Forum

The not-so-helpful hospital MS helpline

Just curious - has anyone else had the same experience as me with the Belfast City MS helpline?

So, over the past three months I’ve been trying with little success to get through to an MS nurse via the helpline, as there is no other way. 9 out of 10 times I get ‘We apologise but there are no nurses available to take your call’, with no option to leave a message. Later in the day, you can leave a ‘short’ message but apparently there is no guarantee someone will call back that day. And if anyone does call, and you miss it, you’re back on the treadmill of ‘We apologise…’ again. Feeling super-frustrated!

hi snatches

have you tried the PALS service who seem to resolve most problems with hospitals?

carole x

hiya

ru sure there is a ms nurse working there?

staff changes, cutbacks etc.

frustrating yes. not everyone has access to a ms nurse. can ur gp help? or have u a question that can be asked on here?

sorry cant be more useful-but be careful what u wish for-they arent all helpful and supportive!

ellie

You’re not alone Snatches,that system was pioneered by Walton Neuro in Liverpool about 8 years ago.A couple of years back they had TWO MS Nurses covering from north of Lancaster to Holyhead on the far side of Anglesea.There were other small MS units around,but that was a busy job.

It’s the Neurotics’ secretaries who rule the roost,so if you could chat one of those up you might get somewhere

Wb

Snatches I’m having exactly same problem with them. Started Tecfidera a week and a half ago and have been trying to get someone to speak to in BCH for 5 days to clarify couple of things. It’s absolute disgrace we’ve just been abandoned!!

Good luck.

Good point about the GP. They can deal with most day-to-day aspects of MS.

In four-and-a-half-years, I’ve yet to meet or speak to my MS nurse. I’m meeting her later this month re (very slight!) bladder issues, but didn’t request it, and don’t want it.

GP deals with all ordinary stuff. The only slight hitch was right at the start, when they didn’t want to prescribe Baclofen, and said it was the hospital’s job. I was caught piggy-in-the-middle, with both lots claiming the other should be prescribing, but neither disputing I needed it.

Thanks to the good people on here, I knew GPs are allowed to prescribe it, and that it didn’t have to be a neuro or MS nurse. So I went in and had a little bit of a shout (I’ve got a pretty long fuse, but there’s only so much…) Fortunately, I was able to say: “Look, I know you’re allowed to prescribe it, nobody’s arguing I don’t need it, so would somebody please just get on and DO IT, as I’m the patient, and I’ve been left without medicine!”

This worked like a shot. Touch wood, they’ve never argued about prescribing again, and said: “Oh, the hospital should be doing that!” I think I succeeded in bringing home to them how stupid it was that a patient with a serious illness could be left without medicine, while everyone bickers about whose responsibility it is.

Tina

x

thanks everyone:) Eventually the nurse did phone me, and the problem has passed, temporarily. I phoned the MS society too, and discovered then that this is a recurring problem, due to the massive increase in people now being on medication for MS, and the too small numbers of staff to man the helpline. Apparently, this is being discussed again in a meeting today.

Sadly, the lovely idea of an MS nurse being just a phone-call away is still a dream, not a reality. YET!

Yes Tillyann we do have exactlly the same problem - I started Tecfidera last week too:) Hence the need to be connected…Good luck with the tablets!