Suffering a brain injury forced me out of work and onto benefits – it's a lonely thing to go through

Scott Pearshouse did not recognise Hayley, his girlfriend of four years, when he woke up after a brain injury. It felt like he had died. He was in an induced coma for two weeks and, when he came around, he was so poorly that he did not look like himself and he did not remember their life together.

The couple had recently moved into their first home together, Scott aged 27 and Hayley 23, and their careers were starting to thrive. Scott’s accident, a fall from 40ft, meant their life was derailed. He was made redundant and Hayley gave up her job to become his carer.

“It was like a parallel universe,” Hayley says. “It was like we would never have a normal life again. We were trying to get our heads around what our new future would be. I thought we’d never work again or have a family. I took that off the cards for us.”

• Nearly half of brain injury survivors claim benefits – without enough support to get back to work
• Game of Thrones star Emilia Clarke: ‘Surviving brain injuries gave me a fire to keep going’

Scott and Hayley never expected to find themselves out of work or claiming benefits – but they had no other choice.

One in three people who are not working say their health is the main reason for not being in employment, and there are a record 2.8 million people out of work due to long-term illness in the UK, according to the Office for Budget Responsibility (OBR). 

This is a major concern for the new Labour government with the welfare bill expected to soar. Liz Kendall, the work and pensions secretary, has pledged to “get Britain working again” with an “ambitious plan to raise productivity”.

But there are currently significant barriers to work for people with health conditions and their carers. Carers UK found that 40% of carers have had to give up work.

Hayley quit her job as a visual merchandiser after Scott’s accident in 2011. She had initially changed her hours to start at 6am so she could visit Scott in hospital, bringing photos and sharing stories until his memory came back.

But then he was moved to a rehabilitation hospital where visiting was restricted to an hour each day. “We really struggled with that,” Hayley recalls. “Some of the people there were really poorly. Scott was poorly, but he was walking and talking and he was aware. It was just a sad place. Every time I left, Scott would beg me not to go.

“Scott would be in tears and I’d be in tears, and I was like: ‘Jesus, this is tough.’ Scott was begging to leave, and they said he can go if he has 24-hour care at home. And I said: ‘I’ll do it.’ I left that day. I rang my boss and handed my notice in.”

Just weeks earlier, Scott nearly died. Hayley was returning from a festival when she got a call from Scott’s mum. He had fallen from a roof and they were not sure if he was alive. When Hayley arrived at the hospital in wellies and festival gear, they were cutting Scott out of his clothes and rushing him into critical care.

Scott was put into an induced coma and had a tap put into his brain to release the pressure. He had a bleed on the brain, broken coccyx, fractured cheekbones, broken ribs and a punctured lung.

Scott recalls: “All I remember is waking up and thinking: ‘What have I done?’ I didn’t realise it. I just wanted to get back to work. I felt like I’d let everyone down.”

He had been an electrical engineer at the same company for four years. He was given sick leave in the immediate aftermath but, a week before he was due to return, he was made redundant.

This still pains Scott now. “That hurts me deep down. They really let me down. Suddenly, I was at home. I had nothing. I had a decent payoff, but it was only to last me for a couple of months before I had to start working again.”

Hayley could see that Scott was still ill and struggling with his recovery. He had aphasia which impacts speech and he was misunderstanding conversations and relying on Hayley to make sense of simple things. He would get lost and struggle with directions. 

But Scott had been released from NHS care and told he was ready to go back to work – and they needed to pay rent. 

Both Scott and Hayley received jobseeker’s allowance while they searched for work. They say their experience of the benefit system was “horrible and minimal”.

“I’ve paid my taxes since I was 16,” Scott says. “In my couple of months in need, I was paid the absolute bare minimum. I had a certain expectation of my life. I had a good job. And then suddenly I couldn’t live my life because I was on jobseeker’s allowance.”

The couple were told they must take any interview or job offer they were given, regardless of the industry, or they would lose their benefits.

“There was no sympathy,” Hayley says. “I remember getting really upset. I was like: ‘I’ve been off work because my boyfriend has been severely ill and I’ve been his carer. This isn’t a choice for me. I’m in quite a sad situation.’ They were like: ‘This is the way it works. If you want your money, you go for the jobs.’”

The Labour government has promised to increase employment support and reform Jobcentres to support people into work. Before he was named minister for social security in the Department for Work and Pensions (DWP), Stephen Timms told the Big Issue he would like to see Jobcentres become “places where people go to be helped, not hit”. 

But there are fears that prioritising work over welfare could have a negative impact on people with health conditions, driving them to employment before they are ready.

Hayley says that the Jobcentre’s punitive approach “pushed Scott into jobs he wasn’t ready for”. He relied on contacts vouching for him, but then “he was burning bridges because he was getting the job, but he couldn’t do the job”.

It took a toll on Scott’s mental health and, when Hayley found her dream job in buying, he struggled to be pleased. He eventually went back to university to retrain in quantity surveying, but that was “draining” because he was still recovering.

The Big Issue has been calling for more compassion. Its specialist recruitment service Big Issue Recruit supports people who face barriers in work through a targeted and personalised approach, pairing people with job coaches to help them back to employment.

Big Issue Recruit has recently partnered with brain injury recovery charity SameYou, which was founded by actor Emilia Clarke, to support brain injury survivors and their carers into employment. 

Nearly half of brain injury survivors are forced to claim benefits because they are left without enough support to get back to work, recent research from the Big Issue and SameYou found.

A third of people felt they were ready to return to their jobs after their brain injuries. And of these, more than half (53%) said they had to return to work for financial reasons.

Shak Dean, a job coach at Big Issue Recruit, says: “There are many compassionate, empathetic and helpful individuals within the Jobcentres who are committed to doing what’s in the best interest of their claimants. 

“The main problem is they work within a broken system which perpetuates a culture of dehumanising the very people they are there to help. Coaches need to understand how a long-term health condition or caring responsibilities can affect the individual’s ability to gain and more importantly maintain work.”

Scott is now working as a quantity surveyor but he also has a larger purpose to help people. He is now an ambassador for SameYou and a mental health ambassador for LionHeart, which supports surveyors, and he hopes to use his experiences to help others on their back-to-work journey.

“I’m amazed I’m still here. I really am. I’m amazed that I’m talking and breathing, just thinking back to some of the situations I’ve been in,” Scott says. 

Hayley adds: “It’s such a lonely thing to go through. And I think the biggest thing missing from it is a counselling part of the recovery – for Scott to deal with what’s happened to him, and for me, dealing with that grief of losing the person that you love but being left with someone else that you still love but is different.

“I did go massively through grief, even though he was still here, and I had a new future and life. We were really lucky that we came out the other side. But some people never recover, and that carer becomes a carer forever. That person is a survivor, but a very different person forever.”

Scott and Hayley are now married and they have a two-and-a-half-year-old daughter. They are happy and healthy and they want to use their experiences to make a difference.

The couple would like to see more support for brain injury survivors and their carers, with a buddy system to connect people to other survivors so they feel less alone. Scott wants it to be called the ‘Hayley System’ because he worries for people who do not have their Hayley.

“I feel guilty that I had this support for free, 24 hours a day. Not many people have that. Where would I be if I didn’t have Hayley? That’s what really hurts me. I’m now at peace with myself and the world, but in the dark days, I’d find it difficult to understand. Why me?

“Everything happens for a reason, and it’s all coming to sort of fruition that I get to help others. I feel that’s my journey. That’s why I was given the second chance.”

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