AIBU - Todays doctor's appointment disappointing and frustrating

[AnxiousandExcited]

I have been having some sort of seizures and weakness, and a MRI showed grey matter heterotopia, which in most cases causes epilepsy. I had the MRI privately - my GP says that the current wait list for a neurology appointment is around 1.5 years and there are approx 7000(!) people waiting for an initial neurology appointment at my local hospital. He says that if I can, I should have a private 24hr EEG to check for epilepsy. I can't afford it - it will be £1370! I have recently started getting PIP, but at £60/week it will take a while to save up!
Meanwhile, all tests that my GP can do himself (ECG, bloods, Loop Monitor) are coming back as 'basically' normal - what that means I don't know, I suspect they are a tiny bit off but not enough to jar the nhs into urgent action.
I don't mean to bash the NHS - the doctors and all the staff are working so hard right now under impossible circumstances.
The doctors and nurses keep telling me that 'it's nothing to worry about' - and I'm not worried - I'm just feeling rotten, can't look after my children and am basically bedridden at the moment! AIBU to be so disappointed and frustrated?

@AnxiousandExcited I would definitely call them to discuss options. I have only had to use them once for an operation & had excellent care and advice & the off few other smaller things. The treatment was second to none & speedy. I pay because I want a back up as I am concerned about the current position of NHS- Beneden is not private healthcare it is designed to step in when the NHS can not.

Great news @AnxiousandExcited. Getting the diagnoses is key, don't be too disappointed if the 1st lot of meds don't work. I've tried 5 different meds over the years and am about to start another different lot. Eventually they do find one that works for you. Here if you need a handhold at any point

I would recommend that you book to see a private GP. Not a same-day walk-in place, although these can be good for some things, but a private GP who builds up relationships with their clients. It'll cost you in the region of £100 to £200 for an initial appointment (that's London prices) but they will be able to look through your notes and talk to you and then make recommendations about what to spend your money on and how long you should or shouldn't wait to press ahead privately, based on your needs and goals. If they are just interested in your money and pushing private care then find a different one. So make sure discuss this approach with them via email or in a brief chat, before booking in.

You can tell your NHS GP to send your notes across securely (not necessarily all of them from since you were born, perhaps for the years since this problem started or from when you started having actual tests for this problem), having arranged this with the private GP first. They can then can review them and decide what is needed such as a chat with you, do another set of blood tests first or move on to a referral for more major tests.

They can spend longer on each patient (for obvious reasons) and can tailor things more personally than NHS GPs can (due to the myriad NHS rules and targets which work at population level but not necessarily the individual).

If you are in London or can get here easily I can recommend someone I used last year. PM me if so.

I should have RTFT. Great to hear you are making progress OP. Hope my general advice might be suitable for some other readers - I had good results this way (and spent about £500 before being referred on to the next stage, which was then done quite quickly as it needed to be, back in the NHS).

@Anaximedes thanks for the good wishes - hopefully things will keep moving here!
@fakereview @DirtyDancing i will certainly have a look at this!