Luxembourg and Poland came together, to share opinions, experiences and their hopes and aspirations for the future.
EPDA Board Members Mariella Graziano, physiotherapist (Luxembourg) and Mahendra Gonsalkorale, retired geriatrician and Parkinson’s specialist (UK) report on the Road show that was held in Cracow, Poland in September 2008.
The 2008 partnership was between Luxembourg and Poland, with the aim of exchanging knowledge and good practice with each other. Mariella and Mahendra, together with Polish EPDA Medical Board Advisor Anna Krygowska, president of Cracow Parkinson’s Disease Association Andrzej Bialko, and vice president, Dr Pawel M. Socha, a Psychologist who has Parkinson’s worked together to form a programme that would benefit people with Parkinson’s and their family members in Poland and to consolidate a partnership with the Parkinson’s organisations in Poland. This event would not have been possible without the generous support of national sponsors Roche, Lundbeck, Servier and Merck, and is much appreciated by the EPDA and our Polish colleagues.
Facts on Poland
The Republic of Poland has a population of about thirty eight million and it’s the ninth largest country in Europe with Warsaw being the capital. Poland became an independent republic in 1989 after the overthrow of communism and is a member of the European Union. The polish currency is the zloty and although Polish is the official language, English and German are the most common second languages. The largest religious group are Catholics forming 89% of the population.
Health care system
Poland has a health care system based on general health insurance. Persons covered by the general health insurance (on the compulsory or voluntary basis) are entitled to free health services in the territory of Poland. The National Health Fund (NHF) is the institution, which is responsible for assuring health services for insured persons and members of their families. The Fund finances health services and assures refunds of medicines within assigned financial means. The NHF is composed of a head office plus sixteen regional branches; all of which are established in accordance with the territorial division of the country. Public and non-public health care providers who have concluded contracts with the competent regional branch of the NHF are obliged to provide services within the general health insurance system.
Health care providers are above all: doctors and dentists who practise within the health care system, public and non-public health units (hospitals, first aid stations, dispensaries, health centres), and outpatient clinics (individual, individual specialist, group).
An insured person and members of his/her family are entitled to free health services as long as they receive these services at health care providers who have concluded contracts on providing health services with the regional branch of the NHF. The contract on providing health services specifies the kind of the treatments and services available by the given health provider within the NHF. Health care providers who have a contract for providing health services can be identified by a sign with a NFZ logo, which is always placed somewhere noticeable outside their building. Every health care provider who practises within the general health insurance system is obliged to pass on information about other providers who offer services on the basis of the contracts concluded with the regional branch of the NHF.
Parkinson’s disease in Poland
There is no reliable data on the prevalence of Parkinson’s in Poland. The Foundation “Life with Parkinson’s disease” of Warsaw state that “specialists assess that there are about 140,000 sick people”. Other estimates range from 45,000 to 90,000.
Parkinson’s Organisations in Poland
There are seventeen Parkinson’s Organisations fourteen of which, including Warsaw and Krakow being fairly large. All are run by volunteers and none have salaried workers. Until now, the associations have functioned independently and there has been no co-ordinating body. The Warsaw Association, Foundation Life with Parkinson’s disease, discussed the concept of a Central Co-ordinating Forum in 2007.
Very little support was offered for this concept and many associations were worried about centralisation and loss of autonomy. However, Andrzej Bialko saw many advantages of such a Forum, as he had already seen a similar organisational change in his own field of Polish Cultural Groups. Andrzej was also influenced by the Swiss initiative “Learning in Partnership” project first presented at Stresa in 2007 during the EPDA annual conference.
When the Road Show arrangements were initially discussed, it was agreed that as many Polish Parkinson association representatives as possible would attend the Workshop - “Strength for working in Partnership”, an initiative the EPDA fully supported, using the workshop and other time available to promote partnership by dispelling fears and pointing out the benefits of cooperation. A draft constitution had already been circulated before the workshop took place.
Preparation
The Conference: Saturday 20th September
“Europeans get Closer: New Horizons in Parkinson’s Disease Treatment”
Registration commenced at 10.00 am. Eighty people came, the vast majority being people with Parkinson’s and carers.
The first session was chaired by Pawel Socha and the first speaker was Andrzej.
He outlined the activities for the day, how much he was looking forward to working with the EPDA and finally highlighting the importance of the Road Show as a ground breaking event which would ultimately benefit all people with Parkinson’s and their carers in Poland.
Mariella then spoke about “The EPDA, what it does and how it can help patient associations, highlighting the benefits that Luxembourg had experienced after linking up with the EPDA. The "live" translator was excellent and managed to infuse the audience with Mariella’s enthusiasm and liveliness. Anna Krygowska was next to present, delivering a masterly overview of Parkinson’s and its current status. It was packed with vital information and delivered with such confidence that can only come from a speaker with great experience in the topic being discussed. Mahendra spoke about the “Challenges for managing older people with Parkinson’s”, highlighting that Parkinson’s mainly affects the elderly. The proportion of older people globally (especially those of eighty years and above) will increase substantially in the next twenty years, resulting in a large increase of people with Parkinson’s. He provided a model, which vividly demonstrated what Poland could expect by 2020. He also stressed the importance of associations and organisations, for people with Parkinson’s in finding resources not only for research; but also to improve the lives of those who currently live with the condition.
Some of the special features of Parkinson’s in old age were discussed, (including diagnostic difficulties, changes in clinical aspects, and the need for individualised management - important at any age but especially so in the older person who is more likely to have other diseases, social difficulties and non specific features.) He warned about the care needed with medication and to be wary about interpreting results of drug trials; (very few elderly people are included so to generalise would be dangerous). He encouraged people to fight against denying good treatment to older people on the basis of cost and ageism, emphasising that what is required is a balance, not indiscriminate use of drugs and surgery for individual older people who are not suitable, but a measured and thoughtful use based on the assessment of risk versus benefit, taking into account the person’s age. Andrzej summarised the Working in Partnership meeting in Stresa; explaining how delegates from different countries were able to share good practice, being motivated and encouraged to pursue what they had learned in their own countries. His message was strong and constructive – “Working together enriches and benefits all”. Pawel Socha, delivered an emotional and personal perspective on “Psychological issues of coping with Parkinson’s: Existential perspective”, encouraging the audience to share some of their experiences. He touched on many things that people with Parkinson’s experience with great sensitivity and understanding. Art and Parkinson’s, the next session was hosted by Andrzej and Mariella.
Andrzej introduced two Polish artists, the husband and wife team of Jerzy Witkowski and Maria Samboroska, who explained how Parkinson’s had affected both of their lives and how their interest in Art had helped them. Jerzy has had Parkinson’s for over nine years and Maria showed examples of his work from pre Parkinson’s onwards. Their work, mainly Maria’s, was also exhibited on the walls of the conference room. Mariella gave a two-hour practical presentation on “Common mobility problems in Parkinson’s and how to address them”. She more than won over the audience and offers of the polish version of her DVD, a gift from Parkinson Luxembourg PLA to the Polish Parkinson’s Associations, were grabbed eagerly!
She showed how people with Parkinson’s can learn to do things in their own way and how they can share this knowledge for the benefit of others, drawing their attention to the EPDA website, especially the section on Coping Strategies – ‘Tips and Tricks’ and the Awareness Campaign. Our Polish colleagues told us that feedback from the audience had been very positive and that they had enjoyed the day and the knowledge gained would help them in their daily lives.
Social Aspects
That evening, Andrzej, Anna and Pawel organised a wonderful meal at a famous restaurant in Krakow (over 700 years old) expressing their thanks and appreciation to the EPDA for their efforts to help Polish Parkinson’s organisations.
Sunday 21st September, Krakow
Round Table Discussion between EPDA and representatives from the main Polish Parkinson’s associations. As soon as this meeting commenced, it quickly became apparent that it would not be appropriate to stick to the original planned agenda.
The Polish representatives began an animated discussion about working together with Agnieszka, the translator was doing her best to keep us up to speed but it wasn’t easy.
We began speaking about the advantages of working with the EPDA, (a European umbrella organisation) and the power that can be achieved by working together, at the same time putting their fears to rest about the possibility of losing focus of the needs of local people with Parkinson’s.
Mahendra highlighted that it would be easier for the EPDA to work with one organisation representing all Polish Parkinson’s associations and reassured them that local groups would still be able to contact the EPDA when they wished.
An agreement was reached to implement the constitution set forward a year ago by the Warsaw association. Their President, Jerzy Łukasiewicz, who has Parkinson’s is an imposing and influential person, with a clear vision and is always able to see the person with Parkinson’s point of view. The Krakow Declaration as it will be called, will state that various organisations met in Krakow on the 21st of September under the auspices of the EPDA and agreed to form the “Forum Parkinson Polska” and that they will hold a meeting in Warsaw in April 2009 to finalise the constitution and elect Office Bearers.
The Presidency of the Forum will rotate every three years; the first President will be Jerzy Łukasiewicz of the Warsaw association. Member associations will retain their autonomy but the Forum will act as a Co-ordinating Body. There are seventeen Parkinson’s Associations in Poland and fourteen of those have signed up, the three remaining associations being very small with few members, and their joining is just a matter of time.
Mariella and Mahendra’s conclusions on the outcome of the 2008 Road show
”We feel that we more than met our objectives and are especially proud to have helped with the process of making the Forum a reality, first discussed some time ago. Our enthusiasm and keenness for partnership working enabled us to catalyse the process and make the Forum a reality. What happens informally is as important as the formal process that takes place during events such as these. By meeting key people in the Polish Parkinson’s organisations combined with open and honest discussions, we feel that we have further enhanced the EPDA’s reputation and paved the way for greater involvement with Poland ultimately resulting in benefiting the people who really matter, those with Parkinson’s and their carers.”
Programme
Summary of the press coverage of the joint meeting of EPDA officials hosted by Krakow Parkinson’s Disease Association
By Pawel Socha (Vice-chair - Krakow Parkinson's Disease Association)
The meeting was announced in the local newspaper “Dziennik Polski” just a couple of days before it took place. The brief note “How to help persons with Parkinson’s disease” informed about the purposes of the meeting: the newest discoveries concerning methods of treatment and rehabilitation, as well as setting off international cooperation under the auspices of the EPDA.
The same newspaper, on 25th of September, published an interview with the eminent specialist on PD and at the same time one of the founders of the Krakow PD Association, Dr. Anna Krygowska-Wajs (Professor in neurology at the Collegium Medicum of the Jagiellonian University in Krakow). In the interview, Prof. Dr. Krygowska-Wajs focused on practical issues of helping with PD. Also, she emphasised the bright future for methods of treatment, such as the gene therapy. On the other hand, Dr Krygowska-Wajs stressed the hitherto progress in maintaining the well-being of PD patients, unlike it had been in past decades. Apart from new medicines, implants of brain stimulators, and deep brain surgery, the present relief in symptoms allowing for better quality of life in the patients overlaps with the current progress in physiotherapy and better media information regarding the PD, she added. It is the public education system which should develop in order to contribute to the up-to-date knowledge concerning the multi-directional approach to PD treatment. As Dr. Krygowska-Wajs pointed out, better cooperation of local and international bodies is desperately needed in order to make those suffering aware of the access to the PD professionals, treatments, and ways of coping with their daily life problems they have.
A similar interview with Dr. Krygowska-Wajs, entitled “This disease attacked Leonardo Da Vinci,” appeared in the “Pracodawca” (The Employer) monthly journal in December 2008. In a more general way, Dr. Krygowska-Wajs made the most relevant points there, regarding the PD symptoms, history of its treatment and the present developments. Specifically, she focused on the threats and obstacles which may significantly interfere in the PD treatment such as stress, inappropriate style of life and work, or neglect of physical exercise; and on the new horizons in the methods of treatment.
Media cuttings
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