Richard's diary

Back to normal at work now – the jet lag was bearable. Colin Jackson, the hurdler, was on the same flight and just as he is on the telly. Lovely chap.

I’m preparing a synopsis of the Symposium for a meeting of our MND Special Interest Group in January. This is composed of up to 25 health and social care professionals from our locality with a special interest in MND. We meet every 3 months to exchange views and information or have guest speakers telling us the latest on environmental control systems, genetic research, MND Care Centres etc. It’s a good forum for meeting up with people from other professions who you might know by name only and never bump into.

I’ve enjoyed writing the diary as it’s been good for reflecting on what has gone on daily at the Symposium and what to take back to the UK to utilise. So that’s it until next year’s Symposium when the world of MND descends on Birmingham. A Merry Christmas to all our readers!

It hardly seems any time since we all arrived in Toronto and it’s time to be going home again. Unfortunately, no therapeutic breakthroughs like riluzole as yet to modify or even reverse MND but research continues throughout the world.

It has been a good experience with time to reflect on how we care for patients and ideas from other countries to take back home. An Australian hospice doctor is promoting a template to enable doctors to help patients draw up advance directives. I hope to use it and so become involved in a research project to see how effective and practical it is to use.

So it’s “au revoir” for the moment to friends old and new and “see you in Birmingham next year” (with Brummie phrasebook) at the 2008 Symposium.

I wasn’t suffering from alcoholic delusions when I woke up this morning - the ground really was white (with snow). A number of speakers haven’t been able to turn up because of the travel disruption and cancelled flights.

First up this morning was the Nurses Forum with a presentation about using a video to give prospective PEG patients a chance to see what it’s like to have one fitted - it’s a difficult concept to explain in a leaflet. Parts of the video can be downloaded (for a modest fee) from www.alscare.com if you are curious.

The afternoon session looked at enabling people with MND to be given choice in how they wished to be treated and cared for, and ensuring that their preferences are respected. This can be difficult if these views aren’t shared by family or professionals or communicating becomes difficult.

My own talk was about the new Mental Capacity Act for England & Wales which makes advocating patients’ wishes a priority. Living wills are one (but not the only) way of achieving this.

One of the most fascinating talks was about the website www.patientslikeme.com. This is an on-line MND community where patients can communicate with each other. The 3 main principles are:

· Tracking progress and comparing notes
· Sharing information & experiences
· Learning - and not just for patients.


The anonymous information is already being used by researchers to further understanding of the illness and disease patterns.

Patients who use it say it is tremendously inspiring, especially because they realise they aren‘t the only ones. The internet has been a fantastic vehicle for “meeting up” with like-minded others - it sounds artificial but can be remarkably real.

I’m really enjoying Toronto despite the shock of minus 2 temperatures - I’ve dropped all thoughts of an early morning dip in Lake Ontario in the interests of preserving my tenor (as opposed to falsetto) voice.

Yesterday, I attended the Allied Professionals Forum run by the International Alliance of MND/ALS Associations. This is a great opportunity to hear how services for patients are provided in different countries across the world. Amongst the nuggets were:

• Clinic staff flying to remote places in Canada when MND patients can’t travel the huge distances to the neurology centre
• Electrical wires implanted into the main breathing muscle, the diaphragm, for boosting breathing - and allowing one MND patient to do a free-fall parachute jump which we saw on-screen!
• Liaison between the MND Association Regional Care Development Advisor in the East Midlands, UK, with the local ambulance services to prevent unnecessary hospital admissions in a crisis
  

The Symposium proper started today. It was thrilling to see over 800 delegates from all over the world getting together in the name of making things better for people with MND. The deputy Mayor of Toronto, Mr Pantelone (aka Mr Trousers) officially opened proceedings. We were then presented with talks including :

• Phil Simmon’s book, “Learning to Fall” - a must-read account of an MND patient’s coming to terms with his situation
• The increasing number of Baby Boomers reaching their 60s is expected to lead to increased numbers of MND patients in the next few years. This is not because of any known environmental effects, purely demographic changes.
• The increasing physical and psychological burden on the main carers of people with MND as the disease progresses

Tonight is the Symposium Dinner - I hope to be sufficiently abstemious so that I can be in a fit state to report back tomorrow.

Suddenly, it’s only one week to go!

As with previous Symposia, I am looking forward to visiting a part of the world I haven’t been to before. It is always stimulating renewing acquaintances with doctors, nurses, researchers and patients from other parts of the world and realising that, despite the difficulties with the NHS, nowhere is perfect.

In fact, many colleagues from the USA feel privately guilty that there are so many uninsured patients with chronic diseases like MND who can afford little or nothing and have to fend for themselves. Even when patients are reasonably insured, there are limits on what medical input they can obtain – something we don’t generally have to think about in the UK.

Mustn’t forget the liberty bodice – Mum says it will be cold over there…