“Many patients still receive Parkinson’s diagnosis late”

In the latest in our ‘In My Country’ series, Cvetka Pavlina Likar, the president of Društvo Trepetlika (Trepetlika Association) in Slovenia, tells us why it’s crucial to raise Parkinson’s awareness ­– and how the organisation has adapted its approach during the Covid-19 pandemic.

Društvo Trepetlika (Trepetlika Association) has been successfully helping people with Parkinson’s for 30 years, bringing together patients, their caregivers, healthcare professionals and friends. As the only non-governmental humanitaria Parkinson’s organisation in Slovenia, we try to ease various problems for our 1,250 members through educational workshops, camps, meetings, printed newsletters, handbooks and by encouraging patients to exercise.

We also cooperate with all of Parkinson’s disease specialists in Slovenia, so we are professionally well-supported. We are constantly working with decision-makers to ensure that patients with Parkinson’s receive national priority treatment and sufficient resources for treatment and research.

Parkinson’s disease is still insufficiently known, and the state does not allocate enough funds to educate professionals ­– for example, nurses in nursing homes. Despite our warnings and efforts, decision-makers are still unaware that Parkinson’s disease is the fastest growing neurodegenerative disease in the world, and that a pandemic is coming. We do have a movement disorder team, but rarely does anyone get comprehensive treatment, except those who are hospitalised. We do not have a strategy like we have for Alzheimer’s disease or for the elderly. They give priority to others.

Cvetka Pavlina Likar, president of Društvo Trepetlika.

Fighting to improve Parkinson’s awareness

In general, people with Parkinson’s who have joined the society tolerate this serious condition quite well. However, we find that most of them have become involved as the condition progressed and were late in learning about it.

Many patients receive the diagnosis late because it is not recognised by the family doctor who first treats the patient in Slovenia. Some are still also treated incorrectly. Timely diagnosis is extremely important because it also means timely treatment – especially because there are more and more young people who are ill.

Another problem is the loss of work because a person is slower and also has a changed appearance. There are few companies that understand the disease and find a job that the patient can do. Homes for the elderly are also a problem, as most employees do not know about the disease, so they do not understand what is happening to the patient. Even home help is still not regulated as it should be.

We are constantly informed about the problems perceived by people with Parkinson’s, such as long waiting times for examinations, not receiving team treatment, waiting a long time for diagnosis or treatment for other types of diseases, dismissal due to signs of illness, problems with obtaining a disability status.

We have various awareness-raising activities in order to help people with Parkinson’s be understood, involved in the social environment, and not be discriminated at their workplace. We fight for their rights in healthcare and want the condition to be treated appropriately, continuously and early enough.

Raising public awareness is easy if you have the financial and human resources. We have little of both, so it requires a lot of effort for us. We have little opportunity to raise funds. We apply for grants, but we are applying alongside all other non-governmental health organisations, for conditions like cancer, cardiovascular disease, diabetes, smokers, alcoholism. All of these are already listed as priorities. We filed two lawsuits in court this year because we feel unequally treated.

Pharmaceutical companies still support us, but we can only apply for pre-arranged programmes. However, the number of pharmacists for Parkinson’s disease in Slovenia is small. Funds are also available for disability organisations. Trepetlika meets the conditions for obtaining this status, but we have been waiting for a decision since 2011.

Društvo Trepetlika supports its members through educational workshops, camps, meetings and newsletters.

“The coronavirus crisis has greatly affected the way our organisation operates”

One of the greatest successes in our organisation is the great attendance at all our events ­– both one-day and multi-day educational meetings as well as regular exercises and workshops of our members. Last year alone, over 1,700 people took part in our programmes, and we had 104 lectures and workshops led by 73 different Parkinson’s experts. It means a lot to us that we managed to connect with all neurologists specialising in Parkinson’s in Slovenia.

We have run our most successful Tabor programme 28 times. This is a four-day meeting of patients and their carers, who gather at the camp in order to exchange experiences with other patients with Parkinson’s, share problems and successes in the daily fight against the disease, and meet with experts from various fields involved in the treatment of this disease. All 60 places in the camp are always fully booked.

The coronavirus crisis has greatly affected the way our organisation operates. In past years, we have brought people out of social isolation and raised awareness through educational meetings and socialising.

During the pandemic, this was simply not possible. However, to reduce social isolation, we have introduced counselling and telephone conversations. We published many more updates, articles, and greetings from the professional staff on social networks and on our website. Many Slovenian experts cooperated with us. We connected with a neurology clinic and helped the neurologists to reach the patients by phone.

Now have at least one workshop every day of the week, be it a physical exercise workshop, a psychological one or just a chat room. The people who take part are very happy – they join us en masse. Unfortunately, we reach only a part of the population with these activities.

But, having been president of Društvo Trepetlika for 15 years, I think that the situation is improving­ – especially in the treatment of the disease – despite the present shortcomings. By including patients and their relatives in the operation of the association, we have helped ensure that patients are still an active part of society, gain self-confidence and also feel better.

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