Hi all,
I shall keep this brief - Through my work I have a meeting at No 10 with Philippa Stroud who is the chief advisor to Ian Duncan Smith the ‘Welfare’ Secretary.
I would love to take some points/anecdotes etc from Forum members to her about the issues facing everyone affected by MS.
Look forward to hearing from as many of you as possible.
All the best
G
Hiya, ask if the disabled are to pay for the only rise to be obtained by public workers, the ten grand for the MPs, brian
Hi Grazo,
Would it be possible to get in contact with the Campaigns team as they’ll be able to give you some pointers…
Drop them a mail at campaigns@mssociety.org.uk
Kind regards
Stewart (admin)
Hi Grazo… good for you!
Can you ask why they can’t take the information from our highly specialised neurologists and our GP’s about our condition?
Why we have to ‘prove’ that we are unwell even though we have got a critical, incurable, and progressive desease?
Why we feel that we are charged guilty and have to prove our innocence?
Thank you, and best of luck,
Pat x
Hi Grazo,
You could ask why DMDs are rationed when they have the ability to slow down disease progression and enable people to live independently for as long as possible. This would take the pressure off health and social care services, but primarily it would help people with MS live fuller lives for longer.
Thanks, Mary
Hi Grazo’ Can you ask why they don’t recognise fatigue or the constant pins and needles and numbing pain. Is it because they can’t see them? Thanks, Chis. Ps let us know how it goes
Why are there still post code lotterys when it comes to getting Sativex on the NHS?
Why are there still post code lotterys when it comes to getting Sativex on the NHS?
[quote=“Snow Leopard”]
Hi Grazo… good for you!
Can you ask why they can’t take the information from our highly specialised neurologists and our GP’s about our condition?
Why we have to ‘prove’ that we are unwell even though we have got a critical, incurable, and progressive desease?
Why we feel that we are charged guilty and have to prove our innocence?
Thank you, and best of luck,
Pat x
[/quote] Brilliant Pat, this is what i want to know and you’ve put it far better than I could of 
Grazo - This is exactly how I feel and would like an answer to. Thank you. Sam x
[quote=“Snow Leopard”]
Hi Grazo… good for you!
Can you ask why they can’t take the information from our highly specialised neurologists and our GP’s about our condition?
Why we have to ‘prove’ that we are unwell even though we have got a critical, incurable, and progressive desease?
Why we feel that we are charged guilty and have to prove our innocence?
Thank you, and best of luck,
Pat x
[/quote] Brilliant Pat, this is what i want to know and you’ve put it far better than I could of Grazo - This is exactly how I feel and would like an answer to. Thank you. Sam x
Thanks guys,
I’m meeting her on Friday so will let you all know how I get on. I have printed off all yout questions and will make sure she gets a copy for her records!! Heading South (Oh I’m in Glasgow) this afternoon for two days of meetings to discuss a broad range of Welfare issues and I’m in the middle of a relapse. Its gonna be tough tough tough but gotta go. I can’t miss this opportunity.
Looking forward to it as well - Never been to No10.
Take care all
G
I would love to know why I have no ms nurse, got diagnosed via a letter and have been told that unless I have significantly changed my neuro will see me in a year. no dmds offered , no support and pregabalin and amitriptlyne to try to control pain.Its fab living in north yorkshire.
Good luck with the meeting
I would ditto Pat’s comments, as someone that could write what I knew about MS on the back of a postage stamp 9 weeks ago, today I have been told I have likely PPMS and I’m more terrified about how I’m gonna get by with all the paperwork I’m going to need to deal with now.
I’m self-employed and everything seems to be aimed at employed people - when my current contract ends later this year, I’m a bit stuffed really! I can’t commute to London without difficulty so would be reliant on being able to get a contract alongside my husband so I can hitch a ride. There doesn’t really seem to be any support in that way…
Hope it goes well
Sonia x