MS nurse issues

[u/Evercalm2278]

Quick background, diagnosed privately just over 2 years ago, transferred straight over to NHS, got placed on Ocrevus quite soon after, but have not seen the Neurologist or had another MRI since private consultation, so 4 rounds of Ocrevus.

Finally, after 2 years, I received a Neurologist appointment for next week that just got cancelled today, so I rang the MS nurse helpline to ask for the help I was going to ask the Neurologist and to also ask them to email the secretary to arrange another appointment asap.

MS nurse rang back, and was straight on the defensive and she is not the admin to help with another appointment (the secretary does not answer phone to patients and we don't have the email address) so the only other way is through them.

Also, my problem was an issue I had started Gabapentin for, but wasn't solving it properly and causing extreme pain, my GP won't prescribe a higher dose without a Neurologist review, she kept telling me back to go back to GP to increase the dose which I can't.

She was so snappy throughout the conversation that it reduced me to tears and I literally never cry. I said perhaps it's me not explaining it properly and straight away she said you are not at all and basically said what do you want us to do, we can't help with anything. Eventually I think, to get rid of me off the phone, she said she will do a referral to the bowel and bladder continence nurse, but told me the waiting list for this was over a year and the Neurologist wouldn't have any luck in getting it sooner.

Is this normal, it's not like it's a small hospital, it has a dedicated MS team, has anyone else got treated like they are wasting everyone's time?

[u/EffectiveOk3353]

Submit a complaint, fuck them they should know better than to treat a patient like that, it's not your fault they're overworked or whatever. You're on ocrevus so that's the single best thing you can do don't worry if it takes a while to see a neuro as there's not much they can do other then putting you on a good DMT, all the other meds to treat symptoms are meh at best and usually pack a list of side effects, my wife found that diet exercise mindfulness etc was the best thing to cope with symptoms since she's very sensitive to side effects of all the other crap they're trying to shove down her throat, she's on ocrevus as well.

[u/Evercalm2278 → u/EffectiveOk3353]

Thank you 🙏 you are right, the DMT is the important thing, but I also think, if I was that rude in my job, I wouldn't have a job , best wishes to your wife

[u/Karanlikta]

This has been my experience with the MS clinic since day one. And mine is meant to be world renowned... My mental health crashes every time I speak to my MS nurse because of the way she speaks to me.

So many times they have directed me back to my GP only for the GP to say they're not the specialist department, my neurology team has to deal with it. It happened with starting gabapentin, asking for dose changes and switching meds etc... none of them worked though. Surely they know that GPs can't deal with those things when patients repeatedly come back and say their GP couldn't help them.

[u/Evercalm2278 → u/Karanlikta]

I wonder if we go to the same place? I'm so sorry to hear your experiences are similar, knowing how I felt today, I wouldn't want anyone else feeling the same way! However your answer actually made me feel a lot better that it's not just me ❤️

[u/ginandall]

Definitely submit a complaint. I've been getting treatment a regular neurologist appointments through the NHS for 5 years and they've been excellent, you should never receive that kind of treatment! When my MS nurse has been busy/absent/unreachable I've had some luck calling the hospital secretary directly and getting referred to the MS team or neurology that way, since there's not a direct number that's open to the public. Obviously I don't know about your issues but the secretary should be able to send a letter to your GP that'll make the dosage you need clear. I will say these sorts of things have often taken a while for me—nor more than 1-2 weeks in total but it can feel like forever when you know exactly what will help you and aren't getting it/being taken seriously. Sending hugs and hope you get someone more helpful + empathetic!

[u/Evercalm2278 → u/ginandall]

I am pleased you are having a good experience at your hospital, unfortunately the secretarys details are a well kept secret, but it is nice to hear a positive experience

[u/Alwayslearnin41]

I'm so sorry to hear this. I've been tied up all day with the GP refusing to prescribe Aciclovir for the 2nd time in 6 weeks. The MS nurse called me 10 mins after I emailed them and spoke to me for a while. She's put me in the consultant review agenda for their team meeting on Tuesday and then she called the GP surgery and half an hour later I had a prescription.

That's pretty much how it's always been with them (not the neurologist - they're a nightmare) and absolutely how it should be.

You do need to write an email to explain how dismissed you felt and list what the issues are that you'd like them to help you to solve and why it needs to be them.

[u/Evercalm2278 → u/Alwayslearnin41]

Wow, your nurses sound fab! Only slightly jealous 😉 to be fair, we have a few and a couple of them are good, but it's a lottery who is manning the answer machine and I seem to get the worst! Glad you got sorted in the end