Society 'Discriminating' Against Brain Injured

Main Category: Neurology / Neuroscience
Also Included In: Stroke
Article Date: 28 Mar 2008 - 2:00 PDT

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Brain injury survivors face discrimination and prejudice in society, according to the results of a survey commissioned by Headway - the brain injury association.

The survey, thought to be the first of its kind to explore how people feel about their brain injuries, has revealed disturbing levels of isolation, discrimination and prejudice. But of even greater concern is the fact that this discrimination is coming in the form of not only social prejudice, but also a lack of requisite care and attention from health, social care and other statutory agencies.

According to the survey, released to mark the start of Action for Brain Injury Week, which runs from 31 March to 6 April, 60% of respondents had experienced discrimination from at least one statutory service, such as health or social care, benefits or employment and more than two thirds of brain injury survivors believe they are discriminated against by society because of their injuries.

"The results of this survey are shocking," said Peter McCabe, Chief Executive of Headway - the brain injury association. "We are appalled that so many people with brain injuries are being mistreated by statutory agencies and facing prejudice by wider society.

"Three years ago, the government launched the National Service Framework for Long-term (Neurological) Conditions. This framework was designed to transform the way health and social care services support people living with long-term neurological conditions. The results of our survey clearly show that in three years, very little has been achieved and the NSF has to date been a failure.

"Brain injury can have devastating effects, which can often last a lifetime. It can affect every aspect of you: walking, thinking and feeling, and can mean losing the life you once led and the person you once were. People trying to deal with these life-changing conditions need our help and yet they face discrimination and prejudice in their everyday lives. We hear numerous stories of how our service users are often bullied, harassed and ridiculed for their disabilities, which is highly disturbing in a sophisticated society like ours."

The survey also revealed that almost half of all brain injury survivors in the UK find it difficult to tell people they have a brain injury due to the stigma surrounding it and the prejudice they may face, demonstrating the widespread nature of the discrimination.

"Headway calls on all providers of health and social care to use Action on Brain Injury Week to urgently review their services to make sure they are accessible to brain injury survivors. They must ensure all those providing public services understand that discriminating against brain injury survivors is unacceptable," said Peter.

Kirsty Offord, who is a service user at Headway Nottingham, regularly faces prejudice as a result of her brain injury. "My brain injury is largely invisible," she said. "Yet ten years on I still battle with daily life and I have to suffer abuse as a result.

"I've been verbally abused by a bus driver while trying to use my disabled pass as he thought I was a fraud, been humiliated by a library receptionist when I was struggling to fill out a form and my balance problems mean I am often refused access to pubs on the assumption I'm drunk.

"Knowing you can't do all the things you once could knocks your confidence enough, without being humiliated in public as well. I'm often treated like a second class citizen just because people are too quick to judge," she added.

Statutory services failing

The survey, conducted by the Social Neuropsychology Research Group at the University of Exeter, showed that it is not only social prejudice that people with brain injuries have to face. The majority of respondents (60%) claimed to have experienced a lack of post-acute health care, difficulty in obtaining benefits or poor treatment from social services.

"Misdiagnosis of brain injury is disturbingly common," said Peter McCabe. "Too often brain injury is passed off by medical practitioners as concussion or post-traumatic stress with patients being discharged under the assumption the condition will clear itself up. It's only when the symptoms persist in the following weeks, months or even years that people begin to take notice. This treatment is itself a form of discrimination.

"The complex nature of brain injury diagnosis and the fact that each brain injury is different, with no one clear route to recovery for all means many survivors face difficulty in getting the post-acute care they need - be that in the form of rehabilitation services or benefits.

"The costs of brain injury are immense, not only to the individual and their family, but also society on the whole. A total of 89% of our respondents reported the breakdown of at least one of their relationships, be that with a friend, significant other or family member as a direct result of their brain injury.

"The fact that 64% of brain injury survivors are unemployed has huge ramifications for society. With better treatment at the acute stage of care and more assistance given during the rehabilitation phase, who knows how many more people with brain injuries could return to work and provide a financial contribution to the community?"

Hidden disability

According to Headway, the discrimination faced by people with brain injuries is the result of a lack of understanding. "One of the difficulties in raising awareness of brain injury is the fact that it is often very hard to notice that someone has one," said Peter. "It is called the hidden disability as many people with brain injuries will appear, on the surface at least, to be perfectly healthy and yet they may well be struggling with the most simple cognitive functions.

"We're using Action for Brain Injury Week to raise awareness of brain injury so that we can start to make a change in the way people living with its effects are treated in society.

"At Headway, we work to improve life after brain injury. Many of our service users enjoy full and happy lives and achieve great things. However, people with brain injuries need and deserve better and fairer treatment - not only from social services but also from society on the whole.

"People with brain injuries are already battling with everyday life. We ask people to bear this in mind the next time they meet someone who seems a bit different."

Notes

Survey: 'Experiences of stigma and discrimination among individuals with brain injuries', Social Neuropsychology Research Group, University of Exeter

Sample size: 639

Overview of survey results

- 68% of people with brain injuries feel they are discriminated against in society
- 60% have been discriminated against by one or more statutory service
- 17% have received no support at all from any social services team
- 64% are unemployed
- 78% have had relationships break down following brain injury
- 89% said their brain injury had changed their personality
- 48% find it hard to tell people about their brain injury

Supporting case studies

Kirsty Offord: Regularly faces prejudice, such as being humiliated on a packed bus by a driver who refused to accept her disabled pass and being denied entry to pubs due to her lack of balance leading to people assuming she's drunk.

Lisa-Marie Russell: Lisa's speech can sometimes be a little slow and she often needs people to speak slowly to her to allow her to take in information. This leads to people calling her stupid and treating her as if she's inferior.

David Morrison: David is a prime example of the fact that people can live full and happy lives after sustaining a brain injury. Four years after sustaining his brain injury, David has returned to work full-time as a recruitment co-ordinator.

Crawford Fallon: Wife Elizabeth accused by medical professionals of feigning injury simply because her problem wasn't immediately obvious, setting her recovery back significantly.

Dominic Hurley: Discriminated against by benefits system that simply does not understand brain injury and cannot see his hidden disability.

http://www.headway.org.uk

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