Urgent call for national neurology plan to better support patients
People with neurological conditions are facing long waiting times, poor access to specialists and a lack of personalised care, according to a new report published by The Neurological Alliance. The report is based on the largest ever survey of people with neurological conditions in England, with 10,339 responses - of which, the most common conditions were Multiple Sclerosis (1,195 respondents or 11.5%) and Epilepsy (1,157 respondents or 11.1%).
Findings show 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.
Of the 10,339 respondents:
- 39% 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 experienced 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.
The survey also identified the need for improved information provision when people are diagnosed:
- Only 43% 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% of people with cancer who said they were given written information at the time of diagnosis)
- Only 55% of people with neurological conditions stated that they felt involved in decision-making for their care. (Again, compared to people with cancer, the national score for feeling involved in decision-making is 78%)
- Just 10% 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
- Almost half of respondents indicated that they receive care (that they do not pay for) from a friend or family member - highlighting that informal carers are propping up a failing system
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. Of those, 35% of the respondents have epilepsy.
- 29% state that their contract of employment has been terminated because of their neurological condition
About the survey and The Neurological Alliance
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. This survey was managed by survey company Quality Health and ran online and in select neurology clinics between October 2018 - March 2019. It received 10,339 responses. The full survey findings and methodology, along with the stories behind the data, can be read at https://www.neural.org.uk/patient-experience-survey/
The Neurological Alliance is a coalition of 80 organisations working together to transform outcomes for the millions of people in England with a neurological condition. For more information about the survey or for a discussion about the findings please get in touch [email protected] or 01923 882590.