Life after Subdural. ESA and Open University

My partner had a traumatic brain injury 2 years ago - a Subdural followed by a craniotomy. He’s not been the same since, struggling mostly with his emotions and coping mechanisms of normal daily life. He returned to work for 5 months (he’s a nurse) but was so anxious and stressed by the whole thing they suggested he stepped down.

He’s diagnosed with emotional lability and is on medication for this and he’s currently waiting to be seen again by the Neuro psych team.

His cognition and intelligence is unaffected, so he feels very frustrated doing nothing, but when he tries to do what he used to do it somehow just doesn’t work. He receives ESA and is in the support group meaning he doesn’t have to look for any work. Looking forward to the future we wondered if just to keep him focused on something whether he would be able to do an Open University course for example without his ESA being removed? Does anyone have any experience of this please?

[Kirk5w7]

Hi Fizz,

I know what they tell you, that 2 years is the recovery oeriod but thats a generalisation.

2 years is still early days.

Bear in mind that i am much older, 59 when i was hospitalised and 65 now but its taken 6 years to get me here.

I still dont drive, because i dont think i would be safe on the road, and only now do i think i could tackle sone voluntary work and then only for a max of 3 hours and maybe twice a week.

Open University would be fabtastic for your husband he needs to keep a grip on his intellectual abilities and gradually the rest will follow, but dont keep pushing it too much, just nudge at it.

I hope that the ESA wont be affected and i cant see how it would, but the OU can be expensive.

Please keep us updated, just ask the question of the DWP they cant penalise you for asking questions and he can argue hes using this time to improve his future employability.

Janet x

[Hidden in reply to Kirk5w7]

Thanks so much. It’s such a difficult thing for us around him to understand, I don’t think he really understands how he feels himself. He said he really feels a direction of some sort which is manageable will help him from going awol, which has been been the pattern unfortunately since his accident 🙁. Thanks- I will ask the DWP

[Kirk5w7 in reply to Hidden]

I dont want to appear sexist here im not but there are big differences between men and women especially when illness is concerned.

In general, women seem to cope better with this sort of thing. We can seem to accept the changes and move on forward. Men see it that its somehow a challenge to their masculinity and they have to get better and move on as quickly as they can.

This is not the case and it is not his fault, its how brain injury works. And it is no respector of who you were before.

But, he can manage his recovery, be patient and listen to his body. Rest when he has to and keep as active as possible, i swim but i have to use a full face snorkel mask so i can breath well and maximise the time in the water. And i walk, ive just done 18 miles of the Brain Damaged Baron’s marathon.

I keep my brain active with jigsaws and puzzles and i knit etc etc. Men dont seem to have as many hobbies.

It hasnt been easy trying to knit and pick up puzzle pieces again but constant trying helps.

Think outside of the box, reading is more difficult for me now so i listen to audio books.

Janet x

[Hidden in reply to Kirk5w7]

Thanks, you’re completely right. He struggles with being very dependent on me, not being able to provide as such. His hobbies before were the gym (which is where his accident happened) and this now wipes him out when he tries it, as his fatigue is immense, although he keeps at it. Acceptance is hard. To try and be who you were. It changes everyone I think x well done to you for all your hard work ❤️

[sealiphone in reply to Hidden]

It may be better to seek advice from a agency such as CAB, as there are a number of issues around students qualify for ESA. The Disability Employment Adviser at the Job center should also be able to advise on this issue.

The course which is to be undertaken and the hours involved are important factors.

Another issue here is that some claimants in the Support Group may not be subject to a further medical assessment, all this is far from straightforward.

Personally I'd want the Neuropsychologists opinion about my ability to take another degree, intelligence wouldn't be the barrier, however I don't believe I would be able to do a new degree.

[Hidden in reply to sealiphone]

Yes I would like them to help him, give their opinion. His fatigue is a massive problem. The last thing i want to happen is to take on something too soon like he did with work ☹️. He’d done so well and within weeks of starting back we were back to square 1 x

[swedishblue in reply to Hidden]

yep all too common. Have made several attempts but the fatigue is a killer!

[swedishblue]

Hi, I am too in the Support Group of ESA. I embarked on a degree course three years ago where I claimed student finance. I left after one term - it was too much for my neuro-fatigue. Before this, I made sure to write to the DWP to inform them, although never heard back. Presuming all to be well, I forged on but came a cropper with fatigue. Good job I left when I did too, as a couple of years following down the track, I was asked to attend a "Compliance Meeting" with the DWP. It turned out, I was in breach of my ESA and was made to pay the whole amount back. I produced evidence of a copy of my letter I had written earlier, but they wouldn't have it! It wasn't pleasant but I "bit my tongue" and paid the whole amount. Strangely, I still believe I was in the right and fully entitled to take a degree! But I wouldn't choose to study at a university again. I think Open University, where you can pace yourself is good, but requires plenty of self-motivation. If he's going to go for it, please don't only contact DWP on the phone but in writing, and ask for written confirmation on whether this is allowed.

Good Luck!!

[Hidden in reply to swedishblue]

That’s terrible! I too have had a bad experience of the DWP, where I’ve attended something similar and ended up with a bill, I had no proof and I’d attended appointments and acted on their advice but they wouldn’t have it. We are hence very careful when dealing with them now. I’m very unsure as to whether to disrupt his ESA in the future incase an OU course didn’t work out. Sorting money out with them is no easy task. His Neuro-fatigue is terrible and if he’s tired all his other symptoms are heightened ☹️

[sealiphone in reply to Hidden]

The DWP will never give advice beyond which benefit you may claim. That's why I suggested a CAB or possibly the Disability Employment Adviser. If you receive bad advice from a CAB or other similar agency you'd at least have the ability to claim for a consequential loss.

To be fair this question is rather complex and the vast majority of benefit staff wouldn't be competent to answer it.

Swedishblue obviously fell foul of who can and can't be a student.

[Hidden in reply to sealiphone]

Very true, Thankyou! 😊

[swedishblue in reply to Hidden]

Ditto! Too much stress and neuro-fatigue exacerbates all the other symptoms. I was wrecked for ages! She, the officious 'jobs worth' remarked that "I'd bitten off more than I could chew" (patronising so&so). What did she know? She didn't know me!! I hadn't taken a run and jump at it!! I'd been building stages - doing related courses and a diploma to prepare. Not for lack of intelligence, trying or commitment, very much a case, of severe fatigue and other symptoms worsening. Otherwise, I was excelling and enjoying the course! Btw, don't expect dispensation or support if you have a brain injury or cfs, as you're on your own!

A brain injury should never be underestimated!

But the good news about OU degrees, you are in control of what gets put in to the packaged degree. Could be useful first to test out the ol' grey matter, resolve, and motivation by doing an adult education college course before parting with big money! I'm very much pro educational courses as it helps increase outside contact, improves confidence and partnership with others. But if I ever reconsidered doing a degree I would choose the OU every time!!

NB/// ** Just be sure to get everything in writing from the 'gestapo' first!! **

[Pat-rick1]

Omg it’s like your writing about me . I’m no doctor and I always complain about everything. But because your partner seems to be excatly where I am at in my recovery, if that’s what you call it .i feel like I can give advice. I started meditating a few months ago. I has helped me so much ,just tools to help you through your day . If your partner is not meditating , ask him to give it a go, what has he to lose . Now at the beginning I was like no , not for me . But I kept at it because I wanted to beat this .im still fighting with my self every day .but now I have tools to fight back .

[Hidden in reply to Pat-rick1]

No you’re giving great advice. In his first year post injury he used Headspace, and it helped so much. But, as soon as he started work any spare time he had on days off was spent sleeping, and his pre-work pattern of resting, meditating and visiting his psychiatrist dwindled away. We hadn’t noticed until then the great effect doing all of that had been having until it wasn’t there.

He managed 4/5 terrible months at work - and now he’s off it’s like injury happened just last month again....like we have to get on top on everything all over.

A member of family paid for his psychiatrist in the first year as the NHS have a year waiting list, and his Headspace package was a voluntary gift from a Dr at work....but now all the immediate attention has gone from the initial accident we still need all that support, but haven’t got the funding anymore. We’re back on the NHS waiting list for Neuro psychiatry and it’s been 5 months and we haven’t heard a thing sadly.

We’re really grateful for everyone’s kindness,I don’t think either of us thought the impact would be so lasting x

[Hidden]

I would second the recommendation to do a short (cheap!) course first as a tester...

Shorter concentration span, slower learning speeds, memory issues, and not being able to plan study like you used to as it's as fatigue dependent as everything else - all makes studying much less fun than before!

Although everyone has a different mix of issues so you might find none of this applies!

OU is modular isn't it? Maybe just go for it and enjoy! And report back good news! Does us all good.x

[Hidden in reply to Hidden]

He has all of the above - frontal lobe dysfunction one of the Neuro Team describes it to me as. But when he’s on top of it and a plan is working he’s so much better. But our failing was once we let that go, thinking he was ‘cured’ it all came back with a vengeance.

It is modular, but I’m not sure it’s going to be as easy as he thinks.

This site has been so helpful.

[magdolna]

Just try everything and then you will know what can be done or not done or adapted accordingly.

[neilhapgood]

Hi Fizz,

I was similar for a long time, its so confusinf when your connition and intelligence are there but you still just can't carry on as normal.

I started to get better after I did a lot of research and understood more about the brain and how it is impacted by an injury and trauma. I was then able to help myself, I put all my learning and experience into a website to help family and friends understand how I was and I also helpfully as something of use to other people suffering as well, you can find the site here- braininjuryftp.com

all the best with it

Neil

[Hidden in reply to neilhapgood]

Thanks that’s amazing- we will have a look. I thought we knew what to expect, we both work in Neuro theatres, but this has really thrown us - surgery is one small part of a massive life changing event. Really grateful - my other half has been quite relieved reading your experiences

❤️