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@andrew4612 

Last reply

andrew4612

The poor relation

Apologies for the sarcasm in the topic title, yesterday I read that public enemy number one AKA N.i.c.e had provisionally scuppered the go ahead for ocrevus to be funded as a NHS approved treatment. The only drug that showed any potential improvement to people living with ppms, yet only a couple of weeks previous it was granted a provisional licence to be used for rrms, hence the topic title. Let’s hope that this will be reversed in appeal, who knows. If I am correct their are no further types of this drug/ treatment under development or clinical trials, the other trial of a different drug was suspended? I am sure some one will say they’ll be further developments,I to am,but when 5, 7 ,10 years? I understand research takes place for ppms but at a fraction of rrms ok there are a lot more with the later , it’s a money thing , the drug companies don’t do this for love , they go for returns and ppms doesn’t bring the same buck home. Ok I am having a good old moan , but even in this forum it’s got a lot more for rrms , than ppms. To end on a positive note I am really grateful I found this forum.
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@grandma
@grandma
 

Hi Andrew, it all stinks, whatever it sticks its nose into goes horribly wrong at some point or another. I am in the middle of the swap over from DLA to PIP, had all my DLA taken away, appealed straight away, got the basics back in 6 weeks yet they took my mobility car in Feb., I was awarded the highest level of DLA 24 years ago (I have spms) and have had no car and no carer for 5 Months, have to go to tribunal to get my points back to have a vehicle. Can't walk, use an electric wheelchair and mobility scooter but not considered sufficiently disabled to warrant a vehicle. MP has tried to get an early hearing at tribunal (average wait is 8 mths, it takes 3 months to order a vehicle because of adaptions) but have been turned down because my 'circumstances are not exceptional enough' work that one out! Lobbied parliament 20 years ago (along with other mser from all over the country) about the start of dmt's and funding, I was on the original trial for Avonex, which I took successfully for 23 years until the rrms became spms so feel very aggrevied but can totally understand your annoyance, this is what we fought for 20 years ago and we're still fighting now. We're a soft touch as far as Mr Government is concerned, they won't pay big bucks to the drug companies for such a possible short term gain. They want us to go and die quietly in the corner. FIGHT BACK anyway you can, involve as many people as possible, make a pain of yourself at the hospital, your GP, get the press involved, contact your MP do everything and anything you can think if. Good luck😍

@Stumbler
@Stumbler
 

@andrew4612 , I empathise with your views. But, whoever said life was fair. Especially in this capitalist world of ours. Just enjoy what you can do and don't rue what you can't. Enjoy your family and seek/share enjoyment from their achievements.