STAND ON YOUR OWN

Adult MPS patients meeting

Report of the October 2018 Meeting

The first Adult MPS patients meeting was held on 4th and 5th October 2018 in Maritim hotel Gelsenkirchen, Germany. The goal of this meeting was to encourage adult MPS patients to be independent – stand on their own. This goal was achieved when adult MPS patients exchanged their experiences of living in different European countries and proposed solutions for improving their own lives. MPS Europe provided 20 fellowships for adult MPS patients to participate the meeting. The fellowships covered travel costs, accommodation, transfer and meals. Participants age range was between 17 and 53 years from 8 different European countries.

The agenda included following topics: Living with MPS: what does a chronic disease mean for me? Vacation with or despite MPS, Living in Europe: put needs and expectations together, Working groups on different topics: education and employment situation, access to medical care, medicines and medical devices, social and psychological help and support, Raising the adult patients voice. Sessions were in English and translation to German was provided.

Vacation with or despite MPS was moderated by Dr Christina Lampe. Vacation planning was presented by Nadia Minopoli, a healthy young adult and we saw presentations from Simon Bond, MPS patient without physical disabilities and Maria Prähofer, MPS patient with physical disabilities. During this workshop we tried to answer following questions: What difficulties or concerns adult patients may face or have while traveling to a foreign country? What positives are there? What should be taken into account while planning a trip? Medical planning: ERT and vacation? Issues regarding cross-border healthcare

Session Living with MPS: what does a chronic disease mean for me? was held by Andrea Nenadic, social worker and Gestalt psychotherapist under suppervision. Workshop lasted for two hours, which included introduction, expectations, presentation of speaker and patients, exercises, discusion and questionnaire in the end.
Main goal of this session was support and encouragement to patients to express their needs and present them in the group. Through exercises (rope and how do we create relationships in our life, and painting of our self-confidence/support) attendees were able to create safe environment and expose themselves. They were sharing how they deal with chronic condition, what are their vulnerabilities and capacities. One of the participants brought up his fear of death which opened group to speak more about common fears. Participants were interested in sharing with others, they were listening carefully and connected their experiences with others that affected to group dynamics to create stronger network. In the end of the workshop, attendees filled up questionnaire for mapping the needs. The survey contained possible services for patients in the field of psychological and social support. Patients are interested in individual face-to-face counselling, workshops and lectures on different topics and also in peer support groups, online platforms, activities for stress relief and making friendships through painting, music, reading etc.

Conclusions:
• Being physically challenged can cause concerns and anxiety when needing to get from one form of transport to another or a connection, especially if you can’t speak the language.
• Private accommodation usually isn’t equipped for those who are physically challenged.
• National Contact Points (NCP) have good information online but it takes a long time to find it and because cross-border healthcare laws are changing all the time and the people you contact at the NCP don’t know the law changes themselves. This information needs to be clear and concise so that all parties can inform themselves. Only a portion of it is easy to understand.
• Systems are in place that make travelling easy for us and we must use them, not just for our enjoyment but also to help them improve. Without our input nothing will change overnight.

Session Living in Europe: put needs and expectations together was led by Marija Joldic who presented an overall situation in Europe. There are differences between European countries, unequal access to healthcare, education, employment, social and psychological support services. Gaps within the same country exist (i.e. capital cities/university centers in comparison to rural and remote areas). But one thing is common to almost all countries: a lot depends on the will and enthusiasm of individuals. National MPS Societies are very active, strongly involved and have high impact on changes in the MPS community.

Young adults Jibreel Arshad, UK and Barbara Mamatis, Greece first shared with the group their personal experiences. Then all attendees had opportunity to give their inputs on the topics and share in small groups their personal experiences and challenges. After two hours of discussions these are the conclusions:

Healthcare:
Education:
Employment:
Social and psychological help and support:

At the end I want to express great gratitude to all adults who participated at our first Stand on your own meeting and to all National MPS Societies that gave support to this event. A very special thank you to MPS Germany for immense help and support in organisation.
Positive feedback from participants and wishes to be more actively engaged in MPS Europe activities are higly appreciated and give direction on how to meet their needs in the future.

If you are an adult affected with MPS disease and are interested in our activities, send an email to office@mps-europe.org to receive latest news from MPS Europe.

Looking forward to our next meeting in 2019!

Marija Joldic
MPS Europe
October, 2018