Day 5 – Wednesday, 27 June 2014
The last day of the conference dawned and I crawled out of bed, bleary eyed from lack of sleep, and a bit achy from all that dancing last night! These old bones ain’t as young as they used to be . . .
I attended a session titled “Clinical Practice: What can we learn from each other’s practices?” which included presentations on “Post-Polio Patients in Norway – Past and Present Rehabilitation” by Ingebjorg Irgens, “What can we learn from each other’s practices” by Dr Laura Bertolasi (Italy), and “Breaking the Silence: Coping with polio in a third world country” by Emmanuel Piki (Zimbabwe).
All were very interesting in totally different ways. Every service I’ve seen based in Scandinavia has been absolutely ‘gold standard’, and the presentation on Norway’s Sunnaas Rehabilitation Hospital was no different. There are actually 8 separate multi-disciplinary rehabilitation teams working with various conditions – and one of those teams is dedicated to post-polio. I have included 3 slides that show their approach to rehabilitation being based on the International Classification of Function, as well as their ‘Multidisciplinary client centred team work’, and the fact that they are anticipating a long future working with post-polio patients. As John McFarlane (President of the European Post-Polio Union) quipped, starting from the last case of polio in the world, there will still be service provision required for a further 70 years into that child’s future.
Most of us can only envy the Scandinavian’s commitment to health, albeit largely due to the high taxes that pay for it. Call me a socialist but I, for one, would be very happy to pay increased taxes if it guaranteed the community services that are enjoyed by those countries. Well, after all, I AM a community development worker, so probably not surprising that I lean that way, eh?
Moving on to the Italian model, this was also a comprehensive rehabilitation centre based in the breathtakingly beautiful region of Verona. I felt better just looking at the photos of the surrounding area! The facility is connected to the Verona University School of Medicine and they are doing quite a bit of innovative research, including a Post-Polio Health International (PHI) funded trial searching for a bio-marker to assist in the diagnosis of PPS. However, this is still in the trial stage, and the test is via lumber puncture extraction, so not for the faint-hearted.
Finally, we heard from Emmanuel Piki, a man who had been placed in an orphanage as a baby after he contracted polio. Emmanuel told us about growing up in Zimbabwe with his obvious disability, and what lead him to working with an organisation that works to improve the lives of 78 disabled children. There is such poverty, ignorance, and disability-related stigma in that country, it’s hard to know where to even start to assist. However, Emmanuel was saying that even small things like books and pens would help to educate the kids, which would possibly raise them out of the poverty-cycle. It was a poignant reminder that, although I believe Australian polio survivors are hard done by in respect to a total lack of government funding, and a general lack of knowledge amongst our treating health professionals regarding the LEoP, at least they have access to clean water, relatively hygienic toilets, and a variety of general community services.
After morning tea, I attended a series of presentations by orthopedic surgeons from India showing graphic slides of knee, leg lengthening, and foot operations to mobilise/stabilise these areas. Most of it went straight over my head, but as I knew nothing about this type of surgery anyway, I figured I might just learn something. I suppose the take home message for me was that they do a lot of orthopedic surgery on young polio survivors in India!
Following lunch, we joined up for the Plenary and Closing session where thanks were given to all involved, and awards were given to the “Best Free Paper Presentation” and the “Best Poster Presentation”. The latter was awarded to the host country’s Dr Frans Nollet and his team from who had researched “Cytokine levels and associations with physical decline over 10 years in post-polio syndrome”.
I can’t recall which Free Paper Presentation was awarded the prize (a Certificate and a huge jar of lollies), but is was someone from the UK, and they had departed prior to the final session. We were all hoping the lollies might be shared around in the absence of the rightful recipient. The final announcement was that the next European conference would be held in Sweden in 2017.
Since the Copenhagen Post-Polio Conference in 2011, I have been tossing around the idea of running an “Asia/Pacific Region Conference” in Sydney, Australia. Of course, I have also been wishing, hoping, and praying that the government would provide some kind of funding and/or Bill Gates might shift his emphasis from polio eradication to polio survivors and decide that Australia would be a good place to invest in. However, none of this has happened, but I am keener than ever to turn this dream into a reality. Holding this kind of professional international conference in Australia, with access to the North American, European, and Scandinavian post-polio specialists I am hoping to attract, would provide a unique opportunity for our own health practitioners to enhance their knowledge and/or review their practices in line with the latest research into this little studied field.
So, having already discussed this with the Committee of Management some time ago, I’m putting it out there that Polio Australia will commence plans to run the first 3 day “Asia/Pacific Region Post-Polio Conference” in Sydney, Australia, in October 2016. As with both the Post-Polio Health International and European Post-Polio Conferences, the target delegates will be a mix of health professionals and polio survivors, which is an ideal opportunity for everyone to learn from each other. I have been told time and time again by health professionals and polio survivors that they would love to visit Australia, so I believe there is the interest from the international community. The biggest challenge will be to secure partners and sponsors to invest in this conference. I also need a few skilled helpers to organise an event on this scale. So, if you are reading this and have the capacity to assist in bringing this together in any way, please contact me.
John Tierney and I joined with Joan and Terry Toone from PPASS (in British Columbia, Canada) for an end-of-conference dinner at a ‘typical’ Dutch restaurant tonight, as they are all heading off tomorrow morning. I’m actually staying for the weekend to meet up with one of my Dutch cousins, which will be lovely. I was transported back to my youth as I tucked into all the foods my father had cooked: pea and ham soup, sausage and sauerkraut with a vegetable mash called ‘hutspot’, and a custard desert called ‘vla’. All pretty stodgy fare, but it brought back memories. On leaving the restaurant, we were treated to a bit of street entertainment, which was a bit of fun.
I hope you have enjoyed joining me on my St Louis and Amsterdam adventures, and that my impressions and the aspects of the two conferences I have been able to share with you were of some interest.
Signing off now . . . until next time!
Mary-ann Liethof