MS NURSES - House of Lords debate today

My (much) better half has just read in the Daily Telegraph that the provision of ms nurses is being debated in the House of Lords. Apparently there are 274 ms nurses for 100,000 ms patients, and it is said there should be 300. I think there is a case for arguing that there should be rather more than that. Another 26 is hardly going to make much impact is it? I have seen one once in the eight years since my diagnosis. I telephone only rarely, and if I am lucky my call is returned, but more often than not it hasn’t been. They probably just don’t have the time to give everyone the service they should be getting.

Nice to hear the roles are being discussed at least. My nurse is retiring at the end of the month, according to her her role is not going to be filled. Hopefully something positive will come from today’s debate.

I agree, another 26 nurses will only reduce their workload by about 30 patients each. It isn’t going to make much difference but I suppose any improvement is better than nothing. At least they are discussing it. I bet the House isn’t anywhere near as full as it was when they were discussing MP’s pay rise .

My local nurse is a 45 minute journey away on a good day. Add summer traffic to that and it could take her up to 2 hours to get to me if I need to see her. She covers a huge, rural area and hundreds of MS patients so the only time when I needed her, it was a week later when she came to me. In that week I barely slept as I was in so much pain and it took a further week for the medication to work so I had another week of sleepless nights before things improved. It’s not her fault but I don’t think it’s fair to leave patients in pain.

I now phone the nurses at hospital as there are several in the team and they almost always return the call the same day and will give me advice over the phone. They will also fax across literature to my GP so he can prescribe any drugs I need. That seems to work much better for me.

Tracey x

I think they need more than another 26!!! I am very lucky we have a neurological centre about 20 minute drive away. I have been in touch with my ms nurse almost weekly since end of nov with various issues. If I call they do always phone back. I have also several actual visits to see her as well in this period. I do have a full reassessment booked for 4th April. It does seem like a while but I appreciate from people on this forum have never seen a nurse. Barney

First we need to know how many people have MS - I’m sure the 100,000 figure that’s quoted all the time is out of date - then the number of nurses needed can be worked out I’m sure there need to be many more.

They are always talking about axing ms nurses but it never happens. I don’t think it’ll happen but then I’ve been hoping mine would go for the last seventeen years or so. I’m sorry but to me they have never been useful. Glad so many people find them useful though , maybe they are busy but every time I see them it seems to me that they have oodles of time, I mean one does the consultation and the other sits in and listens and contributes nothing then if you ask a question all they tell you to do is to see your gp, so then I have to go to gp, sounds like a massive duplication of work to me. Sorry, I know lots find them useful. Cheryl:-)

I’m inclined to agree with you Cheryl. When my calls have been returned I’ve usually been fobbed off. The ms nurses have been about as much use to me as a chocolate teapot, but I know some people have had a great service and support from them. If only that were the case for everyone.xx

Hi, After reading all the posts it seems to me to be more of a postcode lottery. The ms nurse I had whilst living in Kent was brilliant, always answered my calls and came out to see me. I can’t comment on the service they do or do not have here, but I wonder how many in the House of Lords have MS!! Janet x