9 July 2019
Call for national neurology plan following largest ever survey of people with neurological conditions
People with neurological conditions are facing long waiting times, poor access to specialists and a lack of personalised care. That’s according to a new report published today by The Neurological Alliance. The report is based on the largest ever survey of people with neurological conditions in England, with 10,339 responses. It 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 argues that a National Plan for Neurology in England must be urgently developed to address the failings in the system. Additionally, The Neurological Alliance is encouraging people to take action by writing to their MP about the issues raised in the report. The survey also found wide regional variation in the experience of people with neurological conditions.
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.
Sarah Vibert, Chief Executive, The Neurological Alliance
Of the 10,339 respondents, 39 per cent reported seeing a GP five or more times before being referred to a neurologist. Following referral, one in three patients waited more than 12 months for their appointment. The survey also found wide regional variation in waiting times. Furthermore, the longest waits are experience by people with neurological conditions living in the most deprived areas. Access to other specialists, such as specialist nurses, physiotherapy or mental health support is also subject to postcode lotteries.
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 now 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.
Katharine McIntosh, Policy Manager, The Neurological Alliance
The survey also identified the need for improved information provision when people are diagnosed. Only 43 per cent of respondents said they were offered written information. A similar proportion were not signposted to places to find out further information. This can be compared to 73 per cent of people with cancer who said they were given written information at the time of diagnosis. This comparison shows what is possible in terms of good care. Only 55 per cent of people with neurological conditions stated that they felt involved in decision-making for their care. This can be compared to people with cancer where the national score for feeling involved in decision-making is 78 per cent. Just ten per cent of neurological survey respondents have been offered a care plan to help manage their condition.
The survey also highlighted the acute failures of 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 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. Disability discrimination continues to be widespread with over one in three respondents saying they had been discriminated against because of their neurological condition. 29 per cent state that their contract of employment has been terminated because of their neurological condition.
About the survey
The National Neurology Patient Experience Survey presents a comprehensive picture of the experiences of people living with a neurological condition in England. The survey has been run biennially by The Neurological Alliance since 2014. The survey ran online and in select neurology clinics between October 2018 and March 2019. It was managed by survey company Quality Health. It received 10,339 responses.