PC Project Patient Meeting

I've just got back today from the European Pachyonychia Congenita (PC) Support Meeting 2010 which was in Edinburgh. I've never been along to a patient support meeting like this before but it was a great experience. The PC Project has now grown from an one person's idea to a worldwide support group for patients affected by the ultra-rare skin disorder. It is a keratin disorder caused by a genetic mutation, inherited as a dominant trait.

The best parts of the meeting were undoubtedly the discussion sessions. Several talks were given which were intended to be the springboard for discussion. It got very emotional at times, particularly in the Sunday morning session, where one of the mothers read out a selection of patient experiences. It was interesting to hear about how many people had lived for many years, some of them almost their whole lives without a diagnosis for their condition. Some had to just 'got on with it' while others were misdiagnosed and poorly managed by their doctors. With a condition as rare as PC, many consultant dermatologists will never have heard of the disease or seen a patient with the condition at all in their professional lives. Patients would often find that their doctors didn't know what their disease was and had to just take the advice they were given, these were the experts after all.

The PC Project enables a bridge to be made between research and clinical practice, now commonly known as 'Translational Medical Research'. It allows the people doing the lab work to find new treatments to meet the people who they are trying to help in an informal setting, and offers the opportunity for the patients to find out first hand about new developments and treatments for their condition. Although the PC Project is small, involving only a few dozen patients in the UK, I think that this kind of model could be applied to informing people about much more common diseases. It works particularly well for PC because most doctors do not know about the disease, therefore meeting the experts is really required for patients to have an understanding of the disease.

The whole experience was very rewarding, and it was great to put a human face to the name 'PC'. It puts some of the work that I did during my BMSc into perspective and gave me the chance to meet some of the people who may one day be receiving the benefits of all of the hard work that's gone into PC up until now.

October Reading Week

Spending the week in Kendal in the Lake District with Amy. Finally submitted my answers to the Foundation Application today, great to get them out of the way. Looking forward to enjoying the rest of the week, then its the second Glasgow clinical SSC, this time in Dermatology.

These doctors must have a low workload...

This made me laugh....Medic Guide: These doctors must have a low workload...

Treatment for Infertility and Latest News

This is the proposed logo for the project being worked on at the moment "The Scottish Universities Medical Journal" which I'm hoping will be developed over the forthcoming year with input from all of the medical schools in Scotland.

This week in the press was the awarding of the Nobel Prize for Medicine this year to Robert Edwards, the man credited with the discovery of in-vitro fertilisation. This treatment has helped over 4 million babies to be born around the world and now in the UK accounts for 2-3% of all new births. Although the process has been criticised from many religious groups, such as the Vatican, there is no doubt about the benefit this technology has been of to the huge numbers of couples every year who are infertile. It has been 32 years now since the first 'test-tube' baby was born in the UK and since then there has been a staggering increase in new developments, such as the development of intra-cytoplasmic sperm injection (ICSI) and pre-implantation genetic diagnosis.

Other topics which have been covered in the news have particularly relevant to me personally over the last couple of weeks. The most pressing is the news that there will be a shortage of foundation jobs for applicants this year. The waste of time, money and talent for any graduating doctor to be without a post next August seems pretty awful, particularly with the application process currently used. It seems that in the next few years an exam style application will be introduced whereby all applicants must complete the form within a set, short time period.

The new government is soon to introduce the true extent of the spending cuts which have dominated the headlines this year. News today is that students may be facing a 100% increase in tuition fees (certainly in England) and/or a new graduate tax. If this is brought in, it will hit students hard and I think many will drop out of university as a result. Medical students in particular (who take on longer, more intensive degrees and have less time for part-time work) will surely be the worst affected. Bringing in higher fees certainly goes against all of the work which the BMA has done in the past 5 or 10 years to broaden access to medicine. The next few weeks will be very interesting to see what happens and the reaction which will be taken to the proposed cuts.

Sunday 3rd October

Today marks the start of the Commonwealth Games in Delhi and I'm looking forward to watching as many of the events as I can over the next couple of weeks.

I read an interesting ethical article today with the title "Should you ever lie to your patients?" based on the 2007 article in the BMJ titled 'Can deceiving patients ever be morally acceptable?'
The author argues that in certain instances it may be alright to deceive patients. The example given is one where a patient is about to undergo surgery where their chance of survival is low, less than 50%, and asks the anaesthetist "Is everything going to be alright?". Should the anaesthetist in this situation tell the truth?

One argument is that you should never lie to patients and I agree with this message. Trust is a core element of the doctor - patient relationship and any form of deceit will fundamentally undermine this relationship. Lying to the patient would deny them of their autonomy, their 'right to know'. Should we always tell patients the truth, no matter how grim the outlook may be? Another option would be to take an evasive approach 'We'll do our best'. This however risks arousing suspicion and further upset the patient. Lying in this situation could be argued to be the most helpful due to compassionate reasons.

The obvious answer to this problem is that as with many ethical dilemmas, there is no right or wrong answer. Lying to patients is wrong and should not be done in any circumstances, however there may be situations where it may be in the patient's best interests not to know the whole truth and it may be more compassionate not to disclose information that could harm the patient (non-maleficence).

What can we learn from professional sport?

I watched with interest a BBC programme tonight on the detrimental effect of professionalism on elite sportsmen and it got me thinking about how it could also apply to doctors.

Professional athletes today have become more efficient, more driven and harder trained, with more facilities at their disposal than ever before in history. Some people spend their lives analysing sport, the perfect way to swing a tennis racket or golf club and the ultimate training regimes. Much of the time this is what drives people to the top to be the best, with every minute of every day fit for a specific purpose. But is this a damaging way to the top? Can this be sustained?

Some of the best sportsmen in modern day, are the ones who still look like they’re enjoying themselves. The ones who are happy with what they do and satisfied with their lives. For example I look at Roger Federer, Usain Bolt and Lionel Messi, athletes who still look like they keep some of that fun they had when they played as kids, before they signed their professional contracts, sponsorship deals and so on and so forth. Athletes who still lead healthy lives off the pitch, and I have no doubt, take time to get away from the game from time to time.

Compare these players to the ones we’ve seen fall from grace in recent times due to their disharmony off the pitch. The Wayne Rooneys and Tiger Woods. There can be no denying that their performance has been affected by things which have happened off the court. Tiger Woods is someone who looks as if his drive and obsessively hard-working approach has ultimately led to his divorce away from golf, and now his poor form on the course. Yes, he was one of the greatest golfers in history, but I doubt he will ever recover fully from the events of the past 12 months. People most often quote the astronomical salaries and immense pressures on England’s footballers as the reason for their failings in the world cup this year. There was never any doubt about the talent on the pitch, but at not one moment did the players look like they were enjoying themselves.

I think that this theory can be applied to medicine as well. It is often said that we are all our harshest critics, but maybe it’s important to take a step back from time to time. A happy doctor is a good doctor, we don’t have to be perfectionists to be good at what we do. I feel that the key to avoiding burnout is taking regular breaks from medicine from time to time, and keeping other interests away from the hospital wards. Medicine is a long, hard career and to make it all the way, this is the kind of doctor I will aspire to be on graduating from medical school next year.