‘Expert talks’ in Austria
Sandra Lakitsch, MS Society of Vienna
Being diagnosed with MS means uncertainty, fear and confusion for most people. At this critical stage, people need expert information on personal, social and psychological questions, tailored to their individual needs. The medical routine at many healthcare institutions does not always leave time for this.
To help and support people newly diagnosed with MS, the MS Society of Vienna (Multiple Sklerose Gesellschaft Wien) launched a programme of ‘expert talks’ in 2007.
Ursula Hensel, managing director, explains: “Newly diagnosed people have different needs than those who have lived with the disease for several years. For this reason we run our expert talks about four times a year. Each time, we welcome newly diagnosed people and their relatives, who get the chance to ask all their questions directly to a neurologist, a psychologist or psychotherapist, and a social worker.
“As the group is small – ten people at the most –there is no time pressure and the atmosphere is relaxed and informal. People get all their questions answered and are encouraged to address their individual issues. Some express their thoughts and feelings freely.”
As well as the discussion, a psychologist explains common psychological problems that are often caused by the diagnosis.
This informal forum also serves as a platform to meet people who are in a similar situation.
“After the initial shock of my diagnosis had passed, I had so many questions I needed answers to,” said one recent participant. “The biggest benefit, apart from the truly informative opening medical lecture, was realising that I was not alone. I saw that there are other people with the same disease and similar problems – and institutions that provide support and can point me in the right direction if my road ever gets bumpy, or if I feel anxious and depressed. It came as such a relief at just the right time.”
Ursula Hensel says, “We are very happy with the success of the expert talks initiative and plan to make it even better. We will introduce a follow-up meeting one year after the initial session, to offer another opportunity to ask questions that might have come up in the meantime.”
| ‘Learn About MS’ in Australia
Andrea Salmon, Education Programme Coordinator, MS Australia – ACT/NSW/VIC
Margo, 23, was diagnosed with MS after many months of investigations. The next day, she contacted MS Australia and registered to attend an education programme. Brian was diagnosed 25 years ago.
He contacted MS Australia recently about a physiotherapy assessment and to learn more about MS. Grace, 32, wanted her husband to understand her fatigue and other symptoms better.
All three recently attended a Learn About MS session, run by MS Australia.
These sessions are run regularly in the Australian Capital Territory, New South Wales and Victoria. Their purpose is to help people with MS and their families and friends to live well with MS by providing up to date information, enabling informed choices, and promoting self-management skills.
While the programme is targeted at the newly diagnosed, it also attracts people who have been diagnosed for some time and have decided they want to find out more about their condition.
Learn About MS is offered as a full day session, held at a weekend in order to be accessible to people in the workforce. Family members and friends are welcome to attend along with those with MS.
Topics covered include:
- a medical and research update l strategies for symptom management
- a presentation from an ‘MS Ambassador’ (a person with MS sharing their story)
- tips and strategies for staying active with MS Participants also learn about MS Australia services in each state and connect with other people living with MS. Feedback from participants consistently identifies the enormous value of realising that they are not alone as they face the challenges of MS.
Offering education programs in a way that is appealing and in a variety of formats is a constant challenge in this era of rapidly advancing technology.
Components of the Learn About MS programme are also offered via teleconference and plans are in place for webcasts to be made available too.
Accessibility, fatigue and cost of travel are all factors that may restrict people’s ability to attend. Language and cultural issues may be another barrier to participation, and some people find the experience of a face-to-face group too challenging.
Yet those who attend appreciate the chance to hear accurate information about their condition presented in a supportive and positive manner.
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