The most comprehensive survey undertaken of people with neurological conditions - disorders of the brain, spinal cord or nerves - with over 10,000 responses has found:

• Shocking failures in care, including long waiting times, poor communication and an absence of care plans, meaning that neurology patient experience rates significantly lower than cancer patient experience (a national priority condition)
• Patients’ experience of social care is worse than their experiences of healthcare, with informal carers propping up a failing system
• Workplace discrimination is widespread with one in three respondents saying they have been discriminated against because of their neurological condition

The findings come from the third biennial survey by the Neurological Alliance, a coalition of 80 organisations, including Sue Ryder, working together to transform outcomes for people in England with a neurological condition and shows that little has changed in patient experience in the last six years.

Healthcare

People with neurological conditions continue to wait too long for improvements in treatment and care, despite several improvement initiatives. The survey identified concerning delays accessing support, with 39 per cent of respondents seeing a GP five or more times before being referred to a neurologist. Following referral, 1 in 3 patients waited more than 12 months for their appointment.

Perhaps unsurprisingly, neurological care is subject to wide geographic variation, with the worst waiting times occurring in more deprived areas. The survey found patient experience for neurological care to be consistently worst in the Humber, Lincolnshire, Kent and Medway, and Gloucestershire regions; and best in Dorset, Norfolk and Waveney, and Suffolk and North East Essex.

The survey also identified the need for improved communication and information sharing when people are diagnosed. Only 42 per cent of respondents said they were offered written information and a similar proportion were not signposted to places to find out further information. This can be compared to 83 per cent of people with cancer – a national priority condition - who said they were given written information at the time of diagnosis.

Only 39 per cent of people with neurological conditions stated that they definitely felt involved in decision-making for their care, with just 10 per cent of respondents offered a care plan to help manage their condition. This can be compared to people with cancer where 79 per cent of people said they definitely felt involved in decision making, and 35 per cent have been given a care plan.

Social care

The survey also highlighted the acute failures of the social care system, with half of respondents saying that the system was barely meeting their needs. In particular, the survey shines a light on informal carers of friends and family, who are propping up a failing system.

Almost half of respondents indicated that they receive care (that they do not pay for) from a friend or family member. Respondents suggested that becoming dependent on family and friends can change relationships and people often feel themselves to be a burden.

Employment

Disability discrimination continues to be widespread with over one in three respondents saying they had been discriminated against because of their neurological condition and 29 per cent state that their contract of employment has been terminated because of their neurological condition.

Pamela Mackenzie, Executive Director of Neurological Services at Sue Ryder and Trustee of the Neurological Alliance, said:

"It is unacceptable that many people with neurological conditions continue to be let down. With an estimated 14.7 million people living with these complex conditions, it is deeply concerning that such high numbers of people are saying their basic needs are not being met.

"There is no excuse for people not to be armed with the information they need to plan their future at the time of diagnosis. At such a frightening time, there should be no barriers to stop them accessing the support they need.

"Sue Ryder wholeheartedly backs the recommendations made in this report. It is time MPs challenged the Government and their local health and social care providers on behalf of all the people with neurological conditions living in their constituencies."

Sarah Vibert, Chief Executive at The Neurological Alliance, said:

“The survey results are shocking. People with neurological conditions are being forgotten and they are running out of patience. Our third biennial survey shows that people with neurological conditions have not been prioritised by our health and social care system and as a result little has changed over the last six years.

“Neurological conditions can affect every aspect of a person’s life – from their relationships with their families, who often become informal carers, to their ability to remain in work. Long waiting times, accompanied by painful neurological symptoms, poor communication from healthcare professionals and workplace discrimination, prevent people from living their day to day lives. More must be done to support them.

“Positive cancer patient experience survey scores show what can be achieved when a condition is made a national priority. NHS England and The National Neuro Advisory Group must  come together as a matter of urgency to create a Neurology Plan for England to improve patient experience and help the 1 in 6 people living with a condition in England so that they no longer have to wait so long for care that it accessible, personalised and holistic.”

Professor David Burn, President, Association of British Neurologists, said:

“Whilst several improvement initiatives focused on neurology have been put in place over the past couple of years, this survey shows that policy is not being translated into care on the ground.

“The Neurological Alliance’s survey results reflect the findings of our research on the neurology workforce.  The workforce challenges include long standing vacancies in some areas of the country, not enough new neurologists being trained, fears over the potential consequences of Brexit, and a relatively high number of neurologists retiring.  These factors are almost certainly contributing to delays in some areas of the country and impacting adversely on patient experience of care.” 

About the survey

The full survey findings and methodology, along with the stories behind the data, can be read on The Neurological Alliance website.