Uniting around #rarediseaseday

Today is #Rarediseaseday.   This is a day when patients, their carers, HCPs, governments, NGOs and industry unite in raising awareness around rare diseases.  I am presuming that people reading this post know what a rare disease is but if not Eurodis provides information around this.

#Rarediseaseday is in my opinion a very important day.  It is a day that not only unites all the various parties involved in healthcare but also raises awareness around rare diseases and the plight of patients and their carers.  Rare diseases are often devastating and can be all consuming not only for the patient but their friends and families.  Many rare disease patients are children and many rare diseases have no cure or treatment.

The very nature of rare diseases is that they are extremely uncommon and subsequently often very hard to diagnose.  The old adage “When you hear hoofbeats, think of horses not zebras!” means that first diagnosis will generally be for more common diseases and it is only as these start getting ruled out that diagnosis starts moving towards the rare disease spectrum.  When my mother became ill with an autoimmune disease called Churg Strauss syndrome she went through months of ill health and pain, and multiple false diagnosis, before ending up in an ambulance and hospital where it then took 8 consultants to make the diagnosis.  Looking back she had all the text book symptoms but none of her doctors managed to connect the dots and consider it may have been an autoimmune or rare disease.

Shire put together a couple of great infographics around diagnosis issues as part of their rare disease impact report The infographics interestingly show quite a disparity between the UK and the US in terms of diagnosis time but also show commonalities in the emotions that patients and carers go through regardless of location.

[29413] UKPatientInfographic.png_low [29414] USPatientInfographic.png_low

Looking into patient and carer blogs around rare diseases there is often this common theme around time to diagnosis and all the problems associated to this, including things like being dismissed by HCPs for being a hypocondriac or their opinions and input not being taken seriously.  It can be extremely distressing for a patient when a doctor dismisses them and their input, as I personally found out in my journey to my Hashimoto’s diagnosis.  It can also potentially have negative physical results as written about by Michael Weiss, aka @hospitalpatient, in his story around his battle with Chron’s Disease where doctors at the Mayo Clinic refused to listen to his input around his own body.

In both my and Michael’s cases we refused to accept the doctor’s verdict.  We are both empowered and educated patients and we pro-actively sought answers that fitted with our experiences.  At the end of the day no one knows a patients’ body and illness like that patient.  Traditionally the patriarchal nature of medicine meant that patients had very little say in their own healthcare but this has changed today.  Today, in large part thanks to the internet and social media, patients are more empowered than ever to stand up and take control of their own health, and if they are not satisfied with the answers they get to continue looking.  In the case of rare disease patients this can really make the difference between life and death and have a huge impact on quality of life.

What we see today thanks to technology is patients coming together around common health issues, finding a voice where they previously had none, finding power and strength in numbers where previously they stood alone and finding hope where previously none existed.

#Rarediseaseday is part of that movement and helps amplify their voice and raise awareness around their issues.  It is also a testament to their strength and tenacity in not giving up in the face of apparently insurmountable odds. Through #Rarediseaseday we celebrate the incredible courage of patients and their carers, and each and every patient and carer in the world can take inspiration from this amazing group and empower themselves to take control of their own health.

The Power of Social Media

A few weeks ago I presented at the SMI #pharmasocialmedia conference around the power of social media.  Having uploaded my presentation to slideshare and done an interview about the subject I thought it was about time I actually write a blog post about what I spoke about, especially as it is an area that I am extremely passionate about.

So what exactly is the power of social media in healthcare? When I ask people this question I get many different answers, for example big data and access to insights via listening or extended reach of messages.  A few people mention the ability to engage with key stakeholders and build relationships.  These are all valid points but to me the power of social media is why more than this.  To me social media is a channel that can enhance, change and even rescue lives.

SoMe saves lives

I have had a few people look a tad skeptical when I say this but a quick Google search does substantiate my claim that it saves lives.  As to enhancing lives there I can speak about my own experience as a Hashimoto’s patient and how social media and online resources helped me self-diagnose my condition and find out information about my disease (e.g. to go gluten-free) that has had a huge impact on the quality of my life.  I have since met many other autoimmune patients with similar tales to tell.  With Autoimmune diseases you often need to be make lifestyle changes, and accept that fatigue will be part of your life for the rest of your life.  By finding other patients online you can get useful information on how to cope with these facts.

This in turn is what gives social media some of its power – the access to support and information that can support patients but can also speed up diagnosis.  This latter point becomes extremely powerful when you are a patient with a rare or difficult to diagnose disease.  On average a patient with a rare disease has to wait 5 years (in the UK, in the US it is 7 years) before receiving a diagnosis.  This is a huge waste of healthcare resources as that patient gets bounced from doctor to doctor and put on various non-effective medication.  The emotional impact of this should also not be underestimated.  When I received my diagnosis (both the initial thyroid disease and then later the Hashimoto’s diagnosis) it was a huge relief.  My mother had the same thing when she finally received her Churg-straus diagnosis.  It may sounds strange but that’s the reality when you’ve been struggling to find out what is wrong with you.

smi 1In my case diagnosis meant that I could make lifestyle changes but medication wise I am stuck with a generic thyroxine replacement.  Other patients however find themselves no better off post diagnosis as there is no treatment or treatment is too expensive.  Here again social media can have a real impact.  Patients can use social media to raise awareness and funding to help pay for treatment but also to fund trials.  There are some lovely examples of patients, or parents of patients, grouping together with other families and friends to identify trial opportunities, researchers prepared to help and funds to pay for this help.  This is a domain that traditionally sits with the pharma industry but this does not hold patients back and has resulted in some pharma, such as Janssen, re-assessing research opportunities based on this patient push.  Patients have also played a role in lobbying governments to reverse reimbursement and approval decisions, for example MS patients last year who lobbied the FDA to reverse their decision not to approve Lemtrada – the FDA in the end agreed and approved the product.

For healthcare professionals social media can also have a great impact.  Take a doctor who has just had a patient walk in for the umpteenth time with undiagnosed symptoms – they may have an idea of what it could be but need to validate this with a colleague or expert.  They can turn to social media, for example through a network like doctors.net, to ask for advice from other physicians.  This again can help speed up diagnosis.  Doctors also often complain of not having enough time to explain disease aspects clearly to patients.  Again social media can help but providing doctors with an online resource to direct patients too, for example a relevant patient association or Facebook group.

All of the above is also beneficial to pharma.   Social media provides pharma a great way to gather insights around patients needs and diagnosis roadblocks, as well as build relationships and help relevant stakeholders network to deliver solutions.  Whilst pharma will never own this channel, or its discussions, they can support it and help drive some of that power to deliver life changing results to patients. At the end of the day we are all here to help improve and save patients lives so anything that does this should be welcomed, even if it is in the guise of a “scary” channel like social media.  And let us not forget that patients are already engaging and taking control of their health – they expect the other stakeholders in their healthcare to do the same.

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Two conferences, similar key points

As anyone who follows me on Twitter may have noticed I was extremely active these last few days tweeting from the SMI #pharmasocialmedia and the Digital #pharmaconf conferences.

Jaclyn with the famous Hawaiian shirt

I had the pleasure of chairing day one and presenting at the SMI conference, as well as organising drinks for fabulous Jaclyn Fonteyne and @phamaguy to celebrate @Boehringer’s win of this year’s social media Hawaiian shirt. It was a smaller event but I found this also meant there was a higher level of discussion and interaction, including over drinks of course!  @lionelreichardt put together a great storify of the event which is worth having a look. The Digital Pharma conference on the other hand had a slightly broader perspective and a larger number of participants.  Both were extremely interesting and covered a range of topics but similar themes came through from both.

Co-creation

1. Co-creation 

This for me looks to be this year’s buzzword.  It came up multiple times at both conferences.  Co-creation is the concept of partnering with your stakeholders, be they physicians, patients or medical students, in order to jointly produce a mutually valued outcome.  Doing this ensures that the offering resonates with your stakeholders by meeting their needs and offering them value, because it is based on input from them.  The other aspect of co-creation is that it creates greater buy-in from stakeholders because they are part of the creation and development process. There were some great examples presented on this including a case study presented by Jenny Cowderoy, where she explained the how Doctors.net.uk partnered with medical students to brainstorm and help with the development of their offering for medical students.  The end result was some very innovative ideas but also a group of 20 highly engaged medical students who volunteered to help build and promote the service.  Another, very touching, example of this came from Birgit Bauer, a MS patient and journalist, who now blogs for Novartis’s Living Like You. She made the fantastic point that patients are experts in their own disease, they use the same language as other patients, and tell an authentic story.  They also tend to already be networked and have established presences online.  From pharma’s perspective they offer a relatively straightforward way to bring in the doctor or patient POV and help build trust, engagement and extend the reach of content.  Indeed Sinem Erenturk presented a great pharma case study around the success of an HCP community built by Boehringer than was co-created with doctors and which uses content from doctors and has been a huge success.

Picture1Picture2Picture4 Picture32. Customer Centricity

The above points are actually part of the broader push to be more customer centric but I have placed this point second and this has been a buzzword for some time.  Most big pharma now talk about being patient centric and some think that they are already customer centric around their physicians.  Of course many do not consider patients as customers and there is a whole debate to be had around this.  The reality though is that pharma is still brand driven, not customer driven.  There were some fantastic presentations around the importance of customer centricity, and the need for organisational and behavioural change in pharma to start being customer driven.  MSD’s Thibaud Guymard presented a fantastic example of customer centricity, and the success that this approach can bring.  Last year Thibaud presented at SMI around the launch of Univadis’ Comuniti, a physician community in France.  Comuniti was developed based on insights from doctors and their needs, and was co-created with doctors (that buzz word again).  The result has been very impressive, especially in a country where doctors are less active on social media – since launch last year Comuniti now has nearly 44,000 users.

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GSK’s Kai Gait made some fantastic points about the importance of being customer centric but also flagging that much of what we talk about is just good marketing.  This resonated with me and I remember when I did my masters in Marketing many, many years ago we talked about the importance of understanding your customers and building your marketing based on their needs.  This is basic marketing and yet in pharma we talk about this sometimes as if it is a new thing!

Picture8Picture7Another great example of customer centricity was presented by Christian Kranich from Abbvie.  I have to admit that this was probably one of my favourite presentations from both events thanks not only to the great points and examples Christian talked about but also due to his wonderful humour and humanity in presenting.  He started his presentation by introducing himself as a gay HIV patient and activist, who used to see pharma as the enemy but now works for Abbvie as a patient relations manager.  This was so refreshing to see a pharma employee speaking so openly, and with such wonderful humour, about their disease. By hiring a patient, like Christian, Abbvie has demonstrated how serious they are about being patient centric – I just wish more pharma followed this lead.

Picture9Picture113. Measurement and data

This was another topic that cropped up multiple times, but again as Kai Gait flagged, is part of basic marketing and it still amazes me how badly this is sometimes done.  There was much discussion, and muttering, around the need to demonstrate ROI, with quite a few people pointing out the importance of being able to demonstrate value to senior management – and in order to do this you need to be clear around what you will measure, how you will measure but also how you will then report back on those measurements. Boehringer made a good point too though around understanding what you are measuring and that often ROI is not the appropriate thing to measure, but rather ROE (Return On Engagement).  Indeed from a compliance point of view trying to link ROI with a public channel like Twitter can get you into some deep water. Picture12 Boehringer was very clear around what their goals were for their tweet chats and also what the measures of success would be.  I particularly liked their inclusion of not only the impact on Boehringer but also on the KOL they worked with for tweet chats – again another demonstration of customer centricity.  And of course measuring today is so much easier as a result of technology and the access to big data, although Sinem Erenturk made a great point that it is not the big data that is important but rather the insights you get from that data.

Picture134. It’s still all about cats (and content)

Perhaps my final take-away is that at the end of the day social media is still all about cats!  Actually this relates to GE Healthcare’s Dimithri Wignarajah who had a fantastic presentation which to my delight was very cat image heavy.  The point being though that content is still king in the digital world and therefore focusing on content that provides value to customers and is engaging is extremely important. If that content with cats in is what is going to have the most impact then use cats.   Picture16

In GE’s case it is actually  less about cats and more about using visual content as part of a strategic move to become a more visual content. GE has approached what many would think of as boring content, machines, in an innovative way and turned their content into visually engaging content.

Another very interesting point was made by Gedeon Richter’s Haidler Alleg about the balance of content versus technology. He gave the example that previously their focus was 80% on technology and 20% on content, a balance that sounds very familiar to me, and he has turned that around to have an 80% focus on content and 20% focus on technology.  To me this is spot on as technology is an enabler but it is content that drives impact and engagement.  This flags up another relevant point that actually it is not which channel you use but how you use it.  The key thing is to deliver the right content to the right customer via the right channel and at the right time.  If you get the channel right but the content wrong then you have wasted you budget.

There were many other great points and presentations at both conferences but these four points stuck out as they were the ones that were mentioned repeatedly at both conferences – and I believe all four are very important.    I hope next year though that some of these points will no longer be discussed – it is high time we understand that in today’s world being brand centric no longer works and that you need to start using the data at your disposal.

Of course I think it will always be fine to talk about cats …  after all social media is and I am sure will always be all about cats!  On that note I leave you with a photo of my own cat :)

My cat The Don

My cat The Don

Heart monitoring … a patient’s experience

I popped back to Suffolk, in the UK, this weekend to visit my parents.  I was very interested to hear that my mother would be wearing a device to monitor her heart for 24 hours.  This is part of a barrage of tests to check her health and try to help diagnose various ailments she has. Many years ago she was diagnosed with Churg-Strauss syndrome so she is no stranger to being bombarded by tests to diagnose a hard to diagnose disease.

What interested me in this device, besides how it would help my mother, was to see how the NHS was making use of monitoring devices and technology.  Now I am a huge fan of the NHS, but I am aware that this massive organisation has struggled to join the digital world.  How would they go about monitoring a patient remotely I wondered.

I should probably not have been surprised at what I discovered as I found out about my mother’s heart monitor.  Now while some devices have taken the crazy concept of user experience and usability on board – others clearly have not.  This was the case with my mother’s monitor.  What she had was a device about 2/3 the size of an iPhone attached to her chest with a very long cable and monitors stuck to her chest.  That was it.  She was left to her own devices as to where she would carry that device.  The obvious place of course is a shirt pocket.  What % of ladies wear (including night wear) do you suppose has a pocket in the chest area?  My mother was fortunate as she had appropriate clothing – I would be less fortunate as I believe the only thing I could wear would be a borrowed shirt (and being single I could not turn to my boyfriend’s wardrobe for support) or inside my bra (no comment on that).  Minor issue.

Apparently at night the cable is long enough so that you can place the device under your pillow without the need for a pocket – easy!  Oh except there is also a reasonable chance that if you have health issues you are not sleeping well and will toss and turn and consequently get totally entangled in the cable, increasing your night time stress levels. Minor issue.

After her twenty four hours were up the doctor had informed her to take the battery out.  Again – easy!  Right?  Sadly not. My mother tried to do as her doctor had showed her, removing the battery with a card.  She had no luck, neither did my aged father, so as always in matters technology she turned to the younger generation – me.  I am no technophobe nor am I a total idiot but for the life of me I could not work out how to remove the said battery.  By this time my mother was in some distress as she had been specifically told to remove the battery after her 24 hours and was concerned that by not doing so she would invalidate the whole experience and have to re-do it (I will not repeat her thoughts on that!).  But hey ho – minor issue!

At the table I had also noticed her jotting things done on a piece of paper.  Was this a shopping list?  Perhaps a to do list?  No – it was of course her hourly diary taking to document her actions during the 24 hours.  A piece of paper.  Fabulous.  What a wonderfully efficient tool this was – she would have to write it all up, remember to take it with her to the doctors, where they doctors would then need to type it all up and also store the said piece of paper.  What a total waste of NHS resources … but minor issue right?

What struck me about all these “minor issues” is the waste of time, resources and total lack of patient centricity in the whole process.  Why could the device maker not simply provide a device that came with a practical way of carrying it around for 24 hours?  Why was it not linked to an app which the patient would also use as a diary with all the results being sent to the doctor, at the end (or indeed during) the 24 hours?  With today’s technology this is not a crazy suggestion.

Of course the big issue here is budget.  The NHS does not have the budget to upgrade the devices they purchased (I hope) some time ago or to develop the accompanying app diary for this device.  I would see this as being a great value add from the part of the device manufacturer but they probably have no motivation for this, or indeed totally lack the creative, user-centric thinking this would require.

The other issue that this raises is of course security and IT systems.  Ensuring the app is secure enough to comply with regulatory requirements and that it interacts with the NHS systems is of course another whole boardgame.  Paper is still considered far more secure (I would sometimes question this – but that is something for another discussion).

Surely though as the NHS looks for cost cutting and efficiency measures examples like this should raise a flag.  How many other patients, for other conditions or with other monitors, are having to document a daily diary?  Why not develop a single NHS app for this which could be used across multiple situations?  Surely the sheer reduction in excess paper work and saving in time would make it a more than viable investment? Indeed perhaps this app already exists – in which case the question is why is it not being used?  I could go on and on along this line of thinking (and please feel free to continue this and answer these questions in the comments) but for now I have said my piece.

I have flagged a single example of a procedure not making use of technology, not being patient-centric and generating unnecessary costs for the NHS.  As far as my mother is concerned though she has done her bit, has vented and muttered about this, and has now returned to her normal life, without having to fret about long cables, pockets or how to remove ****** batteries.

When Tripadvisor gets it all wrong

I have been using Tripadvisor for years to research holiday destinations, hotels and restaurants.  I will often start by using a tool such as Lastminute or Booking.com to find a holiday or hotel and then I will check the options using TripAdvisor.  When checking I tend to only look at recent reviews as I know from experience how much hotels and restaurants can change with time.  If a location gets a bad review I will move on to find a different location.  If my searched location gets great reviews then I tend to book.

This was the same process I went through recently to book my trip to the Maldives.  I had used Lastminute.ch to identify potential holiday destinations, and then having narrowed it down to the Maldives (where I had had a fantastic holiday back in 2007) I then went to TripAdvisor to select the resort to go to.  The island I opted for was called Biyadhoo and it was touted as being a simple and basic resort on an island with a fantastic house reef.  Reviews commented on how great the snorkeling and diving was and what a lovely island it was.  A few also posted photos of the resident cats.  It was this combination of a great reef as well as resident cats that swung it for me and I booked myself a week’s holiday on Biyadhoo.

At first glance the island looked like paradise, as so many tropical islands do.  The rooms were not as basic as I had expected and things looked promising so as soon as I had changed I went for my first snorkel.  And this is where it all started going down hill.  The supposed amazing house reef appeared to be mainly dead.  I though perhaps it was just the area I had gone in, close to the pontoon, that was damaged.  I decided to call a night and went to dinner.  Sadly I was met with more disappointment.  In the restaurant we were to be allocated with a table and that was were we would have to stay for the entire week.  The food itself was okay – nothing amazing and as I found out based around a limited selection of recipes.  The curry’s were always good, but after one week I had my fill of fish curry.

The following day I rose bright and early to go for a dive around the house reef.  Again I had high hopes but again my hopes were dashed.  The dive was extremely disappointing, with strong currents and dominated by brown, dull and dead coral.  The fish selection was mediocre and equally disappointing.   For the afternoon I opted not to dive again but try snorkeling on the other side of the island.  This was the supposed house reef that people had raved about on Tripadvisor.  All I can say is that these people had obviously never seen a decent coral reef.  Bar the odd “normal” outcrop most of the reef was again dull and dead.  This holiday was turning into a huge disappointment – one week on a small island with overwhelmingly dead coral and as it turned out on-off weather was not what I had hoped for.

Blue

Blue

Things however were soon to get so very much worse.  My first days I was overjoyed by the island cats, in particular an adorable “blue” kitten (who I called Blue) who was terribly sweet, adorable and cuddly.  Then after my 2nd dive (this time a good wreck dive) I saw two men carrying a box of screaming kittens.  Myself and the other divers stopped them and to our horror we saw in the box new born kittens that were still so young their eyes were not even open.  Despite our emotional and vehement objections that these kittens should be returned to their mother or they would die the men took the kittens off on their speed boat.  I was absolutely distraught.  I went straight to the hotel manager to complain.  He promptly told me they would be fine and would be put on an island.  If we were concerned they would also catch the mother and take her there too!  When I continued to complain he told me he did not care at all about the cats and only cared about the happiness of the guests.  My happiness, as a guest, would it appear not be relevant however.

Blue's sibling with a horrific wound inflicted by hotel staff

Blue’s sibling with a horrific wound inflicted by hotel staff

I demanded to speak to the manager, and threatened to go public on social media with this heartbreaking story.  On digging deeper I found out that this was standard practice and had happened the year before and was happening again at the time moment – due to the cats not being neutered there were too many so they would catch them and dump them, to essentially die, on another island.  Now I also understood how Blue’s little sibbling had the most horrific, raw and bleeding neck wound.  Someone had clearly tried to catch the poor little soul with a wire trap (or possibly just tried to strangle it) and the result was a raw, open wound on this kittens neck.  I was no longer able to sleep worrying about the fat of little Blue, no more than a few months old, and her injured sibling.

Blue and her Sibling

Blue and her Sibling

The next day I got to speak the the CEO via telephone.  I had a long discussion with him, during which he assured me he himself was a cat lover and had cats himself, and during which we discussed the options.  Option one was that I would go public with the animal abuse that was happening or alternatively I would fund for a vet to come over in February to neuter the cats (there is not one single vet on the Maldives due to the government not allowing them to import veterinary products).  To me this seemed like a simple choise – make money or lose money or do the right thing or do the wrong thing.  He had said that the action was a result of a few  people complaining – but how many people were happy with the cats but never said a word?  I know I was not the only one who had selected the resort because of the cat pictures.  To me this seemed like a potential business opportunity in itself.  With dying coral why not optimise another resource -cats?  I for one would pay extra to stay at a hotel with animals.

The rest of my stay remained a disappointment, the snorkeling did not improve, the weather got worse (afternoons with nothing but torrential rain) and more distressing examples of animal cruelty, including one cat, with an injured front paw, whose back paw was deliberately snapped broken.  This was witnessed by other tourists, who like most I spoke to, where appalled at the dreadful treatment of the cats.  Again I complained and was assured this would be looked into.  I also informed the resort that I would be adopting Blue, and possibly her sibling, and would get the vet I was going to send to bring her to Europe.

More kittens - now dead

More kittens – now dead

I was very happy to leave Biyadhoo island behind.  The Tripadvisor reviews had been so very far from the truth that what was meant to be a relaxing weekend of snorkeling and relaxing turned into a dull, distressing and horrible experience that I was desperate to see end.

Happy as I was to get home I was then absolutely shocked and appalled to then hear from a tourist still on the island that the order had been given by the management to clear all the remaining cats from the island and that little Blue, who I was going to adopt, had been one of the first to go. I was, and still am, absolutely devastated that this little life was needlessly snuffed out, by a management so intent on making a profit and disregarding customer complaints that they did not want to hear.  They were only interested in the few that complained about the cats that they where they intent on ignoring the multiple complaints they received from guests about how the cats were being handled.  They clearly also presumed once I, and the other guests, were gone that that would be the last they would hear of this.

Blue's sibling - a beautiful little kitten

Blue’s sibling – a beautiful little kitten

My message to the management of Biyadhoo is shame on you and how wrong you are.  In today’s world it is a very high risk strategy to ignore a guest, who works in social media, and dismiss they complaints as worthless.  In today’s world full of animal lovers, who are very active on social media, it is a foolish thing to publicly be seen to be killing of cats that had a positive future.  As to the future of the island – I can only see it getting worse.  Now with the cats all gone the rat population (which was an issue in the past) will explode again.  According to the management this is simple to resolve with poison.  Will that get a mention on TripAdvisor I wonder?  Will families with children want to visit an island riddled with rat poison?  Will people really want to continue visiting an island that how coral and fish being killed off even more due to poison leaching into the water?  I know I would not want to.  Whereas TripAdvisor let me down this time I hope for the sake of other travellers that it does not let them down in future around what Biyadhoo Island Resort is really like.

UPDATE:  Blue has been found alive but not looking happy and is losing weight & the island she is on has now been closed and with the dry season she will have limited access to water.  This has now turned the importance of this post from a focus on boycotting #Biyadhoo island to rescuing Blue – or #RescueBlue – and is now URGENT!  I don’t know how many days Blue has left.  Please contact Ministry of Tourism & Ministry of Health in the Maldives to ask them to step in and help, share on Facebook, Twitter, Google+, Linkedin etc.  PLEASE HELP SAVE BLUE!

Blue.  RIP. Run free little soul.

Blue. Can we save her?

A bundle of joy that I had hoped to save

A bundle of joy that I had hoped to save

Saving dogs has Klout

A happy Tarzan in his rescue kennels in the UK

A happy Tarzan in his rescue kennels in the UK

As you will have seen my last few blogs were about a rescue mission to save 60 dogs in Romanian who were losing their shelter and faced death on the streets as a result.  I have been working flat out on this on Facebook and consequently have had not time for blogging and very little time for Twitter.  The whole rescue action was run and organised through a Facebook group “Help Save Anca Florea’s Dogs After Shelter Destroyed”. I was on there daily, doing some posting and sharing but mainly working in the background through PMs helping organise the rescue.

The first amazing success was that we actually managed in a month to save all 60 dogs and all but 6 are now safe in the UK or Germany (the final 6 are due to come to the UK in a few weeks).  Through Facebook we found homes and funds to rescue these dogs (around £200-£250 per dog).  I never in my wildest dreams thought we would do it and I am so incredibly proud to have played a part in this amazing rescue mission.

The second amazing thing though is the impact it has had on my Klout.  I had started to get close to dropping below 60 and had been working hard at Tweeting and Facebooking daily to try to keep my score up.  It was tough work and I barely scrapped over 61.  Now I have a Klout score over 64.  Wow – Klout clearly approves of my dog rescuing work!

It does raise an interesting point about Klout for me. Hard as I had tried to be relevant with my posts around my area of specialisation (pharma and digital / social media) through Twitter it turns out that the real klout is to be had with the animal lovers on Facebook.   Clearly by being uber active on Facebook with this group I have had far more impact online than in pharma.  I am happy with this though as this actually reflects the offline impact.  Much as I would like to have an impact in the pharma social media offline world (e.g. get more consulting projects) it really does not compare to the impact of saving 60 dogs lives. There is something incredibly humbling and at the same time incredibly empowering about saving this many innocent lives.  It puts the rest of what I do in perspective.  It was far harder work than trying to up my Klout score but so very much more worthwhile.

Little Dodo happy in his new foster home

Little Dodo happy in his new foster home

3 legged Matteo now in a rescue kennel safe

3 legged Matteo now in a rescue kennel safe

Can social media cause a miracle?

Last week I wrote about the hopeless task I faced in trying to find homes for 60 Romanian rescue dogs who were about to lose their shelter.  I truly did not think we could save them.  I certainly did not think we would be able to find places for the very traumatised ones – who would want to give a traumatised dog a 2nd chance?  I thought perhaps we could find a few homes for the sweeter gentle ones.  I hoped that through social media we could find those few places and maybe raise enough funds to rescue these poor dogs.

Then the ball started rolling.  A few more people joined the group and offered help.  All of a sudden we had an offer for 15 places in a shelter in the UK!!  My heart stopped – could this really be happening?  This would be truly amazing!  Sadly hurt ego’s resulted in this offer being withdrawn – we were gutted.  But we got back to looking.  Slowly more offers poured in.  A couple of dogs were offered a place with one shelter and couple more were offered a place with a foster and a few lucky ones got offered forever homes.  Now just over one week later we have found places for 32 dogs!  I would never in my wildest dreams have thought this possible.  I am totally utterly humbled by the out-pouring of offers of help.  Thanks to the power of social media we have managed to pull of a near miracle.  Thanks to people all over the world pulling together, sharing these dogs photos, posting on their walls, tweeting and ringing around we have managed to save the lives of 32 dogs in less than 10 days.

However in order to make this a total miracle we need to find homes for another  15 dogs and we need to somehow raise funds to cover the cost of transport.  The cost per dog is €120 prep fee and then around £150 for the transport.  A few dogs have been sponsored or their adopter are paying but for all the rest we have to pay.  That is a very large some of money.  So again I am hoping that social media can truly bring about this miracle.  If by sharing and posting we can find 40 people to sponsor one dog or 80 to sponsor half a dog and if by sharing we could find 15 people who could home one of these dogs than we will truly bring about a miracle.  So I ask each and everyone of you to share this post.  Donate if you can and let me know if you can help any of these dogs in anyway.

You can donate via Youcaring here or via paypal to me: pharmaguapa@hotmail.com (and if you are donating for a specific dog please let me know.

 

Dogs that still need homes are listed below.  Please share for them!

 

Basil - a lovely waggy-tailed chap who also has impaired vision due to illness

Basil – a lovely waggy-tailed chap who also has impaired vision due to illness

Greta - a very sweet lady with impaired vision due to an illness.

Greta – a very sweet lady with impaired vision due to an illness.

Tantalic - an old boy, scared but with a heart of gold

Tantalic – an old boy, scared but with a heart of gold

Rex is a great chap - he is scared of men and strangers but find with the ladies

Rex is a great chap – he is scared of men and strangers but find with the ladies

Max - another great chap with a gorgeous smile.  He is wary of strange male dogs but otherwise a chiroy little chap.  He is around 2 years old

Max – another great chap with a gorgeous smile. He is wary of strange male dogs but otherwise a chiroy little chap. He is around 2 years old

sweet LUPITA, 4 years old female, she was crying when we found her . She is dominant with some dogs over food. Friendly and loving to people, she barks at strangers as has a protective instinct. 18 kg 47 cm high castrated

sweet LUPITA, 4 years old female, she was crying when we found her . She is dominant with some dogs over food. Friendly and loving to people, she barks at strangers as has a protective instinct. 18 kg 47 cm high castrated

Lea - dog on the left - very sweet 3 year old castrated lady. Lovely and not aggressive.

Lea – dog on the left – very sweet 3 year old castrated lady. Lovely and not aggressive.

Indy - a gentle giant.  Indy is a large lady around 3 years old with a lovely character - a total sweety

Indy – a gentle giant. Indy is a large lady around 3 years old with a lovely character – a total sweety

Griutu 1, a scared 5 year year old boy. Let's show him there's is more to life that Romania and find him a place to grow old free from fear. He deserves a home.

Griutu 1, a scared 5 year year old boy. Let’s show him there’s is more to life that Romania and find him a place to grow old free from fear. He deserves a home.

Griutu 2. An old, quiet boy who will not survive on the streets - we need to find him an urgent retirement home - old dogs deserve a chance too and certainly do not deserve to die in pain on the streets. Help us find him a home

Griutu 2. An old, quiet boy who will not survive on the streets – we need to find him an urgent retirement home – old dogs deserve a chance too and certainly do not deserve to die in pain on the streets. Help us find him a home

BRIANNA, a beautiful dingo-like lady, sterilized, around 2-3 yearsold. Sometimes she has big mouth on her but she is a total softy, not aggressive with humans at all. This adorable girl needs a home urgently

BRIANNA, a beautiful dingo-like lady, sterilized, around 2-3 yearsold. Sometimes she has big mouth on her but she is a total softy, not aggressive with humans at all. This adorable girl needs a home urgently

This chap has gone through so much - can we prevent him going through more pain?

This chap has gone through so much – can we prevent him going through more pain?

A happy waggy tailed dog soon to die miserably on the streets if we do not help

A happy waggy tailed dog soon to die miserably on the streets if we do not help

Griutu - an older chap who is a little scared but with some TLC will make a wonderful addition to a family

Griutu – an older chap who is a little scared but with some TLC will make a wonderful addition to a family

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

A desperate cry for help

I generally rave about how wonderful social media is but sometimes it can also be devastating.  Yesterday I found out that 60 Romanian rescues will be essentially sent to their death on the 17th October.  I have been following the care of these dogs on Facebook and have been helping try to find them homes.  Their time is now up and they will die.  I feel helpless, powerless and utterly distraught.

As you may know I am very active and passionate in trying to save dogs in Romania through my charity Hope for Romanian Strays.  My passion is driven by the sheer horror of how the thousands of stray animals are treated, with dogs often beaten to death, maimed by other dogs, poisoned and so on.  Whilst the shelter we support is one of the better ones, others are rightly nicknamed “death shelters” – dogs are routinely starved or beaten to death, succumb to disease or are killed by other dogs and the survivors are traumatised and live in poor desperate misery with minimal shelter or food.

All of this horror was unknown to me before I got active on social media.  I would perhaps have read the add newspaper article or seen a TV programme, but for the whole I was not exposed to some of the most extreme and brutal animal cruelty in the world. Now I see it on a very regular basis.  Needless to say it is always distressing and fuels my passion to help. Despite not wanting another cat I ended up rescuing a second one.  Despite needing to save money I donate a large part of salary every month. And despite being overwhelmed with the huge need of my own charity I still also support a few individual women who rescue dogs despite their own meager resources.

Puppies - who will soon certain death on the streets

Puppies – who will soon certain death on the streets

It was therefore absolutely devastating to hear this week that one of these rescuers, Anca Florea, was about to have all her dogs evicted.  A few months ago Anca’s private shelter was raised to the ground – it was a ramshackle enclosure but she provided food and shelter to some very needy dogs.  A group of us got together and started funding private foster places for Anca and trying to find homes.  Anca then fell very ill and was hospitalised. Without her constant reminders over Facebook people started to forget about the dogs.  The funds for the foster places have all but dried up.  Anca took many of the dogs into her own home despite her ill health.  Despite having to pay for her healthcare she still somehow managed to feed the dogs – albeit very very little.

This dog has already known the misery of the streets & soon will go back to that misery

This dog has already known the misery of the streets & soon will go back to that misery

Now the 60 dogs are to be evicted.  She has the option of letting the dogcatchers come – cruel men paid per dog they catch regardless of how (resulting in many dead and injured dogs).  They will take her rescued dogs, who have now known love and warmth, to a death shelter where the old and infirm dogs and puppies will definitely die relatively quickly but miserably.  A few of the younger strong ones might last  a year or so if they are “lucky” before succumbing to starvation and disease.  To Anca this is not an option.  When the day comes she will take them to a field and give them a fighting chance on the streets.  Sadly the old and infirm and the puppies will almost certainly die.  The younger ones, if they are not caught, will have a better chance.  The reality is though that on the 17th 60 dogs that were safe will have their death sentences signed.  They will face a winter of misery, pain, starvation, disease and eventually a horrible death.

A happy dog soon to be in danger on the streets

A happy dog soon to be in danger on the streets

And now I feel helpless, powerless and utterly distraught.  The mighty social media that has helped me so much with my health, brought so much benefit into my life now fails me.  It opens my eyes to a horrific reality for some wonderful, happy dogs that are loved.  I have shared their photos.  I have begged for help via Facebook.  I have asked people to retweet, repin, repost their photos.  I have reached out to everyone I know asking if they know anyone who could help save just even 1 dog.  I have failed.  Social media has failed me.  I have no idea what more I can do.  All I can say is I will continue to post, to beg and to pray with every inch of my being that a miracle happens and some place can be found for these poor poor dogs.  I will continue to beg you to share their posts, to share their photos in the hope that if everyone shares these photos someone out there will see them and decide to help.  That through sharing we can save these lives.  That you will help me save 60 dogs in desperate need through sharing this and that in doing so will restore my faith in social media to do good.  Will you do that for me and for them?

 

UPDATE:  A fundraiser has been started to raise funds for transport to foster places. Please donate if you can.  http://www.youcaring.com/pet-expenses/help-save-anca-s-dogs/246573

This puppy won't survive alone on the streets - will you help her?

This puppy won’t survive alone on the streets – will you help her?

A lab-mix who I'm sure could find a home if we tried

A lab-mix who I’m sure could find a home if we tried

Tibi - an old dog that will not survive on the streets

Tibi – an old dog that will not survive on the streets

anca-oct3

A little terrier - small dogs have a worse chance on the streets

A little terrier – small dogs have a worse chance on the streets

A happy waggy tailed dog soon to die miserably on the streets if we do not help

A happy waggy tailed dog soon to die miserably on the streets if we do not help

Ursulica - a lovely lady who wants to have a home of her own

Ursulica – a lovely lady who wants to have a home of her own

 

 

This chap has gone through so much - can we prevent him going through more pain?

This chap has gone through so much – can we prevent him going through more pain?

Already traumatised from abuse on the streets soon to go back to her worst nightmare

Already traumatised from abuse on the streets soon to go back to her worst nightmare

One of Anca's early rescues - has not been on the streets for years - she won't know  how to survive

One of Anca’s early rescues – has not been on the streets for years – she won’t know how to survive

Safe off the streets today but next week in danger again

Safe off the streets today but next week in danger again

Another small dog who will be in more danger on the streets

Another small dog who will be in more danger on the streets

A look of hope - please make that hope come true and help us

A look of hope – please make that hope come true and help us

The evolution of medicine

The other day I listened to a really interesting presentation by Tom Blue, Chief Strategy Officer, American Association of Private Physicians, on the evolution of medicine. He made some fantastic points about how medicine, and the industry surrounding it, has changed over the years. It started with our battle against infectious disease, and the magic bullet approach (which became the blockbusters of yester year), and then evolved into specialisation and compartmentalisation around the different organs. Today we face a new era as our medical understanding has increased and where we understand that a heart ache may not just be related to heart but may be an indication of an overall systemic wide disease. Whereas we have built up an industry based on organ specialisation in fact it is that the GP is closer to the reality – a broad view across organs.

For me this totally resonates and makes total sense. Having been to specialists who focused totally on the organ (in my case the thyroid) it was my own research that led to pinpoint what the actual, systemic cause of my thyroid problems were. Admittedly it probably did not help that my Spanish endocrinologist was a heart-less, disinterested and unprofessional medic but had she had a broader vision she could have told me that in fact the problem with my health lay not in my thyroid but in my immune system.

The industry’s focus on organ speciality has not always had a positive impact on systemic disease like autoimmune disorders. When my mother came down with Churg-Strauss syndrome it took nine specialists to diagnose her as each was focused on their own speciality organ rather than her system as a whole – my GP brother actually diagnosed her sooner over the phone because he had a broader perspective.

When you look at all the specialists we have we do have some broader specialities like oncologist but there are few immunologists focused on auto-immune disorders. Pharma companies also need to move their focus from finding products to treat symptoms to looking for products to tackle the diseases. Cures would be fantastic but in the meantime products that reduce the effects of auto-immune responses (rather that treat the organ being attacked) are greatly needed.

However the healthcare industry is a very conservative industry focused on heavily entrenched ways of doing things – from the medical side as well as the industry side. Just seeing the slow battle of trying to introduce new technology and ways of interacting with patients it would be fair to guess that the change needed in how medicine is practiced and how products are developed will take even longer.

So perhaps rather than grumble at the various pharma websites that provide no interactivity or value I should applaud them for at least having made an effort. The next steps needed for modernisation will be far scarier and will require a huge industry wide shake-up. But who knows – perhaps the big leap required for digital and social media will help shake some of those traditional foundations enough to drive change?

 

Medicine of old

Medicine of old

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