Guest blog from Sally Light, CEO, MND Association
I spent yesterday at the King’s College Hospital MND Care and Research Centre. The Centre is part funded by the Association and I was keen to learn more about their work. I was kindly invited to spend the day there by Professor Ammar Al-Chalabi and the Centre Coordinator, Catherine Knights. The King’s clinic in Denmark Hill serves the population of South East London and a much wider area stretching into the South East of England.
I spent the morning in the clinic and was privileged to spend time with Dr Cathy Ellis and the people living with MND that had come to see her. As this was a follow up clinic all of the people attending had had their diagnosis of MND for a little while. What was striking was the range of staff available to meet with anyone who needed to see them. So just in the time I was there I saw people access a palliative care doctor, a speech and language specialist (for swallowing problems), a physio, a dietician and the specialist MND nurse. They also have access to a respiratory function service so if people are having breathing difficulties they can be assessed then and there and advice or treatment given. Access to this multi-disciplinary team of professionals is, I think, the essence of what good care looks like for people living with MND and their families and that is why the Association continues to promote and fund this model.
As a qualified nurse myself I know some of the things that make a very good service and they were all present at King’s. It was extremely heartening to see the kindness with which people trying to cope with MND were treated – the unhurried discussions, the sensitivity with which difficult subjects were introduced, the genuine care and concern. I found the stories and experiences that people with MND shared with us heartbreaking, but the care they were given and their strength and fortitude were inspiring.
After witnessing the devastation that MND can have on individuals and families it was important to be reminded of the amazing work that is going on to help us to better understand the disease and one day to find a cure. I spent the afternoon talking to both Prof Ammar Al-Chalabi and Professor Chris Shaw, hearing more about their research and touring a laboratory. They do different but related work and both have teams of scientists working on a number of threads of research. It was very interesting to see that, these days, research is as often done at a computer as it is in a laboratory and certainly complex statistical analysis and huge databases of information are as much the tools of the scientists as petri dishes and test tubes. Both Ammar and Chris are experts in genetic research and their work is part funded by the Association. They were very clear about the important contribution that MND Association funding had made both to their research work and in support of the Care Centre. Good to hear.
Of course we all want to hear that a breakthrough is coming soon or that a particular treatment looks promising. Sadly we are not there yet, but what I did come away with was a very strong impression that progress is being made, that our understanding of the genetic influences and some of the cell based mechanisms is improving, that the DNA bank and international collaboration are hugely beneficial, that the combined minds of mathematicians and computer programmers and biologists and geneticists and physician scientists will help us to find more answers and that the drive and passion to beat this disease lives very large in the hearts of the researchers.
It was an inspiring day and my thanks go to those who made it so.