I know that the support of an MS Nurse is brilliant for some people and I have had a small amount of experience of that while in the London area but my current Nurse is not on my Christmas card list.
My GP recently described my area of England as ‘a bit of a desert as far as MS support goes’ and that is certainly true of my local area. My relationship with my current MS Nurse has been difficult from the start and she continues to disappoint. When I compare the attitude, support offered and caring personality of my MS Nurse based at a large London Hospital and where I am now it is like chalk and cheese.
Nurse 1, I will call her, always followed up every contact and offered a home visit when I felt confused about things, offering support to both my partner and my daughter to help clarify questions about MS, if I felt it was needed. She always gave me straight talking information and practical suggestions and never made me feel like just another patient on her list. To me she really was a supportive friendly professional to confide in and the person to smooth the pathways between myself and my GP and also acted as an efficient liaison between the Neurologist and myself arranging earlier appointments when needed and passing over all the relevant information.
Nurse 2, doesn’t have any of these qualities unfortunately. She has consistently complained of her huge caseload of patients to me from our very first telephone contact. She inspires no confidence as to her management skills, as practically every appointment arranged has been rescheduled. The basics were not ordered correctly when I started on Avonex injections and every meeting with her has finished with a flurry, as any long conversations are definitely not encouraged! I actually did my 1st injection not with my MS Nurse but with the far more supportive Nurse at my GP surgery. Having given me the basic instructions on how to inject (in a sponge) a few weeks before, Nurse 2 didn’t even give me the courtesy of a follow up telephone call to check on how I was doing. I have contacted her again recently regarding ongoing pain (following a further relapse) and have again received no follow up contact.
I have experienced firsthand the differences in the role of MS Nurses and can clearly see that they can effectively support people in the community with MS. They can be extremely effective in both liaison and support for both patients and other professionals and act as a key link in managing this long term condition. However, clearly their caseloads needs to be monitored and as in Nurse 2, they need support, to give us, their patients the support we need.
