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Anyone at The Walton Centre?

Hi all, I tagged onto someone else’s old post to ask this and realised should have started new post. Wondered if anyone seen at Walton Centre, Liverpool? I was diagnosed in June and am being referred by current neuro there to see Prof [Name removed by moderator] to see where I go from here. Was told would get MS nurse then but neuro didn’t realise 3 month waiting list to see the Prof. Have rung nurse helpline as have so many questions and need help and advice with meds and symptoms. Is there only 2 nurses and if anyone is seen by them is it months to wait or can they talk on the phone? Says there are 4x weekly clinics in Walton?? Thanks if anyone can help me. Carolyne.

Hiya Carolyne.

I recently moved from Sheffield back to the Wirral.

In Sheffield they have 5-6 nurses and Manchester have 8 but yes we only have 2 nurses covering a large area of the North West including the Wirral, Carolyn and Fiona. Supposedly, the PCT won’t fund anymore. It can be months to wait and they seem to be loosing consultants as I seen one for the first time and then a month later he left the country - I must have upset him! My new appointment has been put back 4 months for a new neuro. It also seems a bit chaotic there as they are building and have a lot more people getting referred to them at the same time.

According to info the nurses, physios, OT will speak to you on the phone - haven’t tried yet though.

Take care,

Marty

Thanks so much for your reply. Everything just so confusing, shock at diagnosis then no contact with anyone for 3 months. I have left a message on nurses answer phone which does say they are short staffed. My GP is great but doesn’t know about MS and says my first port of call wil be MS nurse which I don’t have. They were building and changing things last time I was there in June, fingers crossed they call me back. Carolyne.

Hi Carolyne,

Welcome to the marvellous world of MS, I’m seen annually at the Walton Centre and have recently changed neuro’s to Dr [Name removed by moderator] after the excellent Dr [Name removed by moderator] emigrated to Australia in January.

There’s a relapse clinic weekly (used to be Thursday but I think it’s Wednesday now) if you need to see someone urgently, just ring and leave a message for the MS nurses and they will book you in if it appears that you are relapsing.

The MS nurses aim to get back within 48 working hours and the number is 07976317342, you can also email them with forename.surname@thewaltoncentre.nhs.uk, if you know the name of your MS nurse. Any general questions in terms of medication and symptoms might be best addressed by email?

I’ve always found the staff at the Walton Centre to be excellent from the domestic staff to the neurologists – this is Carolyn speaking about what she would do, as a doctor if she developed MS - http://www.youtube.com/watch?v=YMxEwSpaGTM

When you go for your review with her, remember to write down a list of all your ‘issues’ – symptoms, treatments and any questions you may have. It’s easy to forget once you’re in there.

Hope all goes well

Hi Anu, That is really helpful thank you so much. I have to say all the doctors and nurses so far have been brilliant. Will give it another day or so and try emailing. Have been keeping a weekly diary to take with me, not daily as don’t want to bore her to death! The neuro who diagnosed me recommended I wait to see Prof Young and he has been pretty spot on so far even when I didn’t believe him that I could have MS. Needless to say I believe him now with the way I feel not so much 38 but 88 in the space of 5 months. Thanks again. Carolyne.

Hi Carolyn, Welcome to the lunacy that is ms. I have replied to you on the new to ms forum, I am under dr Wilson who is amazing! Please feel free to pm with any questions you might have, it’s hard at first. I have a feeling that Fiona is on holiday at the moment but they are going to run a “new to ms” course in September in Liverpool. I would phone Prof Youngs secretary to ask for a place on it as Dr Wilson recommended it for me as he said all questions would be answered during that event and it was good for seeing its not an end of the world diagnosis. Good luck with finding your answers, Chis

Hi guys ! Went to Walton last Friday! Have seen the most amazing guy! [Name removed by moderator] then sent me to see an Ms nurse and physio! To help with tiredness ! Received a letter today saying about a follow up appointment in October with MS Nurse so amazing and so quick Xxx while at the Walton Cenre met a guy called Chris on a volunteer desk regarding Ms ! We had a good chat ! This guy deserves a medal ! Xx Such an inspiration to me anyway ! Chris thank you ! X

Hi ! Carolyn ! My name is jen! Lol Went to see Dr. [Name removed by moderator] last Friday amazing guy ! He just understood ! Sent me to see a op and a physio ! Who were also brilliant. Arrived home from work today to a letter asking me to go to see an MS nurse ! I live In north Wales so getting to Walton can be Difficult! Although can see Dr. [Name removed by moderator] in Chester! Regardless to have a Ms Nurse is so amazing! Xx So very lucky to have this treatment! Xx In one of the best Hospitals for Ms ! Xx Hoe you are ok? Xx