Our AKU Workshop in Stockholm brought together a great range of people, from researchers to patients, to staff from the National Alkaptonuria Centre (NAC) in Liverpool. Alistair has been Coordinator at the NAC since March, and this was his first international workshop. We asked him to write about the conference from his perspective.
I have been at the NAC since March, and although I have attended various other meetings, with both professionals and patients, this was the first ‘international’ workshop I had the pleasure of being involved with. It took me by surprise when I was told I had to go to Stockholm for work – It’s not every day you get an opportunity like that, and I really didn’t want to miss out. It was great chance to meet the people behind such fantastic work, and to see where AKU research and treatment has come from, what it has done so far, and where it is likely to go in the future. As the National Centre Coordinator, I felt I had a responsibility to go. So I did.
The opportunity to be among the leading clinicians, scientists and Doctors in their field of expertise gave me a real insight into how much hard work has actually been done since the late Robert Gregory decided that AKU patients needed a voice, and a centre to be treated in. Even in such a short amount of time, so many people are now involved, from scientists cultivating cells and breeding mice, to the patient support group offering advice and travel support to those in need. All of this plays an instrumental part in the care we can now offer to those who are diagnosed.
The presentations were, on the whole, mind blowing! I must admit some facts and figures did go over my level of scientific knowledge, but I managed to eat through enough pastries to keep my concentration and stay with it for as long as possible. I knew a lot of scientific research had already been done by the team in Liverpool University especially, but to see just as much coming from such a wide range of international experts was truly inspirational, and I could finally put faces to the names I have heard and read about so much over the past few months.
We managed to take some time between presentations to hold a patient workshop. This was of great benefit to me (and hopefully the patients too) as I could see the level of support that the international patients have from their respective countries. I found this to differ greatly from country to country. Some have patient support groups available with involved clinicians, whilst others barely even have a recognised society in which the diagnosed patients and/or their relatives can communicate.
I also found this workshop beneficial, as the patients were able to tell us what help they need. We discussed what doesn’t work, and possible solutions to issues we may have not been aware of here in the UK. There are cultural differences, religious differences and economical differences- all have some impact on how AKU is either looked at or approached. It was a real eye opener in terms of how we can learn, adapt, and adopt new strategies, using what we already know here in the UK to help those who are harder to reach, and have less support. One solution that was agreed upon across the board was to produce a patient handbook based on what we do here at the NAC. This will have relevant, up to date information readily available for all patients, of all languages, in all areas.
So the first ‘international workshop’ for me was a success. I hope to use what I learned, and the new contacts made, to strengthen the communication between those who need it, and also to ultimately improve how we approach, research and treat such a rare disease as AKU.
With such a strong international backing, and such involved patient groups, I am confident that we are on the right track.