EASO Patient Council: Interview with Alexandra Fraisova

Alexandra, tell us a bit about the organisation you represent in the Czech Republic.

I represent patients of the Czech Republic via the organization STOBklub which is a patient organization of and for people with weight management challenges and those who strive to live healthier lives. STOBklub is a patients´ platform of the original STOB, Stop Obesity organization. We offer a community webpage with various tools for weight management, like listings of nutrients for individual meal planning, recepies, activity counters, and also psychological and coaching advice in a friendly community of like-minded people. Through this organisation, our users can find advice, help, support and also friendship and help from other members. We can assist them with practical and expert advice.

www.stob.cz
www.stobklub.cz

I understand that you have developed an interesting series of workshops recently which are of interest to both individual patients and health care practitioners. Can you tell us about this?

Of course. For some time, we have offered workshops, talks and presentations for our members, for specialists and for the general public too. We conduct two types of workshops: a shorter, evening event with one or two presenters who speak about a very specific topic. Recently, for example, we had a presentation on how to manage stress without eating more – where we talked about other ways of dealing with stress, relaxation techniques were demonstrated and audience members had a chance to experience these tools first hand. I discussed how planning, through daily plans, meals, organising consistent exercise times – can minimize stress in everyday life. We also offer one and day two day workshops which include expert presentations.

In February, there were two very interesting meetings. The first one focused on how to chose food products – what to buy, how to read labels, what to look for on labels, which foods are healthier than others. The second workshop covered the theme of the inevitable weight-loss plateau and what to do when it occurs: changing patterns, changing foods or ways of preparing food, taking a “holiday“ for a week – even if it´s only in your mind and you just stop controlling everything for couple of days. I know that one of the important EU projects EASO is involved in is researching tools for weight-loss maintenance and it will be interesting to follow this research and feed it into our work.

For March, there are very interesting topics planned as well. First, we will hold a workshop for specialitsts, nutritional advisors and therapists on how to work with their clients. We will cover how to speak with new clients, how to help them to make their first changes, how to understand their degree of motivation and readiness for change, and how to work with people through the weight plateau and in their everyday lives. The second workshop is open to the public and the theme is how to prepare a suitable meal plan: what it should consist of, the types and amount of macronutrients should be in the daily diet and how to develop a meal plan for weight-loss and for weight maintenance – and healthy living.

These represent just a few examples of programs we have developed for the winter.

Do you have any upcoming conferences you’d like to share with us?

Yes, indeed. On April 24, we will open a conference Dialogue for Health II. This is the second conference of this type, the first one having taken place last October. And the topics where identified by our members and include discussion of palm oil, beer, aspartame and other artificial sweetners, detoxification, and nutrigenomics. We will have some highly respected experts and specialists discussing these topics, including a biologist, biotechnologist, nutritional therapist, chemist, and medical doctors. The conference is meant to be a meeting place for discussion by specialists and is open to the public as well.

I understand that in addition to focusing on food and healthy nutrition, your organisation is very interested in physical activity and weight loss maintenance. Please tell us more about this.

Physical activity is a very important part of healthy living, not only of weight loss or maintenance. As a dancer and a personal fitness trainer, I believe we should all be physically active – according to the ability and health of each individual. Exercising, even if only in the form of regular slow walks, helps tremendously in every aspect of your life. And people who are active physically are more active in their life as whole; this is my experience.

We offer not only tools for weight loss but tools for living a healthy life. We teach people how to eat, what and when, we´d like them to move, to relax, to sleep, simply put to enjoy life and be healthy. For the average overweight person it is not that hard to lose weight per se; it´s far more difficult to maintain that weight loss and to remain healthy. And that is our main goal – to help people become healthy. If they want to lose weight, good for them and we help with this too. But not with some drastic diets or drastic caloric restrictions.

We work with a cognitive behavioral therapy approach, which means that we teach people how to behave differently and live more healthily this way. That´s why we offer them materials and tools for stress management, for exercising, for learning healthy thought patterns, how to see their body, how to learn to love their body no matter the size so they can move toward health. They can use our blogs with advice or various fun competitions and plans with individual ‘tasks of the week’ (drinking more water, sleeping 8 hours each night, working up to walking 10,000 steps a day…expert articles on our webpages www.stobklub.cz, provide materials ready for participants including: booklets, books, e-magazine Pochutnej si se STOBem (http://www.stob.cz/cs/casopis-pochutnej-si-se-stobem).

Recently we prepared new materials for health practitioners as well which can help them identify the degree of motivation their patients have to lose weight and live healthier lives – and those materials can help them find out in which particular ways their patients need help the most, whether that means help with an exercise regime, healthy eating, more relaxation and so on. Practitioners can then offer their patients a booklet addressing the most appropriate topic and those patients can begin to work on these issues. In our community we provide help them according to individual needs.

As we all prepare for European obesity day on May 21, 2016 can you tell us about your strategy and plans?

This year, we have a very special project ready. As we want people to be active and are interested in inspiring them to move and exercise, we made new counters for our web page. This new application (app) counts steps (walked or run), kilometres travelled via bicycle (stationary or outdoor) and minutes of active exercising daily. We want our users to compete with themselves and try to improve every day. And we are really interested in finding out how many kilometres could be walked, run, and cycled by our members through May 21 – that is in a three-month period which more or less corresponds with our longest program of change – 12 weeks. We´ll keep you all updated with the results!

EASO Patient Council: February 2016

EASO is pleased to shine the spotlight on the Patient Council representative from Belgium, Elly Jeurissen.

Please tell us who you are:

My name is Elly Jeurissen and I am the Belgian representative of the EASO Patient Council.

Tell us about your county and where you live:

Belgium is a federation. I live in Flanders, the Dutch speaking part of the country, which is in the north. Belgium is a small country, and health care is split according to the communities, which are language based. Belgium has three communities which are Dutch-speaking (about 60%), French-speaking (about 40%) and German-speaking (0.7%). Generally, these are in the North (Flanders), South (Wallonie) and far East (German-speaking). Brussels is bilingual, French-Dutch, but nowadays there are many foreigners living in Brussels and English is spoken there by many. I live in Leuven, one of the oldest University cities in Europe. It is a city with an old centre, and everything within walking distance.

Please share some of your favourite things (activities, hobbies, interests).

I like to read, both fiction and non-fiction. I am handy with the computer, having used a computer for over 35 years now. Yes, I started very young. I also like to design and sew my own clothing, partly out of necessity, because I am both short and fat, and that combination means that my clothing needs are not served at all in the Belgian market. I like music, classical and classic rock and listen to audiobooks and podcasts. I do suffer from a lack of time once in a while…

What is your profession?

I am a statistician and have teaching certificates for both mathematics and computing science. I choose to do substitute teaching, which gives me flexibility, so I do not work all the time. I am also a published author of a book published in 2002 in Dutch ‘Rondom Dik’ together with Mieke van Spanje, who is also on the Patient Council.

Can you tell us what your experience of obesity has been:

I was not fat as a child. As a student, I first started to diet for weight loss, at first only 3 kgs, but because I gained more weight than I lost with each weight loss attempt, that quickly turned into efforts to lose 5kg, 10kg, 15kg… and I started to develop eating habits that are considered disordered eating. After many “health teas” and my first attempt to regurgitate, I sort of woke up, and decided that losing weight only to gain an eating disorder was not a healthy option. Thus about 20 years ago, I decided not to undertake weight loss diets anymore.

Following this decision I did gain more weight, as I needed to learn to eat in a normal way again, but I stabilised and maintained that weight for a number of years. Then I became ill, and gained a lot of weight, due to both the illness and a total lack of energy to engage in physical activity.. After I regained most of my health, I worked on my physical condition, and then slowly lost the extra weight again. As I also had lost my sense of boundaries for what healthy food was, I used the help of a professional dietician. The resulting change to healthy food and more movement did lead to weight loss. Because of my history of disturbed eating, I did need to be careful not to develop an eating disorder again, and the dietician worked with that. Part of that is phychological, so we focused on health, not on weight loss. Weight loss can be, and has been a result, but it was never the focus goal. Health was and still is.

I have now reached a sort of stable weight, where I can vary a few kgs up or down, but need not focus on the weight to stay within these boundaries. I keep focussing on healthy eating; as we know, the current food environment provides many ways to get calories, but not so many ways to get healthy food if you are in a hurry, on the road or have no time to cook.

One frustration I have is that, while the ‘goal’ for weight-loss is 5-10%, and I have lost more than that, almost every new health profesional I meet wants me to lose weight. And it is very hard for me to get them to discuss the science with me.

Please share your reflection on the ECO2015 in Prague and hopes for the the upcoming EASO Congress, the 2016 European Obesity Summit:

The ECO2015 was my first meeting with the Patient Council, and I was happy to meet everyone. We made some good plans, and the Steering Committee of the Patient Council is working hard on those. For the upcoming European Obesity Summit I hope to meet some people from BASO, the Belgian member organisation of EASO, and get to know some of them. I also look forward to the plans of the new leadership.
How do you currently advocate for patients and hope to advocate for patients in the future?

I mostly read and react on publications. I try to summarize interesting scientific literature I come across for the Patient Council and I write letters to newspapers and journals if they misrepresent fat people or use inappropriate ‘headless fatty’ photos.

At the moment there is no organisation for people in Belgium or Flanders with overweight and obesity. I am not the right person to start such an organisation but will support anyone wanting to organise and develop one.

Festive and healthy food: an interview with Patient Council member Sólveig Sigurðardóttir

Patient Council Steering Committee member Sólveig Sigurðardóttir was interviewed on 29 November by the Icelandic National Broadcasting Service – Ríkisútvarpið, or RÚV for short, which is an independent public service broadcaster, comprising television, radio and online services. The main objective of the National Broadcasting Service is to inform, educate and entertain, and Sólveig’s interview did all of these things.

Solveig discussed her life story and her journey to health, which includes tackling her own MS diagnosis, along with her personal development and new lifestyle, which sees her as a leading light in the Clean Eating Movement – in Iceland and beyond.

Working with Doctor Erla Gerður Sveinsdóttir, she helps people improve their lifestyle, which includes support and training around how to prepare – and enjoy -whole, healthy food, which is a key antidote to yo-yo dieting.

Photos of Sólveig’s gorgeous food is above; a link to the radio interview is here:
http://www.ruv.is/node/971787

The 3rd Bariatric Rehabilitation Congress, Copenhagen, November 2015

IMG_3585It was my pleasure this week to attend this conference in the capital city of Denmark. I was greeted by a sign at the airport reading ‘welcome to the world’s happiest country’; all my experiences confirmed that this is true.

One of a few non-Danish delegates, I was made to feel extremely welcome at the meeting. Breakfast was served in the registration area. A glance through the attendees list revealed a good multi-disciplinary mix of professionals; a majority were nurses and occupational therapists.

There was a small exhibition area consisting primarily of moving and handling products designed to assist medical staff when lifting heavy patients. I confess that as an former user of such products I didn’t study them and found the spectacle of the exhibition mildly traumatic.

Following the congress leaders’ welcome, the first presentation was an interesting account by a professional chef who had a gastric bypass. He is now a successful author and TV personality. He did not speak much English; a helpful English summary was presented at the end of each slide. He presented along with his dietician, and although I didn’t understand him, it was clear that he spoke with humour and his talk was well received.

After the break, I encountered one of the challenges inherent in a bilingual conference. Speakers had cancelled and changed rooms and I found myself in a Danish language lecture on Obstructive Sleep Apnoea. The speaker’s slides were in English, and he did a good job of explaining diagnosis and treatment, the relationship between sleep apnoea and obesity.

The next talk was by Sidsel de Vos, a psychologist, who gave an excellent talk titled Treatment Plans for obese clients with over-eating plans recommended by the psychologist. This talk opened my eyes to a different perspective.

Sidsel gave an excellent talk, highlighting the broad constellation of eating disorders and the inappropriate but common fallacy of advising simple diets for patients who suffer with complex eating disorders. I had a chance to ask about undiagnosed and therefore untreated binge eating in bariatric surgery patients.

After a delicious traditional Danish lunch, I attended a presentation by Marie Howard, an Occupational Therapist from Ireland. Her talk was entitled An exploration into the impact of obesity on the daily occupational participation of adults attending an Irish weight management clinic.

This excellent talk was greeted with loud applause for shining a light into less-discussed areas of life for obese people. In her research she had looked at work, leisure and sexual functioning.

IMG_3584The following day started with an excellent talk from Valerie Taylor about the The impact of Mental Illness on functioning in Bariatric Patients.

She spoke at length about the link between the two diseases and covered the weight-gain effects of psychotropic medication. I had the opportunity to ask about addiction transfer post bariatric surgery. Her talk should be recorded and distributed; it was excellent.

I then attended another lecture about sleep – this time from Icelandic Psychologist Erla Bjornsdottir. She focussed on Obesity and Sleep disorders. I have been reading a lot in the literature recently about good sleep hygiene recently and Erla gave an enlightening and captivating address.

After another good lunch, I shared a great discussion with three Danes, 2 Occupational Therapist and a nurse. about professional issues as well as cultural differences.

After lunch, Janet Hope, Director of Ausbig http://www.ausbig.com.au shared great insight into the work that she had been involved in setting up an equipment service that gives dignity to larger people. The network she created has grown into an international organisation.

The final lecture I attended was by Professor Björn Richelson who gave an insightful account of national and international perspectives on bariatric surgery. Outlining both positive and negative effects of surgery, he left it with us to decide whether Bariatric Surgery is a good thing or not.

In conclusion, this was an excellent conference in Copenhagen. Many thanks to Novo Nordisk for supporting my attendance through EASO.

Ken Clare,
EASO Patient Council
Steering Committee

EASO Patient Council: November 2015

Vicki, please tell us a bit about yourself.

I’m Vicki Mooney and I’m the EASO patient council representative from Ireland.

I’m a 38 year old divorced mother of 3 beautiful children. I am very proud to own and run Irelands only Plus-Size Modelling Agency, promoting body confidence and a healthier lifestyle and body image to all women. I am also a dynamic motivational and inspirational speaker-which is where my real passion lies. As a regular panellist on Ireland’s mid-day television programme which discusses day-to-day events and topics within Ireland, I have lots of experience in the media.

Having published my first book ‘Curve-a-licious’ in 2012, I’m currently writing my second book, which focuses primarily on life as a larger lady with mental health issues and obesity in today’s society.

My Dip in Psychology and Therapeutic Counselling, has provided an inner strength for the work I do. It has also given me a more in-depth understanding and awareness of my own mental health and obesity struggle.

I’m originally from Dublin-the capitol city of Ireland, with a population of 1.1 million out of a country-wide population of 4.8 million. However I reside now in a quaint town named ‘Kilcullen’ in Co. Kildare with my children and pets. I lived rurally for 15 years in the Kildare countryside which was quite beautiful but socially and physically had little to offer someone of my temperament and sociability. Moving to Kilcullen this year has led to a remarkable improvement in my overall health.

Please share a few of your favourite things with us, including activities, hobbies, interests:

I’m a lover of reading, and particularly enjoy 18th century and early 19th century novels. I thoroughly enjoy mediating and yoga. I love to swim as I find it’s so incredibly therapeutic and adore all genres of music from classical to Italian soft rock, to Irish traditional.

My nerdy side is a lover of astronomy and meteorology.

My interests and passion are about empowering people and changing negative ways of thinking which affect so many people from the older generation down to the youth of today.

I’m a firm believer in making a difference in the lives of people through sharing my own experiences and providing openness on taboo subjects such as obesity and mental health.

What has your experience of obesity been like, Vicki?

I have always been overweight; in fact as I went through puberty I was the same age in years as I was in stones. I.e. 15 years old – 15 stone (95kgs/210lbs) 20 years old – 20 stone (126kg/280lbs) and by time I reached the age of 28 I was 28 stone in weight (180kg/395ibs).

My obesity issue lay with the emotional overeating I did as a child which became a negative learned behaviour as I grew into an adult. When life was hard growing up, I comfort-ate to fill the void I felt inside and also to distract me from the bad experience.

This soon became a daily habit, and I found myself comfort eating sweet foods, which I had psychologically convinced myself that I felt better after eating. This was not actually the case.

At this time, I gained 1lb on average per month of my life.

As a young woman with a massive obesity issue I was frequently bullied and ridiculed. The side effect of this was a vicious circle in which I then ate to feel comfort… which in turn made me gain weight and the circle continued.

Living with obesity was and still is challenging. I had no quality of life outside my home which I shared with the man who was then my husband, and our 2 young children. I was ashamed of my physical appearance and felt I had such an incredible amount of weight to lose that I could not possibly know where to begin.

I joined various weight loss programmes such as Weight Watchers, but after a bit of success I would regain what I had lost. The reason for this was quite simple. I hadn’t dealt with or learned how to cope with my emotional eating and the psychology behind my weight.

Pregnancy with my 2 children was quite frankly horrendous. I suffered with pre-eclampsia, gestational diabetes, Symphysis Pubis Dysfunction amongst other complications during labour, which resulted in one emergency caesarean section.

As a very overweight woman, I had no self-esteem nor did I have a positive way of thinking. I was clinically depressed and felt there was no way to treat my weight problem, for which various antidepressants were of no help, due in part to the fact that they caused weight gain…

In 2004 at 27 years old I attended my GP who wrote to the weight management clinic in Dublin. 18 months later, following monthly visits to the multi-disciplinary team there, I had a gastric by-pass surgery (Roux-en-Y).

Within 14 months I had halved my weight from 28 stone (180kg/395lbs) to 14 stone (90kg/200lbs). I then became pregnant with my daughter and had a perfect pregnancy.

However, as a bypass patient I never once realised that the operation wouldn’t ‘fix me’. The bypass wasn’t the silver bullet I had hoped. I didn’t realise an entire lifestyle change was required, not just for me but for my entire family. I didn’t realise how much the bypass and dramatic change in losing 14 stone in weight would do to me psychologically as a young woman.

Unfortunately aftercare in Ireland’s weight management system doesn’t have the back up a patient requires. The multi-disciplinary team simply do not have enough support and funding from our government to provide appropriate aftercare and ongoing support.

Due to not losing enough weight, I didn’t qualify for corrective loose skin surgery so I have been left ‘half finished’ in a way – which is quite demoralising as a now 38 year old single woman.

However I have only regained 4 stone (25kg/56lbs) over a 10 year period which is certainly spells success in my eyes.

Living with obesity is a daily struggle and something I have a constant awareness of and am constantly reminded of – from before my feet touch the floor in the morning, until I close my eyes last thing at night.

Please share your reflection on the ECO2015 and hopes for the EOS2016:

The ECO2015 in Prague was a tremendous success for the Patient Council in many ways.

It isn’t often that the patient voice is heard in scientific settings, and more importantly, acknowledged by such a dynamic group of professionals with the same goal. Having this platform available and to be able to speak with so many healthcare professionals has been a major opportunity for the Patient Council. The way the Patient Council was received at the Congress was nothing short of marvellous.

Moving forward, my hope for the EOS2016 in Sweden next June, is that we as a European Patient Council, have a larger stage and voice through which we can open doors to working more closely with all involved stakeholders.

How do you currently advocate for patients, Vickie, and how would you hope to advocate for patients in the future?

In September 2015, I travelled to Brussels to participate on a panel of the meeting session ‘policies to prevent obesity-related chronic diseases’ during the EPHA Annual Conference 2015, which was hosted by Medtronic and supported by the International Diabetes Federation, European Region.

Feedback I received suggested that my participation contributed to a lively and high-quality discussion and really provoked thought on the complex issues of obesity. It was wonderful to hear that the EPHA greatly look forward to an opportunity for future cooperation with Patient Council speakers.

In addition, I attended an EASO Roundtable on Obesity in Brussels on October 13th which was chaired and moderated by former MEP, UK Minister for Health, and British MP, John Bowis.

At the event, almost 30 stakeholders took part in a comprehensive and thoughtful discussion. Participants included medical professionals, advocacy organisation directors, health care providers, European politicians, and leading European organisations.

I presented to the group on the patient perspective, making the point that treatment is a step in a larger lifestyle change and can not be seen as just a one shot fix. It is clear that there is an opportunity for Patient Council members to help healthcare professionals and policymakers better understand what patients are going through by sharing their unique perspective and experiences. I also raised awareness within the group of the importance of changing the messaging from ‘losing overweight’ to ‘becoming healthy’, which will help raise awareness of both comorbidities and essential lifestyle adaptations necessary to support patients in moving toward health.

Patient Spotlight Report: Icelandic Television Focus on Obesity

Solveig Sigurdàrdottir

Last month I joined two other women in in a powerful television programme on Icelandic station Hringbraut hosted by well-known and popular Icelandic TV presenter Sirrý. The program show is called “Fólk með Sirrý” and the theme for this particular show centred on obesity and how we may help others overcome their weight challenges.

The three of us have independently worked very hard toward becoming healthier, and together we lost an incredible 140 kilograms.

Jóna Hrönn Bolladottir is a well known and popular priest here in Iceland. Her discussion on the programme centred on the impact that stress has on body composition. She decided to take a sabbatical and on her study leave changed her lifestyle. She returned a new woman!

Ester Helga Guðmundsdóttir was on the programme representing the Icelandic board association for people who work with overweight and food addiction. She has achieved great success with her own weight issues and has helped many others in the fight to loose weight and regain health.

And then of course, I was happy to have been invited to participate I have changed my lifestyle by going in a positive direction with food and nutrition. Exit strict diets and regimens and enter a focus on healthy options available with fresh clean food -which enabled me to start enjoying my life. My world has been transformed by eating healthy clean food. And by going for walks and taking exercise – using the gym is great but it’s wonderful just to move! A major part of all of this has been my effort not to breaking my self down and start to build my up. And to respect my self no matter what my weight is.

The TV presenter is very well known and it was great to be a part of this show. The programme received good ratings and people have been very positive about it.

The full show from TV station Hringbraut on 9.10.2015 is available for download here:

 

Patient Council Spotlight Report: Judit Pettkó

The 5th Central European Congress on Obesity (CECON) was held from 1-3 October in Budapest.
I was proud that this conference was organised here in my country. I strongly believe that we have to take every opportunity to learn about the latest scientific research and evidence in obesity and and understand and share the practical initiatives which can help us manage this serious health and health-care problem across Europe and around the world. The Central European countries struggle with similar problems and limited options for funding of treatment and prevention efforts. Because of this reality, the results displayed in the presentations were particularly inspiring for all participants.

During these three days, we were able to hear not only the presentations of well-known and early career scientists, physicians, health professionals and nutritionists from Central European countries (including Hungary, Czech Republic, Croatia, Italy, Poland, Romaine, Slovakia, Turkey and Ukraine), but from other countries too, including Australia and Japan.

The lectures provided a comprehensive picture of the state of play in obesity research and clinical practice, and showed the role and importance of prevention strategies and the options and possibilities of health care policy in tackling the growing obesity pandemic as well as managing individuals and communities affected by obesity.

In addition, some new initiatives were presented and described in detail, like the EPODE methodology – an international programme which started last year in Hungary – the Salto Project in Salzburg and the Multilevel Psychological Approaches to Weight Control initiative, held in the Department of Clinical Psychology. I think these new programs are excellent and hope that they will scale-up across the entire country. This would be very helpful in supporting Hungarian patients to identify the best clinician and care pathway for weight management and maintenance and ultimately support their health.

5 Key Propositions for GPs

Focus on communicating with and motivating your patient. Communication and motivation are key to any productive relationship between doctor and patient, and is particularly important with obese patients. Motivational Interviewing (MI) is an appropriate, efficient technique to help patients with lifestyle changes. It is patient centred, respectful, free from judgment and provides full empathy. With open questions and valorisation, GPs will then be able to help patients identify and work on their issues, express his or her suffering, and define his or her own solutions.

No stigmatisation. GPs must not stigmatise, whether related to gender, ethnicity, religion, socioeconomic status or personal morphology. This is important for all obese patients and is particularly crucial for children and adolescents, who are stigmatised at school, resulting in a tremendous amount of suffering.

Empower the patient to become his own specialist. The GP should encourage and support the patient to identify and select the areas in which he will be willing to work and in which he is capable of successful behaviour change.

Physicians should be educated in specific psychological aspects relevant to obesity and should investigate psychological aspects with the obese patient from the initial consultation. Continuing education can provide GP training. The GP must look in particular at eating disorders and depression, and should also work with patients on self-esteem, self affirmation and wellbeing. Where appropriate, adjunct psychological support should be engaged. This proposition will also apply to working with children and adolescents.

Physical Activity is highly important for obese patients. In basic management, physicians should recall that regular physical activity prescription is a key factor in preventing complications, as an active obese patient has a lower risk of premature mortality when compared to a sedentary normal weight patient.

EASO Patient Council: September 2015

Stefanie WirtzHello Steffy, it’s always a pleasure to welcome a new member to the EASO Patient Council. Tell us a bit about yourself:

My name is Stefanie Wirtz – everyone calls me Steffy. I was born in 1976 in Essen, Germany. I work as a dispatcher at the largest marshalling yard in

Europe. A marshalling yard is a large railway yard in which freight wagons are organised into trains. I work near Maschen in the south of Hamburg. I am married and have a teenage daughter.

Please describe your county and where you live:

I live in Germany, just a few kilometres outside of Hamburg. Hamburg is the second largest city in Germany and the eighth largest city in the EU. It is also the thirteenth largest German state with a population of over 1.7 million people. It is a major transport hub and also a popular tourist destination.

Steffy, please share some of your favourite activities, hobbies and interests:

I like to read and test new baking recipes to relax. When I have time I enjoy participating in sports and gardening.

I love to swim and feel at my very best in the water. My favourite destinations and activities include relaxing with a book on the Baltic Sea beach and autumn hiking through the vineyards in Rhineland Palatinate.

When possible, we visit friends in Hurghada (Egypt).

Please share with us what your experience of obesity has been like:

When I was six years old, my ‘baby fat’ became seen as overweight. Since then, my weight increased more with each passing year. In 2009 I had gastric bypass surgery and became involved and engaged for the time in self-help. With the gastric bypass procedure, I lost 85 kg; I have to work every day to keep the weight off.

In 2013, together with others, I helped found the AdipositasHilfe Nord e.V.

A nonprofit organisation, the group includes self-help programmes which support people experiencing obese and continues to accompany and help them them along their journey.

We “fight” for obese people to receive proper medical treatment in Germany. It’s a long hard road, but we are not alone. We associate with other self-help

organisations. The crucial problem before now has been this: obese people have no lobbying support.

What are your hopes for the upcoming European Obesity Summit in June 2016?:

As I am a new member of the EASO Patient Council I have not thus far participated in ECO events. I look forward to working with other members from across Europe to improve the situation for people suffering from obesity. In the future, I hope to learn from other nations’ experience and am sure my association will benefit from the wide ranging experience from around Europe.

Since 2009 I have supported obese people I work with, using self-help advice and programmes. In September 2013, we joined together with the club (www.adipositashilfe-nord.de) that set up counselling centres for obese people, and so far we support 500 people – free of charge. In the coming years we will focus more attention children and youth. We often start providing assistance and support too late; this should change.

I look forward to meeting and spending time with many new and interesting members from around Europe. So far I am really enjoying the experience.

EASO Patient Council: August 2015

Please tell us who you are:

My name is Angelika Peter, I’m 49 years old. I was born in Bonn (Germany), but I am Austrian. I work as a sales representative for a pharmaceutical company. I am not married and have no children. I studied French and English as a translator but never worked in this job and so I am not accustomed to speaking these languages anymore.

Describe your county and where you live:

I live in beautiful Austria, in Vienna.

Please share some of your favourite activities, hobbies and interests:

In addition to my job as a sales representative, I work as a stylist and an astrologer! This work keeps me very busy and I have little time left for other hobbies.

Please describe what your experience of obesity has been like:

My weight started to go up when I was in my twenties (due to use of the contraceptive pill) and it never stopped going up. Obesity is a problem that also affects my sisters. One of my sisters has had a gastric bypass; another plans to have a gastrectomy next year- I am her role model. I have not had particularly bad experiences with my weight. As a stylist I was able to look good, even with a lot of weight, but I didn’t feel good anymore and I was very concerned about developing serious health problems in my future. My blood pressure was already too high and my blood sugar was already approaching diabetic levels. I tried a lot of diets in my life and began to understand that I needed help – this was perhaps in retrospect the most difficult step for me – understanding and accepting that I needed help to manage my weight.

In 2011 I decided to have a gastrectomy and I have no regrets.

What are your hopes for the EASO Patient Council at the 2016 European Obesity Summit?

From my sister in Germany who plans to have a gastrectomy, I know that German patients have a longer course of nutrional counseling, both before and after the surgery, and it would be great to hear protocols from other countries and discover how other European nations manage their patients. I could then use this information perhaps, to work towards ameliorating challenges in the Austrian system and improving the protocol for patients in my country.

How do you currently advocate for patients and how do you intend to advocate for patients in the future?

Before this time, I only have experience advocating for my German sister, but believe it is crucial to support patients before during and after gastric surgery and look forward to working toward improving support for persons with obesity nationally.