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In Your Experience Should You Just Go With The Flow Or ....

It's me AGAIN!  happy2

I've been doing some research and looking around this site and pulling on others experience etc and as much as I have found it a real help knowing that I am not alone - I now find myself having more questions and getting a little upset at how unhelpful my GP surgery and neuro secretary are being.

After getting in touch with my neuro about my appointment I got told that even though my Doctor as asked for my appointment to be expidited it just won't happen - basically there is no neuro department at the local hospital and they don't have ANY appointments.  I was told to get a referral to another hospital or go to A&E.  After some looking around I can see that a really good neuro centre is about an hour away from me - I've asked the doctor to refer me there, the receptionist who took the message didn't sound all that hopeful. 

Looking around it seems that you are able to select the hospital you want .....  Has anyone else had a problem with this? 

Today I also noticed someone else asking about the MRI scans.  Looking at the 3T scans it certainly looks like a much better option - the local hospital doesn't have one so I have been looking at paying for one private.  The cost does look like an issue though.

Has anyone else done this and do you think it was money well spent? 

Sorry for all the questions but I am struggling with just waiting it out when my whole life seems to have turned upside down!

x

Hi Dolly,
I don’t know where you are in the country but I live on the Wirral. Although there is a neurology department in the local hospital, I was advised y my gp and a friend who is also a gp, to travel further afield to Liverpool.

I was diagnosed after a year and that was pretty quick compared to some of the stories on here.

If there is a neuro support centre near you, you could call them for advice.

Perhaps if you went to the everyday living and say where abouts in the country you are some of the old hands (meant in a nice way!) might be able to give you the benefit of their experience.

Best of luck,
Chis

Hi Chis - I'm in Cheshire and Liverpool is where I have asked to be sent. thumbsup

By all accounts it's one of the best centres in the country. 

I've checked and checked to make sure that I can deffo ask that and it seems that I can ask to go anywhere as long as I understand that any treatment etc is normally carried out at the same place.  I drive (although I'm not at the moment) and so does my partner and feel that I would rather go further to get specialists. 

I'm pleased that you didn't have too long a weight for your dx.

Thanks for the advice.

Hi dolly saw your post and thought I would comment on something that maybe able to help you. I was fed up of the hospital I was under and wasn’t happy with the consultant there and the way he was so dismissive of things (he also ignored the hospitals recommendation to have MRI scan done this month and put me down for October!) so what I did was choose to pay privately to see a top neurologist- he works privately and for the nhs but at a hospital further away from me. He wrote to the gp and got me referred through the nhs to him under his nhs hospital and I’m now due full MRI scans and vep and ssep tests within the next 4 weeks through the nhs but will see him privately for results.

That is the cheaper option as the consultants typically charge between £150-£300 per appointment as opposed to MRI scans which can vary between £500-£1500 per scan.

I used to work for a private medical insurance company so I know how to shortcut things without paying massively for it. So basically the best thing to do is to find a private hospital near to the nhs hospital that you want to use and then find a neurologist that works for both and then arrange to see him privately and then he can refer you through nhs for scans/ treatment under him. Hope that makes sense - you can pm me if you need more information on this. X

Hi Karina - thanks for that information.  I've just chased up getting my referral to the centre in Liverpool (that I originally made Friday last week) and was told that my GP has forwarded it onto another GP who has been off sick so NO ONE has even seen it yet.  I know we are only talking a few days but on top of everything else it just makes me lose a little more faith in the 'system'.

I'm going to discuss all of these options with my partner tonight and take it from there.

Thanks for taking the time to let me know about that - I'll certainly get in touch with you if I get stuck, thank you.  happy2

x

Hi Dolly,
Be careful to check out that you have been referred to an ms specialist. The Walton centre has lots of general neuros, I’m on the second and he is wonderful, but, and there always is one, I have to go to Liverpool for all appointments including ms nurse who is massively overworked.

The Walton centre is very slow to answer any correspondence, and I’ve had to do a lot of chasing, but I have found they are very caring when you do attend.

Feel free to pm me if you want to know anything,

Chis

Sent you pm Dolly!

Hi, I`ve been messed about by many neuros at my local hospital and was offered a referral. This was done, but the MS specialist I wanted to see reffered me back with suggestions as to what to try next! I was gobsmacked! 

 

Like you, I thought we were allowed to choose another hospital. Now I feel like if i did see the guy concerned, he would be `off` with me. Can`t win, eh?

Years ago, at the start of my problems (1999), I saw a chap privately for an initial consultation.. Then I saw him again on the NHS. he wasn`t too helpful either time. I dunno if I would urge you to have a private MRI, as the cost is so high.

luv Pollx

Hi Poll

It's a total nightmare isn't it!  I wonder if these people would be so dismissive if it was they themselves who were suffering?

I really hope that you get 'sorted' soon. 

The cost of a private MRI more or less rules it out for me but there have been some really good suggestions above that I'm going to look into.

Take care x

Now I'm just venting lol .... sorry, please feel free to ignore me BUT ....

To be honest I really have had it with my GP surgery, it seems that no one bothers to read anymore!  I'd started to think that I was just being impatient but today I followed up with the surgery after no one got back to me about a new referral (because the wait is so long at the local hospital and they said that even though my GP had requested the appointment be expidited it wasn't possible and I needed to be referred somewhere else) appointment that the doctor asked for and got told that the request had been passed to another doctor and she was off sick so no one was even looking at the referral. 

A short time ago I just got a call from the receptionist there who sounded very embarrassed about everything and couldn't stop saying how sorry she was - it seems that the doctor had passed it to the other doctor because he thought she had originally referred me (which she hadn't and I had explained this several times) and she said that as I wanted to get an emergency appointment she would need to see me before getting me admitted to hospital!!!!  (Where has that even come from??)

Even the receptionist knew that this was rubbish and no one had bothered to read my notes.  I've finally got an appointment to go in and see this 'new' doctor tomorrow as the receptionist thinks that this is the quickest way angry.

Sorry for venting but having to wait so long because of the way the system runs is one thing, having to wait because no one can be bothered to read is something else!  Grrrrrr :(

Just a quick word on private MRI scans. It is possible to get some really good scans done, but it is also possible to get ripped off. You need to choose somewhere with a 3T scanner and ask them what their MS protocol is. There should be a variety of scan types and orientations (axial, coronal, sagittal) and, very importantly, the slices need to be a maximum of 3mm. If the scanning centre staff can't answer your questions about the protocol and the slice thickness or the scanner isn't 3T, then walk away. You should pick somewhere that provides a proper neuroradiologist's report too.

A word of caution: some neurologists will not look at scans done outside their normal scanning centres. So always check that they will be accepted before you get a private scan done.

Karen x

Thanks Karen, it's all so frustrating and with all of your advice its a tad confusing too :)  Although I have to say all the advice you guys have given me is welcome - I know that I am getting myself frustrated and its just not helping.  I'm just going to go to my appointment tomorrow and hope that better news comes from it.

Thank you x

I am now seeing a consultant through the NHS at the QE in bham but my first appointment was private because my mum was scared and insisted. As such, I ended up in a great place…I don’t know if it’s worth trying that route. It cost about £100 for the initial consultation.

Thanks Elle.  I think I am going to wait the few weeks until I see the neuro again and then see how I feel about his reaction.

Thank you everyone for taking the time to reply and give me your advice (and listen to me whine!) - it really has been helpful.