The celebrations of the Dystonia Europe 25th annniversary kicked off with a special lunch event in the European Parliament on 12 April. The 65 guests were welcomed by the Finnish Member of the European Parliament (MEP) Ms. Merja Kyllönen. She explained how she had become involved with Dystonia Europe when she agreed to do a Jump for Dystonia. She did not realise that it would be out of an aircraft! She described it as the most fun you can have with your clothes on! She also said that it helped her to understand how we are all prisoners of our bodies and dystonia patients more than most. ‘We need to look at health gains and socio-economic impacts resulting from best health interventions in comparison with current care, and compare those with no treatment at all,’ she said. ‘We need to map care pathways for the disorder along the whole care process in order to identify the major unmet needs and causes for treatment gaps.’
While a three-course lunch was served there were presentations facilitated by the Executive Director Ms Donna Walsh, from the European Federation of Neurological Associations.
Mr Adam Kalinowski gave the patient perspective on how it is to live with dystonia.
Prof. Maja Relja from the Zagreb Medical School presented the first results of a Dystonia Survey to better understand the situation for dystonia patients across Europe, such as time of diagnosis, access to treatment and quality of life. As answer to the question What was your experience when you first visited your general practitioner (GP) with symptoms? 23% said that their GP did not recognise the symptoms and did not refer to a specialist, and 21% said that the GP misunderstood symptoms and referred to an incorrect specialist. Correct diagnosis for 12% of people took over 10 years. Most people received extra information about dystonia via a dystonia patient organisation.
Prof. Relja gave a presentation on behalf of the EAN President Prof. Guenther Deuschl who could not attend the meeting due to an unexpected academic event. Studies are needed to understand the current situation of the patients in Europe and guidance to cost-efficient structures for care.
Mr Nicola Bedlington, Director of the European Patients Forum spoke on access to healthcare. ‘Patients across the EU are reporting multiple barriers to access healthcare, sometimes it is not available, or not adapted to needs, or not affordable. EU Member States need to achieve universal health coverage and improve access to healthcare.”
Prof. Rose Goodchild, University of Leuven, explained that within the last fifteen years she has worked in the dystonia field there have been no new therapies over this period. ‘The largest funder in Europe is a private research foundation. Dystonia research lacks stimulation of fresh ideas and clinical trials, and the field has plateaued.”
Eight MEPs from five of our eighteen member countries were represented. The Italian MEP Mr Brando Benifei who sits on
the Committee on Employment and Social Affairs commended that the dystonia survey which should help to inform policy. He said that MEPs were looking at post 2020 funding. ‘We have to look at more money for research to find new treatments for a better quality of life. But, he said ‘research alone is not enough, social support is also needed.’
Finally, the President of Dystonia Europe, Ms Merete Avery, thanked everyone, especially the MEPs. ‘It is my hope, being a dystonia patient myself, that all the people affected by dystonia now, and in the future will not have to wait too long before they get the correct diagnosis, will receive treatment and support and therefore can lead a fulfilling life – working, studying, travelling and taking part in society!’
The full report of the event will soon be available at the Dystonia Europe website: https://dystonia-europe.org