Where’s the Nurse..?

In recent months I’ve had several comms from the MS Soc…
Majority from the Legacy Dept enquiring about what I intended doing with all my stuff when I died…?

and then…

The recent candidates for the board had a distinct “financial Background” feel about ‘em which I view with a jaundiced eye as I hear about their spurious and tangential links” to MS, and how much they care and understand…?


Recently I’d occasion to visit the CAB who had an advisor dedicated to MS. Except they don’t now bc the funding was pulled…

I’ve struggled with various MS related situations recently and found there’s little to no support now…
The MS nurse doesn’t even reply to emails…

So, MS Soc could y’put y’hand in y’Trust Fund pocket and distribute some of those millions and millions of pounds good ppl have donated to help relive our suffering…?

Maybe after you’ve sent the intern out to get you a latte.?:smirk:

1 Like

I’ve no complaints with the MS Society but I do understand your feelings. There is an NHS problem though when dealing with people with MS - where’s the nurse :rofl: and where’s the neurologist? I have neither… and it’s not as if I don’t need the help I do but it’s just not there…

1 Like

I don’t have a problem with the Society - and as a charity they definitely do need Trustees with a financial and legal expertise and backgrounds.

The society does offer funds to those in need - £three quarters of a million last year, plus it runs its help lines and an awful lot of research is funded by the Society

You sound invested…

What have the MSS ever done for us?

What we do | MS Society

P.R. work is soooo rewarding…

It strikes me that the things you are unhappy about are the direct result of Government cuts. You can’t have austerity for the best part of fourteen years without consequences.

Only in so far as I have MS ( for 17 years) and also contribute to the Society. The biggest challenges we face are a result of government funding of the NHS - not enough neurologists, not enough MS Nurses, not enough NeuroPhysiotherapists, speech therapists etc etc and a bit of a postcode lottery in all NHS provided treatments and services

Aren’t you tending to criticise the MS Society for failures to do things that are actually outside its purposes?

Last week I had a mail shot asking for donations, this week it’s a request for a legacy in my will.
I was tempted to use the reply envelope to send a letter pointing out just how expensive life with ms is.
I was diagnosed PPMS 18 years ago. Some of my expenses include moving to and adapting a bungalow. Ramp £4,000 Automated Door system £5,000 Wet Room £7,000 Attendant push wheelchair which I replace every four years at around £500 each Powered wheelchair for indoor use £1,000 (now in need of replacement) Power chair for outdoor use £2,000
Twice daily care visits…………… this is not a comprehensive list.
I won’t be donating anything, nor will I leave anything in my will, there’s not going to be anything left to leave!

1 Like