Survivors of brain damage facing physical and mental challenges have a growing network of support – thanks to the work of a charity.
Headway West Sussex (HWS) helps those living with acquired brain injury (ABI), their families and carers.
The charity was founded more than 20 years ago by the families of ABI survivors who discovered that there were no ongoing support services for people in their situation.
A support group, run by Graham Manvell, who lives in Crawley, has now opened its doors in Horsham, in addition to meetings already held in Crawley, Worthing and Bognor Regis.
“After almost a year of feeling intermittently light headed and dizzy, in May, 1995, I was diagnosed with a brain tumour,” said Graham.
“After surgery and radiotherapy, the doctors sent me home and told my wife that I had five years to live.
“Twenty years ago, there was little information and support available regarding rehab after ABI.”
ABI is an umbrella term for any injury to the brain sustained since birth, excluding neurodegenerative conditions.
The physical, cognitive, emotional and behavioural effects of brain injury include fatigue, mobility issues, memory loss, depression, anger or obsessive behaviour.
Apart from the physical challenges Graham faced following surgery, he said there was an ‘absence of information’ to help him .
“Had my wife and I known about ABI back then and had the information and rehab services that are available now, we would have been better able to cope with the physical, mental, emotional and relational challenges that ABI brings with it,” Graham added. However, after finding out about HWS, Graham said his life ‘took a turn for the better’.
Following a visit to the HWS support group in Worthing, he said he suddenly had the information he ‘sorely needed’ to understand his situation.
“I found mutual support and understanding from the others at the Worthing group, who were in a similar situation to myself. At HWS I felt understood and supported.”
During his first meeting, Graham heard of HWS’s plans to open a support group in Crawley.
“I was appointed to begin this group last year and now, in response to the ongoing demand, and now that the funding has been raised, a support group has also been opened in Horsham.
“The recent open evening was a great success. One lady who came along reported that, earlier in the day, she had spent two hours on the internet looking for information that might benefit her brother who has an ABI – but to no avail. However, after only ten minutes of browsing through our free information pack for families and carers, she found the answers she was looking for.”
Figures from the charity show that, from 2013 to 2014, 348,934 people were admitted to hospital in the UK with ABI – an average of 956 every day. In 2009, the Joint Strategic Needs Assessment report said 4,000 people sustain a brain injury in West Sussex every year.
The Horsham Support Group meets on the third Monday of each month, from 6pm to 8pm at the Phoenix Club, Forest Boys School, Comptons Lane, Horsham.