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Epilepsy at University Halls - Reasonable Adjustment Advice/Expectations

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Julia21
Julia21 Community member Posts: 14 Connected
Hello - wonder if anyone can advise on their experience or provision at other unis?
Our son has nocturnal epilepsy and is due to join a London Uni tomorrow - staying in Halls as it's his first year.
The epilepsy is fairly well controlled on meds but he does have odd minor breakthrough (not full fit just wakes with bad headaches etc - usually if stressed/leading up to exams etc).  It's a recent diagnosis so when he applied to Uni he didn't apply locally and the London Uni is 200 miles away. 
We'd declared his disability and had talks with the inclusion team who'd said that whilst they could not provide treatment/care they could check on him if his epilepsy alarm 'watch' triggers - as it would ring the 24/7 halls reception.
All we want is someone to open his door and visually check he's not buried his face in the pillow as with nocturnal epilepsy there is a heightened risk of SUDEP/suffocation. 
The Uni emailed him yesterday (Friday) advising if the alarm triggers they would knock the door and if he doesn't respond they will call an ambulance.
This to me is pointless - how can he answer the door if he is having a seizure/fit? Further by the time the ambulance arrives, he could have suffocated.
Today we get an email from the residence manager reiterating they will only knock the door for 'consistency' but he can meet my son tomorrow, when he is due to arrive at halls to settle in, to discuss.
My son is now worried about going to Uni.  I spoke with a disability helpline yesterday and was advised they should have made reasonable adjustments to have a first aider who could open the door and simply move his head if required.  This would not have been costly - just basic first aid training - and as the reception is manned 24/7 and they have security would not be an additional ongoing cost.  
As his mum I don't want to put him at any risk but am fuming the Uni have left this so late and are putting his course/place at risk. However I would never forgive myself if something happened to him simply because they are refusing to open the door. 
I don't particularly want to launch a legal challenge or have a falling out with them before he's even started - I simply want them to have someone on the night staff who will open the door to do a visual check on him.
Am I being unreasonable? Is there any way to resolve this? Given they only refused yesterday where do we stand - freshers is starting this week and my son was looking forward to making friends but we are 200 miles away and if I got an alert and could do nothing and they won't open the door I'd be besides myself. 
Grateful for any advice/thoughts. 
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Comments

  • Julia21
    Julia21 Community member Posts: 14 Connected
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    To add also - I'm not sure how pleased/practical it is for the ambulance service to be taking calls because Halls staff/security are refusing to open a students door.  What if he's had a seizure but is sleepign it off? His previous seizures - during his sleep - have been 1 to 2 minutes but he's remained 'asleep' during and had to sleep for at least 5/6 hours following due to 'neurological storm' of the seizure and then wakes with quite a bad headache etc.  However, his Epilepsy Unit have said there is no need to call an ambulnce unles it goes past 5 minutes.  I'm not sure the ambulance service will need or want to be called if a 'standard' 1-2 minute seizure.  However, as my son needs the recovery sleep time after he is very groggy - similar to being 'drunk' asleep - so would be unlikely to be able to open the door even through he doesn't need medical care as such, as he just needs the recovery sleep. 
  • Sue_Alumni
    Sue_Alumni Scope alumni Posts: 485 Pioneering
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    Good afternoon @Julia21 and welcome to the online community 

    If you have epilepsy, your university has certain obligations to you under the Equality Act 2010 . This means that they have to treat you fairly. It also means that there are sources of support and help available to you, if you ask for them.

    Each university should have its own Disability Equality Scheme, which says how it supports students with disabilities. Also, most universities have a specific disability adviser or co-ordinator who can help with advice and getting help. It does seem however that they are not being as helpful as they could be. 

    The epilepsy society has a helpline  which you might find helpful and they may be able to help you and your son set out some "must haves" that have to be in place so he is safe at uni.

    It is such a shame that you are both having all this to worry about when he should be looking forward to going to university having worked so hard to get there!

    I do hope you are both able to resolve this satisfactorily. 

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  • forgoodnesssake
    forgoodnesssake Community member Posts: 513 Pioneering
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    This sounds a very difficult situation; I can't comment about epilepsy issues but we are also currently having some ridiculously late in the day conversations with a uni accommodation H & S bloke (recently promoted so flexing his wee muscles...) about how care support staff will get in and out and how the access cards will be managed.  My son is not in first year, and to date the uni have been pretty amazing and so we don't want to fall out with them now, but i think that sometimes the people making the rules have no idea about real life OR how to be flexible.  I hope you get something reasonable sorted out.
  • claregrace
    claregrace Community member Posts: 19 Connected
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    Hi, I feel for you having had an epileptic daughter at uni myself. It is hard to explain the emotional anxiety you have as a parent having to cope with the constant worry of your child having a seizure whilst wanting  them to live as normal a life as possible. I am not going to comment on the university issues you raise as they are way beyond my knowledge. With my daughter I approached the situation by getting the phone numbers of several people who lived in the rooms near to her and who were aware of her situation. I was very friendly so they knew who I was, sent cake etc. In that way if there was a problem then I felt I could ask them  to check on her. They also had my n7mber to call me if there were any issues. They make friends very quickly in the first few days. I also gave my daughter lots of lectures on taking it easy with student life to avoid her epilepsy triggers and explained that to enjoy student life she had to be well and that very late nights and alcohol would put all she worked for at risk. I know that she did push it a bit but she did moderate her actions. I know these do not solve the issues you have but may give you some peace of mind. As the weeks go by I am sure you bot( will feel more relaxed and confident about the situation. I hope this helps. 
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