GCSE exams and Endometriosis

[BlueMum16]

My DD spent most of year 10 in severe pain, A&E and various tests. They think she has Endometriosis and the only way to confirm is keyhole surgery which she can't have until July due to GCSEs.

Dd struggles everyday with pain using heat pads and tens machines. Painkillers dont help. She has only missed a couple of days since September but attends when she's unwell as she doesn't want to fall further behind.

DD is worried about her exams. Her mocks in December were awful due to being in pain and struggling to concentrate.

School are not being helpful around what options are open to her about the exams especially if she's unwell on the day.

She already has extra time due to dyslexia and school are saying there is nothing more to do and maybe submit a doctor's note after the exams.

Is this right? She here first hospital stay was February 2024 so has been over 12 months now. There is no cure so expected to get long term impact. I'm assuming she would be protected under the Equality Act but does that give her anything to help with exams?

Sorry for long post/waffle. I'm just at a loss.

Would she be classed as having a disability? I am not sure that she would – in which case the Equality Act is not really relevant. If she were disabled, and for example was unable to climb stairs, then it would be discriminatory (to take an extreme example) for the school to insist her exams were taken in an upstairs room with no lift.

But I am not sure how the situation as it stands is discriminating against her.

I am sorry she is struggling so much. Reasonable adjustments might be that she can have rest breaks (for example a break from writing to access some type of pain relief) or that she can be in a separate room. I would explore with the school anything like that which you think might help. And encourage her to make use of her extra time as well.

And yes you can request special consideration if, for example, she is in such pain for a specific exam that she is unable to focus and do as well as she might have. Medical evidence would be useful here but unfortunately the % uplift on offer is very low.

Is there any medication at all that she could be prescribed, perhaps just to help on the day of an exam rather than something she would take regularly? Is it worth exploring that with your GP?

This was me at that age. I went on the pill and would take it without a break (if needed) as advised by my consultant. Perhaps advice is different now but it was great for me.

It is worth asking the school about rest breaks/having her own room and special consideration. They should be able to consider all of this.

If she is unwell on the day of the exam you can apply for special consideration and she may get an extra 2-3%. (Ignore the highlight, I didn't do that!)

As pp said, it’s special consideration. Unlikely to be eligible for rest breaks as they won’t help the issue.

Ffs, disability isn't just about being unable to walk. Of course it meets the threshold to be classed as a disability if it's as described.
People give some terrible advice on here sometimes.

Can she not go on the pill and take it continually? That's what my DD has done since she was 15 for the same reason.

She should be able to have rest breaks so that if she needs to change position to ease pain, or if she needs the loo, the clock is stopped and restarted when she starts again. Normally they grant one rest block of up to 10 mins for every hour of the exam. This time is then added on at the end. Normally they wouldn't do extra time and rest breaks for the same student in the same exam. However (as a TA in GCSE English in a college), I did mange to get this for a dyslexic student going through cancer treatment at the time of her exams as the dyslexia and the cancer were completely independent, unrelated conditions. Occasionally they will do 50% extra time, instead of 25% although this does make for a very long exam.

They will also, as others have said, make special considerations if she is unwell on the day, including giving a higher weighting to tutor assessed work. She would be classed as having a disability, but for exams a simple disability/not disability isn't really relevant, it's more about what parts of her condition(s) affect her in what specific ways in relation to the exam situation. You need to get on this ASAP as the deadline for confirming access arrangements is in the next couple of weeks I believe. After that they would probably refuse to adjust for a pre-existing condition.

Well that's why I said "to take an example" – I wasn’t saying that using a wheelchair was the only way someone would be classed as disabled. Apologies to anyone who thought I was.

I also asked if she would be classed as having a disability. That’s because I don’t know – I am not an expert in the criteria used. That's useful that you know and can confirm that she would be classed as disabled.

I think the rest of my advice is valid tbh and it has been backed up by other posters.

My daughter is in a similar position although not as severe. Arrangement being looked at are for her to be at the back of the hall and allowing her to go out for a rest break when needed, with the extra time applied. Also being allowed to use a heat pack. She has just started taking the pill so the best plan as far as I can see would be for her to take it continuously over the exam period. What a nightmare for them! Best wishes to your daughter.

I would approach the school with the adaptations you think would be helpful, they can provide things like rest-breaks or a private room. You should also keep any medical evidence in case you need to apply for special considerations- this can only be done on the day of the actual exam and (as an above poster has said) only represents around 2-3%.

DD developed severe chronic back pain around the time of her A levels - we made sure that the school and the exam board had access to plenty of documentation from her spinal consultant etc to back this up. She was allowed to sit her exams in a private room with the ability to move around, take rest breaks and use a standing desk if she felt it would be more comfortable.

Thanks everyone.

DD was put on the Pill in October with the advice to take 3 packs continuously. The break/bleed at Christmas was unbearable. Worst pain ever. She has had two ultrasounds since and no new ovarian cysts which is great but this means it's likely to be Endometriosis but she needs surgery to confirm. Obviously she can't have the surgery before her exams..

We're not sure if 3 Pill packs was too long so she is about to stop this time after 2 packs. Trying to time the break for half term in case she's unwell again The gynaecologist has recommended having no breaks if this.doesnt help as she may just need the maximum hormones. She's also recommended having a coil fitted but DD is completely against this right now plus it's done under a general anesthetic so more time off school which she doesn't want.

DD takes paracetamol and ibuprofen on a daily basis. They don't help at all. We have codeine for really bad days rather than going back to A&E but can only use for 3 days max.
She uses heat pads and Tens machine.

Due to her dyslexia she is already in another room and has extra time. The school are reluctant to let her leave the room for medication and asked her can't she wait during mocks. The medication is held by a first aider on the ground floor. The exam is on the second floor. When someone is in immense pain they don't have the energy to walk 4 flights of stairs down and up again and hang.around trying to get meds. The dyslexia breaks are prompts of 1 minute to give her brain chance to refocus rather than an actual break. She gets 25% exte time.. She can't a concentrate in pain and the words on the page blur. Ideally she would need access to meds/drink in the room and 10-15 mins for these to kick in or space /privacy to apply heat pad/Tens machine. The school don't see the need.

I'm not sure if I'm asking too much?

No @BlueMum16 I don't think you are asking too much.

The meds being on the same floor (or better, in the same room) as your DD seems the epitome of a reasonable adjustment to me.

No you're not asking for too much at all. Contact the exams officer and just lay out what you need and why it will help her access the exam, this sounds like a very reasonable adjustment and one that is easy to organise (from a school perspective)