Brain Injury: a hidden disability – Headway’s report on survey results from #SeeTheHiddenMe

Brain injury charity, Headway, has published new research which highlights the many problems faced by brain injury survivors every day as a result of their hidden disability. The research includes insight provided by 2,682 brain injury survivors and carers who responded to Headway’s survey, See The Hidden Me. The survey formed part of a wider campaign to raise awareness of the difficulties faced by people with acquired brain injury (ABI) and their carers from the hidden but life-changing effects of brain injury. 

Headway published the results of the survey in its report, Brain injury: a hidden disability, as part of the charity’s Action for Brain Injury Week 2022, which also has the theme #SeeTheHiddenMe.

Whose experiences are included in Headway’s report, Brain injury: a hidden disability?

The survey was completed by 2,682 respondents:

• 78% were brain injury survivors
• 22% were carers, including partners, family members, professional carers and friends
• respondents’ ages ranged from under 18 to over 65, most commonly 55 to 64-year-olds
• 85% were between 18 and 65 years of age

Their ABI brain injuries were from one or more of the following causes:

• trauma (47%)
• haemorrhage or bleeding (19%)
• aneurysm (14%)
• brain tumour (9%)
• infection (7%)
• hypoxic/anoxic injury - from lack of oxygen (6%)
• hydrocephalus – excess fluid in the cavities of the brain (5%)

What were the most common issues experienced by brain injury survivors and carers?

Hidden effects that were regularly experienced included:

• memory problems - experienced by 84% of respondents
• fatigue - 82%
• attention and concentration problems - 73%
• problems with thinking skills - 72%
• communication problems -  62%
• depression and/or anxiety - 62%
• dizziness and balance problems - 51%
• headaches - 48%
• mobility issues - 38%
• problems controlling anger - 36%
• visual impairments by 29%

These difficulties also contributed to wider effects, such as the emotional consequences of employment or relationship problems, isolation from losing friends or problems arising from being unable to control heightened emotions or reactions.

How common are issues arising from the hidden effects of ABI brain injury?  

• 76% of brain injury survivors experience daily problems owing to hidden or misunderstood effects of brain injury. 
• 55% of brain injury survivors feel they have been unfairly treated (such as in relationships, work or by disability services) as a direct result of their brain injury being hidden.
• 67% of brain injury survivors felt that their hidden disability had adversely affected their friendships.
• 42% of brain injury survivors felt that their friends did not have a good understanding of the hidden effects of their brain injury.
• 55% of brain injury survivors felt that their relationship with their partner had been negatively affected as a direct result of their brain injury being hidden.
• 70% of carers felt that their own relationships with others had been negatively affected owing to the hidden effects of someone else’s brain injury.
• 75% of brain injury carers had faced problems themselves, as a direct result of the hidden effects of someone else’s brain injury.
• 86% of brain injury survivors and carers felt that lack of understanding from society is one of the main challenges for those living with a hidden disability.
• 67% of brain injury survivors had at some time struggled to understand the effects of their own brain injury.
• 52% of brain injury survivors had got into difficult situations as a direct consequence of their brain injury being hidden.  

Settings in which people with hidden brain injury had experienced problems included:

• shopping - 71%
• benefits assessments or appointments - 56%
• employment - 45%
• hospital (45%) and GP (44%) appointments
• on public transport - 41%
• at entertainment (37%) or leisure (37%) venues
• in education - 27%
• in job interviews - 17%
• contact with the police - 15%

62% of brain injury survivors either owned or were waiting to receive a Headway brain injury ID card. The card is designed to help make some of the hidden effects of brain injury visible by listing the effects suffered by the cardholder, to help them ask for help in everyday settings or deal with the police.

Sadly, even 20 years after ABI, 73% of survivors still experienced problems on a daily basis as a result of their hidden brain injury. Out of the all the brain injury survivors who completed the survey, fewer than 1% said they had never experienced problems as a direct result of their brain injury being hidden.

See the hidden me

When asked to describe how their hidden brain injury made them feel in three words, the most common words used by those with hidden brain injury were frustrated, misunderstood and vulnerable. The message from those living with hidden but very real effects of brain injury to the public is: Be kind. Be patient. Take time to learn about brain injury. See the hidden me.

If you or a family member have suffered a brain injury as a result of an accident or medical negligence, you can talk to one of our experienced brain injury solicitors to find out more about making a claim by contacting us here.