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Extra time A levels - MS

7 replies

mondaytosunday · 08/03/2023 11:56

My daughter is in the process of getting a diagnosis for Multiple Sclerosis. There is no definitive test but the neurologist have said it is the most likely diagnosis. This has all happened in the last week.
She sits her A levels in two months, art, history and psychology. She is predicted A, B and A star and really wants to meet or improve on those.
While having MS would explain a number of issues she's had in the last few years, her current symptoms are numbness in her right arm and leg, making stairs difficult and slowing her writing considerably. The hospital's occupational therapist said she should apply for extra time for her exams and the school says it needs 'any documentation' I can provide. I have none other than discharge papers. I understand that normally there is a demonstrated historical need and the student would most likely have needed extra time for GCSEs and other exams and that it is very late to apply now, though this could be considered extraordinary circumstances.
However it is also quite likely that her current issues will be resolved by the time the exams take place, and also a possibility that she may have different issues at exam time. Does anyone have any experience of this? Will she have to have an assessment nearer the time to see if she actually needs extra time? And if she feels ok, does it just revert to normal length? We have a GP appointment today but one worry is they have said things grind slowly on the NHS and it takes time for the paperwork to get from the hospital to the GPs. She has been referred to the local occupational therapist as she is no longer an inpatient, but even that referral may take a week or longer (and then who knows how long to get an appointment) and time is of the essence, plus as stated her current symptoms may be resolved yet she may have new ones. On top of it all is the psychological stress of coming to terms with having this degenerative neurological disease. Any experience welcome.

OP posts:
Btjdkfnn · 08/03/2023 12:01

I don’t have experience with MS but my ds has extra time for a disability. Your school should have an exam officer or Senco type person who can phone up the JCQ (body awarding extra time for all exam boards) and this can be sorted with them in a short time (eg two weeks turnaround). It needs documentation and a form filling in - but if the exam person calls up the JCQ and says what sort of stuff you have available, they should be able to help with the application. Good luck with it.

mondaytosunday · 08/03/2023 12:20

Thank you I believe they have already done this hence the request for any documentation (which I have yet to get). I just know how long it takes for disparate parts of the NHS to communicate with each other!

OP posts:
WhatHaveIFound · 08/03/2023 12:25

DS gets extra time and it was put in place quite quickly. His OT wrote to the school exams officer outlining his health problems (Long Covid/CF/PoTS).

We're dreading his upcoming A levels though. He can cope with lessons and gets good results in class tests but even the thought of a 2.5 hr hour exam exhausts him.

jgw1 · 08/03/2023 12:29

mondaytosunday · 08/03/2023 11:56

My daughter is in the process of getting a diagnosis for Multiple Sclerosis. There is no definitive test but the neurologist have said it is the most likely diagnosis. This has all happened in the last week.
She sits her A levels in two months, art, history and psychology. She is predicted A, B and A star and really wants to meet or improve on those.
While having MS would explain a number of issues she's had in the last few years, her current symptoms are numbness in her right arm and leg, making stairs difficult and slowing her writing considerably. The hospital's occupational therapist said she should apply for extra time for her exams and the school says it needs 'any documentation' I can provide. I have none other than discharge papers. I understand that normally there is a demonstrated historical need and the student would most likely have needed extra time for GCSEs and other exams and that it is very late to apply now, though this could be considered extraordinary circumstances.
However it is also quite likely that her current issues will be resolved by the time the exams take place, and also a possibility that she may have different issues at exam time. Does anyone have any experience of this? Will she have to have an assessment nearer the time to see if she actually needs extra time? And if she feels ok, does it just revert to normal length? We have a GP appointment today but one worry is they have said things grind slowly on the NHS and it takes time for the paperwork to get from the hospital to the GPs. She has been referred to the local occupational therapist as she is no longer an inpatient, but even that referral may take a week or longer (and then who knows how long to get an appointment) and time is of the essence, plus as stated her current symptoms may be resolved yet she may have new ones. On top of it all is the psychological stress of coming to terms with having this degenerative neurological disease. Any experience welcome.

You need to speak to the school's exams officer and ask what they need to provide evidence for the extra time - probably that evidence would include a statement from a medical professional with the diagnosis on.

As well as extra time, would rest breaks also be of use? Rest breaks and extra time need to be used wisely by the student, is there someone at the school who could offer advice once the arrangements have been made?

mondaytosunday · 08/03/2023 12:59

One of the issues is she may have no symptoms at all. Or new ones (and one can't predict what those might be). It's remitting/relapsing MS. So what her limitations are today may not be her limitations in two months time.

OP posts:
Phineyj · 08/03/2023 13:01

I think you've missed the deadline for extra time. Rest breaks may be possible though and I think a doctor's letter will suffice. The advantage of rest breaks is she can use them if she needs, not if she doesn't. Ask the SENCO.

mondaytosunday · 08/03/2023 20:53

Thanks @Phineyj the school said it was late. But these are exceptional circumstances and it's people that decide these things, I can't believe that they wouldn't accommodate something like this.
My daughter is less concerned about it than I am, and I do hope it will not be needed.

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