I’m sorry ive been a bit absent, this year has been a bit tricky…
It actually started in Nov 2023 when I had a mild disagreement with my neuro. I currently take multiple drugs a day for the spasticity in my legs and I had asked if I could try botox or be referred to the Sativex clinic for medical cannabis treatment. He said no, my only option was to have a Baclofen pump fitted – which is surgically implanted into my body and, similar to an epidural, delivers muscle relaxant medication directly into the spinal cord. Sound dramatic? That’s because it is! Not being funny but that’s a huge cost (funding has to be applied for) for something that may or may not work when a couple of botox shots would be a fraction of the cost. But the silly old fart was having none of it, I expressed my displeasure at his approach and the old bastard struck me off his books! His exact words were “I shant be seeing you again”. Ok, well, I don’t particularly want to see you again either, you useless, outdated old man. That’s not the best of it though…
About 15 months later it suddenly dawned on me that whomever i was supposed to have been sent to by the old coffin-dodger hadn’t materialised I called my MS nurse to ask. At which point I was informed that no tertiary referral had been done. He had literally cast me adrift with a big fat “Fuck You” and wiped me from his over sensitive memory. The audacity! So she sent a request to my bloody GP in order for me to start the referral process again. Jeez, if I roll my eyes much more, they’ll fall out of my fucking head! That was back in March 2025, my new Neuro appointment is next month…
So that was all quite annoying but there’s more… I’d asked my nurse previously for an Occupational Therapist to visit when I moved house a year ago and when I chased it up the response was “oh, what did we want that for again?” 🙄 and when I had previously asked for physio the answer I got? “Sorry we don’t do that” when I asked why not, citing that stroke sufferers are given physio and even full on rehab, I was given the mother of all responses. You ready for this? I was told “people that have a stroke are likely to get better”!! Well thanks a fucking bunch for that.
So all of this royally pissed me off. So much so I created a petition to the UK Government requesting they urge the NHS to offer us, people with progressive forms of MS, the same care and treatment that RRMS sufferers receive. Quite frankly the difference is stark and, without trying to sound like a petulant child, it’s not bloody fair. It’s not right that some people are deemed worthy of these services while some of us are left to fucking rot, hopefully quietly without making too much fuss or noise. Unluckily for them I’m a bit of a gobshite and I’ll happily make lots of noise 😇
But, as they say, strength in numbers. And I need your help. Just a teeny, tiny bit please. If you’re in the UK could you add you your signature? It seems like a mammoth task to reach 10,000 signatures but I know we can do it together!
🧡🧡
The Sweary MSer 
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