Call for national neurology plan
The report is based on the largest ever survey of people with neurological conditions in England with 10,339 responses. Thank you to everyone from our community who filled it in.
Failings in social care and welfare
The report also found failings in the social care and welfare system, as well as discrimination in the workplace for people with neurological conditions. The Neurological Alliance (which we're a member of) argues that we urgently need a National Plan for Neurology in England to address the failings in the system.
Unacceptable waits to see health professionals
Of the 10,339 people who took the survey, 39% reported seeing a GP five or more times before being referred to a neurologist. After their referral, one in three patients waited more than 12 months for their appointment.
The survey also found waiting times were very different region to region. People living in the poorest areas have the longest waits. And access to other specialists, like specialist nurses, physiotherapy or mental health support is also subject to postcode lottery.
Better information needed
The survey also showed people who are newly diagnosed need better information. Only 43% said they were offered written information. A similar proportion weren't signposted to places to find out further information.
For comparison, 73% of people with cancer said they were given written information when they were diagnosed, showing what's possible in terms of good care.
Only 55% of people with neurological conditions said they felt involved in decision-making for their care. For people with cancer, the national score for feeling involved in decision-making is 78%. Just 10% have been offered a care plan to help manage their condition.
Crisis in social care
The survey also showed acute failures in the social care system. Half of respondents say that the system is barely meeting their needs.
The survey shines a light on informal carers of friends and family, who are propping up a failing system. Almost half of everyone who took the survey said they receive care (that they don't pay for) from a friend or family member.
They also suggested that becoming dependent on family and friends can change relationships and people often feel they're a burden.
Disability discrimination widespread
More than one in three people who took the survey said they'd been discriminated against because of their neurological condition.
29% reported that their contract of employment has been terminated because of their neurological condition.
Speak up for everyone with MS
We're working closely with other members of the Neurological Alliance improve neurological services in England.