The “Partnership WITH Patients” (PwP) is a new initiative of my infatigable tweetfriend Regina Holliday in Washington,DC. It just popped up after her unpleasant experience with a webinar for Partnership For Patients (at the kickoff event of which she had participated the previous year, as a speaker and painter), as she well describes it in her post Pecking Order.
It was a webinar at which a few only patients were invited for decorum purposes, (while others were declined participation), as it appeared afterwards. Regina, however, is not the person who would accept to be treated without respect, she spoke up and she immediately thought of creating an online community for Partnership WITH Patients.
“Had anyone even apologized for this meeting involving patients occurring almost 1 year after the kick off session? You might have done that in the first ten minute while you kept me on hold. In a call that is supposed to be a collaboration of patients, you have let us speak all of 15 minutes and I am including my video interview into that amount of time. There are people on this call feeling marginalized and managed, and I know that because I am getting email messages from them right now. You want to know how to engage with us? Grab the domain name Partnership With Patients right now, I just checked it is available.”
With that the dam broke and everyone talked in turn about their very valid concerns. The agenda was overturned and the call ended with open communication.
I gave them 30 minutes but they did not grab the domain name. So I did. Then I started a page on Facebook inviting my wonderful friends who are patient advocates and my wonderful friends who are doctors, techs and nurses, because at the Partnership With Patients everyone is welcome.”
She started on the spot a Facebook page and a website, and she invited her friends and connections to join:
….We ask you to bring your friends. It does not matter if you have been working in this field for years or if you just began to today. We welcome you. We will not exclude because of worries that we may not have enough supplies to share or funding for travel.…..
And this is exactly what I did! I invited my Facebook patient friends, doctors, nurses, policy makers, healthcare reporters, healthcare managers and other to join the Partnership with Patients! And this is what I asked my FB friends to do: to invite their own friends so that we build a global community of Partnership with Patients, as Regina asked everyone: Who will take up their cinderblock and follow me?
..We will work on our Partnership With Patients Campaign, I invite you to join us. We will create a PEN, a Patient Engagement Network, for we are all patients in the end. We all deserve dignity and respect. And a PEN is really good at writing about injustice and then telling the whole world.
The problems that patients face regardless of where they live and their disease are a few common, universal ones: access to quality and safe healthcare, access to medicines and preventive medicine, access to information about therapeutic options, respect and dignity for all patients, access to their medical records, just to name a few… These are what patients in Greece, France, Romania, Italy, U.K., Portugal, Ireland, Bulgaria, USA and in many more countries are concerned about…
Alex Wyke, the founder and Managing Director of Patient View, a woman with empathy and compassion and profound insights into patients and patient organizations, was among the first to accept my invitation to join PwP and yesterday, she wrote a post about the PwP and an article I had posted on the FB page regarding the medicines shortage in Greece.
Referring to the medicines shortage in Greece, it is worth noting that according to recent news it tends to become a global issue (http://bit.ly/NeJl3U). In Europe, it was first confirmed in Greece in May 2011, when Roche and Novo Nordisk stopped deliveries, due to overdue debt from past sales to Greek public hospitals and social insurance funds that the Greek Ministry of Health could not settle. In September 2011, Roche announced it will also stop deliveries to Spain, Italy and Portugal and any other countries that could not settle their purchases.
The medicines shortage is now a key issue in many EU member countries, besides those hit by the economic crisis and Eastern Europe countries face also serious problems with persistent shortage of key cancer drugs. Its importance is shown by the fact that it was a key topic of discussions, during the recent
- ECPC Masterclass 2012 in Rieti Italy, where the cancer medicines shortage surfaced in the discussions that followed almost all panels of the first day and where the medicines shortage in Greece, Eastern Europe, Spain and Portugal made a lively discussion during the breaks and the dinner reception.
- the Off the record media training offered to healthcare reporters by the European School of Oncology and the European Broadcasting Union on the occasion of the EPAAC – European Partnership Against Cancer Open Forum in Rome on June 18-19. It was also a question addressed to Commissioner for Health & Consumer Affairs, John Dalli by BMJ correspondent in Spain, Dr. Aser Garcia Rada, as he reports in his article in BMJ “A generation of cancer patients is being sacrificed” because of drug shortages in Europe, expert says”:
…Asked by the BMJ whether European institutions shouldn’t demand joint action, John Dalli, the European Commissioner for health and consumers, said that healthcare was the responsibility of member states, which would not countenance any interference. He admitted that discussions had taken place with the drug industry.
But Balduzzi *said that “most of them [member states] won’t see it as interference.” He told the BMJ that it was the European Commission’s duty to tackle restrictions in the supply of drugs.
Alojz Peterle, a member of the European parliament and president of the MEPs’ Group Against Cancer, pointed out that cancer treatment across Europe was now inequitable, and he demanded further action.
“Citizens expect much more at the European level,” said Peterle, who is a former cancer patient. “We need a strong will among political decision makers,” he added…
*Italian Minister of Health
In Greece, the drugs shortage is coupled with a shortage in key hospital supplies that make difficult the daily operation of the hospitals, because the hospital suppliers association went on strike in the last trimester of 2011, asking for payment of overdue debt to them by the Ministry of Health (sales to public hospitals). As it were not enough, the medicines trade, i.e. the pharmacists were on strike for many months and did not accept to sell on credit to the insured, as long as the social insurance funds did not settle overdue debts from past sales…
As it comes out, both health industry and trade used the patients to leverage their overdue debt payment from the State. They knew that patients cannot afford not to take their medicines, that every day hospitals are full of patients seeking healthcare services and cannot afford to close due to lack of supplies, and they counted on the political pressure, that the social unrest would trigger, to get paid. Besides, doctors who are not paid Emergency Room service overtime hours, went on strike in the past and also discuss to go again on strike…
This is not to say that health industry, trade and professionals do not rightfully claim to be paid on time, but the issue is not that simple and ethical issues cannot be overlooked, that is that the strongest partners used the weakest link in the healthcare chain, the patients. Patients, however, in their majority are citizens who have prepaid their healthcare through their taxes and their mandatory social insurance charges. The previous governments in the period 2009-2012 have had extensive separate negotiations with every other healthcare stakeholder regarding reforms in pricing, salaries, payments, professional regulations, debts, etc. except the one for which healthcare exists: the patients.
Regina Holliday has wonderfully depicted the situation with painting “The Victim of the Game” on my Jacket and she wrote a powerful story:
…Two people sit at the table playing poker. To the left of the frame a female patient looks down despondently. She has folded. Two hands of cards lay on the table. It appears as if the female patient has twice lost while playing a straight flush of hearts. If you add both hands together you will see ace through ten. This represents the ten minutes the average patient has to spend with a doctor. An hourglass to the figure’s left that has too few grains of sand within and reinforces the frustration felt due to time constraints of a clinical visit. The female figure is too thin and appears tired. She looks longingly at the winning “chips” held by the other player.
The other player is male. He appears to be a corporate figure in a dress shirt and tie. He has won the hand playing a royal straight flush of spades. Here we call a “spade a spade.” This is an ancient expression from Greece, once used pejoratively, now it has come to represent transparent communication. His face is concerned and distressed as he pulls the winner’s pot into his arms. But these chips are not the ones used in any other game. Lids and jars of prescription drugs are scattered on the tabletop. The vital medicines pool before our corporate player as he gathers them up with a bewildered glance.
This is Europe, where universal health care has often been the norm. Greece is currently in a financial crises, and some companies are withholding vital prescriptions until the state pays past due invoices. The people of Greece, stillreeling from the economic crises, now find a health crisis upon their doorstep….
I have worn my #TheWalkingGallery Jacket at the many medical and advocacy conferences I have attended since last September, in Greece and abroad, as a speaker or participant, and told its story to many patients, doctors, pharma executives, reporters…. It was that same jacket that I was wearing at the Engage Health Conference in Brussels last November… Alex Wyke had invited me to speak about Greek Healthcare in the EFSF Era… , the problems inflicted on Greek healthcare and patients by both the economic crisis and inefficient crisis management..
The crusade for health equity-Tessa Richards-BMJ-27 June 2012
Europe’s health systems can survive economic squeeze, conference hears-Tessa Richards-BMJ-26 March 2012)
The future of Healthcare in Europe -Closing the Stakeholder Gap – Engage Health 2011 – White Paper