kb2021 04/02/17
Last reply 1 year ago
MS One to One Nurses

My mother in law is supposed to be getting ready to start Lemtrada and can’t seem to get anywhere with the MS One to one nurses. Has anyone else had this problem? She has done everything on her end and her drs end, the nurse called her at 5 pm on a Friday and was very rude, short and wouldn’t give much information. My mother in law asked to call her back Monday morning for more information to which she answered “I’ll call you back.” That was first week of January and she has yet to hear back. They’re supposed to be finding basic information to which they keep giving the run around, they won’t give dates or anything. I found a clinic phone number and called and we have gotten more answers from them than the MS One to one nurses, yet we still have to go through them to set it all up. We have been at a stand still and can’t get anywhere because they’re so terrible.. anyone else have this experience? Any advice for getting the ball rolling?

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


hels99
1 year ago

You could try the PALS service at the trust that provides the nursing service. Or you could try the neurologist’s secretary to ask the neurologist to see if things can be progressed.
I know in some areas there is a lot of pressure on the nurses because of the size of the caseload (too few nurses). In my area there hasn’t been an MS nurse since the summer and they have struggled to fill the post. Good luck!


kb2021
1 year ago

I looked up PALS and am only finding patient airlift services? Is this the same PALS you were recommending?
We have talked with her neurologist, and asked them to try to get the ball rolling as well.. they have done everything on their end and seem to be hitting the same road block when dealing with the ms one to one nurses. Her home health nurse has also been in touch and was having the same issues until she told the nurse she went around their service and talked with the clinic herself, now the nurse is giving more information but still not really getting anywhere. If anyone has already had this treatment, did any of you have this issue with the ms one to one nurses? I’m wondering if it’s all of the staff under ms one to one or if there are in fact good nurses and we’ve just found 2 bad ones?


stumbler
1 year ago

@kb2021 , PALS is the Patients Advice and Liaison Service. They can help resolve problems with service levels. They should be based in your local hospital.

You may also want to have a word with the MS Trust (0800-0323839) regarding the problems with your MS Nurses.

I am assuming that you’re UK-based, as your profile does not provide this information.


hels99
1 year ago

Yes, what @stumbler said!
Good luck


kb2021
1 year ago

Thank you! I will definitely look into that for more information and get in touch with MS trust. I am not based in UK, I am in the US, just haven’t had a chance to update my profile as I am new here! ? thank you again for the help!

Post Comment

You must be logged in to reply to this topic.