It’s the old chestnut- we don’t realise the importance of something until we don’t have it anymore. I didn't fully appreciate having the option to pick up a phone to call an MS nurse and discuss issues was a luxury until recently. The MS specialist nurses at the hospital I attend have left/are on leave and for the last number of months have not been replaced. I could go months without needing to call but now, ironically, I have found myself picking up the phone multiple times…only to remember that they are not at the end of the line anymore.
MS nurses can have immeasurable benefits to people with MS. Neurologists don’t have the time to spend with people and despite their stretched time, it’s during the visit with the nurse that people build a relationship much faster than with their doctor. It isn't very often that a neurologist will call a patient or take a call from a patient, but an MS nurse will, acting as a liaison and dealing with issues efficiently.
At the time of my diagnosis my MS nurse was a great support to me- she was my first call when I needed advice, she gave me information I needed and I was supported. At the time of my diagnosis I was in college and nearly finished my course and I wanted to keep going. Some people thought I should take time off, but my nurse really listened to what I wanted and supported me to do it. She organised letters from the hospital so that I could have support (a personal assistant for a number of hours per week) which helped me continue on for the final months. Life goes on, time passes by, more calls are made with visits to the MS clinic and more conversations. Over the years my MS nurse and I developed a better relationship as a firmer grasp of my individual needs was established.
I travel to New York every year to see a specialist and my nurse helped me access to my medical files so I can take them with me. The decision to see someone abroad is not one that everyone can or will make but it works for me - I like the combined care I receive. My MS nurse has always supported me with my decision and that makes a difference to me. But now, when there are no MS nurses in my hospital, it's more difficult. MS nurses make an often cold and clinical landscape a little warmer, friendlier and humane. MS nurses support people to live a full and independent life. They can also make referrals for further specialised care. With their vast experience working in the Irish health system, they are aware of resources that many people don't even realise they can access. MS nurses can guide us on how best to access and use these resources for even better health.
The European Multiple Sclerosis Platform (EMSP) runs an education programme called MS Nurse Pro – an online training curriculum for nurses beginning their career in the field of MS. It is a fantastic tool for professionals that provides online training in five modules - Understanding MS, Clinical Presentation, Diagnosis and Assessment, Treatment, Care and Support. As someone with MS, I think that these areas are exactly what MS nurses need to be trained on, it gives them the tools to provide excellent care, information and support to the people who need them.
MS nurses have positively impacted my life and care and the sooner they return to my hospital, the better. How has having access to an MS nurse affected you? Do they have an impact on your care? Please use the comment section below.
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