Having returned inspired from the 2014 Allied Professionals Forum in Brussels, I’m still reeling from the impact. The forum precedes the International Symposium for MND by one day, bringing together health and social care professionals from around the globe to share innovative practice in relation to motor neurone disease (MND) – or ALS as it is known in some countries. I was fortunate enough to present at the forum – you have to submit an abstract, in the same way as researchers who wish to speak at the symposium. During the day, the selected presentations are given in quick fire succession – 18 presentations back to back. You get 15 minutes, plus five for questions, and the organisers are strict. Two minutes before you’re meant to finish, someone approaches the opposing podium, providing a clear signal to hurry. It feels like a cue to squeeze half your talk into 120 seconds!
I work for the Motor Neurone Disease Association, covering England, Wales and Northern Ireland. I travelled with my colleague Pauline Matheson from England to Belgium by train, on Eurostar, and it was remarkably quick. The main journey from London to Brussels took two and a half hours. The conference was held at the Thon hotel (we almost went to the wrong one, not realising there are multiple Thons in Brussels). As you might expect, this is a huge establishment, able to cater for mass gatherings such as this conference and was extremely hospitable. Having said that, exercise may be required after the cream-laden cuisine – the hotel even served Belgian chocolate in slabs as big as slices of bread at breakfast! Not fancying chocolate that early, I naively missed an opportunity to wrap a slab in a napkin and smuggle it into the conference. Probably just as well, melted chocolate on face is not the best look when making a speech, but the memory lingers.
On entering the conference room, I’m not sure of exact numbers, but estimate over 300 professionals had travelled from all directions to attend. The day began with introductions at 8.30am and, with breaks and lunch, continued until just gone 5pm.
This blog would be excessive if I listed all the sessions, but subjects ranged from the promotion of eye tracking software in Argentina to outreach services for the set-up of non-invasive ventilation at home in Ireland. From Wales, the ‘To do or not to do?’ presentation told of an approach that may indicate people with MND can push harder with exercise than thought and how this may bring unexpected benefit. A wonderful and emotional plea from Canada caught us all unawares just before lunch, with an online facility called RecordMeNow, enabling families to build positive video and audio memories for children to retain both after bereavement and throughout their lives. An interesting study in the UK revealed the hidden benefit of clinical and drug trials, with the social aspect and experience sharing of participants bringing added hope and positivity. From the USA, various subjects were introduced, including looking at the impact of using You Tube clips to help teach patient care skills.
The most dramatic presentation featured work in the USA with myoelectric orthotics and ALS/MND. This featured an orthotic for the arm, which can be self-enabled to move the limb, even where muscle activity has reduced to a twitch. This was originally developed with rehabilitation exercise in mind, but is now being explored for functional use. It may not be suitable for everyone and there are caveats about overuse, but the potential was inspirational. A clip showed a man with MND and limb impairment trying to eat a cookie. Without the orthotic, he could only raise his arm so far, but not enough to get the cookie to his mouth. With the orthotic, he could easily lift the cookie up and down and eat at will. The technique is being examined for all sorts of tasks and if trials continue to be successful, it could mean extended independence in daily routines.
From our own bank of speakers at the MND Association, we had Pauline Matheson, Project Manager, explaining about our initiative to introduce a new volunteering role. A pilot in the East Anglia area of England is being held through a funded programme. The new role of the Care Service Navigator forms part of this work, where volunteers with a qualified health and social care background offer time to help direct people with or affected by MND to local services and health systems. This came across as a really innovative way of using volunteer support and invited lots of interaction and questions.
Sara Jane Murray, Regional Care Development Advisor, also spoke about running workshops for compassion fatigue to help health and social care professionals learn to be kinder to themselves, which was followed by a similar session looking at the benefits to organisations who invest in this type of training. I found myself furiously scribbling, as much of this seemed to translate to the needs of family and unpaid carers. Much to take back here and incorporate into project work.
My own session looked at the development of our new publication End of life: a guide for people with motor neurone disease. Post launch feedback on the guide has included comments such as, ‘The guide clears concerns, so that people can think about living too’. The aim of the presentation was to encourage everyone in the ALS/MND field to offer opportunities to affected families to discuss end of life decisions.
It was a rare chance to speak to a global audience and the level of interest was phenomenal. I would urge anyone who wishes to share their knowledge or project work to consider attending the APF or submitting an abstract to present. Where else can you raise awareness with like minds on this scale and with this immediacy?
So, any tips? A few… The forum is conducted in English, but this is not first language for everyone, so keep it clear and remove jargon where you can. You may be speaking to a professional and highly educated audience, but you can help your listeners by avoiding an overload of clinical or project based terminology. Try not to cram too much in, or you’ll find yourself talking very quickly and this can also make it more difficult. Proof reading your slides is a good idea – the standard is high and errors really do stand out!
One word of warning if you’re from the UK and decide to travel by group in a Belgian taxi. Don’t forget they drive on the right. I went to sit up front and as habit dictated, took my place on the left to the hilarity of my fellow passengers. I found myself sitting behind the steering wheel. The taxi driver seemed quite happy for me to drive to be honest – and in the rush hour traffic, with various near misses along the way, I suspect my companions wished I had.
Other than hair-raising taxi rides, do I have any regrets? Only that I had to leave before the symposium the next day and would have loved to hear more. Overall I left invigorated and loaded with ideas to take back to the team.
If you get the chance to go, I would take it. It’s an amazing event.
Care Information Manager