Andreas Christodoulou (EPF Youth Group and cancer survivor) attended the recent congress of Young Cancer Europe held in Vilnius Lithuania in late August. A great opportunity for him to share his experience and learn best practices from fellow patients.

The meeting, entitled “The Next Generation of Patient Advocates” connected a new generation of patient advocates, providing a platform for young delegates from 25 counties to share experiences and work on a collective action plan to transform the way the medical profession engages with young cancer patients. An energetic and friendly group from the Lithuanian Junior Doctors Association kindly facilitated the meeting, capturing key discussion points and organising evening activities to create opportunities to share experiences and forge friendships in a more relaxed setting. It was really empowering to be around 50 young cancer survivors or young patients currently undergoing treatment for it.

Participants came from various countries, sharing examples of best (and in some cases worst) practice within their disease areas. The main message all delegates took home is that Young Patients want to be active and that “they are not alone”. Young people are the future of the labour market and ultimately of our society, and this accounts for young patients too.

The discussion allowed for participants to debate common priorities, based on the barriers patients are facing, and to draw some recommendations for future policy measures and actions.

We thus learned that many patients hide their condition, for they are afraid of losing a job opportunity, being dismissed by their family, or friends or for fear of the reaction from society in general. This demonstrates that discrimination in the daily life context is still a challenge for most of young patients.

Another top priority emerging from the conference is the need for equal access to the most effective medical treatment across all countries in Europe, echoing the EPF Campaign on Universal Access to Healthcare.

Finally, participants called for a strong support to rehabilitation programmes, as the impact of cancer or any related condition does not stop when treatment is over. Patients in the room underlined how crucial this phase is for cancer survivor to go back to a normal life and increase chance of preventing the reoccurrence of symptoms.

As the meeting came to an end, I was impressed with the commitment and the courage of all the participants and I am sure that we all will embody Dr. Seuss’ saying “Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.” After all, “Be the change that you wish to see in the world” as Mahatma Gandhi said.

The feedback from our members is the backbone of our work. The new EPF video will tell you all about our consultation processes, and how we can support our members growing, for better patient advocacy in the EU.

The short and animated video explains in just 2 minutes the special relationship EPF has with its members. Their feedback is vital to us; our work and credibility rely on it. The video illustrates the democratic consultative processes we use to collect our members’ concerns, comments and use them as our baseline for our policy positions and advocacy work. It ensures our message is strong and representative of our membership. It is the backbone of our work.

The video also develops on the benefits of being a member of EPF. Demonstrating that by sharing their expertise, our members enable us to influence decision makers in Brussels, giving their concerns a clear voice to play a central role in shaping European policies.

Have a look here on our YouTube channel and on our other social media handles. Like it, leave a comment and share it amongst your network!

Contact person:

Laurent Louette, laurent.louette@eu-patient.eu

On 26 to 28 May, our member EURORDIS is organizing the eighth edition of the European Conference on Rare Diseases & Orphan Products (ECRD) in Edinburgh, UK. Rare diseases stakeholders from across Europe will get together and discuss crucial themes for the sector.

This biennial conference is the foremost event that unites all rare disease stakeholders from across Europe (patients and patient representatives, healthcare professionals and researchers, industry, payers, regulators and policy makers). ECRD 2016 will bring together over 80 speakers and more than 700 participants, covering six themes of content over two days: from the latest research, to developments in new treatments, to innovations in healthcare, social care and support at the European, national and regional levels.

The focus in 2016 will be on Game Changers in Rare Diseases. There will also be pre-conference tutorials to ensure participants are equipped to learn as much as possible from the conference.

New meeting formats to enhance the on-site learning experience will be showcased for the first time in Edinburgh and will include a speed networking session, an open-house soap-box lunch session, audience polling, networking lunches and dedicated poster sessions. More info on networking.

Follow the conference on social media with #ECRD2016.

Contact person: Eva Bearryman, EURORDIS, eva.bearryman@eurordis.org

EPF is proud of its members’ and their work. We are delighted to feature one of our 67 member organisations on our blog and share their successes and achievements. This month we interviewed Jana Moravcova, Advocacy Officer at the International Federation of Spina Bifida and Hydrocephalus (IF), just elected as EPF member in March!

1. What’s on the top of your agenda?

 Our three strategic objectives for 2015-2017 are primary prevention of neural tube defects (NTDs) and hydrocephalus; the right to health and access to healthcare; as well as building a strong community of persons with Spina Bifida and Hydrocephalus (SBH) and their families. In the European context we focus on advocacy for right to health of persons with SBH and empowering our members through workshops, webinars, and community building.

2. Why does your organisation exist?

 IF exists to make the voice of people with SBH heard, to advocate for their rights and to consolidate a strong supportive network of persons with SBH, their families, caretakers, healthcare professionals, researchers, etc. IF aims at building the capacity of its members on human rights and the Convention on the Rights of People with Disabilities (UNCRPD). We also support our members with projects and advocacy and representing them at European and international levels.

3. What is your biggest achievement as an organisation?

 IF’s fast-growing expansion in Europe and beyond strenghtened through community building activities, workshops and international conferences is a big achievement for us. It shows that IF responds to a need from the community and gives us a chance to improve access to healthcare of more persons with SBH.  Also, the work of IF in developing countries brings new insights into care in the developed world.

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

 We expect to have a stronger and more coordinated voice on health policies and issues related to care and involvement of persons with disabilities. Their empowerment is a key area for us as we want to make our members – persons with SBH and their families – stronger and more confident self-advocates. IF is also a member of the European Disability Forum, which enables us to work on the promotion of rights for people with disabilities from a human rights’ perspective, while EPF focuses on public health and social care for patients. Our membership in EPF and EDF are complementary.

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

 IF advocates for primary prevention of neural tube defects through mandatory food fortification; we do not consider abortion a form of prevention. Food fortification with folic acid is the only primary prevention method that reaches all women of childbearing age and according to statistics reduces the incidence of SBH affected pregnancies.

On 19^th and 20^th March, the EPF Youth Group gathered in Brussels for its two-day Spring Meeting to discuss key issues, such as capacity development, preparatory work for the Roundtable on Transition to Adult Care and for the Youth Group’s participation at the European Youth Event in May 2016 (#EYE2016).

First on the agenda was an assessment of the capacity development tasks implemented in 2015. The Youth Group acknowledges the advancement and how they feel stronger and self-aware but also took the opportunities to share their views on weaknesses, such as the commitment of members, plus how to be more active and engaged with the EPF in general. The Youth Group identified some concrete actions to enable a better involvement of current and new members.

The discussion moved onto the key topic for 2016: Transition to Adult Care. The lack of information and guidance from healthcare systems, young patients being undermined by healthcare professionals, the risk of discontinuity in adherence to treatments and the sense of the unknown and feeling scared by change were just some of the common themes debated in the room. The Youth Group acknowledged the consultant-patient relationship and diagnoses can differ greatly in adult care compared to children’s care. They stressed there is still lack of legal and financial framework for transition, where clear leadership and the role of a Transition Coordinator need to be defined. Local patient organisations would also be more involved in the transition process, together with the need for peer-to-peer support and specialist care for young patients.

Finally, the Youth Group considered their plans for the European Youth Event – a unique platform to exchange ideas and perspectives on youth-related issues – which will take place from 20^th-21^st May at the European Parliament in Strasbourg. They will be hosting their own workshop in cooperation with the European Multiple Sclerosis Platform titled, “Young Patients: Ready, Brilliant and Able to Work”, which will aim to challenge expectations and change attitudes of employers who view young people with chronic diseases differently.

Contact persons:

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

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

On 21^st March, the Youth Group conducted a roundtable on transition from paediatric to adult care, attended by representatives of patient organisations, health groups, as well as healthcare professionals and delegates of Member States.

The objectives were to raise awareness of the challenges and potential pitfalls that young patients face when transitioning to adult care, to contribute to building a safe support network and to highlight best healthcare practices for the transition process.

The day kicked-off with a role play to show young patients’ perspective of transition and the problems they may encounter. This was followed by a sequence of presentations sharing real-life case studies and project findings on moving into the adult healthcare system, including:

• Models of Child Health Appraised (MOCHA) – an EU-funded project into child health systems in Europe, with a focus on children’s rights;
• The Milestone Project – an EU-wide study on managing the link and strengthening transition from child to adult healthcare for young patients with mental health conditions;
• Anna Zaghi – a member of the EPF Youth Group, who spoke about an Italian pilot project on transition for young people with diabetes;
• The European Society for Paediatric Oncology (SIOPE) – a perspective on transition in paediatric haemato-oncology.

It was apparent that there were similar issues facing young patients when transitioning that need attention, such as the lack of resources and for healthcare professionals to play a bigger role in the process. Young patients want to be considered as whole persons, not just a diagnosis. To this end they should be encouraged to be more empowered and self-manage their condition, whilst healthcare professionals should have a more holistic approach and be trained to better communicate with young patients facing the transition process. What’s more, there should be a greater emphasis on primary care and prevention as well as standardising the responsibilities of Transition Coordinators, profiles that are not often in place in national healthcare systems. The role of coordinators would be to centralise information about young patients in transition to adult care and facilitate a smooth process.

Report and recommendations on transition to adult care will be shared and made publicly available on the EPF website.

Contact persons:

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

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

March 2016 saw the launch of a brand new festival in Scotland, Declaration Fest, exploring health and human rights. The festival was led by the Mental Health Foundation, in partnership with NHS Health Scotland, the Health and Social Care Alliance Scotland and the Centre for Health Policy at Strathclyde University.

The lead Scots organisations on mental health came together as part of Scotland’s National Action Plan on Human Rights (SNAP), and the programme was based around the SNAP themes of Better Culture, Better Lives and Better World. With the aim to build upon Scotland First Minister’s vow to ‘do even more even better on incorporating human rights in Scotland’, the consortium is part of an on-going commitment to the right to health and social care in Scotland.

The Declaration festival took place at the Centre for Contemporary Art (CCA) in Glasgow with 30 events over 4 days – a mix of film screenings, performances, debates, workshops and provocations – each one inspired by one of the 30 articles in the 1948 Universal Declaration of Human Rights. Audiences at events were diverse, with people attending from key organisations and academic institutions as well as individuals with a passion for human rights, including artists and activists. The result was an inspiring, uplifting and sometimes challenging long weekend of debate and discussion. You can read reviews of events, listen to podcast and more at www.declarationfest.com.

The Mental Health Foundation also leads the Scottish Mental Health Arts and Film Festival, an annual event taking place throughout Scotland each October aiming to support the arts and challenge negative perceptions of mental health. In 2016 the Festival is celebrating its 10th year. Find out more at www.mhfestival.com.

Contact: Gail Aldam, galdam@mentalhealth.org.uk

‘Together Under the Umbrella’ is the new campaign of our member the European Federation of Neurological Associations (EFNA). It aims to raise awareness on the range and prevalence of brain disorders. Quick!, let’s get under the umbrella here.

The human brain is a complex and magnificent organ. Our brain gives us awareness of ourselves and of our environment, processing a constant stream of sensory data. It controls our muscle movements, our breathing and internal temperature. Every creative thought, feeling, and plan is developed by our brain.

At the same time, the human brain is also the origin of many chronic and disabling diseases that have a huge impact on the lives of people affected by them. Brain disorders – including developmental, psychiatric, neurodegenerative and pain-related diseases – represent an enormous disease burden in terms of both human suffering and economic cost. Brain disorders affect at least one in three people during their lifetime – currently 165 million people in Europe.

‘Together Under the Umbrella’ is an innovative campaign which aims to educate society on the range of brain disorders and the number of people affected and to raise awareness of the impact and prevalence of these conditions. The colourful website http://undertheumbrella.eu/ is a hub featuring information, resources and ideas of ways to get involved.

The campaign is in response to demands by EFNA’s members to ‘brand the brain’ by grouping all brain disorders under a common symbol. Ahead of the launch on 15 March EFNA invites your organisation to sign up to support the campaign: http://undertheumbrella.eu/sign-up/

A second action, which will only take a moment for those of you who already active on Twitter, is to sign up to the Thunderclap Tweet: http://thndr.me/VWH57P   This will activate the following Tweet: “I’m getting #UnderTheUmbrella to raise awareness of brain disorders.’’ And if you do use Twitter the hashtag is #undertheumbrella with the following slogan ‘1 in 3 Europeans fit under the umbrella – do you?’

Together Under the Umbrella aims to lead to an increase in public, political and scientific support for all brain and brain-related disorders, resulting in reduced stigma. The campaign asks you, the patient community, healthcare professionals, the general public, and high profile figures to take and share a picture of themselves under an umbrella using the hashtag #UnderTheUmbrella.

The European Federation of Neurological Associations (EFNA) brings together European umbrella organisations of neurological patient advocacy groups, to work with other associations in the field of neurology.

This is my first blog post for EPF, and I am thrilled to be able to share my views with so many dedicated readers.  As a physician, a scientist and a breast cancer patient myself, I hope to provide an unusual perspective, in that I can speak from all three points of view.

I believe in being straightforward with my patients because I know they can handle that. I understand the impact cancer diagnosis can have to people, their families and friends, but I remain convinced that patients are always better off well informed. Informed patients are more likely to have trust in the medical profession which leads to a more honest and solid relationship with their health professionals and are able to better handle the side-effects caused by the cancer treatment. In addition, it increases the quality of life during treatment and reduces the costs as unnecessary visits to the doctor. Well informed people are also more likely to take more responsibility in staying healthy and prevent diseases, which is increasingly important in an ageing population.

Patient involvement and empowerment means moving from being just part of a problem, to becoming part of a solution. This is highly connected to the new General Data Protection Regulation that will be adopted in the next days by and will affect how researchers may use patient’s data for large register-based research. A common reaction from my patients after they received their cancer diagnosis – and that I felt myself – is the strong will to contribute to help others. “Can the findings from my case, and the cases of millions of others, be of use to future patients? Can new treatments and better care be developed from what researchers can learn from my illness? Then do what you can, use my data to help others” – that is the sentiment.

Patients want to share data, we want to be a part of research and medical improvement, and we want to minimize the risk of our children having to go through the same diagnosis. And if they do – we want them to have improved treatment and improved chances to survive!  We want to be part of the solution. If you share this belief and want to support it, I recommend that you have a look at the data saves lives website and get involved!