New

[LindaB]

I was with Salford Royal but they seem to have forgotten about me. 😕xx

Name and shame them on Twitter😡

[matthew55]

I was with Salford Royal but they seem to have forgotten about me. 😕xx

[Rosemary6NT]

I am under the Royal Stoke hospital and once I got the diagnosis all hell let loose and I am inundated with OT, Physios, and a support nurse who answers my email within the hour.
My GP practice is also helpful.
I can't complain at all.

I am also lucky in Milton Keynes/Oxford where we have an extremely proactive specialist MND nurse supervisor and team and had the same good experience. In fact the first month/6 weeks was full on exhausting!

[keno]

The hard bit is getting that first appointment at the hospital and where a good GP comes in who will push them.

[keno]

I am under the Royal Stoke hospital and once I got the diagnosis all hell let loose and I am inundated with OT, Physios, and a support nurse who answers my email within the hour.
My GP practice is also helpful.
I can't complain at all.

[shelly21]

Hi Ange this happened with me. I live in West Midlands & basically mnd nyrse was very slow & didn't refer me to anyone. I spent weeks chasing different debts and my useless g.p practice. In the end I logged formal complaint siting the gold standard re terminal illness & bang all of a sudden I got some help. Please complain.

I think you need firstly to go through pals at the hospital you were diagnosed at. Ask for urgent contact from mnd nurse. Then g.p refer you to palliative care team urgently. Please be assertive and get what you rightly deserve x

[Ellie]

GPS organised blood tests and I haven't even got the med riluzole, what a laugh, going to change GPS.

No, that's probably for baseline data - need to know what your normal liver enzymes etc. are before starting Riluzole. xx

[Rosemary6NT]

Ange I'm no expert but I think the neurologist has to prescribe Riluzole in the first place, it was some weeks before I got mine.

[Ange]

Yes must admit Rosemary6NT, it was quite a shock, as one neurologist ruled it out, so started thinking must be something else, so such a shock when the new neurologist said I had mnd, even my family was reeling from the shock. I struggle each day as I walk with a Zimmer frame and always fearful of falling, my right hand isn't working correctly now, what next I ask myself. Luckily i have a younger brother who calls every night from work, bless him. Got a meeting with neurologist on the 16th, so wrote something's I want to ask. GPS organised blood tests and I haven't even got the med riluzole, what a laugh, going to change GPS.

[Rosemary6NT]

Hi Ange welcome. I joined just 2 days before you. Getting the diagnosis is a very lonely feeling but the welcome here is heart warming. Wishing you all the best. x

[matthew55]

Mary C You're singing my song soul sister. ✌️♥️💐😘xx

[Shaun]

Hello Ange ,
just so you don’t feel alone, and try a reassure you, I am slow progression (2 years) I have never seen SALT , or seen OT , our health authority doesn’t even have a specialist nurse , my only contact is with bimonthly physio who just monitor my progression. And a 6 monthly consultant review.
it could be that yours doesn’t need full on contact yet, we are all different and services will be based on need. It will be trundling along and you will be in system, but in these COVID times everything else has taken a back seat
If you are feeling lost in the system, which does happen get a GP appointment, or contact your consultants secretary and ask ,what happens now

s

[Mary C]

Hi Ange ,I took riluzole initially as neurologist was advising me to do so.I later decided I didn’t want to continue with it as my neurologist said he thought it might just give me a few extra months.I don’t want to extend my time with MND.

Its a personal decision Ange and I suggest you seek neurologists opinion ...you can always change your mind at any point.
Best wishes
Mary x

[Ellie]

Ange Yes, I've been taking Riluzole since being diagnosed.

Initially it made me tired but that lessened with time. If you take it, you will need regular blood tests to keep an eye on your liver function. xx

[Ange]

[QUOTE=Ellie;n66930]Ange Do you know what type of MND you have Angela?

You seem to have slow progression given your long road to being given a diagnosis, which might have an impact on which services should be priortised for you. xx[/QU
Yes the consultant did say it's slow progressing. I am starting a drug called riluzole, have you had this med