian Bates knows this all too well:

There has been two times that my Neurologist has tried to remove/change this medication but each time it has led to me being hospitalised and nearly causing my death. Therefore I understand the consequences of removing or even altering the drug slightly.

Dawn Stocks describes the effect of a lack of communication about the change (as a GP I am especially humbled here as I am sure we could have done this better with our own patients):

I have stuck to Pfizer epanutin from the early 1980s up until last week when I received my prescription and noticed the Flynn Pharma label. I have had no warning from the pharmacy or my GP about the change and, like most epileptics, have severe consequences of not receiving the same brand medication. Panic set in which makes seizures worse .

Richard had a similar experience and laments the lack of communication from the company to the patient:

There should be a duty of care on the supplier to explain all of this via the GP and pharmacist. I have received absolutely no communication over this matter from my GP. The pharmacist (Boots) had a copy of a letter from the manufacturer which I requested a copy of, but was informed that I could not have a copy as this was the pharmacist’s only copy.

There have been supply problems, and it is hard to see that this is unrelated to the change since this has never been a problem before with Epanutin. Sean Loftus explains:

Went to a large high street chemist earlier this month & they were unable to supply the full prescription…I’m now low on epanutin, less than a weeks supply.

He is not alone – here’s a comment from Ginger:

I am quite happy to accept either Epanutin or Phenytoin Sodium Flynn Pharma, but a bigger problem has arisen – both are in short supply!

Just before Christmas I could not get my prescription made up by my usual pharmacy, and had to phone around until I found one with half the amount I needed. This was the 2nd time in 18 months.

Rosie has had similar problems, with real reasons to doubt the reliability of her medication:

I have taken these since 1974 and my GP is not happy about prescribing them because of the cost.I found my local branch of Boots would not supply the Flynn brand against the prescription that my GP gave me with Pfizer on. I have had a permanent struggle with the change of name. Now that the prescription has been updated on the computer to Flynn I am getting left overs of Epanutin from various chemists still made by Goedecke, Germany supplied by Parke Davis with a Pfizer label over that. They must be old as the use by date is January 2014.

When we listen to these stories we must remind ourselves that we are not talking about uncertainties over a drug that you could take or leave – this is epilepsy – serious medicine. I want to thank all those who have taken the time to comment, and to readers for listening.

Screening for Dementia – Beware the Zeal of an Evangelist

There’s an old joke about a Pastor and an Evangelist going on a bear hunt. Once they have arrived at their log cabin hunting lodge the Pastor starts to unpack their supplies for the week, but the Evangelist announces that he’s going out to explore the surrounding area. Barely twenty minutes have passed before the Pastor is somewhat alarmed to see the Evangelist racing down the path back towards the cabin at breakneck speed. His alarm turns to terror when he catches sight of a large Grizzly Bear in hot pursuit.

The Pastor backs defensively into the cabin, leaving the door wide open for the Evangelist to reach safety. With relief he sees that the Evangelist is going to get there just in time, but at the last moment his friend steps deftly to one side. The Bear charges headlong into the cabin, at which point the Evangelist slams the door shut and shouts to his friend: “You deal with that one, I’ll go and get another!”

Jeremy Hunt is on a crusade to increase the rate of diagnosis of dementia, and has approached the task with all the enthusiasm, energy – and lack of forward planning – of the Evangelist. The hapless Pastor will be our dangerously over-stretched dementia services, which are already at breaking point and unable to offer the sort of service that dementia sufferers require; and the Bear will be all those people newly diagnosed through the Health Secretary’s proposals, trapped within a diagnostic label, but not able to receive the care, support and advice they need because the system will be unable to cope.

I have written an earlier post questioning who the real beneficiaries will be with the drive for early diagnosis in dementia, arguing that what we need is prompt diagnosis for those who need it, rather than an increasing search for ever milder cases. The Government, however, has announced its proposals for what they call ‘Dementia Case Finding’, which amounts to widespread screening for dementia in older people.

The proposal is that GPs should ask all at risk people – deemed to be those over 60 with certain conditions such as stroke or diabetes, and all those aged over 74 – about their memory, and offer them a screening test. This is to happen during routine visits to the doctor – which means that any older person who chooses to see their doctor about, say their arthritis or a skin rash or a blood pressure check, will be asked about their memory. There will be no advanced warning that this is going to happen, no chance to consider the potential benefits and harms of dementia screening, no leaflet in the post explaining the programme, just screening questions, and a referral to the memory clinic if you fail the test.

We need to think long and hard about the implications of this. I have three major worries.

It is a wasteful distraction from the real need in dementia care. While I have such grave concerns about the Government’s proposals, their overall focus on improving dementia care is something to be celebrated. It is long overdue, and is giving this much neglected area within medicine the drive and energy to shape change and attract investment. However, the over-riding need within dementia care is hands-on support for those who are already diagnosed and their families or carers. Currently our system can barely cope with making a diagnosis, starting people on medication and reviewing them about once a year. This is woefully inadequate. People need help understanding their diagnosis and carers need to learn a whole new way of interacting with their loved one who is now behaving in such a different way (see this post for more on that need). Issues such as Advanced Care Planning and Power of Attourney are vital, and yet people are often left to find their own way when they need someone to walk them through these emotive and complex issue. And as for non-drug therapies – such as reminiscence therapy – there is so much that could be done if only we invested in it.

There is a very real danger that older people will be put off seeing their doctor. However much we try to reduce the stigma of dementia (and try we most certainly should), it will always remain a life-changing and very frightening diagnosis. Many older people are quite threatened when I ask them about their memory – how will they feel if they hear that I will be required to do it when they come to see me? Going to the doctor can be a stressful enough experience as it is – I’m already likely to want to check their blood pressure/monitor blood tests/talk about their weight/nag them about smoking etc etc. A serious unintended consequence of this policy could well be that people will avoid seeing their doctor about other serious health issues for fear of being subjected to a memory test.

All the evidence and advice about dementia screening is clear – don’t do it. Screening for any disease is always a balance of benefits and harms, and so all NHS screening programmes are considered and evaluated by the UK National Screening Committee (UKNSC). This committee looked at dementia screening in 2010 and gave a very clear ‘No’ to the idea. The benefits of picking up the very early stages of dementia just do not outweigh the potential harms of over-diagnosis and over-treatment. The Government has neatly sidestepped the UKNSC by calling their proposal ‘Dementia Care Finding’ rather than screening, but you can call a spade a ‘garden digging implement’ if you like – it’s still a spade.

Many other doctors, and dementia campaigners share my concerns, and together some of us have written an open letter to the Prime Minister and the Chief Medical Officer, which has been published in The British Medical Journal. We have also raised an e petition asking the Government to reconsider these proposals. If you share my concerns then please consider signing the petition, and sharing it as widely as possible with others.

Thank you.

Dementia – Do Children Need a Parenting Course?

‘He just won’t listen!’

‘I’ve told her that until I’m blue in the face!’

‘He’s asked me that five times already today.’

‘You don’t remember much these days, do you Mum?’

Seeing your ageing parent slip gradually into the confusing and bewildering world of dementia can be a deeply upsetting, worrying and – often most of all – frustrating experience.  It’s as though someone has changed the rules and forgotten to tell you. Patterns of shared behaviour that have been in place for decades no longer seem to work. The parent-child dependence that you have relied on long into your adult life is gradually being reversed, and just as you adapt and make changes in how you support your Mum or Dad, so their needs change, their health takes a turn for the worse and you have to think again.

Increasingly I can see parallels with what it is like when you first become a parent. I well remember the journey home from hospital with our 2-day old daughter, thinking how surreal it was that we were to be trusted with this utterly vulnerable baby when we knew so little about what we were doing. I half expected the parenting police to turn up at any moment to check us out and demand to see our parenting qualifications before we went any further. And whenever you felt like you were getting somewhere, like you knew how to do this child-rearing thing, your child would have moved on – thoughtlessly developing before you were ready, always one step ahead of you as you ran to keep up.

To be a ‘Good-Enough’ parent (and we should never be so foolish as to think that we can be more than that) you have to learn on the job, but you do well to take as much advice, help and support as you can along the way. Learning from other parent role models, reading what you can about parenting (but not so much as to lose the joy of it!) and parenting classes are all invaluable as you experiment with what works, and what does not work, with your own child.

Adult children, and spouses, of people with dementia often feel just as de-skilled and ill-equipped to deal with the challenges it raises as any new parent – and have to face these challenges without any congratulations, bottles of champagne, cards, flowers or baby showers. Who ever heard of a ‘dementia shower’? And yet it might be both more useful and more necessary.

Do we need a ‘Parenting’ class for the children of adults with dementia? A forum where people can get support and learn to cope with how to adapt to the rule changes? They may already exist, and there are so many people out there doing good things that I suspect they do, but I am not aware of any. I am no expert on how best to look after someone with dementia – I have had no personal experience so far of having to care for someone in my own family and I am a GP, not an expert in the psychology of older people. I am aware of some things that don’t work, however, as I see them all the time.

I see family members getting frustrated that their loved one doesn’t follow a logical argument anymore. They go round in circular arguments, trying to explain why someone should take their tablets/accept care/wear different clothes, or all manner of other important, reasonable things that their Dad stubbornly refuses to listen to. Sometimes they succeed, and reach agreement, only for the decision to be completely forgotten 5 minutes later and the argument starts again, with added frustration. Sometimes people bring their relative to me, as if the authority of the doctor can persuade them – and sometimes I do, but my words prove to be no more memorable and the end result is the same.

Other times I see great sorrow in the eyes of a patient who is constantly being reminded that they forget things. They feel they are letting everyone down, and just being a nuisance, crushed as they are by the prevailing world view that the here and now is all that matters, and remembering what you had for lunch is of greater value than years of memories of a life well lived.

On rare occasions the frustration on both sides can lead to anger, and anger to aggression. Usually this is mostly verbal, but it can become physical, demonstrating how high the stakes can become in this very great challenge to our society.

I am convinced that when your relative develops dementia you need to learn how to think differently, and need as much support and advice as possible in meeting this very difficult challenge. I have some idea of what can work – things like using distraction as a way out of circular arguments; the importance of familiarity; the value of learning to think like your Mum or Dad would think, and putting into place what they would want rather than what you would want if you were them; and the positive impact of celebrating and enjoying those memories an older person still has, rather than focusing on the memories that can no longer be laid down.

I would be interested to hear of anything like a ‘Dementia Parenting Class’, but in the meantime I would like to highly recommend an inspiring, compassionate and thoughtful blog on dementia called D4Dementia, by Beth Britton. Beth has learnt her dementia lessons the hard way by caring for her father who suffered with the condition for 19 years before he died. There are good leaflets on how to care for someone with dementia (for instance on the Alzheimer’s Society website), but there is nothing quite like hearing someone’s personal story and learning from their unique successes and failures. There are inspiring posts like ‘Little Touches That Make a BIG Difference‘ that can help remind us that every patient with dementia was, is and will be a unique personality no matter how unwell they become. Other posts offer great common sense reflections such us ‘NCD, otherwise known as Dementia‘ where she reacts to the baffling declaration from the American Psychiatric Association that dementia will now be known as ‘Minor and Major Neuro-Cognitive Disorder.’

If you have any reason to need to know more about dementia (and perhaps we all do), then do check out her blog – I guarantee you will be glad that you did.

Epanutin Scandal Picked up by The Daily Telegraph – Now MPs Need to Know

I am delighted to say that my previous post concerning the scandalous increase in the price of Epanutin, an important epilepsy drug, has been picked up by the mainstream media and was reported in The Daily Telegraph today. The increased exposure that the story will now receive is greatly welcome, as it is vital that the pharmaceutical industry realise that when they try to manipulate the price of important medical treatments in this way it will not go unnoticed. What we now need is for MPs to become aware of this misuse of a monopoly position, in order to try to put real pressure on the companies involved.

I have written a draft letter below which I will be sending to my MP, and to Jeremy Hunt, and it would be fantastic if as many people as possible could join me and do the same. Please do copy and paste the letter below if it is helpful.

Stephen Adams, the medical correspondent at The Daily Telegraph discovered some interesting facts during his investigation. The first is the full cost to the NHS of the price increase – a cool £44m each year, or, to put that figure into perspective, enough to employ 1800 extra nurses. The second is the exact nature of the loophole Flynn Pharma have used to be able to get away with it, which relates to changing the drug from a branded formulation to generic.

The price of branded medications such as Epanutin is negotiated between industry and the Department of Health, which means the industry cannot unilaterally determine the price. For generics the market is supposed to keep prices low through competition, so prices are not negotiated. The problem with the market in health care, however, is that is not like other markets, and it sometimes throws up odd quirks where market dynamics cannot work – this is one such case. The fact is that there is no generic market for phenytoin. This is partly because currently there is only one manufacturer – Pfizer, who are now selling their drug to Flynn Pharma – meaning there are no competitors out there. However, even if a new company started manufacture straight away, we would not be able to switch any of our patients to the new brand, because the British National Formulary advises us to prescribe by brand only. We would be able to start new patients on the alternative brand, but this is an old drug and not that many new patients are started on it – it would be impossible for an alternative provider to develop a worthwhile market share.

If, like me, you feel that we should not stand by and watch this improper use of vital NHS resources, please consider using the letter below to send to your MP. And if you do decide to write, it would be great to hear about it in the comments below – and to let us all know of any reply you get too! Thank you for your support.


At this time when the NHS is trying to make significant efficiency savings, I am writing concerning an abuse of monopoly position by the manufacturer and distributer of a vital epilepsy drug, which is set to cost the NHS an extra £44m per year – the equivalent of employing 1800 extra nurses.

The drug is Epanutin (phenytoin) which helps to prevent epileptic seizures, and the scandal was reported in The Daily Telegraph on 13th October 2012 (http://www.telegraph.co.uk/health/healthnews/9604683/Pharma-firm-hikes-cost-of-epilepsy-drug-24-times.html). On 24th September this year all GPs received a letter  from a company called Flynn Pharma (http://www.mhra.gov.uk/home/groups/comms-ic/documents/websiteresources/con185674.pdf) detailing their acquisition of the marketing rights for Epanutin. The drug was still to be made by Pfizer, in the same factory and in exactly the same way, but would be packaged and distributed by Flynn Pharma under a new brand ‘Phenytoin Sodium Flynn Hard Capsules’. The letter neglected to advise GPs that the cost of 28 tablets was set to rise from 66p to over £15 – nearly a 24-fold increase.

Flynn Pharma have been able to impose this phenomenal price rise by relaunching the product as a generic medication. The cost of generic medications is not regulated, as the market is supposed to keep prices down through competition. The problem with Epanutin is that there is no generic market, due to the unique situation with epilepsy drugs.

There are two reasons for the lack of market forces for epilepsy medication, and phenytoin in particular. The first is that quite simply there is only one manufacturer of phenytoin capsules in the UK – Pfizer, which means that GPs have no alternative generic product available. However, even if a new company were to start manufacturing an alternative, or supplies could be obtained from abroad, GPs not be able to switch any of their patients to the new brand, because the British National Formulary advises them to prescribe by brand only. This is because even a minor change to the prescription for phenytoin could cause changes in blood levels of the drug, with catastrophic consequences – a seizure is not only hazardous for the patient, but a single seizure would cause an epilepsy sufferer to lose their driving licence for a year.

Flynn Pharma are therefore calling their product generic in order to vastly inflate the price, when in fact such a concept does not exist for this medication. In fact they must recognise this, as they actually direct GPs in their letter to prescribe their own brand.

I am sure you are as concerned about the proper use of NHS resources as I am, and would be grateful if you would consider raising this issue in parliament, in order to try to obtain a review of this situation with the Department of Health. This is important not only for the current situation, but also to prevent the pharmaceutical industry from exploiting this loophole with other epilepsy drugs in the future.

Thank you for considering this matter.

Yours sincerely,

The Marketing of Epanutin – Re-energising a Product for an Underserved Population, or Big Pharma Behaving Badly?

Imagine if you will that, through no fault of your own, your life depends on Widgets. You need to have a Widget at all times – in fact a constant supply of them as a Widget is only good for a day. If you run out of Widgets there is a real risk that something terrible will happen.

Thankfully you know someone who makes just the Widget you need. His name is Phil, and he says he makes Widgets because he cares about you. Then one day Phil writes to you and tells you he won’t be able to sell you Widgets any more, but not to worry as you will be able to get them from someone he knows called Fred. In fact, you don’t need to worry at all because, although Fred will call them Gizmos, they are actually still Widgets under a different name – that is because Phil will still be making them just as before; he will sell them to Fred who will then label the Widgets as Gizmos and sell them to you.

It takes a little while to adjust to this news – Widgets are something you depend upon after all. You trust Phil, though, and reconcile yourself to using Gizmos instead of Widgets and order your first supply from Fred – only to find that where a supply of Widgets cost just 66p, the same number of Gizmos will set you back over £15.

It’s the sort of behaviour we might expect to find in the back-street supply of illegal drugs – but what if a Widget is actually an important anti-epilepsy medication, while Phil and Fred are the Pharmaceutical companies Pfizer and Flynn Pharma? For that is exactly what has happened.

Pfizer have long been the manufacturers and distributors of Epanutin (generic name Phenytoin), one of the oldest drugs used in the treatment of epilepsy. On 24th September 2012 they agreed to transfer the marketing authorisation rights of Epanutin Capsules to Flynn Pharma. All GPs received a letter from Flynn Pharma advising us of the change, and the fact that we will have to change the prescriptions of all our patients on ‘Epanutin Capsules’ to read instead ‘Phenytoin Sodium Flynn hard capsules’. This is annoying in itself as it requires unnecessary work to make the switch, and no doubt some patients will be concerned or confused by the change. The letter was reassuring, however, as the new drug is exactly like the old one – so exactly in fact that it is still being made by the same people at the same site in the same way, only the packaging has changed.

What Flynn Pharma neglected to mention, however, was the price hike – from £0.66 to £15.74 for a packet of 28 capsules. How can this possibly be justified? Flynn Pharma’s website states that:

At Flynn Pharma, we aim to rediscover tried and trusted branded pharmaceutical products. We re-energise products for underserved patient populations

Epanutin is not a drug that needs to be re-energised. Doctors know how it works and, until recently, where to get it from. The ‘underserved patient population’ in question does not need this drug to be rediscovered or remarketed, what it does need is a reliable, trustworthy source of supply. No other justification for the change has been presented to me and, unless there is some crucial piece of the puzzle I am not party to, the only justification I can see is Big Pharma wanting to make new money out of an old drug.

Of course, it won’t be the patient paying the extra cost, but the tired old, uncomplaining all-absorbing NHS. And I will have to go along with it; my options are very limited. No-one else is makes the capsules. There is a liquid version, but the doses are not equivalent. While there is a tablet form which is cheaper, there is a caution in the British National Formulary which states that changing from capsules to tablets could possibly cause problems in some patients. If there is one drug I don’t want to mess about with it is phenytoin. Minor changes in dose can lead to major differences in blood levels, which could trigger a seizure. For a patient with epilepsy a single seizure, as well as being unpleasant and potentially hazardous, can mean losing your driving licence for 12 months. No matter how angry I feel about this, or how low I feel the risks to be, the stakes are too high for me to ask any of my patients to change their medication without very good reason.

I don’t know how this change has been allowed to happen, but I would like to find out. Which organisation fights for the NHS here? The Medicines and Healthcare products Regulatory Agency (MHRA) decides if a drug can be licensed, but not if the NHS can afford it. The National Institute for Clinical Excellence advises doctors on which treatments can be afforded, and which offer best value for money, but does not seem to have a role in price-setting. If there is a body that is responsible for protecting the NHS from this sort of behaviour then I can only conclude that they are not doing their job properly – and if there isn’t, then there jolly well should be!

On Shrinking or Growing

We doctors like to think that each day brings another stream of contented patients, leaving our rooms with their health bolstered by the edifying power of our erudite and well-considered advice. And maybe each day a few do just that. We know, however, that lives are far more complex, that the doctor only plays a minor role in any individual healing journey – and that the patient may play no small part in the journey of the doctor also.

“Our patients are our greatest asset,” was what my former senior partner, Chris Jagger, said to me when he invited me to join the practice over ten years ago, and the longer I have been in General Practice the more I have understood what he meant – that the people I am meant to be helping will have an important role in teaching me and shaping me as a doctor.

One such lesson, which I come back to again and again, happened a year or so ago when a patient said to me: “When something bad happens to you, you can shrink or you can grow – and you do have a choice.” These wise words are well worth holding on to, storing somewhere safe and retrieving whenever the need arises.

They say that you can’t tell if a bridge is well made when a cat walks over it – but if a train crosses the same bridge then it has been well and truly tested. The woman who gave me this gem of wisdom has experienced the odd express train over the years, and so I know that this advice is born out of real life rather than the theoretical musings of someone who has never known adversity.

I have just come across a powerful example of someone choosing to grow despite impossible circumstances when I read The Diving-Bell and the Butterfly by Jean-Dominique Bauby – a book that I would recommend to everyone as a remarkable source of inspiration and hope. It is only 135 pages long and consists of short, disjointed chapters with no sense of a plot and so it makes an unusual read, but it is compelling nonetheless.

The book is the account of its author about life with “locked-in” syndrome. This aptly named, profoundly tragic condition occurs when the brainstem is devastatingly destroyed – usually by a stroke. The brainstem is the connection point between the thinking part of the brain and all the body’s functions. A person with locked-in syndrome can think, hear, and see, but cannot speak or move. Conscious yet totally paralysed – this is no ordinary express train to test the structure of your bridge. A stroke was the cruel force behind Jean-Dominique Bauby’s reduction from Editor-in-Chief of the French Elle magazine to locked-in patient at the frighteningly young age of 44. He had only the slightest residual movement – he could blink his left eyelid – and with this he communicated with the outside world, and ultimately dictated this book.

What is remarkable about the book is the author’s lack of bitterness and the strong sense of hope that permeates its pages. Bauby is honest – he does not hide the reader from the pain, frustration and humiliation inherent in his situation – but he has a determination to see the beauty of little things that we don’t normally notice, the ability to dwell in the moment and seize every opportunity to bring a richness to his existence – using his imagination to take him to places that were denied him when he was free to roam. For someone who could apparently do nothing, he was always busy – seeing, thinking, listening, and latterly composing, reworking and memorising the chapters of this beautiful book, ready to laboriously dictate them the next morning.

When someone shows as much courage in diversity as Bauby has shown there is a danger that the inspiration we might receive is tempered by a deep sense of inadequacy by comparison. Here, Bauby helps the reader to stay connected to him by making it clear that he is far from a perfect saint. He is open about his own inadequacies, particularly from before his illness, and you get the impression that he would have been hard to live with at times. He laughs at himself, cracks bad jokes and never gives up hoping for a cure. You feel that you can relate to him – here is a normal guy who has learnt, for the most part, to hold on to that most human of traits – hope – and choose to grow despite it all.

In our success-driven modern world we like to live our lives pretending that adversity won’t happen to us, but if you work in health-care you are reminded daily that it frequently does – and so I commend this book to you, and I will hold on to my patient’s advice. I only hope that, with God’s help and grace, I will always be able to choose to grow when I have the opportunity.

Multiple Sclerosis – the developing link with Vitamin D

The 19th Century was the real heyday of discovery when it came to the enigmatic role that vital amines (or vitamins as they came to be known) play in human physiology. That our bodies could be so dependent on minute quantities of these mysterious substances was demonstrated profoundly in the cure of the dreaded disease of scurvy, by the simple provision of limes to sailors. The prevention of beriberi, rickets and other diseases of deficiency soon followed, and in the early 20th century all the scientists had left to do was to identify and purify the dietary compounds responsible.

We are never likely to cure a vitamin-related disease in one fell swoop in quite the same way again, but there is still much to be learnt about the role they play, and the possibility that a relative deficiency in a single vitamin might influence our risk of developing a particular disease. High on that list is multiple sclerosis (MS), a debilitating disease of the nervous system, and its relationship with Vitamin D. Although we do not know the cause of MS, we can be sure that it is not simply a matter of deficiency – many people have low Vitamin D levels and do not develop MS, while many of those who do develop it will have normal levels of the vitamin. Genetic factors and other environmental triggers will certainly play their part. The question is – does a low level of Vitamin D make you more susceptible?

Well, there is some compelling circumstantial evidence. One of the most striking reasons to think about Vitamin D in particular is the unusual geographical incidence of the disease. This is beautifully demonstrated on this map, based on WHO data. Whatever explanation we come up with for MS, it has to account for the remarkable predilection that the condition has for increasing latitude away from the equator – something that also makes it a pressing issue in the northern climes of the United Kingdom. That sunshine is our most potent source of Vitamin D is something I have already commented on in this blog, and this is clearly a commodity the equator has in abundance compared with the poles. There is also evidence of an association between low blood levels of Vitamin D and the development of MS, and only last week, new research was published from Oxford which suggested that at least some of the genetic link could be related to problems with Vitamin D.

The Oxford study was clever in its approach. They took about 1500 children with MS and looked at the genetics of their parents, to see if they were carriers for a genetic defect known to be linked to Vitamin D deficiency. If a child inherits two copies of the gene (one from each parent) then they develop a congenital form of rickets due to severe Vitamin D deficiency, but being a carrier for the genetic defect is not thought to be a problem. They discovered that of the 3000 parents, 35 of them were carriers for the gene. In itself that is not too remarkable. That means 2965 parents did not have the gene and yet had a child who developed MS – hardly evidence of a strong genetic cause. What was interesting, though, is that in all 35 cases the affected child inherited the genetic defect. Left to chance you would expect only 50% of the children to have inherited the gene – as the researchers say, it is like tossing a coin 35 times and getting heads every single time. Interesting indeed!

The problem is that all this evidence, good as it is, is circumstantial – there is no proof of cause and effect. It is rather like finding the candlestick that killed Colonel Mustard in the library with Miss Scarlett’s fingerprints on it – good, but not quite good enough to make a conviction – maybe she just liked polishing candlesticks? What we want to know is this: Would taking Vitamin D supplements help to prevent MS, or help avoid relapses in people who already have MS? To answer those questions we need a large, randomised study where thousands of people are given either the vitamin or placebo, and a second, similar study in people who already have MS.

The problems are these: The first study has to be large, and large means expensive. Vitamin D is cheap and generically available which means drug companies will not be interested in making an investment, leaving the cost to fall on research charities and governments in these austere times. The second study can be smaller, since episodes of relapse in people who have MS will be much more frequent than new episodes of MS in the general population, but how do you stop people with MS from taking Vitamin D on their own initiative? The placebo arm of the study will not be much of a placebo if everyone is also obtaining the vitamin from their local pharmacist. If I had MS would I take it? Well, yes. On the grounds that Vitamin D supplements (at normal levels) are safe and probably a good thing anyway, I think I could be convinced on even circumstantial evidence.