Forum

No services in Shropshire

My GP suspected MS in May 2017. I was privately diagnosed with RRMS in July 2017. I waited until December for the NHS to diagnose me too.

An out of county neurologist wants me on Tecfidera. But I am not allowed to use out of county MS nurses or clinics.

He has written a pleading letter to my local neurologist. My GP has written to them too. My MP has written to them. My private neurologist has written to them. My work place has written to them.

It has been another four weeks. I have phoned twice and have been told that they are writing to me. Nothing!

today I am worried that I am relapsing. Amongst other things, my face and tongue have been completely numb for three days and I can’t stop sleeping. (Sorry I do understand that many other people have it worse)

I phoned the private neurologist, the out of county one, the local one, the GP, and the MS nurse. The GP says only a neurologist can help, the secretaries say they will pass the message on, the MS nurse says I am not on her books yet. Arrrgggh.

It is so frustrating. Very sad and a bit scared. Sorry for sounding off, I just know that so many of you will understand.

Ali

hi ali

it is shocking that the health provision varies so much around this country.

i’m so pleased to be in greater manchester were the services, although stretched, are excellent.

i should imagine that your mp was concerned.

i can’t think of anything i could suggest.

maybe PALS (Patient Advice and Liaison Service) could help.

maybe a duvet day or two is called for.

carole x

Thank you Carole, yes. I am in a duvet now. Sleep and too much telly! x

I’m in Telford and i feel your pain! There WERE MS nurses and then both left. Replacement came, has’nt stayed and I hear from the Neuro dept another IS coming. So my experience has been. At PRH neurology is not bad, MS nurses no existent at the mo, however if your under Shrewbury, I don’t know? Letters from the hospitals can take weeks and weeks…snowed under it seems.

Out of county - is that private? You need to decide whther to go private or the NHS.

Going private for DMDs would cost a fortune.

It’s so sad that services are so random across the country. It makes me very appreciative of what services I get here. And I was referred to a neurologist in a different PCT. Who then referred me to other hospitals when the treatments weren’t available (at that point) at his own hospital.

Seeing neurolgists who have the facilities to prescribe appropriate drugs regardless of whether they are in your county or your CCG can be done. As Carole suggested, try getting PALS involved.

There must be a way. You’ve waited long enough Ali.

(When you chose your user name did you know quite how appropriate it would prove to be?)

Sue

Hi Patience, could you ask your GP to refer you to another neuro who could then prescribe the tecfidera. Even if you asked to be referred privately for the first appointment and then ask to be put on their NHS list afterwards for subsequent treatment. I know years ago when I was first diagnosed and was actually living abroad I came back and saw my mums GP in Cheshire and was then see by a neuro at the Walton Hospital in Liverpool which was a specialist NHS centre for MS/neurology.

Dear Sue, thank you for your advice. My user name was a panic one. I thought that maybe my family, my kids would come on here and find me, I wanted to be anonymous. Now it is ironic! Patience, patients! Well chosen I feel. Kindest Ali

After walking into the doctors and getting ‘come back tomorrow’, I slept all day, one of my newest and favourite symptoms. Will start phoning the professionals again tomorrow. X