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De Puy and their patients

This morning I spotted an article in The Telegraph about how patients may have been fitted with faulty hip replacements due to a manufacturing error at the De Puy plant.  According to the article De Puy is not being exactly responsive in answering questions on this and may have known about the problem for some time.  Ill fitted hip replacements can be very painful for patients and can even be a patient safety issue.

For me a few things sprung out of this issue.  First and foremost no healthcare manufacturer should ever ignore potential patient safety issues and if De Puy knew about this flaw  they had a duty of care to their patients to inform the regulators so that said patients could be closely monitored for potential problems.  We were all appalled by the recent car scandal where manufacturers lied and tried to ignore a manufacturing fault – but if De Puy did knowingly ignored this problem then they too deserve the same villification, if not more.  After all here we are talking about surgically implanted devices not cars – and a potential direct risk to patient safety.  After the healthcare’s efforts to address its reputation problems I will also be disgusted if this turns out to be another example of “big bad pharma” (whilst De Puy is a device company it is owned by pharma’s J&J).

Shocked at this news post I naturally went straight to the company’s home page to see if there was more news.  Afterall if I were a patient or had a member of the family with a De Puy hip joint I would presume that the company has posted something to their website to provide me with information.  I would also do the same if I worked for the media btw.  I was therefore very shocked at what I found on their website.

According to their website they are inspired by us (I read that as including patients) and listen to patients and yet there is no option for patients on the website!  As the image below shows they are only interested in HCPs, job seekers and vets.  What about the poor patients?  And indeed what about the general public and media?

De Puy.png

In this day and age not having a general information website open to the public is questionable to say the least.  This is doubly the case for devices which do not face the same strict regulatory requirements as pharma.  Now clearly HCPs are the company’s main stakeholders, which is fair enough, but with most people now turning to the internet for information, including patient’s friends and family, it seems ludicrous not to offer up some general information about the product that is going to be surgically implanted into the patient. My mother is likely to need a hip replacement in the near future and I will want to know all the details about the product, including the manufacturer, and I will visit their website and expect to find information there.

This is of course also an issue today with new of a faulty product hitting the news.  How can I trust a company that is apparently selling faulty hip replacements but refuses to acknowledge its end users the patients?  How can I trust a company that refuses to communicate with me – even if only to tell me that due to regulatory requirements they cannot share certain information?

The other thing I did was to check their Twitter handle – again an issue like this raises questions I want to ask the company via my medium of choice, i.e. social media.  Whilst it looks like someone has secured the Twitter handle that is as far as it goes.  Whether it is De Puy or someone else who owns this is unclear but either way this looks bad on De Puy.  Firstly if someone else has secured the handle then shame on De Puy for not having noticed this and resolved this issue.  If it is their handle then at least take ownership and make it look formal and just state that you have not launched it yet.  As it is it just further adds to my bad impression of De Puy.

De Puy2

I know I am just an insignificant carer and my mother just another patient but I for one will be talking to my parents about this and suggesting that if their surgeon suggests a De Puy product they ask for other options.  I for one do not trust this company to insert a device into my mother.  I wonder how many other carers and patients will feel the same as a result of today’s news and today’s lack of transparency from De Puy?

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The dawn of a new patient era

Last week I wrote an article inspired by Mighty Casey’s blog post and in response to the very insulting post written by  Niam Yaraghi in USA Today.  The essence of the article can be summed up by quoting directly from the article:

“Patients are neither qualified nor capable of evaluating the quality of the medical services that they receive. How can a patient, with no medical expertise, know that the treatment option that he received was the best available one?”

As a patient I felt compelled to respond to this incredibly arrogant and derogatory post which paints patients as intellectually challenged when it comes to their health. I have personally experienced the effects of poor judgement from my doctors and the positive response of being an empowered patient – and I am certainly not intellectually challenged when it comes to my health!

I was expecting a few responses from patients to my post but I am positively surprised by the size of the response I have got from other patients.  This article has clearly hit a nerve, not just with me, but with patients around the world, and quite rightly so.

For years patients have had to put up with a patriarchal attitude from doctors towards patients.  Traditionally a doctors’ word was seen as gospel and patients were deemed uneducated enough to do anything but follow this medical gospel. This attitude still persists, sadly, with some doctors, and clearly also with some academics, despite substantial changes to society and access to health information.

For years we patients had to put up with being misdiagnosed, and having to suffer in silence.  Women in particular have born the brunt of negative responses from physicians.  A hard working woman (mother, lawyer, etc.) turning up with depression, fatigue and weight gain, for example, has generally automatically been diagnosed with depression and put on anti-depressants.  No further questions asked, no further tests done, problem solved. Simple. Except many of these women were not suffering from depression and had to subsequently put up with years of ill health – and any queries on this diagnosis put down to “hormones” or “emotions” or indeed “it’s all in your head” (this was the response one endocrinologist gave me).  We slaved on – sick, tired, depressed (despite the meds) and made do with being told what to do.  Whilst women often bore the brunt of this many men also went through the same thing.

There has however been a big change in our society and healthcare, both from the patient side but also from more enlightened doctors (and academics).  The doctor’s word is no longer always seen as gospel – for better or worse. Patients are now querying this gospel, and if they are not satisfied they seek other opinions and find their own answers.  Patients are standing up for their own healthcare and becoming empowered enough not to accept this medical gospel.   The internet and social media is allowing us patients to do our own research and to become more educated in our own healthcare.  While we may not have gone to medical school, and I would never suggest patients are more medically educated than doctors, we are becoming educated enough to be able to enter into a discourse with our doctors and to challenge the old fashioned gospel.  We know our own bodies and we know when something is not right.

There is now plenty of evidence of patient’s seeing potentially huge health improvements through their own empowerment and through taking a stand when they feel a doctor’s response may be overlooking a key factor.  Doctors, whilst highly educated and trained, are still only human and they are not infallible.  Today’s medicine is quite rightly moving towards a dialogue rather than the traditional gospel-like monologue.

After so many years of putting up with false diagnosis, of our queries and opinions being dismissed and of having to make do with sub-optimal health, patients are are naturally becoming more vocal in the healthcare arena.  So when an academic comes along and tries to put us back into that old patriarchal system and tries to tell us that we are incapable of evaluating our own healthcare, we are quite naturally angry and upset.  Years of not having had a voice has now made us louder and more vocal.  We will no longer make do with the medical gospel and we will no longer just accept a doctor’s word, unquestioning, if we continue to experience the same ill health.  We will dig deeper, we will look for more information and we will question the medical gospel in order to regain our health.  And we will respond when someone questions our ability to understand our own health.

I am proud to be an empowered patient and I am proud to see so many other empowered patients also speak up against this derogatory portrayal of patients as being incapable of making decisions about their own health.  I am proud to be part of this revolution in healthcare and to be a witness to the dawn of a new era in our own healthcare.

The dawn of a new era

The dawn of a new era

Patients are not total idiots!

Yesterday I read an awesome post by the MightyCasey in response to an astonishing post by a certain Niam Yaraghi in USA Today.  According to said Niam Yaraghi patients are incapable of managing or understanding their own health and should leave it all entirely up the medical professionals.  In essence in his article he treats patients like small, stupid children who have no idea what they are talking about and, whilst capable of making highly complicated investment decisions, are not capable of making basic healthcare decisions.

My first jaw dropping moment was when I read:

“Patients are neither qualified nor capable of evaluating the quality of the medical services that they receive. How can a patient, with no medical expertise, know that the treatment option that he received was the best available one?”

“……….”  That’s me being speechless.  Really?  So we are not capable of realising that we are getting better or worse? And doctors always have the answer to whether we are getting better or not?  Looking at this one point I go back to my own experience.  I had been diagnosed with hypothyroidism, was on the appropriate medication, and, according to the specialist I went to see, I was totally healthy and the severe fatigue, depression, 15kg weight gain, etc. was all in my head.  This was a doctor that followed Niam Yaraghi’s view that patients were total idiots and had no idea what was going on with their own bodies. As it happens I am not a total idiot and I knew the doctor was not right (shock horror!  But doctors are always right according to Mr Yaraghi!) and something was wrong.  I went online, self-diagnosed and then got got a second opinion from a specialist back in the UK.  It turned out that stupid patient me was actually right and the specialist I had first seen was wrong.  I had Hashimoto’s and I needed to do more than just take my pills to get back to normal.  Had a acted like the USA today article says I should act as a patient and just trust the doctor I would by now be too sick to work or write this blog, or worse.

thyroid

This also leads on to the second point in the quote namely that patient’s cannot possibly have any idea about what the best treatment option is.  Casey covers this very nicely in her post by flagging that a doctor who graduated years and years ago, and who may not have remained totally up to date in your specific condition, may in fact not have the best idea of the latest medical breakthrough in this disease.  This is especially true for patient with rare diseases, who are often much more knowledgeable on the latest medical news in their disease.  This is all thanks to this amazing tool called the internet and social media.  I myself for example informed my doctor of some new trials happening around timing of taking thyroid meds – the established knowledge is that you take the pill in the morning but new evidence suggests night time may in fact be better – my doctor had not seen this bit of news.  This is not to say that all patients know more about the latest thing than doctors do but you cannot discount the knowledge of patients with chronic diseases who spend considerable time researching online as well as sharing experiences with other patients.

empowered patient

Next our article goes on to say that people are able to make complex financial investment choices as they have a baseline with which to compare the end results but that patients have no such thing for their healthcare.  He also goes on to say that we are not capable of judging the short and long term outcomes – only a doctor can do this. Admittedly we cannot say how many years we will have left to live – but frankly no doctor can guarantee that either.  What we can tell you is by how much we feel better – and we do have a baseline of our health prior to sickness.  In my case, for example, once I got the right diagnosis and made the appropriate changes, my depression disappeared, I was able to function normally again and I lost some of the weight (sadly not the entire 15kg).  This to me is a pretty good indication that my healthcare was improved. In terms of timing I had a small positive short term outcome and currently the longer term outcome is looking pretty good too (although still not lost any more weight).  I have also had this disease long enough to have a good idea of what my blood results mean (at least in terms of good and bad) and I can tell that my blood results are improving.

“While the interaction between patients and their medical providers is an important element of the medical care process, it is not the most important one. To choose the best medical provider, patients are encouraged to rely on measures of medical expertise and avoid invalid online reviews.”

Finally I would like to point out that slighting the importance of the interaction between patients and their medical providers is also somewhat shortsighted.  Admittedly in many cases it may not be the most critical element but it will probably come in a close second or third, whilst in other cases it is indeed the most important element.  If the interaction is terrible a patient may ignore all of the doctor’s advice and turn to other sources, which may endanger their lives, or simply become less vested in their healthcare, less adherent and in future lie to their doctor – also resulting in negative outcomes.  After my personal, horrific experience with the Spanish endocrinologist, I could have just fallen deeper and deeper into depression and stopped going to seek medical help altogether, instead I ended up finding the most amazing doctor I have ever, ever had (Dr Kruhl in Zurich) and who I trust entirely with my health and my life.  If she tells me to do something I will, had the Spanish endocrinologist told me to I would have ignored her.  I think it is fairly clear from this just how important the patient physician interaction is.

When it comes to online reviews they also can have a role to play – firstly I found my amazing Dr Kruhl through online reviews.  Secondly I value the input from other patients with similar conditions far more than a random pick of a doctor’s surgery based solely on their location or position in the yellow pages.  It is also not just about the medicine any more.  It is about having the empathy, the understanding, the interaction skills as well as being digitally adept enough to stay up to speed with the latest thinking.  You can have the most medically adept physician but if his expertise has not been kept up to date and he treats his patients like stupid little nincompoops then his outcomes will not compare to an equally medically adept physician who is able to empathise and interact with this patients, and share the latest digital support tools with them.

So I say to you Niam Yaraghi, as a patient – we are not incompetent nincompoops incapable of educating ourselves around our healthcare and of making valid decisions around our healthcare.  The days of your type of thinking, when doctors were revered and were never wrong, and patients were treated like irritating, stupid little children are drawing to an end.  In fact this article highlights the dangers of people with no empathy or understanding for patients, for today’s changing healthcare dynamics and for the real world, of getting involved in the healthcare system.  I would challenge an academic technologist and economist to get out of the theoretical environment of the university and go out and talk to empowered patients and patients with chronic diseases before you label all patients as stupid and incapable.

walk a mile

The short lifespan of a wearable

screen-shot-2014-08-12-at-4-25-46-pmWearables are this year’s hot item.  They are trendy and all the cool kids want one.  They can link to your mobile, they can tell you your heart rate, how far you have run, calories burnt and they are shiny.  I want one.

Or rather I want another one and this time I want one that actually suits my activity and lifestyle not that of some marathon running health junky.  I also want a wearable that actually has a decent lifespan – both in terms of battery life but also in terms of years of use.

My first request, that of a wearable that suits me, has been quite hard to find.  The majority of consumer wearables and health apps are heavily focused on jogging or walking.  My recently purchased Samsung S6 has a health app, S Health, which seems okay, ticking quite a few boxes, as long as you are into running.   You see my problem is that I do not jog and do not ever intend to jog (my body is not made for running). I walk a fair bit but not as a “sport”.  The only real sport I do is swimming.  Whilst the app does give you the option of adding a whole array of other sports the parameters for these is very restricted, and IMHO pretty rubbish. I am a “proper” swimmer, and even had lessons a few years ago to perfect my strokes.  I swim a reasonably paced front crawl and I try to swim between 2-3km a day and I swim 1km in about 15 minutes.  My S Health app however only gives me the variable of time – I cannot input what strokes or distance along with time.  I swim faster than a lot of swimmers in the pool, doing a strenuous stroke, and what I swim in 30 minutes is very different from what they swim.  Equally those powering past me in the other lane are swimming way more laps in that time frame.  Yet the S Health app does not allow any input other than time.  That is pretty rubbish.

PoolmatePinkSo how about buying a wearable for swimming?  Well I have.  Been there done that.  I bought a PoolMate Swimmers watch which counts my laps, speed, distance, efficiency and time. I loved it!  It was great and allowed me to concentrate on my swimming without having to worry about counting laps. It also finally allowed me to get an idea of how I swim and how many calories I burn (turns out I am quite an efficient swimmer).  Sadly though it is not “smart” so I cannot synch it to my phone or track my progress with an app.  It does however come in colours other than the usual dull black (I opted for the baby blue version).

Then there is the lifespan of the product.  I bought my PoolMate just over a year ago and have been using it on a very regular basis, but recently it has stopped counting laps properly.  I am gutted as I now have to go back to counting my laps.  The poolmate is however not the first wearable I have had – I had a Nike Fuelband too.  That also turned out to be cool to start with before it went demented. In the case of the Fuelband I gave up on it when I had done a 2 1/2 hour hike up a Swiss mountain and the stupid thing told me I had not met my target of steps for the day!

Both of these products started with high cool and wow factors and I was very happy with them, only for them to then shatter my happiness by losing accuracy.  As I look at many of the new wearables and technology hitting the market I notice that we do not seem to be that fussed anymore about product lifespan.  Many of the new smartwatches may be mega shiny but they often only have a battery life of a day!  What is the point of a watch that you need to charge every day?!  The same actually goes for phones – but as long as my phone last a day with full use I am happy (my old iPhone 5 did not manage this at all in the end – it barely made 1/2 day).  We seem to have moved into a world where we are happy for products to have a short lifespan and batter life – or is it in fact that we have just accepted that this is the new world because this is what the manufacturers offer us?  Newer phones come out with more shiny functionalities but not much improvement on batter power.  Wearables last a year or two and then there is the expectation that we will upgrade or buy a new one.  Is this right?  I feel like it shouldn’t be.

SwimmoThat said I have just gone and followed the trend in the purchase of my latest wearable.  Fed up with my poolmate I clicked on an advert on Facebook (yes they sometimes work!) to a kickstarter page for the Swimmo Smartwatch.  Looking at the specs and the description I got very excited.  It sounds like exactly the kind of wearable I am after, as a non-jogging swimmer. It counts laps, tracks my swimming, has a heart monitor, is linked to an app and tells the time.   In fact I got so excited I pledged!  What I didn’t think about was the battery life and whether it would actually be better to wait until it was on the market to see reviews and whether it actually works.  But no – I got lost in the shiny shiny excitement, and a bit also in the “ooooh” of being involved in the kickstarter stage.  I suspect my new watch when it comes will indeed be shiny but I will probably have to charge it everyday.  On the other hand I like their Facebook page – they are clearly really into swimming – and I love the photos on their Facebook page too 🙂

swimmo2

A patient’s point of view

I was recently involved in a workshop for a pharmaceutical product and one element we talked about was the emotional journey a patient goes on, and how digital tools played a role in that journey.  This really resonated with me as a patient.

We are of course all patients at some stage or other, but some of us are patients with chronic or long term illness which require on-going treatment.  In my case I have Hashimoto’s, which causes hypothyroidism, and I will need to take thyroid hormones the rest of my life.  My journey as a patient with a thyroid condition has been highly emotional, distressing and sometimes extremely difficult.

A patient will experience a whole array of emotions as they go through their own journey.  Mine started with joy when I was told I had hypothyroidism – I finally had a reason to my sudden and excessive weight gain.  Unlike in some other conditions I never really felt isolated, in part because I was very open on Facebook about my hypothyroidism, and this resulted in a surprising number of other friends also identifying that they had the condition. I also initially did not have many problems, it was only in the last year or so that things got worse and it was at this point that I would have been in danger of feeling very alone with my condition had it not been for Facebook.

As my condition and health deteriorated, the journey became more emotional and more distressing.  I put on weight again, felt lethargic and was constantly tired, and I felt depressed and low.  I was very miserable.  I also got increasingly desperate.  As an educated woman, working in the healthcare industry, I knew that something was not right with my health – something was wrong.  As per my previous post I received absolutely no support (informational or emotional) from my then doctor.

In the days of old I would have been totally alone at this point in my journey.  I would not have known that it was not right that I was feeling this ill. I would have been totally dependent on my doctor’s response (good or bad). I have no idea how I would have coped with the despair, the depression and the fear (and believe me thinking that you may spend the rest of your life feeling exhausted and listless is very frightening).

Fortunately today we have the internet and social media.  It really was a game changer for me and my disease. I already knew that my symptoms were common for hypothyroidism but what confused me was that I was already on a very high dose and should have felt fine and full of energy.  I was terrified of lowering my dose and feeling even worse (and putting on yet more weight) and yet this is what my blood results indicated I needed to do.  I was also scared that it was just me – that other patients coped fine and it was just my body not working properly.

Through a support group on Facebook I very quickly found out I was not alone.  In fact far from it.  It turns out there are many patients on treatment but having issues with their health, their symptoms and their doctor’s response to their concerns.  It was such a huge relief to find out I was not alone and to have fellow patients to share my story with and to be able to connect with people who felt exactly like me.  The emotional support that this virtual engagement provided was immeasurable.  I no longer felt alone and the feeling of despair went down as I felt there were answers and there was hope.

It was through this support that I found the strength to question my previous doctors’ response and seek further treatment.  I paid, out of pocket, to see an endocrinologist in the UK and I armed myself for that appointment with as much knowledge as I could, from the internet, in order to ensure I received the optimal treatment for me.

My appointment with Dr Morris was like chalk and cheese compared to the Spanish endocrinologist.   He was supportive, listened to me and provided some solid advice, which included bringing my dose down.  The way he advised me took some of the fear out of lowering my dose.

The rest of the fear was taken away because, through my online searches, I had found out that in a very small minority of patients being on too high a dose can cause the same symptoms as hypo even though they are hyper.  Turns out I was one of this small minority.

The other thing Dr Morris did was confirm what I had suspected – my hypothyroidism was caused by Hashimoto’s disease.  Following the Spanish endocrinologist’s failure to tell me what was causing my hypothyroidism I had gone online and done my own research using my blood results.  Through this research I had self-diagnosed Hashimoto’s but it was also great to get it confirmed by a physician.

Armed with this confirmed diagnosis I did more research.  Through support groups and blogs I found out that most Hashimoto patients have some form of gluten intolerance and that eliminating gluten could help improve health outcomes.  Not one of the doctors I had spoken to over the last couple of years ever talked to me about my diet and the impact lifestyle changes could have on my disease.  It was only through interacting with other patients online and doing my own research that I found out about the changes I needed to make to my diet and lifestyle.

As a result of my online research, I now no longer eat gluten and I have reduced the amount of goitrogenic food such as cabbage.   I am also very careful about getting enough sleep and staying healthy.  The impact this has had has been huge.  I feel relatively normal again now, and whilst I still get tired easily I no longer feel depressed or listless.

My emotional journey has now come to a point where I feel confident and hopeful.  Some fear still remains, for example how my need for ten hours sleep will impact my work and the fear that I may feel ill again in the future.  But for now, thanks to resources and information I found online, my main emotions are relief, happiness and hope.   I do not know where my patient journey will take me to next but I am certain I will find the support and resources I will need online.

Sunrise after a dark night

New hope after the despair – just like sunrise after a dark night