A child abuse survivor whose brain injuries went undiagnosed for over 40 years is helping other sufferers after joining the board of a Lincolnshire charity.

Headway Lincolnshire has been supporting Chris Simpson, 53, from Grantham, since it was discovered that he had been suffering his whole life from an acquired brain injury (ABI) and PTSD following years of traumatic abuse at the hands of his mother.

“I didn’t have the most idyllic family life growing up, and during the first year of my life I was beaten regularly by my mother,” said Chris.

“At the age of nine months I was eventually taken away from my parents when it was discovered in hospital that I had a massive skull fracture. It extended from my right orbit to the occiput, and I also suffered nine rib fractures.    

“My mother was given three years’ probation and after a few months I was returned to her care where the violence against me continued; I went through various stays in hospital and children’s homes during this time. I suffered continuous head strikes and beatings, and I can still remember these which is extremely hard for me at times. My cut lips and black eyes were commonly reported to the social services.   

“After yet another of my head injuries was reported to social services, I was removed permanently from my parents’ care.”   

Chris then grew up in the care system and recalls his time at school being very difficult as he struggled to learn and retain information.    

“Being around other people was difficult,” he said. “I was often called names such as ‘dumb’, ‘daft’ or ‘stupid’ because I struggled to learn, which was very stressful for me. I also discovered that I lose my speech when I get really stressed, and as a result of my difficulty learning, I left school with no formal qualifications at all.”   

When Chris began his working life, he noticed that he would often become fatigued and would miss a day’s work just through the necessity to sleep all day.

“My sleep pattern problems completely affected my work life, and I had many periods of unemployment as a result,” he explained. “I always knew that there was something not quite right with my health, but I didn’t know exactly what it was.    

“Everybody else could learn faster and retain information better than me. I managed to return to college and gain four GCSEs which was extremely hard, but by this time I was in my 40s and stuck in repeating patterns of unemployment.”   

It was only when Chris attended a routine eye examination that he began to discover answers about his health. An optician spotted damage in Chris’ left eye, for which he was referred to hospital where it was discovered that the damage was consistent with major trauma.    

Soon after, and by chance, Chris watched a documentary on traumatic brain injuries titled ‘Me and My New Brain’ by Charlie Elmore which documented symptoms of acquired brain injury such as fatigue, memory loss, mood swings and speech problems; all of which coincided with Chris’ own health problems. He immediately began researching his symptoms and discovered Headway UK and its support group in Grantham, who advised Chris to approach his doctor with a referral from them.    

“I went to QMC Hospital in Nottingham where I was diagnosed with PTSD, but the doctor also felt there was much more to my problems. I was referred to the neurology department where my PTSD was confirmed, and it was also discovered that I was living with a serious head injury that dated back to my childhood!    

“The doctor said the ABI would not get better; life would continue to be a challenge for me, and I should be helped with disability and sickness benefits as there was no way to reverse such an injury.  

 “He also said I should be extremely proud of my achievements as it was rare to see these considering I had such a bad level of brain damage. I was really touched by that.   

“I left the hospital crying, reflecting on all the times that I had been told that I was stupid or daft or not going to amount to much. All this time I had a head injury and I only found out by strange twists of fate!”   

Since his diagnosis, Chris has continued to live independently and receives regular support from Headway Lincolnshire.

Explaining the struggle of living with a hidden disability and interacting with others he said: “You end up having to justify yourself and your symptoms a lot. When you explain that you have a brain injury, people often make comments such as ‘You look fine to me!’ or ‘When your injury gets better then surely you can go back to work?’ or ‘Are you lazy?’.  

“It can get extremely frustrating and tiring trying to convince people that you are suffering from a hidden disability and that you may need more time to complete tasks or you may react to situations in different ways to how others would expect,” said Chris.   

“I still suffer with things like forgetfulness and will often leave a pan on a hot stove or burn my food because my attention will be elsewhere. I liken this to having ADHD symptoms. My fatigue is still prevalent too, and I find I can get frustrated very quickly and often feel isolated because of my injury.    

“But despite all this I think I’ve managed to remain very positive about my life, especially since diagnosis; I have a great sense of humour and I feel like I can tune in to other people’s emotions very well too!   

“Headway Lincolnshire has been a lifeline; since my diagnosis I have regularly attended Grantham Headway’s support group, and in September 2021 I joined the board of trustees which has been amazing. As someone living with a brain injury, it’s fantastic to get involved in the official work that Headway Lincolnshire conducts and give a voice to those who are suffering from an ABI.   

“Through Headway Lincolnshire, I have met so many people along my journey who I can relate to because they have shared similar experiences, and I’m lucky enough to call them friends. Seeing all the people who have helped me, from other service users to volunteers and trustees, always leaves me with a warm sense of hope in humanity.” 

Ann-Marie Smith, Coordinator and Development Officer for Headway Lincolnshire, said: “Sadly, Chris’ situation of a late brain injury diagnosis and struggling through life is not unique.

“Many people assume that acquired brain injury always results from road traffic accidents, falls, or sporting injuries for example. But in reality, many result from trauma similar to that which Chris has suffered. Every year over 40,000 children acquire a brain injury; that’s one child in every classroom. Many of these children will be labelled as ‘naughty’ and will struggle, just like Chris did through education and life in general.

“Having a brain injury diagnosis and the right support can make a huge difference to those affected by ABI, and those caring for them.”  

Recent statistics from Headway UK have revealed that between 2019 to 2020, there were approximately 977 hospital admissions per day in the UK for acquired brain injuries (ABI), which equates to roughly one every 90 seconds. In the same year, Lincolnshire’s hospitals received a total of 4,262 admissions. 

The need for ABI provision and support in Lincolnshire is growing, and Headway Lincolnshire continually works to support and aid those living with an ABI and their families.  

If you or someone you know may be suffering from a head injury, click here to get in contact with the Headway Lincolnshire team.