A Bourne dad is among an estimated 12 million people suffering from a “legacy of neglect” for diagnosis and treatment of brain diseases.
Colin Ketteringham went through three years of tests before being diagnosed with a deadly neurological brain disease, MSA (Multiple System Atrophy).
There is no known cure for MSA, which slowly traps people in their own bodies.
Yesterday – at the launch of Brain Awareness Week – a group of charities said a lack of specialist knowledge and haphazard services can stop people like Colin getting the help and treatment they need.
Colin (51) had never heard of MSA, finds it tough to cope with the symptoms and says it’s especially hard for his young family to watch him choking and unable to swallow.
He said: “You don’t think it’s going to happen to you. You don’t think you are going to die early. It’s a really horrible disease.”
Experts say NHS neurological services will fail unless there are changes and the need for speedy improvements is vital with the number of people diagnosed with Parkinson’s Disease set to rocket by 25 per cent.
Arlene Wilkie, from the Neurological Alliance, said too little is being done to ensure the NHS is “fit for purpose”.