Extra time in exams

Hi everyone, could you please help? I have been suffering with horrendous pain for 4 years. I have endometriosis, PoTS and Fibromyalgia. I am nauseous a lot, I have 2-3 migraines per week and I am exhausted all of the time. I got through the GCSEs and did better than expected. I had A&E trips in ambulances during exams. I am not getting better - in fact, I'm getting worse. I am waiting to see pain specialists at Great Ormond Street Hospital and in Kent. Consultants have written to school to say that I should have rest breaks and extra time in A Level exams. I have just started rest breaks, but school has said that I "don't need extra time," and that I should just use, "heat or ice packs for my hands." Bear in mind that I have excruciating pain in my pelvis, abdomen and chest, bad pain in my legs and spine, TMJ etc. If I had a choice, I would be in bed 24 hours per day, but as it is, I am going to school 2 or 3 hours per day...and then I go back to bed. Please give me your opinions. Thank you 💖💓

Reply 1

SomeonesDad

The school shouldn't be trying to over-rule the medical advice.
Firstly, congratulation on getting the Endo diagnosis so early in life. Many schools/adults won't be aware of how much this affects your day to day life as many sufferers don't get diagnosed until they're much older.
Talk firstly to your form/personal tutor. Explain that it is a fully medically diagnosed condition and ask for them to find out what else the institution needs for you to get the support you need.

My daughter wore/still wears a TENS machine on some days and (I could ask her) but pretty sure she had extra time while at Uni.

(edited 7 months ago)

Reply 2

Anonymous #1

Hi, thank you for your kind reply. It took several years to get a diagnosis. I am on the waiting list to have endometriosis excised. It is very scary as I have so much pain constantly, and surgery might make the pain permanently worse. We have told the SEN everything about the pain (it affects my bowel and bladder), but they have overruled the Advanced Nurse Specialist and Psychologist. Apparently, my good grades indicate that I don't need extra help. But I didn't finish gcse papers and I put my pen down for 30 minutes in 3 exams as the pain was unbearable. I have a TENS device and take several pain relieving medications, but they don't help much 😥💓

Reply 3

SomeonesDad

See if you can get a phone chat with someone at GOSH and ask if they would be willing to speak to the school?

Reply 4

SomeonesDad

And your grades aren't really the issue. The extra time is to enable you to take time out and pause to deal with the pain if required without having to be drugged to the max. ie to be on the same playing field as your classmates.

Reply 5

Anonymous #1

Original post by SomeonesDad

Thank you. I appreciate your comments. I don't know why, but the school seems to help students with mild conditions. I never manage to finish papers as I'm so exhausted. They said that a heat or ice pack would help with hand pain, but I have pain everywhere (they know this). Hospital won't prescribe Morphine but, as you say, I shouldn't really have to be dosed up constantly 🤔. We have been in touch with exam boards and JCQ plus local education authority - they all say speak to the SEN dept. And then the SEN dept. says I don't need it. Thank you for helping me 🙂