Every month we put the spotlight on one of our members. Today, we are delighted to catch up with Dystonia Europe , which recently joined EPF.

1. What’s on top of your agenda?

 By Connecting People for Dystonia accross Europe we aim to:

• raise awareness
• spread information
• promote education & research
• support lobbying & advocacy
• add value to the work of the national associations

We focus our work on three different projects which give the opportunity to connect face-to-face or digitally with members and everybody with an interest in dystonia: The D(ystonia)-DAYS – our annual 3-day-conference; Jump for Dystonia –  our dystonia awareness campaign; MyDystonia – a digital diary for dystonia patients.

2. Why does your organisation exist?

 Dystonia is a neurological movement disorder causing continuous muscle spasms which force affected parts of the body into abnormal postures or lead to twisting and repetitive movements. About half a million Europeans are affected. No cure is available and treatment is limited to minimising the symptoms. As the umbrella organisation for 18 national dystonia patient associations from 21 European countries, Dystonia Europe’s vision is better quality of life for dystonia patients and ultimately a cure.

3. What is your biggest achievement as an organisation?

The last four years we were the grant holder of a COST-funded project: The European Network for the Study of Dystonia Syndromes, bringing researchers and clinicians within the field of dystonia closer together. The main successes were:

• Three Dystonia Training Schools – 3-day events, with grants to participants to support the cost of attending.
• Short Term Scientific Missions (STSMs) – 40 grants were awarded to young scientists, to allow them to study for short periods with dystonia experts in other countries.
• The formation of an online registry of clinical and genetic data.

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

Being involved in EPF is in line with our mission ’Connecting People for dystonia’. We hope we can contribute to the work of EPF with our experiences within the field of movement disorders and we believe our members can benefit and learn from EPF’s large network.

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

Dystonia is a little known brain disorder, not only to the public but also amongst the medical professionals. Raising awareness can help combat the stigma and isolation felt by people with Dystonia, it can also be the key to earlier diagnosis and treatment.

On Friday 20th May 2016, youth leaders from the EPF and European Multiple Sclerosis Platform (EMSP) co-hosted a workshop at the European Youth Event (EYE) in Strasbourg.

The main objectives of the workshop were to raise awareness about the importance of employment for young people with chronic conditions and to promote workplace adjustments.

Simon Duncan, a representative from the Boingboing Community Interest Company based in the UK, shares his thoughts and perspectives on the session and how he has overcome stigma as a wheelchair user when applying for jobs…

Why did you attend EYE 2016?

I was interested in seeing how people from different cultural backgrounds approach issues, such as bullying and youth unemployment.  I wanted to share my knowledge with others and try to find solutions to common problems together.

Why did you register for our workshop?

Unemployment for young people with chronic conditions is a huge issue in the UK and across the world. Take a university graduate with a chronic condition and/or disability for example; it is really demoralising that they find it almost impossible to enter the workplace at a level equivalent to their education and experience because of their health.

I wanted to gauge the extent of unemployment for those with chronic conditions throughout Europe and see if, by sharing experiences, we could come up with some potential solutions at a policy level to make the hiring process fairer and more accessible.

Have you experienced stigma when attending a job interview and/or in the workplace? How did you overcome this?

Yes, I have experienced stigma on different occasions during the hiring process. There was one interview in particular where I was clearly rushed on a test and my verbal answers were overlooked, which impacted on my overall confidence and performance. When I requested feedback, the HR representative was highly dismissive and disrespectful.

I overcome experiences like this in different ways. Firstly, I tend to find work mainly through referrals and connections. If people already know me and my skills, then they are more likely to hire me. Secondly, I do not work a standard 9am-5pm job. This enables me to circumvent the common issues that come with having a disability because I can choose my own hours, such as attending medical appointments.

Lastly, when I consider potential employers, I look to see if they are an equal opportunities employer or a member of an employment scheme, such as Two Ticks (when employers in Great Britain agree to take action regarding the employment, retention, training and career development of disabled employees).

Once I get into a role, I work as hard as I can to show that hiring me was a good decision and any stigma, whether covert or overt, was unwarranted.

What recommendations would you make to employers and decision-makers to improve the situation?

I would like improved transparency within the interview process. It should be overseen by a senior member of staff that has no vested interest in who is hired. They could write a report that details why one person was recruited over the other and make this freely available to all the candidates.

Changing the perception of young people with chronic conditions and/or disabilities is vital. Instead of viewing this as a weakness or potential cost to the company, employers should consider it as diversifying the work force and having staff who are highly adaptable and resilient; a result of living with a chronic condition and/or disability.

I would also like further clarity on the equal opportunities policy from different employers to find out if it is just a hollow gesture or if they truly deliver on their supposed ideals.

To download the full workshop report, please click here.

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

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