Myaware's Response to The Neurological Alliance's Survey Results

People with myasthenia are facing inconsistencies in the care and support they receive and discrimination at work, that's according to a survey conducted by The Neurological Alliance.

Of the 278 respondents with myasthenia, our largest ever sample, over half (52 percent) reported seeing their GP only once or twice before referral to a neurologist, however, a disappointing 31 percent reported having to see their GP five or more times before being referred. On referral, 50 percent of respondents received an appointment within three months, but 11 percent said they waited 12 months or more before seeing a neurologist for the first time.

Sarah Cuthell, myaware CEO, said: "The Neurological Alliance's patient survey highlights the value of the support services provided by myaware such as counselling, welfare and benefits advice and support groups. These specialist services have a hugely positive impact and can mean the difference between living well with myasthenia and struggling with day-to-day life.

"At myaware we continue to strive to provide information and support to people living with myasthenia and their support networks, including their families and healthcare professionals."

The survey also identified the shortfalls in the care and support people with myasthenia received post-diagnosis. Forty-one percent of respondents said they were not offered any information from their specialist or hospital following a diagnosis of myasthenia. A further 46 percent were not told anything about finding further information, whether it be from a particular charity or the NHS' website.

Perhaps what is more of a pressing concern is the lack of ongoing support. Fifty-four percent were not offered any extra therapy and only five percent of respondents were offered counselling, whereas 27 percent would like to have been offered counselling.

Seventy-eight percent said that they haven't been asked about their mental health wellbeing by a health or social care professional and nearly half of all respondents (49 percent) said they feel their mental health wellbeing needs are not being met.

The survey also highlighted the difficulties people with myasthenia endure at their place of work. Only 32 percent of respondents are currently in employment; 60 percent of all people stated that they were not able to continue work as normal since their diagnosis whilst 66 percent reported they had missed out on opportunities to develop their career due to their myasthenia. Worryingly, 29 percent said they have been discriminated against at work due to their myasthenia and 31 percent said that their contract of employment had been terminated.