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mmhhpp
10 months ago

Rubbish…….


stumbler
10 months ago

@rachaellouise . there’s going to be some and others, ranging from the conservative and clueless to the proactive and knowledgeable.

I’m not sure how these answers would help you. Are you questioning your team?


rachaellouise
10 months ago

Yes I am ! I’m fed up of being them leaving you feeling hopeless not hopeful
Discouraged vs encouraged
Positive vs negative etc … fed up of living in the past … move with times …


rachaellouise
10 months ago

@stumbler


mmhhpp
10 months ago

Yes Rachel, i am a knowledgable person who reads about ms everysingle day, tired of protocols and conservative consultants, tired of them securing their funding, salaries,they aim publicity….some research is not relevant and they do not aim hard enough to find a cure……after 8 years i have seen it over and over…..
.


mmhhpp
10 months ago

@rachellouise


rachaellouise
10 months ago

@mmhhpp

Yes it’s frustrating I agree with you entirely
I am still just trying my protocol and lifestyle as these things take time and need to be stook with .
Yes get their funding then do nothing …. much …. as long as astronomical salaries secured then they can go and have a cup of tea ☕️


mmhhpp
10 months ago

Unfortunately Yes👍


rachaellouise
10 months ago

@mmhhpp

Anyway their probably all not like that their are probably some kind people out their who have a conscience . I choose to believe their is some good in all this and hope


stumbler
10 months ago

@rachaellouise , you can request a referral to another Hospital/Neuro if you want. This can be your choice, as long as you can get there……….


wjgregg
10 months ago

Hi Rachael,

As I have told you already, I think the team at Leeds General Infirmary are great. I was so lucky to get them. As you know, I was almost sent elsewhere. Wise words from Stumbler. You don’t have to put up with rubbish service. We’ve paid into the N.H.S.. over the years. It’s for the patients, not the doctors…

Jon


rachaellouise
10 months ago

@wjgregg

Yes I know we had that conversation but I could see a probate neuro in Leeds. My neuro is okay but I would not have access to a ms nurse privately and that worries me a little bit that I would have no point of contact even though I’m pretty much feeling alone anyway…

Anyway hope your feeling better and my email helped you a bit the other day . I know it’s not easy after relapse .

Rachael


mmhhpp
10 months ago

You can always call ms society sometimes they give good advice…@rachellouise


lorri57
10 months ago

I am with the Neuro team in Plymouth, I have access to MS nurses when I was concerned I was relapsing I got an appointment within a week. But sometimes we need someone to talk to, and that’s not always easy,

I have found some lovely MS friends locally we meet once a month and support each other which helps when feeling anxious. See if there any groups near you if not start one.


strictlysoca
10 months ago

Hi Rachael
I changed neurologists and I can still see my local MS nurse. In my area there isn’t an MS team so we have to go to a prescribing centre. You would still be able to access the local nurse – she or he would have to work with the new consultant. The MS nurse team at the other centre would not be able to do visits out of area but would be on the phone etc.

I changed from Leeds to Sheffield. I see you are in Clitheroe so both centres would be doable I reckon.

All the best

PS I don’t think the team in Sheffield are getting huge salaries and doing nothing – they are the stem cell experts. I also know that NHS staff are knocking themselves out to provide services in the current toxic middle management times. I gibpve thanks everyday for the nhs


rachaellouise
10 months ago

@strictlysoca

Thanks for the info .

The thing is it not necessarily the staff it’s the services provided that are just not working ! They are delivering services that are not working …… it’s not working, Deliver services that work ! things need to change to the present day .

The list is endless :-

30 weeks wait fo mri scan
2 years to diagnose ms
No modern technology
Old depressing buildings not conducive to healing
Staff shortages
Not working with the 21st century
Too much waiting – not good when your poorly
Everyone should have access to dmd not cherry picked … have to be poorly enough to get on a trial well what about when your not that sick help them then, not when their sick . – it’s bonkers – whose come up with that genius idea ?
Let’s help people get better not stay sick

There’s so much that isn’t working . There needs to be better – it’s not acceptable … so yes glad that that’s their but I know it could be better and health is the most important thing to peoples lives .

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