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A ray of hope in sea of despair

dog5In my last blog post I wrote about my absolute despair at the situation of 60 rescue dogs in a private shelter in Romania that will lose their home next week.  Finding homes for that many dogs in Romania is next to impossible.  Their fate however, if homes are not found, is almost certain death on the streets or in the local death shelter.  It is faced with this task that I have turned, desperately to social media, to try to save as many of these dogs as possible.

I must be honest I had lost hope as few of people seemed to be responding to Anca’s plea for help.  I also wondered how on earth the fate of 60 Romanian rescue dogs could cause even a ripple in social media at a time of so many other huge global crisis such as Ebola or Syria.  Some people may say these are “only” dogs – but each one has a name, a personality and lots of love to give.  But still they are a drop in the ocean. I truly despaired. My previous post was a true cry of despair, a cry for help from anyone listening.

And some of you did listen.  Some of you did start responding, sharing and asking local rescues in your country.  All of sudden there is a ray of hope in the sea of despair.  We have started getting offers in from people who can take 1 or 2 dogs.  A dog’s home in the UK, a foster place in Germany, an adopter in Switzerland, the offers are starting to creep in.  I admit that it brings tears to my eyes to see the uptake of my plea for help.  It brings me hope.  It brings Anca hope – a woman who is a walking zombie she is so depressed and distraught about the fate of her dogs.

It is however still not enough.  It is only a small ray of hope and we must make it bigger.  We still have 50 dogs looking for a home.  Some of them have never lived on the street.  Others are so traumatised from their experience in the public shelter that they just cower in their kennels and shake at the sight of people.  We cannot let these dogs go back to this horrific fate.  These dogs need our help – urgently.  At the very least we need to find long term sponsors who will save these traumatised dogs by paying for a private shelter where they are cared for.

Which brings me on to funding.  Even when we have found homes for all 60 we still need to pay to make their final travel preparations (e.g. final vaccines for the puppies) and fund the cost of their travel, at €220 per dog.  That is a HUGE sum of money.  How on earth can a few individuals raise that sort of money?!!

It is looking at what still lays ahead – the impossible task of find more homes in such a short space of time and raising such a huge sum of money – that for me that ray of hope gets smaller.  The despair sets in again and I cry.  I do not know what else to do but keep begging for more help to pray with all my soul that we can find enough people to open their homes, enough people to give small donations (or a few big ones) and enough people to share this desperate appeal and find more help.

Again I reach out to you.  Please help.   Please share and donate.  And please pray for 60 dogs desperately close to be thrown into a living hell.  Please do not let them die in pain and misery.

For more information please visit: Help Save Anca Florea’s Dogs Facebook Group  or contact me via Twitter @pharmaguapa or email pharmaguapa@hotmail.com or in the comments of this blog.

Azzy, 3 1/2 year old female

Azzy, 3 1/2 year old female

Bebitza getting on in age at 7 years and a little scared

Bebitza getting on in age at 7 years and a little scared

Bodo a 3 year old, playful boy

Bodo a 3 year old, playful boy

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A very negative patient experience

The other day I had what was, without a doubt, the worst medical experience of my life.  The occurred when I went for an appointment with my Sanitas endocrinologist, here in Barcelona.  This was actually my second experience with a Sanitas endocrinologist  – the first one had been bad enough for me to refuse to see that endocrinologist a second time and I had demanded to see a different endocrinologist for my next appointment.  Needless to say I will not be. using Sanitas services anymore.

Let me first provide a bit of perspective before going into the details of the poor service.  I was diagnosed nearly two years ago with hypothyroidism.  At the time it was a huge relief.  I had been putting on weight despite swimming up to 10km a week and dieting, and I had been suffering from bad depression (partially diagnosed by my continual exhaustion).  My diagnosis explained both issues and I was happy to hear that on proper medication things would go back to normal, and I would not notice any effects from the hypothyroidism.  This has only been true to a certain extent.  Initially I struggled to find the right dose and brand, but in Switzerland I finally got to a stable, if very high dose, of thyroxine, which seemed to work.  My life – and weight – started to return to normal and all was good . . . for a while.  Then about six months ago I suddenly put on 10kg and started to feel lethargic, exhausted and depressed again.  Initially I put this down to stress and work problems, how ever the symptoms persisted once I moved to sunny, chill and relaxed Barcelona.   Again, despite dieting and regular swimming, I was slowly putting on yet more weight.  I had a relatively relaxed lifestyle (one of the benefits of being self employed) and yet was constantly exhausted and I started to get aches in my joints (and I really am not that old!). 

Like so many patients with chronic diseases I turned to the internet and social media for advice and support.  It looked like, based on my research, my hypothyroidism was no longer under control.  I also was surprised by how many people I knew who also suffer from thyroid problems.  More worryingly was the common theme that was coming out through my friends and the support groups on Facebook.  It looked like Thyroid disease is hugely under-diagnosed but also poorly understood, and many physicians are rather bad at handling the disease.  As I had good private insurance with Sanitas I decided it was time to go see a specialist.  An endocrinologist would after all understand my disease, the implications it had for me as a person, and be able to provide me with expert advice.  I also wanted to find out, if possible, what was causing my hypothyroidism. 

So it was with this in mind that I, a highly educated patient with plenty of support and information from other patients, went to see my first endocrinologist at Sanitas.  I had specifically asked to see an endocrinologist specialised in thyroid disease so I had high hopes.  You can then imagine my total shock when, after I had asked her about my weight issue and concerns, she promptly replied, without asking me any questions on my diet or lifestyle, that I should eat less!  Anyone with hypothyroidism will tell you weight is a prickly issue and it can be very hard to deal with.  What we hypthyroid patients do not expect is to get told that our weight it totally down to eating too much!  Had this doctor even bothered to take a minute to ask me about my eating habits she would have found out that I would be hard pressed to eat less – I had been living off salad, sushi and very healthy food and I exercised nearly every day. A more appropriate response would have been to have a discussion with me, ascertain if eating “too much” was really the primary problem, and discuss the option of seeing a nutritionist to identify an appropriate diet.

Based on her inappropriate approach I decided to ask to see a different endocrinologist after I had had my blood test results.  I walked into the consultation room and handed the doctor my blood test results.  After a very brief, cursory, introduction she glanced at my results, asked me what dose of meds I was on, and then told me she was going to reduce my dose and promptly started writing the prescription.  Done.  Dusted. In less than five minutes. Next!

Except I pushed back and questioned her response.  I asked her how she could reduce my dose when I still felt so bad?  Her response was swift and blunt – if I did not like her opinion I should go talk to another doctor.  End of discussion.  Again I pushed back – this time on the verge of tears.  I told her how desperate I was and how I could not go on with things the way they were – I needed help with this disease.  I told her that something was very wrong and I could not cope anymore.  Her response was very cold and disdainful, “it’s not my problem” and that I should go see a “head-doctor” as it was clearly a mental issue. I was flabbergasted.  Here was a patient in clear distress – with very physical symptoms typical with thyroid problems – and a medical “professional”, specialised in thyroid conditions, was telling me to go away and that is was not her problem.  She also showed no regard for my distress and handled me with total utter disdain – she had no regard for me as a patient, my health or indeed my safety. I took my prescription and left in floods of tears.  I have never left a doctors office in such total, utter distress and so distraught.  Had  I been suicidal I would without a doubt have killed myself – I was so devastated by not only her response but the inhuman way she had treated me.

I went home and cried and cried – alone at home.  It was only hours later that I was able to briefly post to my Facebook page and the support group.  I got an overwhelming outpouring of support, sympathy and love.  I was not alone and it turned out that as horrific as my experience had been others had also had dreadful experiences.  How could a medical professional be so callous with someone’s life?  I then also checked my results online – doing my own research and found out that my results actually suggested I may have Hashimotos.  The endocrinologist had not even mentioned these results – purely focusing on my TSH results.  I also contacted my brother, who is a GP, and he responded very rapidly telling me under no circumstances should I up  my dosage as my TSH levels were dangerously low and a higher dose could actually be very dangerous.  Again the endocrinologist, knowing that I had been asking about increasing my dose, had not even bothered to warn me about this.  Without my brother’s response I would have gone ahead and increased my dosage and possibly ended up having a heart attack!

I am aware that there may be cultural differences in how Spanish medics deal with patients, and that traditional Spanish doctors have been more paternalistic, if not dictatorial, with their patients.  However cultural differences aside a doctor has a duty to patient’s safety and a duty of care.  Even if this endocrinologist did not appreciate my challenging her response, she should have informed me of the dangers I faced if I did increase my dosage – failure to do so endangered my life.  Also given the link with depression that this disease has, and having a patient sitting in front of you saying they can no longer go on and they cannot carry on living like this, should raise flags.  Again duty of care should have resulted in her making sure I was not suicidal.  Ignoring my mental state and telling me to get out of her office could again have had severe results for my personal health and safety.  As it is I am fortunate to be health literate, mentally resilient, and to have access to great health support and advice online.  Another patient may not have been so lucky and this doctor’s negligent attitude could have cost a life.  Even if a doctor does not personally like a patient or takes umbrage at a patient challenging them they should never, under any circumstances, endanger a patient’s life, deliberately or through negligence.

Unfortunately I have very low expectations that Sanitas will do anything against this professional negligence – and I will not risk my health, and my life, with such poor care. If I am going to pay for private insurance then it will now be in the UK or Switzerland where I am confident of the level of care I will receive.  But I have to say thank God for social media – my thyroid support group provided me with the information, support and hope that I needed.  I just wish that my endocrinologist had done the same.

@KarenMillen #customerservice #fail (aka not only pharma gets SM wrong)

Those of us that work in digital and social media in the pharmaceutical industry often bemoan the fact that pharma does not get social media and that it could do with learning a thing or two from the FMGC market.  Then again top consumer product brands do not always get it right either!

Generally when people talk about best practice social media it is consumer goods companies that top the league – and understandably so.  After all who really wants to interact with a medicinal product and who feels the same love for a pharma brand than they do for the brand that produces the most divine shoes or chocolate?  Brand loyalty* is faithfulness to a brand and is demonstrated by a commitment to continue using the brand and ideally recommending it to friends.   Social media has changed the dynamics of brand loyalty in that it facilitates communication between the brand and the consumer and in turn the consumer and their friends.  At least this is the theory – my personal experience with consumer goods companies and social media and their ability to communicate took a big dent this week.

I am a massive and very loyal fan of Karen Millen and have been for over ten years.  I am the sort of brand loyal consumer that companies dream of – if I only have budget for one item of clothing it will be from Karen Millen; I rave about Karen Millen both online and offline; I ignore the sales and will buy at full price; I buy from Karen Millen year in year out and I have converted other people into Karen Millen fans.  When I was at business school we were taught to try to nurture and nourish these mega-brand-loyal fans as they are responsible for that marketing gold: word of mouth marketing.  I should add that in pharma we do not even bother dreaming of these types of customers – we will never have them!

Having recently had yet another rather large spending spree at Karen Millen (which also led to much raving about the fabulous customer service at the store and how wonderful Karen Millen is) I was devastated when my adorable new red shoes broke.  They were clearly faulty (I had hardly worn them) but I understood that these things happen and it was obviously just bad luck.  I therefore sent Karen Millen an email explaining the issue – stressing that I was a huge fan and that as I lived in Switzerland I was not in a position to take the shoes back to the store.  I did not expect an immediate response but just to speed things up I posted on the Karen Millen Facebook page – posting a picture of the broken shoes.  I received a response to the post asking me to email the customer service team (although they did not bother to provide the email address – I was expected to find that myself).

Image

One week later – no response to my email.  I therefore re-sent the email and returned to the Facebook page.  It turns out that they had obviously not been happy to have my complaint on the wall as it had been deleted – but now they had also disabled the ability for customers to post photos on the wall.  I therefore posted again – and a I also posted on the customer care tab on the page.  Other people added comments to my post.  Still no response.  I tweeted about the issue.  Still no response.

It is obvious that Karen Millen does not monitor their social media presences that regularly – which anyone working in social media will tell you is a risky thing to do as issues can escalate very quickly on social media.  I remember all the furore when Sanofi responded badly to a similar issue on their Voices page – but that was a pharma company and almost expected.  This is a quality, supposedly well respected clothing company!

Whilst we still may have low expectations when it comes to customer service and social media prowess from pharma companies, it is a very different matter when it comes to our expectations from consumer goods companies.

This incident has made me realise that whilst pharma may be bad at social media at least they have an “excuse” – what is Karen Millen’s excuse?

*Brand loyalty in pharma is called adherence and has got very little to do with love of the brand.

 

Addendum: I eventually got a full refund for the shoes and a very pleasant apology from Karen Millen.  Social Media does pay off!