jaynecharnock 09/07/12
Last reply 5 years ago
Walton Centre ??

Hi guys,

Im new to the forum so first of all ‘hello’!
Ive been struggling with lots of burning questions recently, so brace yourselves!!

Ive had a pretty bad relapse over the last 2 months (my 4th in the 4 years ive been diagnosed), but have never received very much support off the neurology centre im currently seen at (I wont name names but my experiences have been pretty dreadful). I just wondered if anyone on here has experience of the centre at Walton (Liverpool), as its my next closest centre and at present i feel very much abandoned to my own devices. Although my consultant seems OK (have met briefly on my annual check-ups and he put me on DMDs) and so i dont expect drastic changes to my treatment, I have had very bad experiences with my current MS nurse and still feel like when i have a relapse i dont know where to turn (I break into a sweat just at the thought of having to ring her!)
Thanks for the help guys xxx

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Tones
5 years ago

Hi Jayne, I was diagnosed under the walton centre after my second relapse. My first case was under my nearest hospital and was pretty much told it was all in my mind ( which is ironic if you think about it!) and so I opted a year later when things went bad again to go under the walton. Quite speedy diagnostic from them there. After diagnosis I found the service was not as patient centred as I would of liked. Travelling all the way to Liverpool for a 4 min apointment was not cost or pesonally effective for me. There is a cracking relapse clinic though which is easy to access if you “think” (a hangup Im afraid from it being all in my mind) your having problems. Personal centred care seems to be lacking across the board in most hospitals which I find is crucial to effectively manage and personally deal with MS. Walton felt a bit like a sausage factory in many ways – in you go – wait in a big waitning room with people with every nuerological condition under the sun – get called in – out you come 4 mins later with some oral steriods – See ya. They are a centre of excellance though so if you where having major problems (of course this is all relative) then I am sure they would have the resources to support you.


f3ng5hu1
5 years ago

I sympathize with you. For all that there is good medical staff out there, there also seems to be some who not having the condition themselves seem to think that’s it’s all a breeze and that the only relapse is an incredible bout of suffering that is at least 24hours long (enough of a length of time anyway to possibly warrant some treatment via clinic/hospital) and then apparently we’re cured!!! If it’s not a ball busting long heavy relapse we’re doing fine apparently! Once that prolonged episode has gone away we’re normal people again!!!
Now this totally gets on my nerves *pun?* cos the lesions are pretty dang permanent and can cause on/off probs of varying degrees of discomfort at pretty much any time of day or night, seemingly at random and just cos it’s not lasting for minimum 24hours we are deemed to be fine! Honestly! Minor bouts don’t bother me BUT it seems even some medical peeps don’t seem to understand or comprehend just how many relapses we go through, albeit shorter ones perhaps and some we are familiar with but still the ole ms jumps out at us and surprises us once in a while and says BOO “ya didn’t expect that one did ya!”

Don’t get me wrong, i’m not seeking attention with small relapses, it’s just the misunderstanding by some that at any other time unless it’s a major long long laps then we’re FINE! not so at all.

You could try electrocuting her and zapping her muscles with a small pronged instrument to see if she catches on, perhaps better to seek another nurse though retrospectively.

I don’t often rant, but larks a lordy that felt good!


cameron
5 years ago

Here’s a radical idea. Have you considered going to London? (National Hospital for Neurology and Neurosurgery). I make the journey once a year (was more a few years ago, but now just a check-up). Once you’re in the system you can use their Neuro Response,which is a nurse-led phone service. They have all your details on computer, including loads on your symptoms, ups and downs etc. You ring anytime Mon-Fri 9.00-1.00 and get as long a consultation as you need about any aspect of your MS (and you can ring as often as you like) They can refer you from this directly to a consultant,or to one of their clinics (e.g. physio, continence, counselling, relapse, pain). Last time I used them I was wondering about meds for neuropathic pain. They recommended I try amitriptyline, had the authorisation faxed to my GP and I picked it up that afternoon! They have loads of MS patients who travel long distances and they will fit in clinic visits in with your consultant appt wherever possible. You get to see a consultant who just does MS so that helps. There are also other London hospitals who give a specialist service.

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