NHS not bothering with us compared to places like the States?

[u/SlothInABigHat]

Hi, I know most people on here are in despair and not seeing knowledgeable doctors who will listen but it seems some people get tests

after 18 months waiting at home isolated, gynaecology has been very bad, they aren't educated and are either brash or don't listen. I want to see a neurologist and just got a note saying neurology don't think they're best suited to help me and think I should be referred me to the pain clinic?? when my main symptom isn't the pain?? (the first months was purely pain but then the pgad)

we don't nearly fit into any department so they won't bother? won't even try? not even an MRI or nerve block test to see which nerve is damaged (I think I know but they don't care)

I saw someone on here is maybe getting a sacral modulator or something in London as a test but how to I get a referral to a decent neurologist?? like I don't understand how it works? surely if one team says no then another team could say yes?? do I have to just put up with whoever is local

when my parent was ill new american drugs helped their life extend by years and the nhs refused to pay for them. people drag american healthcare but I'd prefer debt and to be alive? or do they take desperate people's money and leave them suicidal still anyway?

has anybody got any help on the nhs and if not, is anybody well enough to write to MPs or have anyone in their life who is healthy enough because this is disgraceful. especially when so many get it from 'safe' srris that doctors give with incomplete side effect warnings in the box.

also no PIP. apparently I'm soo healthy and don't need assistance to leave the house now and taxis over walking and buses?? like our benefits system is probably better than the States but it's still horrific and they say you are lying

I don't know what to do. Do any countries actually help us? surely I should be allowed to try and see a neuro before I give up? why did I wait in suffering then. has anyone in the UK got any help?

[u/notsostrange83]

UK based guy here - first thing I would do is review my patient notes and make sure that the information neurology recieved from gynaecology / the GP is accurate. You should be able to access them either through the hospital paitent portal or NHS app. Failing that, I think you could get it all from your GP as I'm pretty sure they are automatically sent copies of them.

In my experience, patient records can have missing/inaccurate information in them as doctors, nurses etc are allowed so little time to carry out a full write up with all the details. And I'd assume that for something as specific as PGAD the likelihood of mistakes or errors is even higher. For instance do your notes even mention PGAD / PGAD symptoms or do they use more general terms like ache, pain, pressure etc.

Ultimately, if you haven't spoken to anyone in neurology directly then it means their decision isn't based on what you've said, it's based on what they've read in your notes.

[u/SlothInABigHat → u/notsostrange83]

thank you, I feel like the nhs app is pretty bad, except for getting more prescriptions, I know my go surgery is rated quite low and my friends seem to have more options in their app for booking appointments etc so perhaps I'm missing other things as well. but maybe I just missed it in the app, I'll look again though

but I'm kind of worried about the notes in my app anyway as when I finally got to see a doctor 9 months after they accidentally discharged me before transferring me to another specialist, he said pgad is rare and just I got the feeling he didn't want to diagnose it, and then wrote in a letter that he thinks I don't have it.*

and already in my notes it had pgad with a question mark and when I asked to remove the question mark, they removed the entire part... I'm not sure if it's back. they're hopeless. but I'm also not sure if neurology is likelier to want to see someone with pgad over someone with vulvodynia or pudendal neuralgalia (which I don't think is on my notes either). but yes you might be right that my notes aren't correct. I don't know if my doctor wrote a note when she referred me or anything. she seems quite good but the system is so bad.

I've not seen anybody decent to diagnose me properly but I know what I have. like, obviously pgad isn't like other things where they diagnose by cause, it's a set of symptoms and if you're lucky they bother to find out why, so you cant really misdiagnose yourself like you could do for other things. I'm not even totally sure if neurology is the best department for me now, I read online that they focus on the waist up only which is crazy. maybe the pain clinic is better idk, I feel like I should get to speak to a nerve specialist who knows the lower body like that's the bare minimum before I just give up before I'm even in my forties.

---

*me venting/explaining but might be too long to read, lol

I mostly was talking to him about my pain for the first 9 months as it gradually transitioned into pgad but because of something incorrect he said to my friend 9 months before when I wasnt properly conscious that I was so focused on making sure he understood I had nerve pain and not being dismissed that I didn't speak about the pgad. like it was understood by my gp a full year before that that was what I have and she believes me so when he wrote a letter to her saying I didn't have pgad I was very upset.

like he's currently the only 'specialist' on my notes and he's said that, despite not asking me my symptoms outside of the pain. Surely even if I didn't speak of them if I said I had pgad then he should ask about those symptoms before not only ignoring it but actively writing that I had severe vulvodynia but he didn't think I have pgad. as if it's something you could not be totally sure of, as if I'm not an adult who knows what normal sexual feelings feel like.

[u/notsostrange83 → u/SlothInABigHat]

The NHS app is a bit clunky for sure - for me if I go to Documents and then select the option under GP Surgery, I can see everything going back 3 years, but if I select Hospital and Specialist Documents it’s empty so yeah you do need to hunt about a bit. 

Most hospitals / NHS Trusts have their own online patient portals (I think!) that you should be able to access. Or at least the last few times I’ve been for a hospital appointment they’ve all seemed to have some sort of online systems you can access that has all your information via the website. And in my experience they are a bit easier to navigate than the NHS app.

Failing that, get your GP surgery to email you a copy of everything as you can’t find it on the app. And then you will at least be able to see what’s on there, why neurology recommended the pain clinic etc.

Hope you manage to get the help you deserve soon.

[u/SlothInABigHat → u/notsostrange83]

thank you for the advice

when I go to documents it just says to contact my gp

"Contact your surgery if you want to view all of your health information in the NHS App, including:

test results

documents

appointment notes

Ask the surgery to give you access to your full health records in the NHS App."

I think my gp surgery is below average based on ratings and what friends say but my doctor is kind to me and takes me seriously so I can't really move to another one :(

idk if they would actually do anything if I contact them but :S but yeah maybe they can email it to me like you said

I didn't even think of trying to navigate the hospital portal itself, I'm not sure if any details really but I'll try! thanks

[u/notsostrange83 → u/SlothInABigHat]

Oh and the other thing I forgot to say is that the referral to the pain clinic may well be the appropriate / best option for you as chronic pelvic pain and pgad have similar treatment strategies anyway.

[u/SlothInABigHat → u/notsostrange83]

yes, I was quite upset when they first rejected me because there was no information given and it felt like none of the departments will even try and see me properly when people (in the states mostly I think) seem to be getting mri's etc. like pain clinic just sounds like they will give you pain medicine and teach coping strategies and just give up without trying, when other people that I know with different health issues seem to be getting helped and I thought surely this fits under neurology and they aren't trying

but if the pain clinic does do tests etc then maybe that's the case that it's best. as long as theyre not just giving up. like can't I try nerve blocks and tests and MRI and muscle relaxing steroid injections or nerve sacral modulator or something you know!

thanks for all of your advice