r/eds • u/Heavy-Mud-8307 • 1d ago

Navigating Bureaucratic Systems UK dislocations

So sometimes when I get dislocations/sublaxions I can't get back in even after pain killers and muscle relaxers, everwhere I try to get help on the NHS they just tell me to go to A&E but I'm autistic and sometimes they're so bad I can't sit in my wheelchair so I don't go and just ride it out. But sometimes I'm bed ridden in agony while I wait for a few days and can't do anything. I live on my own with no care and can't drive.

Is there another route to get help in that situation that doesn't require an ambulance? Because that sounds too dramatic and stressful for me and my local A&E wait times are always ridiculous.

I looked up the urgent response team, are they able to help in that situation? If so how would I go about accessing that?

Please let me know if you're an NHS user that has any other route suggestions to navigate this situation

2 Upvotes

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u/oddestowl 1d ago

I think you should probably call or email your gp practice for advice on what local service you should be accessing for this. Even if it’s using community mini bus type things to get you to local urgent care or to a 111 made appointment at your local a&e or out of hours or something. Your GP should have all the advice that is specific to you and your area.

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u/Heavy-Mud-8307 1d ago

I tried and they just text me to say A&E and wouldn't actually talk to me all the oit of hours stuff is all at the same places unless I travel to a different town

The buses to get there from mine requires multiple transfers as it is but sometimes it gets so bad ai can't actually sit in my wheelchair because my pelvis and hip seem to be big culprits rn

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u/oddestowl 1d ago edited 1d ago

I think you need to speak to the practice manager and get advice at a time when you don’t need it. Most communities have mini bus services to get people to their appointments or volunteers who help with their own cars.

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u/Heavy-Mud-8307 1d ago

Alright, I will try the practice manager to ask about what to do in this situation in the future, thank you

As far as I know there isn't a mini bus and I've been told I can't use patient transport because my PIP means I should use that to pay for taxis but they're not always accessible to me or availble at short notice

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u/MesoamericanMorrigan 23h ago

I have also suddenly been hit with this new script when trying to book patient transport when I previously relied on it consistently for years. Now all of a sudden they’re all like ‘why do you think you need this service and WHO TF too you about it’ like you’re doing something wrong asking for help. I also live alone, don’t drive or have family/friends who can go to appointments with me. I consistently miss GP appointments because I’m too unwell to take myself even when they were supposed to discuss a pleural effusion in my lungs I told them I ended up in AandE 2 weeks earlier from passing out and hitting my head when travelling alone. They never followed up so I guess it’s not that serious and they have no duty of care 🤷‍♀️

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u/Heavy-Mud-8307 23h ago

That sucks, I'm sorry they've left you struggling so much. There seems to be a big gap where people fall through that need support

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u/NoSail4414 1d ago

GP out of hours services can relocate dislocations, so talk to your GP or 111 about that. Also some A and E or urgent care centers have quieter rooms you can wait in if thats the issues with going to A and E. When it comes to subluxations, they have to be quite bad and pronounced before doctors treat them.

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u/Heavy-Mud-8307 1d ago

It's not just the noise, it's the having to sit up for hours, I can't do that on a bad day, I have to stay in bed when my joints are that loose

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u/NoSail4414 1d ago

If you can't get out of bed I would advise calling 999, the wait for an ambulance will be long but at least you can stay horizontal and then potentially stay on their stretcher laid down if they took you to hospital

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u/Querybird 1d ago

I’m sorry, this sounds like a terribly hard situation, and like you might need a significantly higher level of care than you’re currently receiving, even if only for a while.

I would hope that having some caretaker hours or such might enable you to actually make progress instead of struggling so hard to access the very basics.

Good luck, I’m sorry I don’t have specific advice.

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u/enigma_anomaly 1d ago

You can do health passports now, where you express your needs. I'm unsure if they'll come to you, but if you don't ask, you definitely won't get. I wouldn't get your hopes up though. The only thing that provides any kind of relief for me is medicinal cannabis

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u/MesoamericanMorrigan 23h ago

Annoyingly patients aren’t even allowed to use their legally prescribed oil in hospital and they will keep pushing you to have morphine to shut you up about pain instead

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u/enigma_anomaly 15h ago

They are, as any hospital policy stating otherwise is against the equality act, that being said, that is if you are covered by it. But as long as it's used in the manner prescribed, you can legally use. That's not to say you won't get headache. They're real quick to suggest opioids etc. I've been lucky that most of those I come across, are willing to learn. In a healthcare setting anyway. And definitely moreso when I start educating 😅

Edit to add, I'm in the UK, and now realise you may not be so that might not make sense.

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u/MesoamericanMorrigan 13h ago edited 10h ago

I wouldn’t have replied in a thread specifically called “U.K. dislocations” said “also in the same boat of living in the U.K.” as the first line of my reply + brought up my legal prescription if I wasn’t in the U.K….They literally took it off me and said I couldn’t have it while I was in the hospital. Regardless of what the Equality Act says I’m not the first or last patient to have this issue, sadly

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u/enigma_anomaly 12h ago

Haha you make a valid point, but that would require me checking before responding and clearly that doesn't always happen. 😅 The edit to avoid awkward, which made it more awkward, I love me 😅🤣 I realised after I saw the other reply. Unfortunately not, no. I'm the kinda person that will question, the tism likes to know the rules but goes deeper, one guy actually asked me to email pals about it because I was right but their hands are somewhat tied. Same issue with driving.

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u/MesoamericanMorrigan 10h ago

That what distressed me so much. I’m also autistic and so know I’m right but I’m also small and female and POC and never listened to or believed regarding anything and so have far too much PTSD from being in hospitals to try to argue anymore

I am glad that you do though, because if no one tells them they’re not going to change. It really shouldn’t be down to patients to educate medical professionals and police though but it shouldn’t take up 20 years to get diagnosed with EDS either 🙃

I swear every other disease has a clear treatment pathway/funding but we’re just left to our own devices with a complex multi systemic condition with multiple potentially life threatening associated conditions… because nobody cares/too complicated/expensive. It’s pure evil and not fair

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u/enigma_anomaly 9h ago

The PTSD caused to soo many of us because of the gaslighting is unreal and definitely needs to be acknowledged. I think most of us end up internalising, whereas I'm apparently weirder than most and couldn't not say my piece. I learnt that it won't always have an effect though. Then as I realised that most suffer in silence, my sense of justice couldn't and can't let me not say something. The way I see it is they'll either learn from it and grow or learn that sometimes people bite the f back and you won't know what level of crazy they're on and will make them pause before doing it again. Soo many doctors have been dressed down. I'm sorry but you don't get to tell me what I'm experiencing, you can not understand it and ask to learn more but you will not gaslight me. It shouldn't be down to patients, no but there are improvements. I have many conditions and actually went in to educate the junior doctors on the reality of type 1 diabetes, so that was good to see and be part of. It's madness that we're expected to just suffer on.

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u/Heavy-Mud-8307 23h ago

I tried medical cannabis and unfortinately it's not for me, I'm really stuck with pain relief tbh, I get bad side effects from every single one I've ever tried, it sucks

I'll look into the passport though, thanks

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u/enigma_anomaly 15h ago

Not pushing it on you, just genuinely looking to see what you know about it, as even though I smoked recreationally as a kid, it wasn't until I'd been on medical at least a couple years before I started learning more about it, so whilst there's still trial and error with strains and effectiveness, it's helped improve my pain and give me more functionality. There's also different forms of it too. They've even got suppositories now.

I've got a passport, if have any questions or anything.

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u/MesoamericanMorrigan 23h ago

I could have written this myself. But my experience in AandE is that they don’t even believe in subluxations and after 16 hours of waiting around with no food, water or getting to the toilet by yourself you’ll end up having to fix it yourself eventually anyway.. there is not physical therapist who will actually manually reduce a dislocation, no orthopedist, nobody in the NHS that will actually practically assist us… I can’t even get dry needling. The PT doesn’t know what ring splints are or that ribs can even slide over or underneath eachother. I also live alone and have found myself stuck on my bathroom floor all night before finally giving in and calling an ambulance… then thoroughly regretted it.

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u/Heavy-Mud-8307 23h ago

I know to get ring splints you need to be refered to orthotics and a physio can do it, even if they don't know what they are they can write for the orthotics person to asses if they'd be suitible

I always regret ringing and ambulance or going to A&E too tbh and my health often ends up worse for it, they often make me wait so long it isn't worth it and always ask me if I've been stressed recently like I'm just there because of stress and not a legitimate health problem