secondary school - not much help

[amyt250190]

My DD1 (16) is doing her GCSE's in a matter of months (May/June this year) and is struggling a lot. She Was originally diagnosed with Hpermobility/EDS in 2016 with the old criteria but since new criteria in 2017 her diagnosis was essentially invalid so she basically has no diagnosis. She is on a waiting list to see a genecisit and has been on one since October, still not even have appointment but pediatrician agree likely diagnosis of EDS still. She has physio since October but she still says her pain doing every day things is not improved really. She has exam access arrangements for her GCSE's but she only has them due to dyslexia and anxiety. The school does not seem to aknowledge her joint problems and other issues. She even had to take time off of school after going on a day trip, they failed to aknowledge that its not possible for her to stand for a long time or walk for more than 10 minutes without a break and that she will be in massive amount of pain but she had to stand on public transport whilst other students sat down claiming "anemia" and teachers were apparently laughing as DD was on the verge of tears in pain. She came home barely able to walk and was in a lot of pain for days. She is also exhausted from going to school, she sleeps minimum 8 hours, no vitamin or mineral deficiences its purely due to her condition she is so tired she dosen't even go out with her friends a lot anymore. What kind of provisions should I ask the school for because she has GCSE's in under 3 months but she is unable to revise properly for exams because she is so tired. Please any suggestions im really at my wits end with this

The school does not seem to aknowledge her joint problems and other issues

Daft question but have school been told? Did you send her EDS dx to SENCO in 2016 and ask for adjustments for her for PE and other activities? Did it list things she struggles with and the recuperation time necessary after any different movements? Do school understand how it impacts her daily living? IME schools "Don't see" so many things that affect our kids, even when they've had the medical reports.

Initially I'd ask for a meeting with SENCO, explain your DD's physical difficulties and see what options are available. I'd push for home-study whenever possible, if that's allowable.

My DD sounds very similar in presentation. Her fatigue levels and pain for days after doing things everyone else did without pain (e.g. putting on a seatbelt in a different car so using different muscle movements) hampered her so much more at school than her ASD and co-morbids.

no vitamin or mineral deficiences We were told that too as results of blood tests. One thing that helped my DD's fatigue and all-round "disposition" was/is still taking Aldi's A-Z Multivitamin and Mineral supplement, it's one tablet per day. After the first month there was no change, but after 6 weeks she was noticeably brighter and said she 'felt more like herself than she had done in a long time' Don't get me wrong, it hasn't stopped the fatigue or brain fog in their tracks but it has made a real difference to her. For once it's something that doesn't break the bank to try it!

She also takes a 'Better You' oral VitaminD 3000iu spray daily.

Other things to consider after you've sorted school for her exams - Have you applied for a Blue Badge for her? Have you applied for PIP for her? Would an EHCP help her in the future, they last until age 25.

For PIP, up to date medical evidence is good to have, but the 2016 diagnostic report should outline her difficulties, so that's something.
You can ask for her to be considered for a Blue Badge, maybe your local Council can do an assessment for her, they all have different rules so it's worth asking. Ours assessed my DD when her old badge had expired and her PIP was waiting for Tribunal decision. They renewed it and their report was also useful to submit as more evidence for the PIP mobility component.

Her old diagnosis was said to be invalid because we can't say she officially has EDS as she was diagnosed against the old criteria and not the new, so technically it no longer counts. She dosen't do PE after physio wrote a letter saying no running or jumping at all. Physio said it was up to her if she did it or not but if she dosen't want to they can't force her to do anything or tell her off for it. I don't think she would qualify for any PIP or blue badge as the rules seem quite strict that you have to be pretty severly affected in lots of different ways. Of the ones listed she can cope going out but is in a lot of pain and comes home and goes to bed even after a small trip to the sainsburys and starbucks 30 minutes away. She dosen't use any mobility aids so its definitely not a visible issue (she cant use crutches or anything as its pressure on her wrists and shoulders which already hurt) she refuses anything else whatever i say because she suffers from quite bad social anxiety and ocd so she is constantly worrying about everything especially what people think of her and because she is young she gets a lot of funny looks when she sits down on the bus and things which upsets her quite a bit as well.

This would clearly be classed as a disability under the Equality Act 2010 and under the law schools have a legal duty to make reasonable adjustments for disabled pupils. E Year 11 students already get study leave for GCSEs. A reasonable adjustment would be to either extend her study leave or agree a part time timetable so she doesn't get so tired.

I agree you need to go to the SENCO and spell out how much the school day is impacting on her ability to learn and revise.

And they definitely need to put some reasonable adjustments in place for any more school trips.

www.equalityhumanrights.com/sites/default/files/reasonable_adjustments_for_disabled_pupils_1.pdf

I realise your priority is getting her through her GCSEs and school recognising her needs for rest. It's so difficult getting an appointment with a Consultant who could document her difficulties to the school, is she currently under a Consultant? If so, could you ring their secretary and ask for an urgent appt, failing that, could your GP ask for an urgent appt with them to see what help they can give?

Have you seen SENCO yet, explained your DD's condition and asked about home study and how school can accommodate your DD's fatigue?

After you've sorted GCSE's, I'm positive she'd qualify for a Blue Badge and PIP, her symptoms are so much like my DD's and you have a lot of supporting medical evidence.

Please consider it, PIP is not means tested and it's designed to help people be as independent as they can. Your daughter could use it for therapies or aids or anything else to make her life a bit easier.

Do definitely get help to fill the forms in, CAB or Benefits and Work are excellent and do go all the way to Tribunal if necessary because some assessors are good and "get" invisible disabilities and others don't. Expect to be refused at Face to Face and Mandatory reconsideration, we were, but the Tribunal judge said on the evidence I'd provided it was obvious DD should have been awarded the Enhanced rate of both components on our initial application and did so.
It's a very long slog of a process and really demoralising e.g. DWP send letters to be answered within a month of the date they were written but they don't arrive at yours until halfway through that "month" BUT it's not insurmountable, you need to persevere. I did all the paperwork for my DD.

DD has debilitating fatigue, it can be variable but even on her best days she has never been able to do anything like as much physically as her peers. Worst days are pyjama days, wakes up shattered, the whole day is spent in bed, bathroom, or on the sofa. She's had it all her life but at the time of the PIP Tribunal the fatigue didn't have a named diagnosis, but was documented in some diagnostic correspondence similar to your DD's letter from the physio and in descriptions of the things in daily living and mobility that she struggles with.

She is only under a paediatrician (cant get an appointment with them as apparently you can only have one every 6 to 8 months and they are fully booked for months), she is waiting to see a geneticist as they are the only ones who can officially diagnose it even though a rheumy can they are not knowledgeable enough apparently. Shes been on a wait list for an appointment since late 2019 and im not expecting her to get an appointment even before her gcses at this rate. Luckily she is moving to a new school in september as she dosen't want to stay on at her current school due to how much trouble weve had with the lack of help. We never originally sent the school any information regarding the diagnosis in 2016 because she wasn't really experiencing many issues, just joint pains now and again, not severe and no fatigue. Shes obviously worsened since then but its very difficult for anything to be done without a named diagnosis. I keep telling the school she is under investigation and its like they are just ignoring.

Mobility difficulties
You may get the mobility part of PIP if you need help going out or moving around.
Thats what I found on the gov website; she dosen't need HELP getting around or going out, she can do it most of the time if its not a long time out (more than a few hours out) without help but if its causing her pain technically theres nothing anyone can do to "help" as they have put it here. She wouldnt get the daily living one as she dosen't organize money, cook because she is 16 shes still a child.