When were you diagnosed with MS?
I was diagnosed in 2011. I had optic neuritis in 2010, but my neurologist didn’t want to make the MS diagnosis based solely on that. After a relapse of sensory symptoms in 2011 he gave me the final diagnosis. Initially, I panicked completely. I googled MS and found long lists of possible symptoms, all of which I instantly felt like I had. However, it wasn’t long before it simply became part of my day-to-day life and became my new normal.
How have you adapted to living with MS?
I feel lucky in that I currently only suffer from sensory symptoms. Although they can be horrible and depressing, they don’t really stop me from doing anything. I might not be able to do quite as much as before, and I definitely struggle with making plans far in advance. My husband and my son are both amazing – on bad days they are understanding and helpful and on better days we laugh together at my clumsiness. They would argue that my normal has always been a bit unusual, so my new normal is just a variation on a theme.
What made you want to get involved with MS Forward View?
Before spotting the advert on the MS Trust Facebook page, I had never considered getting involved with anything to do with MS. However, when I saw the ad, I just thought – that’s me! Being able to make a difference using my experience as a person with MS to help others with MS, well it was a no-brainer. I hate inequality, unfairness and inefficiency, and here was an opportunity to have my voice heard and to help shape the future of provision of service for people with MS.
What do you think MS Forward View will accomplish?
Quite often, we see news items on reports made on various subjects. They note where things are wrong and where things are right and perhaps even go as far as to suggest improvements. MS Forward View takes it a step further in attempting to use the results from all the workshops, interviews and surveys to create a consensus about the the big priorities to improve MS care and the practical steps that will make it a reality.
What’s the biggest thing you’ve learned from the project?
I have learned how much we can achieve by taking the time to listen to each other. I was overwhelmed by the reception the views of people with MS received. Everyone from MS nurses to neuropharmacists and neurologists thoroughly appreciated learning what people with MS value in the services they receive. In as diverse a condition as MS, it is often difficult to remember that there really is no such thing as a typical patient – we don’t all fit in to a convenient box and so a one size fits all approach is not really suitable.
You’re now helping us on our nurse funding programme. What difference do you think this will make to people with MS?
Here we have a perfect example of the fewer words, more action approach. It is clear that there are areas in the UK with such shortage of nurses that there is no chance of providing a good level of support for people with MS. Through the nurse funding programme, the MS Trust is not only going to introduce new MS nurses, they will also ensure they have the right training to provide the best service to people with MS. This will help to ensure that all people, with all types of MS, will have access to an MS nurse – which in my opinion is the single most important thing for all people with MS!
What’s do you miss most about Denmark?
I’ve been in the UK for nearly 25 years, so I feel pretty British, but I always miss Danish sweets (salty licorice!) and Danish baking. However, the Olympics has rekindled my love for handball, a sport I played growing up, and I have been following it obsessively! I’m still on cloud nine because the Danish men’s team won Olympic handball gold!
What do you like most about the UK?
I feel so lucky living in a country with an NHS! Through various forums, I hear a lot about people with MS in other countries, and although we of course always have things to complain about (not enough funding, inequality in service provision), in comparison with many other countries around the world, we are lucky to have a free health service! To think there are people with MS who have to pay for their own DMDs. They aren’t cheap!
Find out more about our MS Forward View project and nurse funding programme.
This story is part of the November 2016 issue of our free quarterly newsletter Open Door. Sign up for your free subscription!