Someone in the US got in touch with me yesterday. A few days ago they had their first seizure, ever, and were looking for support & advice.
Within two days of her first seizure she’d had a CT scan and an EEG. She was diagnosed with complex partial seizures (the same type they think I have) and will be starting meds.
All this within two days of her first seizure!
In contrast, next month will mark a year since my first appt with a GP about seizures. I was treated disgustingly, had to fight to get on the waiting list for a neurologist, and was told it would be a 12+ month wait.
I ended up in A&E due to seizures last October, which was actually kind of a good thing as it expedited my neurology appt, & I saw her 1.5 months later. I had my MRI 3 weeks ago, and am waiting for an EEG (my neuro’s sent off 2 referrals, but the local hospital isn’t acting on them).
The reason I’m posting this is because I’m so sick of abled people not understanding what a hideous monster the NHS is, and how disgusting it is. This person had two seizures total, I’m having over 300 a month and have had no support or treatment yet.
Whenever I try explain my hatred for the NHS, ableds ALWAYS bring up ‘yeah but the NHS is free and you have to pay loads in the US, so it is better’…my dad is TERRIBLE for this.
Firstly, you can say that because you don’t have a condition that puts your life in danger every single day, that you’re not being listened to or given treatment for.
And secondly – just because I complain about the NHS doesn’t mean I want rid, or would rather pay for healthcare. That’s not the only two options there are (shit free healthcare or awesome healthcare you pay loads for). How about an NHS that gets more funding, where treatment is faster and Dr’s care + are educated? Where instead of waiting 12+ months, everything was sorted in 4-6?
That shouldn’t be too much to ask for.
I know quite a few spoonies in Canada. One has suspected simple partial seizures, and is setting a neuro, having an EEG & MRI within 2 months of their 1st appt. Their healthcare is free and so very much better than ours.
It’s not an either-or, it’s a ‘the NHS needs improving because this isn’t okay’…and frankly, if you think it is good enough as it is, because you don’t have a disability, you’re just ignorant & ableist.
I am so SO tired of living with so many seizures. I’m so desperate for help from the NHS, yet I just keep getting treated like shit.
And when people try argue that UK spoonies have it good with the NHS…I just can’t.