Dear reader,I hope you are still fighting the good fight and looking forwards to Easter.
Whilst replying to Loola’s post yesterday I had a different idea about the fact I’ve never had an NHS MRI scan.Because of this I am going to put it to the PCT that I’m willing to take goods or services to the value of the MRI scans I haven’t had in the past 11 years.
I’m thinking of Sativex to the value of what they decree to be the cost of the scans. Silly I know,so after they have refused for the second time I’ll inform the Daily Blackmail and see where we go from there.
I could still be taking delivery of Copaxone at £5000 a year, but stopped it nearly three years ago. That’s saved my PCT nearly…
Most people only ever get one scan - I didn’t have one till I had been diagnosed for 7 years [didn’t have them in my day]. My neuro says that there is no point in additional scans as the numbers of lesions doesn’t correllate with the level of disability. I have only had more now because I’m on Tysabri.
I’ve never had an NHS MRI scan either - all paid for privately on own insurance. That lot worked out at over £1500, from memory.
And all the blood tests, which were £800. And another £800 to get them all done again, because the first lot threw up an anomaly (with hindsight looks like probable contamination at the lab), and they had to redo them to make sure.
Oh, and a chest X-ray to rule out a couple of rare things (that was another few hundred).
Then I declined DMDs - that would be £thousands per year.
And you could argue I saved them a pot of time and money by not going to the doctor’s for years, about “trivial” symptoms - but waiting 'til I thought I’d had a stroke.
If I got back all the money I could have cost the NHS, but didn’t, over the years, I reckon I’d be a wealthy woman. Or could have Sativex for life - one or the other.
WB - I’ve had 4 MRI’s, having my fifth tomorrow (7.50 am on a sat, shocking!) They must of spent your funding on me. I’ve only been on a neurologists books for a year. Suz xx
it seems like we are both still fighting the fight for sativex.
i argue every time i see my rehab doc that i am costing the nhs sod all in comparison to others and never have done. ive tried the other meds for spasms and they all make me weak and spaced out to the point of non function. ive done as they asked and was told by another rehab doc that i could try sativex when it was first licenced.
the pct keep coming up with various reasons for not letting me have it from cost to no evidence that it helps despite it being licenced for msers. its a bit of a buggar when you want nothing more than pain relief but are flatly refused by the so called caring nhs.
im thinking of getting a government ’ back t work’ grant and setting up a herbal alternative business. im sure that would go down like a ton of bricks… x
Thank you all for replying.This is the time we REALLY need the reply to the reply…RTTR.
Information is power,but by the management making life easier for themselves this [very filtered words] place is a very cold and sterile environment. Our freedom of speech has been ripped from us,and that is all we have sometimes.
At present I am battling with my PCT, have an ongoing complaint with Merseyside Police and have by no means finished with this place.I would love to have been at the meeting when this effing software package was voted for.
Regards, Jeremy Meldrew, aka Victor Clarkson.
When I stop kicking, I’ve stopped caring and I would never rest in peace.