Last week I went to the launch of a new app for people with MS called Symtrac from Novartis Pharmaceuticals.
I was delighted to be invited as it shows somebody, somewhere is reading this blog and feels I have an opinion worth listening to!
Anyway, the event was in central London, a place I’ve not contemplated going to for years. I enlisted the help of my carer (Mum) to come along with me as the amount of walking involved would necessitate wheels for at least part of the way and I needed some moral support along the way. I contacted National Rail Enquiries and booked travel assistance as I would need help with the chair. They were awesome! They made the whole experience easy and I was wheeled onto the train and sat next to a disabled toilet so worrying about needing the loo was a problem I could tick off my list! (Actually going to the loo with no balance on a moving train requires a whole blog post of it’s own though!)
Someone was there to meet us at Victoria and I was wheeled off again with no dramas! Getting into the taxi was probably the hardest thing about the whole journey and my Mum wheeled me round the hotel corridors like a pro!
The app itself is a great tool that enables users to build up a picture of their health to support self management and make the most of NHS consultation time. Over time, by tracking your symptoms you build up graphs that can be shown to health care professionals and keeps a record of your health. It is linked to exercise, the weather, medication and even monthly cycles (in female users) as these are all things that can affect MS. I would also like to be able to track what I eat and the effect that has on my symptoms but I am particularly into this at the moment. There is also no recognised MS diet that is beneficial so this was left out at the development stage.
The app was launched in response to a UK study published last year which found that 46% of people with MS experienced a relapse but didn’t report it to MS nurses or neurologists. This had a domino effect on their health, financial security and support networks (Duddy M et al).
This part of the presentation resonated with me so much as I didn’t report my balance problems and loss of mobility a couple of years ago. Looking back I wonder if cognitive problems also prevented me from remembering who I needed to go to and confused things for me. Perhaps if I’d reported it I could have had steroids which may have helped me recover more fully. This made me realise that Msers have a responsibility to take control of their health and report any changes so that the right treatments are being used to help them! This is where the Symtrac will help.
People on social media have responded well to the app and are using it widely to track symptoms. Some are annoyed that it’s not yet available on Android or Windows but the Android version will be available soon, everyone else needs to get an iPhone or use the website www.symtrac.com.
Other development points are that appointments can only be logged against a professional you’ve entered into the phone but that this isn’t always what happens in reality. Sometimes we see different people or a new consultant, for example. Other people have said it could be sleeker and easier to use and that updating symptoms could be simpler but I think people need to get the hang of it more. I think that as with everything MS related it’s designed for people with relapsing and remitting MS more than for people with the progressive forms as identifying and treating relapses are much easier with Symtrac.
Most people have nothing but good stuff to say though so download it and get tracking!
(me with 5 times paralympic medalist Stephanie Millward)