Chronic diseases are responsible for 86% of all deaths in the EU. Only 3% of health budgets are devoted on prevention activities. Time for a change, calls the European Health Parliament.

It is no news that more action is required to tackle the issues associated with changing lifestyles, an ageing population and increasing rates of chronic disease.  The related economic burden of chronic diseases is pressuring health systems around the world towards more efficient and more productive healthcare delivery.

The European Health Parliament’s Prevention and Self-Care Committee has taken on the challenge to address the above issues, by integrating self-care and preventive measures into multi-stakeholder solutions, incorporating the wider community.

Increasing efforts already exist to drive reductions in preventable chronic diseases.  However, there is still a major fundamental barrier that urgently needs to be addressed in order to ensure that these solutions are sustainable in the long-term – the allocation of appropriate funding.

The European Health Parliament’s Prevention and Self-Care Committee seeks to tackle this important barrier; for which the solution is not simply an increase in funding, but a sustainable solution, with tangible benefits both for the investor and for the patient.

The 12 young professionals composing the Prevention and Self-Care Committee of the EHP worked on a series of recommendations bringing innovative ideas to the table, at the EU, Member-States and community level.

EU level

• Creation of EU-wide standards for performance of healthcare systems, with focus on patient and societal outcomes
• New Joint Action on Self-Care and Prevention
• Setting up an Interest Group on Self-Care and Prevention within the European Parliament
• Slovakian and Maltese EU Presidencies to include recommendations around self-care and prevention in their upcoming priorities

Member States level

• Break down the silos and ensure a ‘Prevention in All Policies’ approach
• Increase budgets allocated to public health and prevention
• Implement incentives for employers to promote self-care and prevention policies in the work place
• Incentivise population to make positive choices and promote healthy habits

Community level

• Creation of an investment fund for the implementation of self-care and prevention policies
• Public-private partnerships to explore the scaling up of successful pilots on self-care and prevention
• Patient organisations and healthcare professionals to raise awareness of the role played by self-care in the prevention of lifestyle related diseases.
• Healthcare professionals to embrace and advocate for self-care

The current burden imposed by chronic diseases on European healthcare systems is unbearable. There is still time to change the tide, however Europe must quickly transition from a reactive system of acute healthcare and curing of already established diseases, to being proactive in preventing such illnesses.  Self-care, in the form of preventive measures, will play a fundamental role in this change.

The European Health Parliament is a platform of 55 young professionals from across Europe, who are working together over 6 months, with the aim of changing the future of healthcare in Europe. The European Health Parliament is an initiative founded by 5 external partners, Politico, Google, College of Europe, EU40 and Johnson&Johnson. More info at www.healthparliament.eu.

@healthparl.

Contact person: Laurent Louette, Communications Officer, laurent.louette@eu-patient.eu

Every month we put the spotlight on one of our members. Today, we are delighted to put the International Bureau for Epilepsy to our now famous short questionnaire!

1. What’s on top of your agenda?

IBE has a vision of the world where ignorance and fear about epilepsy are replaced by understanding and care. Some years ago, a former member of our executive board commented that “the history of epilepsy can be summarised as 4,000 years of ignorance, stigma and discrimination, followed by 100 years of knowledge, stigma and discrimination”. Unfortunately, this is still the position even in Europe.

Top of our agenda in 2016 are our regional congresses and, in particular, the 14th European Conference on Epilepsy & Society, which takes place in Prague on 15th and 16th September. Through Epilepsy Alliance Europe, a joint initiative of IBE and our medical counterpart the International League Against Epilepsy, we are working on an application for a European Regional Network focussed on rare epilepsies.

2. Why does your organisation exist?

 IBE exists to improve the social condition and quality of life of people with epilepsy and their carers.

Epilepsy is one of the most common serious diseases affecting more than 50 million people globally. This means that it affects about 1% of the population.

IBE was established in 1961 as an organisation of laypersons and professionals interested in the medical and non-medical aspects of epilepsy. IBE addresses such social problems as education, employment, insurance, driving licence restrictions and public awareness among persons with epilepsy and their families.

The Bureau also works in close liaison with the International League Against Epilepsy (ILAE), an organisation of medical professionals involved in the medical and scientific issues of epilepsy.

3. What is your biggest achievement as an organisation?

 IBE works closely with other bodies and organizations, such as the World Health Organization, with which IBE has been in official working relations for many years; as a member in Special Consultative Status on the Economic and Social Council of the United Nations (ECOSOC); and as a member of CoNGO – the Conference of Non-Governmental Organisations. At European level, we are a member of the European Federation of Neurological Associations (EFNA) and now, of course, EPF!

This unique understanding in lobbying at EU and WHO levels led to the passing of the EU Declaration on Epilepsy in 2011 and the approval of a World Health Assembly/WHO Resolution on the global impact of epilepsy in 2015. IBE is also a member of the EMA Patient and Consumer Affairs Working Party and contributes regularly to reviewing of patient information leaflets for various medicines.

4. What is for you the key benefit of your organisation’s involvement in EPF?

The grass roots approach of EPF with national member organisations ensures that it has its feet on the ground. It also provides an excellent listening ear to what is happening in Europe.

The workshops organised by EPF provide great opportunities for EPF members to be informed on a range of pertinent issues.

Networking is a big plus and we have a lot to learn from each other especially with regards to funding activities, new models of empowering patients and organising networking activities for persons with epilepsy, their relatives and friends.

And, of course, there is no need to mention that the high esteem in which EPF is held is a further benefit of membership.

5. What’s the main misconception about your disease area?

 Depending on where you live in the world, the misconception will differ. In many developed countries, there is still the misconception that epilepsy is contagious. It is also assumed that there is only one kind of epilepsy – tonic clonic – with the patient dropping to the ground, losing consciousness, shaking uncontrollably and foaming at the mouth. But there are more than 40 types of epilepsy. In developing regions, in particular in Africa, the main misconception is that people with epilepsy are controlled by the devil or by evil spirits.  All these misconceptions result in stigma!

Epilepsy is more than a medical diagnosis; it affects almost every aspect in the life of the person diagnosed with the disease – imposing serious psychosocial and social burdens on both the person with epilepsy and their families. For many people with epilepsy, the stigma attached to the disease is more difficult to deal with than the disease itself.

Of concern is the fact that it is estimated that, globally, up to 100,000 premature deaths each year may be attributable to epilepsy. Many of these could be prevented with appropriate medication and treatment.

My name is Thomas and in December 2011 I was diagnosed with Crohn’s Disease, which is a type of Inflammatory Bowel Disease (IBD). Like everyone who is diagnosed with a chronic illness it hit me pretty hard, especially as I had to have part of my bowel removed to reduce the symptoms.

To get my head around my new way of life, I tried to learn as much as I could about the condition but the more I read, the more I got depressed by the negativity surrounding it. This made me think that everything I wanted to do before being diagnosed was no longer possible.

Once my health became more stable, I decided to challenge my negativity by developing an alter ego called The Chronic Adventurer, a person who goes on adventures BECAUSE he has Crohn’s Disease. By this I am not dismissing the limitations IBD can have on someone’s life, however while I am feeling healthy I want to live my life to the fullest as I know my circumstances could change in the future.

My most recent adventure has seen me run six marathons in 12 months, including the London Marathon. Originally, I only set out to run one but as my health fluctuated in that period, whenever it settled down and I had the opportunity to run just one more marathon, I said YES; again and again and again as I told myself that saying NO was not an option.

I also like to share my story online through my blog, Facebook, Twitter and Instagram pages to help raise awareness of my condition and fundraise for the charity Crohn’s & Colitis UK, as well as inspire other people like me.

World IBD Day

One of my first adventures was on 19th May 2013 when I decided to cycle 80 miles around London to mark World IBD Day. Since then, I have committed to doing something bigger each year to push myself out of my comfort zone and raise awareness at the same time.

In 2014, I was filmed as part of a Living with IBD project by Crohn’s and Colitis UK at a time when I still wasn’t 100% comfortable publicly attaching myself to Crohn’s Disease. Last year, I went one step further by joining the Get Your Belly Out campaign and shared a picture of the scar on my stomach across social media to increase awareness of the affects of having Crohn’s Disease.

This year, I will be celebrating in Strasbourg as I am representing the EPF Youth group at the European Youth Event. During my transit in Paris, I will attempt to take a photo in front of the Eiffel Tower wearing my Crohn’s and Colitis UK t-shirt. Once in Strasburg, my friends and fellow delegates will join me in wearing something purple for a group picture as part of the European Federation of Crohn’s and Ulcerative Colitis Associations’ (EFCCA) United We Stand 2016 global campaign, which encourages anyone impacted by IBD to unite under the purple colours of World IBD Day.

Contact persons:

Valentina Strammiello, Programme Officer, valentina.strammiello@eu-patient.eu

Laurence Woollard, EPF Youth Group Intern, laurence.woollard@eu-patient.eu

May 2013 is the Month of the Brain. This is the occasion for all neurological disorders to champion their cause. Audrey Craven, the current President of the European Federation of Neurological Associations (EFNA), shares her experience of living with disabling migraine.

“I had been living with disabling migraine for many years before I founded the Migraine Association of Ireland (MAI). It affected me on two to three days of every week, but I never knew which days it was going to strike. Symptoms would include an intense throbbing headache, vomiting and diarrhea, sensitivity to light, sounds and smells – and stroke-like symptoms such as slurred speech, numbness and even fainting. This meant that I was unable to function and would be confined to a darkened room. I could not work, socialise, and adequately care for my three young children. The impact on my quality of life was immense. My mental wellbeing was suffering as I felt isolated and alone. People would dismiss it as ‘just a headache’ – not knowing that headache is just one of many symptoms.  And worst of all, no medication worked to cure or ease my symptoms.

Then, in the early 90’s a new form of migraine medications called ‘triptans’ came on the market. These revolutionised my life and allowed me to be well enough to found the Migraine Association and work, in a voluntary capacity, as a patient advocate.

Andrew Zammit McKeon is a young student diagnosed with diabetes. He is also member of the EPF Youth Group. On 8-11 July, he will have the occasion to put forward young patients’ expectations under the EMPATHY project’s seminar. He shares his experience as a young patient on our blog ahead of the event’s session “a day in patients’ shoes” and provides his opinion on two event’s focuses: data protection and discrimination.

“I was diagnosed with diabetes at a young age, just prior to my eighth birthday. My mother was the one who realised I was affected as she recognised the symptoms from my father’s diabetes.

My treatment consists of insulin injections and blood glucose monitoring. I was first terrified by the injection and finger pricking as I was very young and that my mother was doing it to me. I achieved to get over my fear at diabetes’ summer camp for children.

As from that time I adapted pretty well to living with diabetes. I think I grew faster than other youngsters and I learned to see life without sweets as something normal, rather than a punishment. 

Around the age of 10 or 11, I got used to diabetes and understood that it had little impact on my life. It’s like breathing: it’s there but you don’t pay attention to it. My attitude towards my condition has also been facilitated thanks to my friends as they did not pay attention to it, therefore why should I?

My position on the disclosure of personal data is linked to my own use of Social Media. While many young patients do use them extensively, I don’t. I personally do not want to post personal details of my life on a public forum. This affects my views on the disclosure of data as I believe that my medical data can be disclosed but that my personal details are nobody else’s business.

My experiences so far with ‘discrimination’ have been largely positive with friends, colleagues and superiors. They treat me equally but they just tend to be more caring, in preventing hypoglycemia for instance. However I do know other young people with diabetes who have been discriminated at work. I think we have to distinguish discrimination that can be justified i.e. for becoming a pilot with other types of discrimination such as jobs, insurance, loans, etc. that should be condemned.”

The patient has a gender. Men and women’s differences go well beyond biology and physical characteristics. The State of Men’s Health report outlines these differences from the male’s perspective. Ph.D. Svend Aage Madsen, Vice President of European Men’s Health Forum (EMHF) which is associate member of EPF, looks at these differences.

Men’s life expectancy is four to eight years lower than women across Europe. There is also a strong gender dimension to lifestyle choices and risky behaviours. They place men at higher risk of ill health than women.

However men feel generally more satisfied about their health and well-being than women. It is the same for patients. Men react differently towards treatments and bad news than women.  While women seek consolation, men get away from pain, take distance or ‘opt out’.

Looking at healthcare through a ‘gender lens’ has enabled fresh insights to be gained. Gender equality initiatives are of course needed. Key health policies are indirectly affecting men’s health in a positive way, such as smoking bans, road safety legislation, health and safety in the workplace.

However health care systems must take into consideration gender differences and therefore develop more male-sensitive services. They have to consider that men will often want to diminish the patient role and the impact of the disease in everyday life. They have to deal with the fact that men often need to maintain autonomy and self-determination as patients and prefer advice to help.

“Time to improve men’s health: the next step for the EU?”- This issue will be raised at the European Commission with the presence of the new Commissioner for Health Tonio Borg on 19 March. Link to the event information: http://www.sundmand.dk/Invitation%20to%20Mens%20Health%2019th%20of%20March%202013.pdf

The needs and expectations of young patients do not necessarily match those of adult patients. This is the reason why EPF has launched into a youth strategy in 2010 and established the youth group in 2011. Marta Dimitrova, president of EPF Youth Group, talks about her experience of being a representative of young patients through an umbrella like EPF.

“I am very thankful to be part of the EPF Youth Group as I admire EPF, its goals, values and efforts. I admire people who are trying to change things and I hope that one day I will be part of it. Ever since I was little I have always met a lot of people with fewer opportunities in life and these people deserve to be recognised. Even if I am not a patient myself, such experiences made me wish to support and help them while others ignore their existence.

At EPF I have really the impression that my voice matters. I want to take this chance to raise the voice of patients and specifically young ones as we are not always heard. 

Young patients are pretty different from the adult ones. Most of them live their disease like a nightmare and with a lot of stress. They feel different and, at the same time, sometimes refuse to admit that they have a problem and prefer to keep it secret to be “like the others”. For that reason their needs and expectations differ completely and should be tackled differently as well. They need to realise that they are not alone and to feel that they can trust people who are in connection with their sickness and who are willing to help. Through the Youth Strategy, we learn how to strengthen our representatives’ skills and self-confidence. This equips us for our future representation in patient organisations.

EMPATHY is the best example of it! This four-day seminar will show young patients that, first of all, they are not alone and allow them to meet European policy-makers and stakeholders that are active in the field of health. We really expect a lot from this event and we will put our hearts and souls to make it a success and bring a lot of positive and confident smiles in the end.”

One core value of EPF is to strive for a patient-centred healthcare. The European Federation for Allergy and Airways Diseases Patients’ Associations (EFA) shares the same goal except that their perspective is focused on allergy, asthma and chronic obstructive pulmonary disease (COPD). Being member of EPF allows EFA to follow general topics for all patients despite their disease which also allows them to further apply it in their disease area.  This is an insight into a disease-specific campaign for Allergy Awareness with Roberta Salvi.

Too often allergy is not considered a “real” disease, and this perspective is generally shared by both the policy-makers and the wider public. As a consequence, almost half of allergy patients never ask or receive a proper diagnosis. Without access to proper treatment and knowledge of their condition, patients may not even realise their higher risk to develop asthma. Such information needs to be available to the public: patients need to know how to make better-informed choices and improve the management of their disease.

To inform patients, EFA published the EFA Book on Respiratory Allergies: Raise Awareness, Relieve the Burden. It was the first step of our “Allergy Awareness” campaign to sound the alarm on the behalf of allergy patients. This book is the first of its kind in allergy as it contains the results from a survey where 18 EFA’s patients’ associations in 18 European countries answered and is translated into 14 other European languages. “By patients, for patients” this collection covers a range of topics from diagnosis, quality and accessibility of best practices on care and prevention across Europe with shortfalls and successes judged by the patients’ organisations. 

Alongside this book we have launched a Call to Action to ask policy-makers to coordinate actions to increase the political recognition of respiratory allergies as a real and serious disease; promote national programmes on respiratory allergies; prioritise the management and control of respiratory allergies; promote training in allergy for healthcare professionals to improve accurate and early diagnosis; align healthcare and reimbursement policies, to support appropriate disease management; and improve indoor air quality.

You too can make a difference today by signing our Call to Action! Appropriate measures need to be taken to improve the quality of life of people with respiratory allergies!

Such project can be categorised into the broader EFA´s chronic diseases’ agenda. After having included our input into EPF formal position statement, we developed our own response. We believe that the reflection process on chronic diseases should open the door to an EU strategy that should include disease specific best practices and national programmes, such as the Finnish national allergy programme on which our Allergy Awareness campaign is building on. It is the first of its kind in Europe and could ultimately lead to significant outcomes that should not be underestimated by other countries or indeed should be shared with other disease areas.

For more information, please contact Roberta Savli at roberta.savli@efanet.org

EPF lately released a report on the “rights and needs of older patients”. Ageing is a theme of particular importance from EPF’s perspective. The general population is ageing, many chronic diseases become more prevalent with age, and patients with chronic diseases developed at a younger age are living longer, thanks to modern medical treatments. A very specific role of EPF in the theme ‘Healthy Ageing’ should be to safeguard the interests of people with chronic diseases and their special needs when they are ageing. Here is the testimonial of Cees Smit that illustrate these specific needs.

While I’m getting older with haemophilia, my care-givers are getting younger. The same is true for EU policy makers. Where they are talking about new concepts like ‘healthy ageing’ and ‘self-management’, my personaI experience  is increasing health problems and a decreasing ability to manage my own care. For EPF and also other patient groups the issue for the future will be how to incorporate the challenge of comorbidity in the ‘healthy ageing’ concept.

The quintessence of my personal story is that in more than sixty years of life, I became a person with multiple chronic diseases and with a broad range of health care contacts. It’s my belief that although this is my own personal story, it is comparable with the experiences of many other people with chronic diseases and comorbidity. Details may be different, but the general picture will remain the same.

Three problems worry me specifically with comorbidity. The first problem is the lack of coordination between medical specialists, the second is polypharmacy – the use of multiple medications – and as a consequence of these first two problems a third problem occurs which I prefer to address as the ‘fear’ factor.  Like other persons with severe haemophilia I have a special type of ‘fear’. The ‘fear’ of a lack of coordination, a lack of control when you are hospitalized, when you need medical treatment from physicians who have no experience with haemophilia or when you are involved in a serious traffic accident.

In all these cases you, as a well-educated manager of your own disease, may not be able to influence or check the treatment you receive. The ambulance may take you to a hospital that has a bed available but no experience with haemophilia, and then valuable time may be lost. Part of the ‘fear’ of older people with haemophilia is that they are often not in good physical shape due to orthopaedic or viral complications. So when, for instance, minor or major surgery is proposed we not only fear the operation, but the consequences of this operation for total body functioning. To us our state of health is a delicate balance. ‘Vulnerability’ or ‘frailty’ may be better terms for this.

In the last couple of years I have regularly discussed the issue of comorbidty and its coordination of care problems. One thing I have learned is that geriatric patients have problems which are similar to those perceived by people with comorbidity; i.e. growing functional limitations, psychological symptoms and social and societal problems.

In rehabilitation, paediatric and geriatric care a holistic approach has been developed in which the patient is seen as a person in relation to his environment. Care encompasses not just the child but parents and family as well. This definitely compares with the way I grew up in the hospital setting – at a time when there was no treatment for haemophilia – where the matron regarded her patients as more than their illness. Although for haemophilia this concept already exists since the introduction of specialized comprehensive care centers, I wonder whether it is also possible to introduce a comparable hospital setting for patients with other multiple chronic diseases. This will be in sharp contrast with the way most hospitals are now organized, but its worth the effort to start a number of experiments. Of course, the approach cannot be too generalized. Comorbidity problems are often so complex that highly specialized knowledge is absolutely necessary. A special clinic and outpatient facility for people with comorbidity problems could probably be introduced.

Maybe, that in this way, EPF and other EU patient groups could contribute to the ‘Healthy ageing’discussions and could start with one or two experimental projects.

I have been President of EPF for the last 7 years and am immensely proud of the journey we have travelled together over this time. As we start to plan for another crucially important 7 years, the new EU programming period, and our 10^th Anniversary, in Ireland next year, it is a good moment to reflect on EPF and my hopes and aspirations for the future.

My work with EPF goes hand-in-hand with my responsibilities as Chairman of AGRENSKA, a center in Gothenburg in Sweden providing services and support to children diagnosed with rare diseases and their families. Transcending these two very different worlds gives me  a ‘reality check’,  that all we do in the Brussels ‘bubble’ has a real impact for patients and their families in every part of Europe. This is critical and also why we need the strongest possible presence at both EU and member state level – to complete that ‘policy loop’ and generate positive change where it matters.

I became President of EPF because I want to make a difference in the way that society functions, our values base and the way that patients see themselves and others see us…to promote a holistic approach based on participation, fairness and equity, not paternalism and power-relations.  Equity is integral to EPF’s vision – high quality, patient-centred equitable healthcare for all patients across the European Union. And if we can harness the solidarity and the unity of the patients’ movement and work with others as equal stakeholders, I believe that EPF can really contribute towards a better future for Europe’s patients.  A fundamental rethink is needed regarding the way that systems work for patients and their families – we can no longer play around the edges. We need models where patients really are at the center of health and social provision, where they can play a key role through empowerment and health literacy.

Whilst understanding that ‘one size does not fit  all’ and patients have different needs and challenges at different stages of their illness, if empowerment is genuinely the premise, the starting point, then this approach  raises the bar in terms of quality, safety and sustainability – leading  to significant savings and better use of resources, as patients will be using their expertise and experience and contributing to solutions  that really work – be that more rational use of medicines and services, more concordance, more confidence in technological solutions, more trust in electronic health records etc. And as we all know, a world that is good for patients is a world that is good for everyone.

EPF is now recognised as a key interlocutor with the EU Institutions regarding cross cutting patients’ rights issues. We will use this hard-earned trust and respect to drive empowerment defined on our own terms – this I believe to be our biggest feat in the years to come. And like our sister and member patient organisations throughout Europe, this will be underpinned by transparency in what we do and how we represent patients, integrity and honesty in the way we operate and engage on behalf of all patients with chronic diseases, and responsibility as part of broader civil society movement striving for a Europe built on values, knowledge, leadership and vision.