Brain injury survivors: failed by the system

There is a hidden epidemic happening in the UK, with one person every 90 seconds being brought into hospital with an acquired brain injury.

Of those who survive, the effects are life-changing. The challenges that sufferers face can include paralysis, memory loss, incontinence, mobility issues, inability to make decisions, fatigue, and problems with cognition, making many individuals unfit for work.

The benefits available for people that are ill and unable to work are the Personal Independence Payment (PIP) and Employment Support Allowance (ESA), but as no two brain injuries are ever the same, the one-size-fits-all benefits assessment often fails brain injury survivors.

“Even the initial form that claimants have to fill out does not seem to take into consideration the fluctuations that a lot of brain injuries can present,” says Natalie Clapshaw, casework manager for brain injury charity, Headway East London, “the options on the tick box form are ‘yes’, ‘no’ and ‘it varies’, with many brain injury sufferers ticking ‘it varies’ the most.”

Headway UK’s campaign ‘Right First Time’ aims to change the way disabilities are assessed. They also aim to stop claimants from going through the lengthy appeal process by making sure assessors get it right the first time.

“People with brain injuries can end up homeless, that does happen.”

Part of Natalie’s job includes supporting people through the complicated process of applying for benefits. A decision can take around six-to-nine months from when the initial application is made: “In the meantime, survivors often have no source of money and rely on payday loans and food banks to get by,” she explains.

She also says that people with brain injuries can even end up homeless, and one very extreme outcome is suicide. “There was a case when a teacher was deemed fit for work and accepted this, she went back to work at the university and couldn’t cope and committed suicide.”

Brain injury survivors are vulnerable adults and need to be protected. Without money for rent, food and stability, they often get into serious debt, borrowing money from loan sharks, and, if they can’t pay their rent, they get evicted. “People with brain injuries can end up homeless, that does happen, and then they are lost from the system,” says Natalie.

I’ve experienced these challenges at first hand – I was a carer for my partner after his brain injury in 2015. Neither of us could work; Peter, because of his severe head injury, and myself, because I was his full-time carer. We didn’t receive anything from the benefits system for six months, and in the meantime, our family and friends helped us out. We also relied heavily on food banks, pawned all our valuables and took loans out to pay for rent.

Peter was attacked on the night of October 25, 2015, after he had been out with friends. The blow to his head caused a bleed on the brain and swelling. He was admitted to Queen’s Medical Centre in Nottingham where he had a six-hour, life-saving operation, including a craniotomy, which is the removal of a part of the skull to relieve pressure.

After surgery, he was in a coma for two weeks. He finally woke up, but because of his injuries, he suffered from memory loss, delirium and confusion and he was paralysed on one side of his body. After two months, the swelling on his brain went down, and he could move his right side again, he then had to have rigorous rehabilitation where he re-learned how to walk and finally was well enough to return home from the hospital, where I became his carer.

Peter returning from the hospital was supposed to be a happy time, but struggling to pay our rent nearly left us homeless. We moved into a council flat and waited for Peter’s assessment. Doctors had prohibited him from working as we were also waiting for him to have another operation, to have a titanium plate fitted into his skull.

Black and white Self portrait of Peter, side profile after his cranioplasty with an xray of his brain edited into the photo.

Brainstorm – Self Portrait [Peter Jordan]

Peter faced a lot of challenges, one being that the large hole in his skull, the size of his hand, meant that even the slightest bang to his head could be fatal.

After five months, his assessment date came through, although the appointment was located on the third floor of a building with no lift. I declined, Peter would not have been able to get up the stairs. He struggled with balance, he trembled and had nerve pains. At first, the DWP said the refusal of the appointment would mean that our claim would be denied, but later they changed their mind and sent a letter for a home visit. Was this his first test?

Other than the scar across Peter’s head, the true effects of his brain injury were not visible. They were complex and hidden. He couldn’t go out alone because of memory loss and the risk of him having a repeat injury. He would frequently lay in bed, because of his severe fatigue. He wasn’t in a wheelchair, but he was hardly mobile. 

“I could walk, but not very far, I couldn’t get back up from sitting down and I’d get exhausted really quickly,” says Peter. “It was hard explaining this to the assessor as it was complicated enough for me to understand.”

In a parliamentary debate on brain injuries, June 2018, Dr Lisa Cameron MP of the Scottish National Party raised the issue of mobility. She described mobility as not just how far someone can walk, but being able to plan a journey and many other aspects of day-to-day living skills that people could find difficult. These are the complex symptoms that assessors struggled to determine in the very short space of time that they see the claimants.

“Can you spell ‘world’ backwards? Take seven away from a hundred three times.” These are some of the questions asked to someone with a brain injury during their assessment for benefits. The process is called a mini-mental assessment, and it actually developed in the 1970s for people with dementia, a completely different illness.

The test checks for mobility and the ability to carry out daily tasks, such as raising your arms, standing up from your chair, making a cup of tea or something to eat using a microwave. 

This, again, doesn’t take into consideration the fluctuations in brain injuries and doesn’t measure the less obvious incapacities. My partner would have involuntary shakes causing him to spill a cup of tea, and needed to be reminded repeatedly that metal cannot go in the microwave.

“The assessments are rushed and can sometimes feel incriminating as the assessors have lack of eye contact because of typing,” says Natalie. “It feels like a formal interview.”

“It was exhausting, and I nearly gave up.”

Despite assessors supposedly being given training in all areas of disability, many were found to be lacking in specialist knowledge. They are a mixture of GPs, occupational therapists, physiotherapists and paramedics, so it is not surprising that 71% and 60% of respondents felt that their assessor for ESA and PIP, respectively, did not have an understanding of brain injuries.

Another thing to consider is that sufferers may lack insight into how their condition affects them, they still may be in denial about their limits. The fluctuation in the symptoms may mean some days they aren’t able to do those things, but on the day of the assessment, they can.

This issue was highlighted in the House of Commons parliamentary debate; Scottish Conservative MP Bill Grant said, “I call on them [the Government] to ensure that those assessing claimants on behalf on the DWP understand that, given the nature of their injury, they suffer may lack personal awareness and may be under misconception as to their own capabilities.”

This is what happened to David Parkin, who was denied benefits for his brain injury after his assessment because, he said: “I was convinced I was fine,” he recounts. The children’s story writer was found in a coma in Eastbourne, with a severe head injury, and was taken to the hospital, where he had a lengthy stay on the Timber Ward. He, like Peter, had post-traumatic amnesia and had to have intensive rehabilitation to learn to walk again.

He also woke up with euphoria, a state of happiness, which meant that his understanding of how bad things really were would have been distorted, impairing his judgement on how his injury had affected him.

David has also written a memoir about his brain injury called Tea Bags, Soap, Be normal. “The benefits system decided I was fine when I wasn’t,” he concludes, “the brain injury would certainly hinder me getting jobs that otherwise I might be qualified for.”

It is not however, always those with a hidden disability associated with brain injuries that are getting let down by the system, Rebecca Armstrong, features editor of the national newspaper The I Paper shares her own experience with the benefit system after a car accident left her husband Nick needing 24-hour care in a residential home.

“71% and 60% of respondents felt that their assessor for ESA and PIP respectively did not have an understanding of brain injuries.”

Nick is unable to walk or feed himself and yet Rebecca wasn’t even made aware of Personal Independence Payment (PIP) — the benefit that is paid for people who have difficulty walking or moving around. “It took months for me to find out about it. Every time I contacted the DWP I spoke to someone different who gave me different information,” she says, “it was exhausting, and I nearly gave up.”

Nick was barely able to sit in a wheelchair when Rebecca applied for a PIP, yet he was offered an appointment to bring him in for assessment. “I went mad,” she says. “I didn’t have a wheelchair accessible vehicle or access to one.” She couldn’t believe that they had suggested that someone who had been in a coma for five months should come to an office miles away from the neurological care home where he lived. This demonstrates how the one-size-fits-all way of assessing people is failing a vast variety of individuals with brain injuries, an injury that cannot be explained in a tick box form.

Low fi photograph of hands round a wooden table over paper work with the impression that they are discussing forms or are in a meeting

Assessments can feel like formal interviews [Unsplash:Thomas Rouault]

If a claim is rejected, then the first step is a mandatory re-consideration which is another form and takes another three months. “80% of mandatory re-considerations are rejected,” says Natalie. If rejected, an appeal can then be made to a tribunal court, which Natalie said, on a recent case that she was working on, took 33 weeks to get a date. 

“The good news,” continues Natalie, “is that the Casework Team has a 100% success rate when taken to tribunal.” The expertise within a tribunal seems to have a better understanding of the conditions of brain injury and how this can affect survivors on a day-to-day basis. It may also be because the decision makers within the DWP who read all medical evidence from the claimant’s specialists and the report completed at the assessment level have no medical background/qualifications. 

Headway’s campaign, ‘Right First Time’ focuses on three changes to the assessment process. The first is that assessors are people with expert knowledge of brain injuries. The second is that audio or visual recording of the face-to-face assessment should be provided to improve fairness and continuity. Lastly, for other medical evidence from the doctors and consultants they are being treated by to be taken into consideration.

Headway East London has been proactive in the fight to change the benefits system by forging links with Atos, one of the three major companies that the DWP use to assess applicants. They have created a Condition Insight Report, that Atos now use across the UK.

“The report highlights sensitivities to noise and lighting and sets out guidelines such as not cutting them up as they are talking and to give them time to answer questions,” explains Natalie. “Overall the feedback from Atos has been positive.”

This is one positive step towards making the benefit system fairer and assessments more comfortable and accurate. But Atos is just one assessing company, there are still many more changes that need to be made, as the consequences of an unfair assessment is another vulnerable adult being failed by the benefits system.

Peter finally got his benefits, he had his second operation to have a titanium plate fitted, I felt like I could finally stop worrying. His hair started to grow over his scar and he returned to university. Despite this, he still has a lot of hidden issues from his assault, such as epilepsy and chronic fatigue that are a constant reminder of what happened.

For me, his girlfriend and once his carer, I am still being reminded daily by threatening court letters from debtors and phone calls from bailiffs asking to pay back the high interest payday loans I took out whilst waiting for six months to receive an assessment from the DWP.

 

 

 

 


Featured image by Ian Espinosa via Unsplash CC.