PIP and university

Hello all,

On Christmas Eve, I received the lovely present from the DWP of a PIP review form and I'm very anxious. I am disabled (I am autistic and suffer from ADHD, anxiety, depression, dyspraxia and a skin condition) and on PIP with both enhanced rates.

It said online that this wouldn't be classed as a change of circumstances and so I didn't report it (I didn't think I'd need to because my needs have stayed the same) but now the time has come and I'm worried

My needs have predominantly stayed the same but I'm worried that what will happen is the second they see "goes to university" that it'll be stopped immediately and they'll be accusing me of all sorts and picking through every little thing - especially because I haven't got the same sort of professional support to back me up

I struggle a lot at university with my disability and making it this far has been so so so so difficult, the reason I'm able to get to uni is because the bus stop is right outside my accommodation and there's no 'route' to follow as the bus only goes to the university so it's much easier to follow (and required so so much practice/assistance just to feel okay with) as well as this, the shop is located across the street too which means I don't really have to follow a 'route' for that, if that makes sense? Last year my accommodation was literally on top of the shop so it was the same case then too

The first year was such a difficult pain, I kept having to go back home because I couldn't cope (the trains back were hellish with nobody there with me, my heart was in the bottom of my chest the whole time wondering what would go wrong) I kept on screwing up (flatmates who I wasn't very good at being social with were very cross with me because they checked my cupboard and found mouldy food in there, stuff like that)

I applied for DSA in autumn 2023 but they didn't get back to me until May 2024... which was the very end of term, I was just about to give up all hope when that email came through and it's only in early February that I'll finally be having my DSA assessment but it's after the deadline - the main reason I came back at all was the prospect of university but with support and I've been sludging my way through since, I've had interim support in place thankfully but I don't think they can help)

I didn't attend lectures at all September-October because I was too afraid of interacting with other people - I didn't even interact with the other people in my flat, I only went to the kitchen at like 4AM to ensure I could avoid people, it took me a long time to be able to start attending (I had to have a study support meeting) and even then it's not frequent because it's so difficult for me, I find leaving the flat quite difficult and it's made uni life so hard, constant missed lectures and seminars, as well as this, if I'm even slightly late and have to go in late then I get really upset and end up waiting outside the whole time because I can't bear the thought of going in late, alongside this, I keep on getting lost in one of the buildings I have a seminar in because I can't find my way around it and I've often had to send panicked emails to lecturers (obviously not seen until hours later) to see if they could assist me, this happens very frequently, I struggle a lot in group projects - I only have one friend at uni (who I met online) and if a group project doesn't have him then I can't do it at all and they've set up a rule where I can do group projects by myself due to the stress it's caused me

My partner has to come around very very frequently to assist me day-to-day, he washes my clothes, does my bedding, helps me figure out how to make meals, reminds me I need to eat (a very big problem, I am quite underweight) he goes to the shops for me (this can often be a major struggle for me so I've had to create a system when he's not around where I try and only go when it's super late in the evening/at night so I can guarantee that there won't be many people around and that it'll be dark)

He also goes with me to places because I can't go to unfamiliar and certain ones on my own - for instance, he is going to take me the opticians to get a long overdue pair of new glasses (they broke in December 2023 but I've been too scared to get a new pair because it's all different from the one back home and it'd be different people, I've no idea what it'd be like, they're usually quite busy places and there's so many mirrors and lights so I've just been struggling through life as my eyesight has gotten worse and worse)

I haven't been able to go to the GP at university at all in my time there because of autism difficulties having had the same GP my entire life - the first GP I registered with I tried to communicate with/book appointments via email and it ended up in this super irritating back-and-forth where they kept trying to ring me despite my many pre-warnings of "Do not ever try to ring me, I am only contactable by email or text" and I basically got nowhere in the end, cue me trying to arrange shared care for ADHD medication a couple of months later (via email) and basically the same thing happening, so I got told I could register with a different one and was shown how to do that so I did, but I haven't actually got in touch with them because I'm too anxious about it all happening again and all the stress of adjusting to a new GP and them getting used to you, etc when I've had the same GP all my life, I just can't do it

But the problem is as well is that if I had been able to go to the GP, that would've been a way to back me up and to just confirm "yes, these struggles are continuing in spite of them being at uni" and I'm so, so, worried because of the fact I haven't got that

I'm also meant to be on anti-depressants, etc, for severe depression - I was prescribed new ones in 2023 but I couldn't manage to take them by myself without the help of someone else - I used to be prescribed them (Sertraline, something else the second time but I don't know what, my dad usually handles everything on that front) and my dad would help me take them by leaving them everyday on a small plate with a glass of water and prompting me repeatedly throughout the day to take them but after he stopped doing that, I stopped taking them because I was unable to keep it up by myself and I haven't been able to acquire a new prescription due to aforementioned troubles with accessing the GP and truthfully, I'm not sure I'd be able to keep it consistent even if I did get a new one without the assistance of somebody else

Truth be told I haven't really been managing at university at all and I don't think I'd be able to handle going back next year and fear I'm going to crash out soon because I don't think I'm someone who can Cope without professional support, if that makes sense? Doing this for one year was hard enough let alone for two and I just really hope DSA can come through with support because this whole year has been relying on them coming through

Outside of home and uni (which is basically my front door, the shops and bus shop directly across the street with the bus to uni and then back so my life doesn't really leave that circumference) I have to get taxis everywhere because of my inability to understand maps and routes and because I get lost too easily (I've had it numerous times where I've been lost and upset and a friend has sent an image of a map to try and help but it's just made things worse because I don't understand what I'm reading and it just leads to me getting even more upset and breaking down) normally I'd have to take a taxi to and from my support group every single week which costs almost £100 per week and if I need to do my shopping at home then I normally have to use a grocery delivery service as I would struggle with this by myself and this can get quite expensive too, I have to take so many taxis to get around just because of my difficulties with not getting lost

I'm really worried that as I haven't had any 'official' incidents of being lost since then (when it's happened, I either get a taxi to rescue me or a friend to come to me directly) but never to the point it's reached in the past where the police have had to be called to come and rescue me

I'm really, really, really worried, I'm not sure what to do - the only 'professional' I've been able to think of who could help who's agreed to help is one of the youth worker staff at my weekly support group (*at home, not been in a while, said support group is ending soon and it's a source of great distress for me as it's the main way I have any kind of friends IRL) and that's literally it, I've tried asking the disability person who's been helping me out at uni but it's looking like a no-go there too - I really don't know what to do, I can't do this on my own, I don't have a life at all without PIP - having access to those taxis to get to and from places has improved my quality of life so much

TL;DR I'm super anxious that in spite of the fact it was a last resort because there was nothing else and the fact I've been struggling my way through due to my disability, the second the DWP hear I'm at uni, they'll take away my PIP and my life will be over immediately - I'm very, very scared