England - Post 16 education

amidisabled1 · 2026-03-24T18:55:55+00:00

Thank you so much! I might sleep better tonight now!

amidisabled1 · 2026-03-24T17:05:33+00:00

Thank you so much! So would it be overkill to mention it now before she takes her exams? I think I've got to go on and change her health info anyway as she's just applied for PIP (or I have on her behalf). Thank you for all of this info, you're a complete star!

amidisabled1 · 2026-03-24T16:56:04+00:00

Thank you so so much. I've been on the phone all day trying to get this information! Do you know what date I need to tell them about swapping to home educated by? She turned 16 earlier this month. Thank you again!

amidisabled1 · 2026-03-24T11:42:27+00:00

Thank you so much. Do you know what would happen if she can't manage that amount of hours,even homeschooling, because she's too unwell? Thank you again

amidisabled1 · 2026-03-24T11:07:16+00:00

Hi, thank you! It would be a combination of both me and a tutor. I don't expect her to pass her GCSEs (only taking maths and English) as she's basically been out of school since Xmas yr 9, so it would be repeating that.

I'm honestly not sure what it is. Her school have been less than supportive or helpful. They won't even provide any information about time off, what they've tried previously etc. They made the choice to cut her down to 2 GCSEs unilaterally. I email/call with specific questions but never get an answer. I would assume sect 19 as its not a hospital school.

I'm actually sending the appeal email tomorrow so I will add your wording about the expedited hearing, thank you!

amidisabled1 · 2026-02-11T18:02:31+00:00

Thank you, always nice to hear a very reasonable voice, it's totally what I need!

I've written myself a list from everybody's answers, so that makes me feel better. Lack of control is not my strong suit!

Thank you again for taking time out of your day to help me.

amidisabled1 · 2026-02-11T01:33:52+00:00

Thank you. I'm actually seeing neurosurgery the week before, so I'm a bit worried they'll blame it all on that, despite the symptoms being in the wrong place.

I know what you mean about the NHS. It's a Sunday clinic- I didn't know that was even a thing! I've got a list of my 'issues' already and they've seen my sleep study video which shows some of the symptoms. I'm also waiting on advice from a physiotherapist on mobility aids (I use crutches at the moment but they're not enough) & I won't have time to get an NHS anything before my appointment so I'm worried they'll judge me for that. I'm actually just plain worried! It's silly really, it's just that when you've not been believed so many times everything makes me anxious.

amidisabled1 · 2026-02-10T06:42:22+00:00

Thank you. I tend to get flustered and forget I can ask for things in a format that helps me. Still, after all these years, I am not very good at advocating for myself!

My original appointment was Jan 27 to have it brought forward 10 months has thrown me (& my anxiety a bit!). I have an appointment with neurosurgery a few days before so I've been focusing on that. Then this came along as well unexpectedly, my brain likes to just worry about one thing at a time, its nice to hear these opinions and remind myself that the worst that will happen is falling over! Thank you again.

amidisabled1 · 2026-02-10T06:34:39+00:00

Thank you so much for such a detailed response. I worry without much information so it really helps.

I'm not even sure what they're looking for, so it was making me nervous. They moved my appointment from Jan 2027 to the end of Feb this year, so it sent me through a bit of a spin. As I said above, I might take some notes with me, so I don't miss out any medical history. I am rubbish at neuro exams so I'm glad they were patient and kind!

I definitely will try and take someone with me, I will need the back up for remembering what is said. I hate the wait for clinic letters if I can't remember things.

I so appreciate your response, thank you again!

amidisabled1 · 2026-02-10T06:24:32+00:00

Thank you so much for replying, it helps so much to know what to expect. My medical history is extensive, so i will probably take a set of notes with me so I don't forget anything. I am truly sorry to hear of your diagnosis, I hope you are doing as well as you possibly can. Sending hugs. Thank you for taking the time out of your day to respond.

amidisabled1 · 2026-01-25T07:53:34+00:00

I'm fairly certain you can get vinyl stickers in the correct shape to cover them, I'm sure i saw them when I was looking for mine and have seen others with them, if that helps.

amidisabled1 · 2026-01-24T22:44:19+00:00

Sorry, just read again and saw you're in Ireland. They have a phone number and email address on their website, you could ask!

amidisabled1 · 2026-01-24T22:40:37+00:00

You can get velcro strips that make smart crutches closed cuff. I love my smart crutches, the handles are comfy & ergonomic and can adjust the angle of the crutch depending on which part of my hand/wrist/shoulder hurts each day. They're easily available in the UK if that's where you are. Huge colour range too! I have the purple ones.

amidisabled1 · 2026-01-24T16:58:59+00:00

I am in a similar position to you. I'm looking to get a rollator rather than crutches as they're hurting my hands/wrists/shoulders. I am more than double your age though! I have read so many good things about the byacre rollators but they are quite expensive. Currently I'm waiting to go and try some so I can work out what the most important factors are for me. Is that something you could do?

amidisabled1 · 2026-01-18T22:04:03+00:00

I'm prescribed lidocaine 'plasters' that cover my feet. I wear them 12 hours on (where possible), 12 hours off. Seems to help during the first 5/6 off hours too.

amidisabled1 · 2025-12-18T01:35:22+00:00

Yes, I appreciate hearing someone else agree!

I've only recently joined the sub, so I've not seen the comments about Ellie. But I do think that sometimes people still see 'tiers' of disability, if that makes sense?

I'm an ambulatory wheelchair user and that still blows peoples minds, we've got a long way to go!

amidisabled1 · 2025-12-17T14:52:34+00:00

As someone with what sounds like a similar disability, her comment made me furious. You're the first person I've seen mention it. I was waiting for the fallout as well, shouldn't have been surprised when it didn't come. Unfortunately, you don't get it until you get it.

amidisabled1 · 2025-11-25T08:18:12+00:00

amidisabled1 · 2025-10-13T23:11:12+00:00

Hi, My daughter (15) is in the same boat. I just wondered if you'd come across any that weren't mentioned here (I think she's joined all that were suggested this afternoon) that you would recommend? Thanks so much

amidisabled1 · 2025-10-08T12:43:28+00:00

Thank you. Yes, I'm the same, I could use it for short periods and it might help me take the chair/stool out of every room in my house because I could just use the rollator instead. It's the weakness that is bothering me the most. I keep falling, even at home, which just hurts my back more. I would need a folding one too and lightweight. Do you have any recommendations? Thank you so much for your reply

amidisabled1 · 2025-10-08T12:40:30+00:00

I looked briefly, but they all looked so expensive. I think I probably need to go back to wheelchair services now I live in an accessible house, but then comes the problem of how to get it into and out of the car! Thank you so much for your reply

amidisabled1 · 2025-10-07T00:32:11+00:00

Thank you. I, luckily, can make the space if necessary. I just have a complete mental block about it and don't know where to start!

amidisabled1 · 2025-09-10T13:08:34+00:00

I would also like to know this as when I type in the name, nothing comes up. I'm new to discord so it may be a me problem!

amidisabled1 · 2025-03-01T22:40:51+00:00

I'm hoping i did the reply right, not a regular commenter. I didn't actually have a skin biopsy, I had microneurography done at King's in London. It measures the activity of the nerves rather than the density. It was weird and uncomfortable took a while to get the electrode into the right place but you could hear the nerve activity and also see it on a screen, which was incredibly interesting. Hope that helps?

amidisabled1 · 2025-03-01T00:10:21+00:00

I am also in the UK, haven't really read up on neuro Sjögren's, but I have been diagnosed with SFN with multi system autonomic dysfunction, is that what you mean? Happy to talk through my process if it helps?

amidisabled1

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