The general public fear getting a neurological disorder - such as Parkinson’s or motor neurone disease - more than cancer, according to new research that we have undertaken.
45% of the UK public feared getting a neurological disorder the most, compared with 36% who feared getting cancer. Around 20 times more people said they were most fearful of getting a neurological condition (45%) than those who said coronary heart disease (2%).
Quality of life a major concern
The major reasons underlying people’s fear of getting a neurological condition were; poor quality of life, loss of independence and the burden it might place on their family and loved ones. Interestingly, these factors were of more concern to people than the prospect of physical pain or even an accelerated death.
Another major concern was the social isolation that these disorders might cause.
The survey also revealed worrying levels of public stigma and even bullying towards people with neurological disorders:
• More than 6 in 10 (62%) felt that the general public can be scared or embarrassed to talk to people with neurological problems in public – with nearly a third (31%) believing these disorders are more stigmatised than any other long term health problem
• 1 in 13 people have witnessed people with neurological conditions being teased or bullied in public
• Over a quarter (26%) of the public thought that ‘nothing much can be done’ for people with neurological disorders.
Help people live as fully as possible
Sue Hogston, Chief Nurse at Sue Ryder, commented: “We understand the public’s fear of getting a neurological condition as some disorders can have such a major impact on someone’s quality of life, independence and ability to communicate.
"We also know that getting a life-limiting neurological disorder is not the end of the road, and quality care and treatment can really help people adapt and live life as fully as possible.
"Society’s lack of awareness of conditions that affect the brain and nervous system is a big issue. So we wholeheartedly agree with the public’s verdict that we need to educate people about the symptoms, treatment and care options of different disorders.
This will go some way to helping people and their families cope and adapt if they’re diagnosed. But it will also help reduce the stigma, embarrassment and social isolation that can exist around these conditions.
"The best way to gain understanding in this area is to meet people with neurological conditions. Volunteering at specialist neurological centres, such as those run by Sue Ryder, can provide real insight into the challenges people face and how to support them to live their lives as fully as possible.”
Together we can turn this around
Paul Osborne, Director of a Sue Ryder neurological centre, said: “This study reveals a real lack of awareness and stigma surrounding neurological conditions. It is vital that we work hard, and work together, to turn this around.
But at the same time the survey also spotlights strong compassion and positivity in the public’s belief that we shouldn’t write off people living with these disorders. It is so important that we build on this and see beyond people’s conditions - focusing on what they can do, not what they can’t.”
No or very little knowledge
Worryingly, over two thirds of the public (67%) said they have no, or very little, knowledge of neurological disorders with nearly half (45%) not being able to name one condition.
Furthermore, over two thirds (68%) couldn’t name, or weren’t sure they could name, one symptom of motor neurone disease (MND), 85% couldn’t name, or weren’t sure they could name, one symptom of Huntington’s disease, and 65% couldn’t name, or weren’t sure they could name, one symptom of multiple sclerosis (MS).
Despite this lack of awareness, the vast majority (73%) of the public agree that we shouldn’t ‘write off’ people with neurological disorders.
• 6 in 10 agree that technology is improving the lives of people with neurological disorders
• Over two thirds (67%) think that people with neurological disorders can now live more independent lives than 30 years ago
• 52% agree that the charity sector can provide excellent specialist care and support for people with neurological disorders in different settings.
Greater investment in NHS and local authority services seen as beneficial
The majority of the public agreed that more investment in NHS and local authority services and a national awareness campaign about neurological disorders are needed. Those who thought that awareness had improved cited the role of well-known figures such as Stephen Hawking (who has Amyotrophic Lateral Sclerosis (ALS) a form of motor neurone disease) and Billy Connolly (who has Parkinson’s) as being important in raising the profile of neurological conditions.