the ordinary blog
Four years ago this week I was faced with the deeply unpleasant decision of the best way to eviscerate (that's remove to you and me) my left eye. Experience has now taught me that doing this under a local anesthetic by Mr Morseman, a surgeon who rarely performed the procedure was the worst possible way and Hampshire NHS Trust and my solicitor settled the matter out of court last year. I hope my complaints have improved things for patients since and if this blog post ends up helping even one person, even just a little then it will have been worth the effort. I can't have a website and not try. . .
I have a genetic disorder which causes retinal detachment called Sticklers Syndrome that has run through my mothers family for generations. Mr Snead's amazing clinic in Cambridge has shown me that I have a less extreme type but it still very nearly made me blind 11 years ago and cost me the sight in my left eye. My retina tore in such an extreme way that 9 operations in 9 months could only temporarily save it.
One of those operations went wrong as the laser broke after I had my general anaesthetic and I awoke to find the usual huge amount of post-op pain missing and my consultant Miss Billington apologising profusely and booking me an op at Moorfields straight away for the following week..
I tell you these things as a precursor for two reasons. Firstly to show I know major operations and I still got caught with a botched one or two. It can happen to anyone. Secondly to show that when dealt with in the right way it doesn't have to end up with a clinical negligence claim.
Atul Gawandi tells a story in his brilliant The Checklist Manifesto of accidently severing a man's artery in his heart and nearly killing him in the process. Amazingly no claim was ever made. The reason was Atul's honesty (the man said he would never have known the cause unless he was told the truth) and Atul's diligence to put it right.
how to prevent
So if you or a loved one have a major operation coming up or in the future what can you do to prevent things going wrong? The most important question I will now always ask any surgeon is......
How frequently do YOU perform this type of operation in THIS hospital?
Mistakes and accidents can and do happen but as Atul Gawandi attests they are more likely when either the surgeon, the support staff or both are not carrying out the procedure all the time. Had I known BEFORE surgery what I found out after I would of saved myself and my family a LOT of physical and emotional pain.
The thing to remember is you have more control than you will feel that you have. Surgeons appear to be naturally dominant and decisive. They have to be to do what they do but you have the Aces, you are the only one that actually decides what happens next. You can ask for a second opinion, you can go to your GP and asked to be treated elsewhere as I eventually did after finding a silicon band extracting itself out my head. You can even say no to surgery completely.
In a lot of cases whether to go ahead and have surgery is a no brainer. A medical emergency, a badly broken leg or a detached retina . But there are times when things are not so clear cut (pardon the pun)! Nasim Taleb who is a very wise man subscribes to the view that doing "something" isn't always the best course of action but it feels right. As humans we are built to value action the classic phrase "Well we just have to do something". STOP.
As I can testify EVERY operation takes its toil and has some negative impact. I went from ginger to grey hair in a couple of years during and after my year of surgery and I think stress played a major part. Football managers seem to go through a similar experience minus the surgery!
Daniel Levitin in The Organised Mind explains how there are forms of Prostrate Cancer where doing nothing is clearly statistically better than surgery and yet he could not get top American surgeons to accept it. Even with comprehensive scientific proof. He has a four box method for working out whether surgery is worthwhile which I will detail in my summary of the book. But the major point here is to consider all your options and surgery is just one of them. You can say NO if you need to. When my retina detached for the last time I decided I didn't want the 10 hour operation .
what happens when things have gone wrong?
Hopefully you will have an amazing surgeon who will explain things honestly and sort them out properly but here is shocking truth number 1. They don't have to tell you anything. In fact it is worse than that they can say it was a success even if the operation notes (that you won't see) state in their own hand that there were problems.
If you live in the UK the first thing to do is go to the Action Against Medical Accidents (AvMA) website. I called their helpline after finding them by chance in a google search and not only were they were so fantastically understanding but they guided me on the best course of action. They provided me a small list of specialist clinical negligence solicitors. From this I found Alison Johnson from Pennington's who was incredibly supportive and got me a positive outcome.
I would also advise making a written complaint to the hospital to tell them in your own hand. It didn't make any difference to the claim but I was able to have an explanation and an apology of sorts. I even helped them improve their information to patients which you don't get when the legal proceedings take off. I found they were even keen to meet until they realised there was no chance of me not going legal.
I wouldn't suggest complaining to the BMA though unless your case is extreme. I had heard that a surgeon would almost have to kill someone for it to make a difference and sadly I can understand why The only thing a surgeon needs to prove is that they did not deliberately cause harm. I spent a lot of painful hours constructing my complaint and after making it through their initial review it got soundly booted out by the surgeon asked to investigate. His comments really hurt and the whole process added no benefit to me or anyone else.sadly
It is hard going through a claim. You have to remember very painful events in precise detail many times. I also had to undergo medical and psychological assessments which were so important to the success or failure of the case. Try to give yourself a total break from the case at times. The reality also is that the result will almost never be exactly what you hope so try not to set your expectations too high, although that is much easier said than done.
Finally I would strongly recommend CBT therapy with a fully trained therapist who you are comfortable with. I went through three before finding the right one. It is not cheap but you should get the money back if you win your case and it made a massive difference to my well being. I probably would not have done so had the doctor in Harley Street not so strongly suggested it. He did so with very good reason and I am very grateful to him.
If you are going through your own journey I wish you the very best of luck and I hope this has been worth the read. I am proud that my wife and I fought as hard as we could for justice but it is tough and you need as much love in your life as you can. My family kept me just about sane and I will always be forever grateful.to them.
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