Hi I was diagnosed in 2018 seen my neurologist couple times then covid stopped everything. Seen him few times since then but not seen or heard from ms nurse only the one time after diagnosis. I have rung them and left messages never rung me back disappointing really
Thatās not acceptable. If I was you I would contact PALs and complain.
Also email your neuros secretary and your MS nurse.
Iām under Salford Royal and if I leave a message for my MS nurse they get back to me in a couple of days.
I see my neuro once a year in person , have a MRI annually and a telephone consultation with my nurse at least once or twice a year depending on how I am doing.
You deserve a duty of care , make a noise and ensure you are looked after properly.
I hope you get the help you need . Take care.
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That is very disappointing, Sue. Itās dispiriting, leaving message after message and not knowing whether theyāre even getting through - Iām playing that dreary game for another ailment just now. I just keep reminding myself that itās the creaking gate that gets oiled first, and so thereās nothing for it but to keep trying. But itās weary work.
Yes you shouldnāt have to keep chasing things it drains you mines ppms if you donāt mind me asking which one have you been diagnosed
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Iām RRMS, dx 25 years and have had good care from the neurology departments at my regional general hospital.
Itās a different ailment Iām making no headway on: endless answering machine messages etc. you know the drillā¦ I will keep plugging away.
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Yes shouldnāt have to keep chasing things should be automatically be in touch with patients just leaving patients in limbo
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I am sorry to hear that you have had a bad experience Sue and hope that you manage to get a response soon.
I saw my MS nurse on 22nd November and they were brilliant. I turned up 6 hours early after having a panic attack at work and getting sent home. The hospital managed to get an off duty nurse to come in and see me. I am currently waiting to start my treatment (Kesimpta) and have another MRI booked in January.
Oh thats good hope your ok now and good luck with everything
Thatās a good choice of DMD, I liked being on Kesimpta, only problem was Kesimpta didnāt like me.
Good luck and all the best for the new year,
JP
Thanks. I am having blood tests done on Monday prior to getting the treatment.
Ive finally got over the phone appointment with ms nurse in two weeks time only been waiting 7years for one
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Thatās good news. Hope it goes well
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Thankyou