“A searing pain like a red-hot poker piercing through your eye that prevents you from remaining still or from lying quietly in a darkened room” – this is how patients describe Cluster Headaches.

Affecting up to 4 in 1,000 people, the prevalence of cluster headaches is similar to the incidence of Multiple Sclerosis and Parkinson’s Disease. Despite this, it is still under-recognized and under-treated. In an effort to raise awareness on this chronic illness among policy-makers, the European Headache Alliance and the European Headache Federation organised a meeting in the European Parliament on 21^st March 2017. The date was not a calendar coincidence: the number of attacks peaks at the equinox.

Unlike migraine which is more prevalent in women, cluster headache mainly affects men. The word “cluster” refers to a period of time lasting weeks or months.

“The worst thing is that you are not taken seriously”, said Miguel Angel Pascual, cluster headache patient and delegate from AEPAC Spain. “People tell you things such as ‘just have an aspirin’, so after a while you understand it is useless to keep explaining your situation. I have lost 5 jobs because of cluster headaches”.

“Beyond the need to raise awareness, we need to promote the connection between cluster headaches and disability”, said MEP Helga Stevens (ECR, Belgium). “We also need to see how we can overcome the barriers this condition represents to employment, by promoting flexible working arrangements, for instance”.

The claims put forward by patients with cluster headaches are reminiscent of that made by the European Patients’ Forum within the framework of its Access campaign. “There are not enough new drugs for Cluster headaches patients”, deplored Pr. Paolo Matelletti. Moreover, according to the European Headache Alliance survey on access to treatments performed recently, when they are available, these medicines might not be reimbursed, depending on the country of treatment.

Encouraging availability and affordability of healthcare products and services is one of the five major areas of the EPF Access campaign. “Action is needed both at European and Member state levels, where a lot of the levers for change are”, concluded Audrey Craven from the European Headache Alliance.

For more details, please visit:

• europeanheadachealliance.org
• ehf-org.org/last-news/

Contact details:

Elena Ruiz de la Torre, European Headache Alliance President

Email: elena@europeanheadachealliance.org   Tel:  + 34 639 66 99 65

More than 3.5 million people need medical oxygen in Europe and many are advised to travel to regions with temperate climates that will ease the symptoms of their disease. However the free movement of people around the EU Member States might turn into a nightmare for severe respiratory patients. The European Federation of Allergies and Airways Diseases Patients Associations (EFA) has documented that air travelling with oxygen is in many cases unaffordable and too complicated for individual patients to even consider.

It all started with a quite striking experience from one of our patients. Invited to an EFA workshop, a chronic obstructive pulmonary disease (COPD) patient under oxygen therapy reported to us the difficulties she faced to get in to Brussels. Her testimonies of a steward asking her to turn off her oxygen concentrator during take-off and landing and to book a separate in-bound ticket for the machine led us to wonder if other patients were facing the same ignorance and abuse when moving around Europe on a plane. We realised soon it was the case so we started a project to enable air travel with oxygen therapy.

We analysed the current air travel legislation. The European Commission DG Move told us the legislative framework for disabled persons and persons with reduced mobility to travel by air allowed oxygen-dependent patients to fly as any other passenger. But the reality was very different. We collected patient testimonials explaining the complex and not standardised procedure to request oxygen on-board, including overcharging for oxygen bottles on-board, all of this resulting in the fear of an oxygen gap between their home and the plane.

Our new website flywithoxygen.efanet.org is the result of a long-term fieldwork collecting the policies, procedures and prices of all European airlines. Through this platform, we are offering guidance to patients on steps to get their oxygen treatment on-board, but we also want to shed light on the abusive and discriminatory policies some airlines are practicing on patients’ needs. It is simply unacceptable.

Our continued work has already contributed to improve things though. As a result of our meetings, four European airlines have decided to offer oxygen bottles for free in their flights. The discussions we had with Airports Council International and the European Civil Aviation Conference to enhance communication between airports, airlines and staff to enable smooth travel for oxygen-dependent passengers were very positive. We now hope that our website will be a helpful tool for patients and a proof that our health in all policies approach can make a difference to every aspect of a patient’s life.

Each year, Parkinson’s organisations and individuals across the world observe 11 April as World Parkinson’s Day. This year’s World Parkinson’s Day is a landmark anniversary, as the date marks 200 years since Parkinson’s was recognised as a health condition.

The #UniteforParkinsons campaign was developed by two charities, the European Parkinson’s Disease Association (EPDA – EPF member) and Parkinson’s UK. Both organisations aim to position World Parkinson’s Day as a platform to grow an active global Parkinson’s community that can collectively advocate for change in the treatment and management of the condition.

The campaign is aimed at Parkinson’s stakeholders across the world, including:

• People affected by Parkinson’s (patients, carers and family members)
• local, national, regional and international Parkinson’s organisations
• charity supporters and foundations
• healthcare professionals
• members of the research community
• policymakers and decision-makers (both national and EU)
• pharmaceutical industry companies.

Already supported by dozens of Parkinson’s organisations around the world, this campaign needs the support of as many countries, individuals and organisations as possible. By speaking together with one voice on 11 April, patient organisations will unite across the world to make it clear that 200 years without a cure is too long.

To this end, the campaign is calling for everyone to use the hashtag #UniteForParkinsons on 11 April – to share their experiences, campaigns and best practice, as well as their hopes and plans for the future.

To find out more about how you can support the campaign – both online and offline – and access a number of campaign resources, visit www.worldparkinsonsday.com and/or email worldpdday@epda.eu.com. Resources are available in English, French, German, Italian, Spanish and Welsh.

Make sure you visit www.parkinsonslife.eu – the official #UniteForParkinsons media partner – in the lead up to 11 April to get inspired and stay up to date with all the latest campaign news.

Continue reading International Parkinson’s Community Get Together →

Addictions are unique and devastating diseases: they affect the body, the mind and the spirit of a person. Understanding the multifaceted impact they have is a critical step towards an effective treatment. EPF Youth Group member, Yolita Pavlova shares some of her experience as a volunteer in addiction prevention. 

The issue of effective treatment has been key to me ever since I started working as a volunteer in the field of prevention and treatment of addictions. I come from a family with addictions and understanding how to help people facing such problems in my country, Bulgaria, soon became a personal cause.

I met with doctors, attended trainings, and listened to many personal stories.  I came to realise that anyone working in addiction prevention shared a common belief – this is a multileveled condition.

The Biopsychosocial model

One model in particular explains why treating addictions is so tricky:  the Biopsychosocial model. According to this model, addictions are chronic conditions that consist of 3 components. To gain recovery, a structured approach to address each component of the condition with the adequate means, order, and length of the treatment is necessary. It is a long process that may consist of several episodes of treatment and has cumulative results.

• The first component addresses the physical and physiological changes that the substance intake causes, such as withdrawal symptoms associated with physical dependence that occur when the drug is no longer taken, the delirium tremens condition, etc. These symptoms are addressed with pharmaceutical means and mainly with medications for detoxification and reduction of craving. Drug detoxification can prevent unpleasant or fatal consequences resulting from sudden cessation of substance use and supports the patient on his/her road towards drug abstinence.

• The second one concerns the mind, models of thinking, and the behavior changes that appear as a result of excessive drug use.  This component is best addressed through therapy – e.g. cognitive behavioral therapy, group therapy to change behavioral patterns, or therapy to increase motivation. The intervention of Consultants who are themselves recovering addicts in treatment programs is crucial as they provide their unique experience and deliver a message of strength and hope to those who do not believe cutting down on excessive substance use is possible.

• The third component of the model tackles the spiritual and moral dimension. Resocialization is the key factor to tackle this aspect – the recovering addict needs to learn how to function without the substance within his/her family, work life, and in society. Thus, resocialization groups such as the Alcoholic Anonymous self-help groups follow the model of smart recovery and the “12 steps approach”. The inclusion of the family in the recovery process is key for its success.

Excessive substance use is not the disease – it is a symptom

because of the multifaceted approach of the disease, addressing only one of its aspects – e.g. prescribing medicines for detoxification or drug substitution such as methadone without therapy and resocialization would probably result in less effective results.

By the same token, the misuse of the medicines prescribed to people with addictions within the framework of their treatment is more likely when there is no coordination during the long and multileveled process of recovery.

–  No single treatment exists for addictions – Both pharmacological and behavioral approaches should be combined to pursue not just a temporary abstinence, but a full and happy life without the substance.

Lembe Kullamaa, Member of EPF Youth Group took part in November 2016 in a European Medicines Agency (EMA)’s training directed to patients and consumers. She tells us more about this interesting and useful experience.

This has been one of the most interesting training sessions that I have attended. It lasted one day and was very action-packed. The day started with the introduction of how medicines are evaluated in Europe and how their safety is monitored. The EMA is a European Union agency that is responsible for the scientific evaluation and supervision of human and veterinary medicines that are developed for the EU market. They also provide scientific advice on the development process on request from pharmaceutical companies.

EMA has many opportunities to involve patients and consumers in the medicines’ approval process, even from the beginning. The whole training was very hands-on and involved real examples where patients can provide their knowledge to improve the process. Patients have been involved with EMA since the founding of the organisation.

For example, we can participate in scientific advice and protocol assistance procedures that take place pre-submission, we can participate in working groups, and we can respond to consultations and review information on medicines during evaluation and post-authorisation. During the training I attended, we worked through the whole process using real examples and discussing many aspects that are considered in the medicine evaluation process.

In conclusion, patients are very valued part of medicines’ evaluation and approval process and it is fantastic to see that EMA is using this very valued resource with their unique knowledge and input.

Public health does not usually play a big role in the French political debates. But this year might be different. Our French member LE CISS tells us why in an opinion letter, ahead of the general elections in France.

No one can deny our health system needs a change. The current situation makes the re-thinking of our healthcare system a necessity and could put this issue higher than usual on the agenda of the French presidential election (April 23 and May 7).

The French platform of patients’ and users’ organizations (Le CISS) has decided to avoid the debate around the privatisation of the healthcare funding system – which a vast majority of French citizens rejects – and to raise awareness on 5 fundamental issues that will in our opinion configure the access to quality care for the next few years:

1. The issue of “Medical deserts” and the need for a better geographical distribution of healthcare professionals – especially physicians – throughout the country.
2. The part of health care costs that patients have to pay out-of-pocket and the gaps in the French reimbursement system.
3. The appropriateness of care and the need to avoid unnecessary treatments, facilitating a better allocation of resources, and a better coverage of poorly reimbursed care.
4. The pricing of innovative medicines, and how public resources dedicated to health shall fund and promote actual therapeutic innovation.
5. Public health promotion: improving prevention and health education in order to reach the populations at the “outskirts” of the health system, to contribute to the reduction of health inequalities and to avoid the stigmatisation of behaviours considered as harmful.

For each of these topics the CISS has produced a fact sheet depicting the situation analysis, the CISS proposals and putting questions to the candidates running for France presidency.

These fact sheets will be sent to each candidate, and widely distributed in our networks as well as to a greater audience, starting on January 31, when the name of the official candidates will be made public. We will publish the candidates’ answers in March ­– every Wednesday will be dedicated to a different question – to inform voters on the candidates’ plans with respect to the 5 priorities we identified.

From the end of January, this whole initiative called “Objectif Présidentielles 2017 ” will be online on our website www.66millionsdimpatients.org, and we will encourage users to support our awareness campaign and relay our questions to the candidates – with the hashtag #PaieTaPolitiqueSanté – so that the candidates’ health projects can become a key element for voters.

Marc Morel, LE CISS Director.

Contact person:

Marc Paris, Communications Officer, mparis@leciss.org

Read here the very eye-opening testimonial from Katharine Wheeler, from LUPUS Europe, on the importance of patients’ feedback in diagnosis.

I have a collection of auto-immune diagnoses, one of them is life-threatening without treatment.

Very often the medical profession does not expect, or even accept, that we may not have only one diagnosis. GPs have rarely come across those more complex cases, and sometimes the GP is the person providing access to specialists.

The first disease I was diagnosed with is complex in itself. It can manifest in a variety of ways and is known as the great imitator. Because of this it can be blamed for everything. This was what happened to me.

In order to treat my disease, I was put on cortisone but every time I tried to reduce my doses to minimise side effects some of my symptoms returned quite severely. Despite that, I listened to my doctors and I ended eliminating cortisone from my medication… but I knew that something was wrong, that my disease must be flaring and that life was simply impossible.

I went through about 18 months of extreme exhaustion. A period where I was sleeping far too many hours in a day, where my life fell apart, where I lost money and rights in terms of social support because I was unable to fight a decision I knew to be wrong. My husband lost his wife, my children lost their mother… and the only answers I got from the specialist was that I should “discipline” myself to only sleep a half hour in an afternoon, that I was oversleeping and harming myself.

Presumption is a very dangerous thing. Yes, I am a mother, but most mothers are not exhausted in the same way I was, and yes, being active was more difficult for me because of my joints but unlike many people I know, I forced myself to go walking every single day.

Another presumption concerns depression. I am fortunate not to suffer from depression but can occasionally feel down simply because I am so exhausted I cannot think or function.  I should not be presumed to be depressed because I say I am tired.

After a long time and after nearly giving up, one of my doctors finally decided to look for something that no-one had tried before. They hadn’t looked because the disease is very rare in its auto-immune form. They hadn’t looked because it is presumed that a person will only have one auto-immune/chronic disease. They hadn’t looked because the problem I was having was presumed to be due to the cortisone I had taken previously, a temporary situation that would resolve.

It didn’t resolve because it couldn’t. Because this new, rare disease had always been there, pre-dating my first diagnosis. It had been hidden by the cortisone I was taking, the cortisone that had, coincidentally, been treating it.

I was lucky that one of my doctors had introduced a tiny dose of another type of cortisone. The dose was very small and not enough to treat a person who has Addison’s disease and who doesn’t produce their own cortisone but it was enough to keep me alive, just.

Thankfully, despite the worsening of my symptoms, and the increasing lack of “life”, I got my diagnosis in time. Addison’s disease can, and does, have fatal consequences. It is manageable and treatable but it is incurable. Treatment is for life and treatment sustains life.

My GP recently had a young doctor studying with him. At the end of our consultation, he asked me if I had any advice to give this young doctor. My advice was: Never presume (either medically or in terms of what you “think” the patient is doing). Always envisage the unexpected. Always listen to the patient. Always “investigate”.

I think though, it is also important to remember that, although these situations are rarer, I am not alone. I know many people with chronic diseases where the complexity of their medical picture has led to similar problems. I am NOT an exception.

Transition to adult care involves a wide range of stakeholders from hospital and health managers, health professionals, pharmacists, young patients and their families. The European Pharmaceutical Students Associations explains the crucial role of pharmacists in that regard.

There is a very low awareness and understanding of the Transition issues amongst many healthcare professionals in Europe. When confronted with the topic at the 13th Autumn Assembly of EPSA (European Pharmaceutical Students Association) the majority of the pharmaceutical students were confused and surprised to learn about the patients struggles. The topic was presented by a representative of the EPF Youth group, during the workshop entitled ‘Transition to Adult Care and its Psychological Impacts on Young Patients’.

The workshop was part of the Educational program of the event and achieved 3 important results:

1. During this interactive session the audience recognized that transition may represent a problem for young patients.
2. The audience regarded the role of pharmacists in the transition process and suggested that the figure of the pharmacist can work along with doctors when talking to patients on topics like treatment and drugs.
3. The pharmaceutical students shared their own perspectives, the realities in their respective countries, exchanged ideas and provided positive feedbacks. The outcome was an agreement that pharmacist need to be trained to be able to effectively talk to patients especially young ones.

The attendees were also presented some best practices that have been already implemented in different European countries. Such practices aim to tackle the lack of coordination among stakeholders who are in charge of ensuring that the process takes place as smoothly as possible. Thus a team made up of different professional figures, e.g. pediatric and adult primary care doctors, nurses and educators is deemed crucial when supporting young patients who move to the adult-centered health care.

Another point in common to projects/programs presented is that they are designed to equip young patients with skills and knowledge. The aim is to support the patients in taking control over their condition and to better self-manage. The figure of psychologist is also recognized essential to avoid any detrimental psychologic implications in bewildered young patients which often lead to low rates of adherence to specific treatments or drop-outs. But most importantly, the best practices suggest that transition is successful when young patients can share fears and doubts to other peers and are able to have access to the right information that allow them to live this delicate process efficiently and comfortably.

The workshop follows up on the roundtable the Youth Group hosted in Brussels last March which saw the involvement of different stakeholders ranging from healthcare professionals and patient organizations to MEPs and representatives of the academic world. Transition was defined as the process that young patients with chronic conditions go through when moving from child-centered to adult-centered health care systems and was identified as a major problem in the context of access to healthcare. Thus, it was recognized prominent importance on this year’s EPF agenda. Specifically, the rationale behind this workshop was the need to identify and limit the psychological issues that may arise during the process. When poorly managed, the transition can also result in lack of trust in health professionals and in the healthcare system.

The Models of Child Care Appraised (MOCHA) project held its General Assembly meeting in Rome on the 20 October 2016. The EPF Youth Group Chair, Aneela Ahmed tells us about her experience as a participant.

The MOCHA project meeting and General Assembly turned out to be a very interesting experience. In the backdrop of the scenic and historic roman ruins proved to be a fitting setting for the first General Assembly. The current research is broken down into work packages that help to organise and categorise the research for an easier dissemination into different languages. The General Assembly helped to humanise the researchers for stakeholders allowing engagement of country agents, stakeholders and External Advisory Board (EAB) Members which included the voice of young patients through a designated member of the EPF Youth Group.

Many issues were raised by the youth delegate concerning issues surrounding transition, the current chart and what is included as essential factors relating to child health, the current primary health system and how it may or may not fit the needs of children across Europe. We welcomed colleagues from Australia and America to help advise on specialist issues related to public health whilst continuing the dialogue between existing EAB members on how we could contribute towards promotion and finding connections for research.

It was particularly insightful to hear the recommendations from colleagues who were well versed and informed through the research and knowledge they had through their organisation however, it must be noted that it was imperative for YG member presence. Simply, due to the insight and issues that could go amiss when discussing primary health care for children and young people when direct consultations cannot be implemented.  It was a successful meeting and the future of this project for both the MOCHA team and our young patients looks a little brighter because of it.

Antimicrobial Resistance, the resistance to some antibiotic drugs is a very hot topic currently raging – and rightly so – in view of its alarming proportions. Mary Lynne Von Poelgeest-Pomfret, from the World Federation of Incontinent Patients shares on our blog her very personal and touching story.

It is a story very close to home as it relates to my husband, and I think we, patient, carers, health professionals, can all learn from it.

It all began in the autumn of 2015. My husband went to our GP and was diagnosed with an acute urinary tract infection for which he was prescribed a course of broad spectrum antibiotics. No change. Symptoms persisted. A second course of antibiotics. Still no change. By the third visit, weeks later, it was finally decided to do a urine culture to test. This revealed antimicrobial resistance to two well-known bacteria: helicobacter pylori and morganella morgani.

Without going into the details, my husband was reluctantly referred to the academic teaching hospital in our region. A treatment plan was quickly set up, involving a surgical intervention and three weeks of antibiotics administered via an IV. The plan was then to spend the first few days post-operatively in the hospital and subsequently continue with the treatment at home.

To summarize, the surgical intervention and antibiotic IV administered in the hospital to combat the AMR were correct, but the actual methodology and implementation protocols within the hospital failed.

The surgical intervention led to complications which were incidentally never explained in the hospital. The IV treatment was fine in the clinical setting but there were few, if any, adequate mechanisms in place to enable a smooth transfer to the home situation. The onus was entirely on the patient and in this case it was me who had to arrange for the continuation of the IV antibiotic treatment at home.

The mechanisms for the transfer of the IV treatment to the home situation were just not in place and the hospital didn’t really wish to know. It was only thanks to endless running around (on my part), persistence and resolute handling of the situation by the wonderful specialized homecare nursing team – nothing but praise and admiration – that treatment at home could be continued.

But then the following to cap it all.

The dosage in the IV containers as prescribed according to the dosage as administered in the hospital setting went completely wrong. The local pharmacist supplied the antibiotics in the wrong dosage.

It was only thanks to the ‘beady eye’ of the specialist homecare nurse immediately after release from hospital that the situation was rectified, and only after many phone calls between the homecare nurse, the hospital and local pharmacists.

In the end, the various hiccups and errors were rectified and despite the extremely cumbersome and onerous situation both for my husband and myself, the future is looking optimistic as far as the AMR is concerned.

But there are many lessons to be learnt:

• From the outset, the flippant attitude towards the antimicrobial resistance needs to be addressed. AMR should be taken seriously and treated accordingly.
• The communication channels between the various parties and hospital protocols need to be tightened up. The checks and balances certainly need to be in place when it comes to medical prescriptions, and also the transfer of care from the clinical setting to the homecare environment.
• Finally, a patient should never be placed in the precarious, onerous and utterly irresponsible situation with which we were confronted.

The lesson for the patient and the carer is therefore to be steadfast: demand the right treatment and do not take a no for an answer. Much of the hardship, frustrations and inadequacies of the system could have been avoided had we been more resolute and indeed better informed. My husband would not had had to undergo a very invasive surgery and AMR treatment if there had been a dedicated treatment plan right from the outset.

So the message is clear:

Speak up and take note of all parties involved! As a patient, be resolute and know what is best for you. Communicate and question so that errors can at least be minimised, and if in doubt… ASK!