Would you go to A&E

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Would you go to a&e if you kept getting electric shock type sensations in your head and face, along with chronic headaches, dizziness, numbness and tingling in arms, legs and feet, muscle twitching/spasms, muddled speech, burning sensations in legs and stabbing pains in legs? Been happening for a couple of months, been to drs, been referred to neurology. Appointment got cancelled and hasn't been rearranged. Do I go, or do I wait?

If you’re in pain / it’s unbearable / you’re scared then yes I probably would. They’re only going to treat what is immediately a problem, I’d have thought. If you don’t think things have got worse and there is nothing to treat right now then they may very well just refer you to the same neurologist.

If it’s been going on for a few months and you’ve already had a referral then no, call the secretary of the consultant you were referred to, or go to your GP to chase the appointment.

What do you think A&E will do?

Not a and e, call the consultants secretary for an Appointment or go back to your gp. I'd ask for a rheum ref with those symptoms

I've called twice and asked to rebook the appointment and each time all they've said is that they can't. I don't know what a&e would do, speed it up? Help me manage the pain? Help figure out what's happening to me maybe? Because it's horrendous, every time I move my head I feel like I'm being electrocuted, but I can call again.

I've also been having weekly gp appointments and they can't do anything more for me, they can't chase it up as the referral has gone though, it's down to the neurologist now, believe me, I've asked 😩

Do you tend to keep going regardless? Because while I get what earlier posters are saying, the reasoning may not be applicable. It strikes me that many would have headed to A&E with those symptoms, muddled speech etc, as soon as first experienced.

I would chase the referral OP. Ring the consultants secretary. Have you ever considered migraines? I know someone with similar sounding symptoms & that is what it was. I hope you access treatment.

@Zorua I do just push through, I've got 2 dc, one has additional needs and dh works daytime, I have no choice but to keep going, it's just got to the point now where it's too much, and I'm kicking my self for not going before as a few weeks back I lost vision in my eyes.

@Amber0685 migraines have been ruled out as far as I am aware, I'be been given different migraine meds and they make no difference. I'm unsure if migraines would give me the muscle spasms and stabbing, burning pains in my legs?

I wouldn't go to A and E for something chronic that has already been referred appropriately. If there is no luck with the secretaries and they are just saying it's been cancelled and can't be rearranged, I would speak to PALs/ patient experience or complaints team and see if they can do anything.

How long have you waited? Might be worth asking PALs for help.

I would go to a&e based on what you have said. I disagree that a&e can't do anything. Ultimately you will need a neurologist appointment but there are some tests they can do at a&e and they can try speed up the appointment if they think necessary.

And even if they don't do anything you are not wasting their time. That sounds miserable.

Would you be able to pay for a consultant appointment? I know you really shouldn’t have to, but it sounds like you’re going through a terrible time.

Agree re: PALS. Would be speaking to PALS at both the trust and your CCG.

@Happymum12345 unfortunately not in the position at the moment to be able to pay privately.

Thanks everyone, I guess il be making some calls tomorrow

It sounds miserable for you, and I can see why you would be worried. Has it suddenly changed/worsened? If not, then I don't think A+E is appropriate as difficult as it is, it won't be seen as an emergency.

You could go back to your GP if you think the symptoms are worsening/developing over time, and ask them to to send a letter asking if you could be prioritised, if they feel you meet more urgent criteria? I agree that PALS is good to also pursue. You could also enquire with the neurology secretary perhaps about any availability of short notice cancellations, that you would like considered.

This sounds like B12 deficiency, do you know if yours has been tested? And if so, do you know your result? It's missed all the time by doctors, including neurologists unfortunately

I think I'd write a formal letter to the neuroligy department copied to my GP, the hospital CEO and copied to my MP.

Dear Sirs

I presently have the following symptoms: x, y, z. I was sent a neuroligy appointment on x. Regrettably it was cancelled and despite seeing my GP weekly since x I am advised there is nothing further they can do.

In the meantime I am in pain, debilitated and have children to care for. I am also wasting an appointment with my GP weekly which may be more constructive for somebody else to have as in the absence of a neuroligy appointment it does nothing to help me.

I shall be grateful if you will please tell me when I might see a consultant neurologist and why this has not happened so far.

Should a lack of diagnosis and treatment render my condition more serious than might have been the case had an earlier intervention been facilitated I shall be grateful if you will please confirm that the NHS will ensure all future treatment and care is provided to an optimal standard

I look forward to hearing from you.

Yours faithfully
OP

And send it and all copies registered so you have an audit trail.

Good luck op. It's an utter disgrace.

Absolutely no consolation I know, but there's a national shortage of neurologists, hence the long waits. In shortage specialties, you tend to find that large teaching hospitals have the fewest vacancies. Might it be worth going back to your GP and asking them to find out how long the wait is at other trusts? I don't think it's going to be great anywhere, but you may find a trust with a shorter wait. Best of luck.

I do have a full blood test coming up this week. Including b12, iron, vit D and thyroid check.

I do have coeliac disease so they do get checked regularly anyway but as far as I am aware they've all been fine recently.

It's getting worse over time, I'm just so frustrated and fed up, I genuinely could just sit here and sob. My body is failing me and I'm not getting any help, I don't know what to do and most evenings when dh gets home I just go to bed because I feel horrendous. But enough of the pity party. Il make some calls to neurology, and the drs this week and see if we can get it sorted out

I was thinking B12 deficiency as well. Could you ask your GP if they think the symptoms fit?

A&E maybe appropriate depening on the severity of your symptoms. They might carry out scans or tests to start the bllrollimg with neurology.

Theres no need to go in with a twatty letter like ohtheroses (especially not starting with dear sirs). Itll get everyones backs up. You have no idea what the referral said to the department, what information theyve got etc. And they will have a waiting list full of patients in pain. By all means speak to PALs if youve tried other avenues but theres no need to go in with that sort of approach

Its bs your GP cant chase up the referral, they can quite easily call or write to the consultants secretarys explaining the situation and asking to expediate the referral. It is often better having an official letter from the GP than a patiet calling up

Random question - are you on sertraline or any other SSRI?

@FenellaMaxwell only duloxetine, and cocodamol to try and help with nerve pain & headaches, but they don't

It's not an accident or an emergency so no, not appropriate to go to the hospital.

I'm sorry you're struggling though, I'm a regular neurology patient and havent had an appt since pre-Covid as they are prioritising other forms of care - do you think this could be the reason?

Could you call the consultant's secretary and explain the situation? I find them a really useful route usually.

The only other option if it is severely impacting your day to day life would be to raise with PALs I guess?

Good luck

Ok that’s interesting. How long have you been on the Duloxetine and do you ever miss doses?

And were you taking the duloxetine before all this started?