How to Survive University with M.E. – DSA and Social Care by Emily Bailey | 10 September 2019

September 10, 2019

The following article appeared in the Spring 2019 issue ME Essential – the exclusive magazine for members of the ME Association. We featured Part 1 last week on the website as part of our September focus on education.

Emily Bailey continues with the second in her series on university life with M.E: Disabled Students’ Allowance, Social Care and University Applications.

Emily Bailey

When I began the process of applying to university it felt like a Herculean task. How was I going to ensure I picked a university with a supportive environment? What if the course I was interested in had too many contact hours for me to cope with?

How would I manage the personal care aspects of living alone, when at home I depended so much on the help of my mum? What universities would even accept me with only three GCSEs and two A-Levels?

These questions seemed an insurmountable barrier between me and a degree. However, the further along the application process that I went, the more support I found was available for disabled students attending university.  

Disabled Students' Allowance (DSA)

The first of these supports is Disabled Students’ Allowance (DSA). DSA operates as a branch of Student Finance, which you apply for alongside the application for your student loans.

M.E. falls under the eligibility category of a long-term health condition. Once DSA receives evidence of your diagnosis, such as a Doctor’s letter, you are invited to an assessment. 

I have been through the benefits system multiple times and without fail the word ‘assessment’ triggers nightmare flashbacks to PIP applications that leave me wanting to run for miles (which would be a bit of a miracle in itself).

Luckily, where DSA is concerned, my apprehensions were unfounded. My assessor wasn’t there to test the extent of my disability, rather we talked through my symptoms and how they impact my academic experience, followed by a demonstration of some of the supports which she could supply me with to help ease my university experience and the necessary recommendations to the DSA.

This can include things from notetaking software to printers, ergonomic seating to lightweight laptops (the student has to pay a contribution towards some items).

If you can make a strong enough case for why something would help you academically, then DSA will likely consider it. They also provide Assistive Technology Trainers to show you how to use all the software.

I made the mistake of not completing my training in the summer, so I had to fit my final few sessions in around lectures and seminars, which wasn’t ideal. 

Next you will receive a letter called a DSA2, which confirms the items DSA will fund and the approved suppliers of these items. You send a photo of this letter to the chosen suppliers who will, in turn, deliver your equipment. 

Social Care

“My social worker and I discussed what help I needed and created an ‘Adult Social Care Support Plan’.”

Unlike DSA, whose application process is refreshingly easy, sorting Social Care, i.e. personal care for university, is a complex process.

Firstly, there is the question of where you apply for funding: you apply to Social Services in the area of your permanent address, not your university address. If you put your postcode into, it will tell you exactly which Social Services this is. 

For me, the application consisted of the following stages (it may be slightly different in your area):

  • an online application for a needs assessment;
  • the needs assessment, followed by,
  • the allocation of a social worker.

My social worker and I discussed what help I needed and created an ‘Adult Social Care Support Plan’.

This consisted of help in the mornings to prepare breakfast; do the washing up; sort laundry and to get dressed, as well as twice weekly help bathing and washing my hair, and help every other week to batch-cook meals for freezing.

We also requested that I have help in the evenings getting ready for bed. My social worker then applied for funding, which is where we started encountering some difficulties. 

Firstly, social workers are busy, and your case will rarely be at the top of the pile. My case only moved along when I was proactively chasing it up. Unfortunately, it took me a while to realise this, which leads on to my second difficulty. 

Funding wasn’t approved for all the Social Care I had requested, so my social worker needed me to submit further evidence to present to the funding board a week before I was meant to be starting university. Whilst we did manage to get funding approved the next day, it wasn’t enough for me to have help in the evenings. 

Personal assistants

“If you’re wondering what having carers is like (I did), it’s not as weird as you’d imagine.”

I then encountered the final hurdle in the process: my social worker didn’t know where to find care agencies or Personal Assistants (PAs) near my university.

With only a week to go, my mum spent the best part of three days calling different care providers trying to find one which could help. Retrospectively, we should have been looking into care providers before my funding was approved. 

Originally, I’d planned to hire PAs, rather than use an agency. This was mainly due to the continuity: I didn’t like the idea of an agency sending different people every day. Getting used to a stranger bathing me was difficult enough, I didn’t want it to be someone new each week!

With PAs I would personally interview and hire two or three people to rotate throughout the week, meaning I’d at least get to know the people helping me.

However, the hiring process takes time: you have to advertise the role; hold interviews; send them for training and work out the paperwork, all before they can start.

Whilst there are intermediaries who can help, I simply didn’t have enough time to sort this and I had to use an agency for the first few weeks. After many phone calls, we had a meeting that went well and a few days later the agency began my personal care. 

Luckily, they were on the same page as me over continuity of care and found me two regular carers, both of whom are students, so that I am comfortable knowing who will be helping me each day.

If you’re wondering what having carers is like (I did), it’s not as weird as you’d imagine.

I was nervous those first few weeks as I got used to having strangers helping me bath and get dressed, but after the first month had passed it became normal. One of my carers is even in the final year of my course, which means that we get to trade stories about the tutors (don’t tell anyone!). 

If you have any questions, then you’re welcome to send me a private message on Twitter or Instagram (@byemilybailey).

University choices

And what about the university itself? Which university you attend can make as much difference as DSA and Social Care.

For someone with M.E, choosing where to apply can be more complicated than simply considering which course and campus you like best (not to undermine the importance of these two factors).

For me it was important that the university was campus-based, so that I wouldn’t need to travel far to get to my classes; that I was within an hour’s drive of my home, in case I needed help from my family; and that I was in an environment where I felt supported by the university staff. 

“Like many young people with M.E, I have far fewer GCSEs and A-Levels than the typical university entrance requirements.”

Like many young people with M.E, I have far fewer GCSEs and A-Levels than the typical university entrance requirements and many universities automatically discard applications which don’t meet these.

I decided that my first step would be to contact the head of admissions for the courses I was interested in, to explain my circumstances and ask whether allowances could be made.

The first to reply said that it was against university inclusion policies to hold disabled students to any other standard than their able-bodied applicants.

Personally, even were I to persuade this university that their policy was by very nature discriminatory, I wouldn’t want to apply: their response demonstrated a distinct lack of understanding of someone with complex medical circumstances, i.e. yours truly. 

Luckily, their answer was the exception, not the rule. The other two universities I was looking at were willing to make adapted offers and to flag the application so that it wasn’t automatically dismissed. In both cases I submitted my A-Level coursework as further evidence of my academic capability.

I am sure that everyone reading this will, at some point, have seen a university open day depicted in a film: crowded, busy, noisy. This didn’t feel like the most M.E-friendly option.

Instead, I went on campus tours, which take place separately to open days and are much quieter. I generally use either a wheelchair or mobility scooter to get around, so visiting the campuses and getting an idea of how accessible they were was important for me.

I also met with each university’s Student Support and a member of the course faculty. The Student Support Officers talked me through the assistance the university could provide, such as extended deadlines, notetakers, exam allowances and lecture recordings. These conversations gave me a sense of how accommodating each university would be of my M.E. 

One of the most common difficulties is coping with the contact hours of a course. I made a point, at this initial meeting with a faculty member, to ask how many contact hours would be required of me.

“Thankfully my university was willing to create an alternative study plan with me which spreads the course modules over four years rather than three.”

Typically, humanities will have fewer contact hours than sciences: my flatmate does Mechanical Engineering and can have eight hours of teaching in one day; my English course only has eleven hours in the whole week. Whilst I did manage this during my first term, I found it difficult.

Thankfully my university was willing to create an alternative study plan with me which spreads the course modules over four years rather than three. I now have eight contact hours per week – three of which are lectures that I can watch the recordings of, rather than attend.  

University Applications

Finally, after visiting the campuses it was time for me to sit down and complete my UCAS application. Although I was tempted to gloss over my M.E. in my personal statement – it’s not one of my favoured talking points, after all – I decided to try to view my M.E. as a strength.

Whilst the illness makes my education hard to pursue, the fact that I still wanted to go to university was a testament to my dedication to the subject. I received offers from both universities and an invitation to attend their Applicant Days.

As someone who doesn’t have particularly strong decision-making skills, these days were invaluable in helping me decide which university to make my first choice.

I requested the days’ timetables in advance, so that I could prioritise attending the sample lectures and seminars over the less vital activities. 

I will admit that for most of the time that I was applying to university I didn’t think that I would actually go. It seemed too far out of reach and I didn’t want to be faced with another disappointment due to my M.E. – I’d had more than enough of those.

If I hadn’t gone through this process and ensured that all of these supports were in place, then it might well have been too much for me.  I enjoy being a university student. Maybe it’s not quite the same as most people’s experience, but it works for me. 

Stay tuned for Part 3 of this series from Emily which will appear later in the week!

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