I was asked to speak at Holyrood by the MS Society about the importance of MS Nurses last week. Had never actually been to the parliament building so it was a wee adventure. This is the speech I gave
“Hello and thank you for inviting me here tonight to speak about my experiences of the MS Nurses and the important role they have played in my life.
I was diagnosed with RRMS 13 years ago when I turned 20. I’ve been lucky in the sense that I still see the same neurologist and MS nurses now at the Anne Rowling Clinic at Little France as I did when I was first diagnosed in 2004. Stress has always heavily affected my MS by exacerbating previous symptoms and causing fatigue, and so having the consistency of the same MS Nurses reduces my worries when I am meeting them for appointments, as they are familiar with my medical history and aware of how having MS has affected me both physically and mentally.
I’d like to share with you some examples where they have provided me with advice over the years and where I feel they have gone the extra mile to provide me with the support I need
I see the MS nurses 4 times a year but due to the unpredictable nature of MS there have been quite a few times that I have needed help inbetween these appointments. One of the more recent examples of this was when the vision in my left eye suddenly became blurred and my eye became extremely painful. I was able to call and leave a message and one of the MS Nurses called me back within 24 hours. I described to them what was happening and they asked me to come into the MS Clinic to see them the next day. Once there, they had me go for an eye examination which quickly showed that I had a case of optic neuritis. They then arranged for me to meet with my neurologist where we discussed moving onto new medication to better manage the MS. All this was done within days of my original phone call. Again, the speed with which they act can help contain some of the stress and the worry when new symptoms like this just suddenly appear.
During my appointments, we have discussed issues such as stress and pain management and physiotherapy. Because the MS nurses keep aware of the various groups that are around the area, they have been able to suggest organisations who can help with these things outwith the NHS as well as within. This can also reduce the time it takes to start these kinds of programmes. MS can affect people in so many different ways so that not all MS sufferers will have the same symptoms. This means that MS Nurses need to have a wide range of knowledge so they can offer the best support.
I was also able to go to them with my concerns when I had to move from DLA to PIP at the start of 2016. They were able to share with me what they knew about this new system and what kind of information I would need to supply with my application. I was able to rejig my appointments when I did not receive the mobility component until I could get someone who would be available to drive me in. I got my car back, but that’s a story for another day.
Through speaking to others and researching it myself, it is clear that MS specialist nursing needs to be resourced to a better level. The fact that my nurses are doing such a great job in spite of the number of cases they have only goes to prove how committed and passionate they are about taking care of and supporting their patients. Hopefully all MS sufferers in this country can have that same care we so badly need.
Throughout all these years with my various relapses and unexpected problems, they have never ever made me feel like I am wasting their time. They always listen to my concerns and address them, looking for ways to make things better and easier for me. I owe them a great debt of gratitude and I really do not think I would cope as well with MS as I do if I did not have their support.
Thank you for listening.”
I hope my story went down well with all who attended and that the MS nurses in Scotland get the help they need so they can give the help and support people like me need on a daily basis.