By Max Butler
Edited by Ben Davies
Delayed diagnosis is a major issue for myelopathy patients (Davies et al, 2018) as delays can be distressing for sufferers, and the condition is likely to worsen without treatment. On top of this, surgical treatment becomes less effective the longer the delay (Tetreault et al., 2013). However, these experiences are not unique to myelopathy.
The 2018/19 National Neurological Patient Experience Survey shows that diagnostic delays are the norm for many with neurological diseases. These findings suggest a need for large-scale change in how neurological conditions are approached on the ‘front-line’ of care.
Why was this study conducted?
The survey, run by The Neurological Alliance, asks patients with neurological diseases
about their experiences. It covers a broad range of topics, such as diagnosis,
communication, hospital care, support for mental wellbeing, and access to social care,
welfare and employment. It is an important tool for establishing the quality of
neurological care in England, and for providing an evidence-base for the need for
How was the study conducted?
A questionnaire was completed by patients online and in neurology clinics between
October 2018 and March 2019. 10,339 patients responded to the survey, making it the
largest ever survey of people with neurological conditions in England. Previous surveys
were taken in 2014 and 2016, but this is the first time this survey has been conducted in
clinics, meaning a greater number of patients could be reached. It is also the first-time
regional differences in care have been studied.
What was discovered?
The survey shows many patients with neurological conditions are experiencing large
delays in referral to a neurologist, and therefore in diagnosis and treatment. Some key facts from the survey:
- 39% of survey respondents reported that they saw their GP five or more times
before being told they needed to see a neurologist
- 29% of survey respondents who needed to see a neurologist waited more than
12 months (from first seeing the GP)
- Over a fifth (21%) waited over 12 months for a confirmed and accurate diagnosis, after their first visit to a neurologist.
- Over half (55%) of respondents said they have experienced delays in accessing
healthcare in general
- The survey also found wide regional variation in waiting times. The longest waits are experienced by people with neurological conditions living in the most deprived areas.
Why is this important?
The survey shows that delays to diagnosis are experienced by many patients with
neurological diseases, suggesting a need for change.
As patients are visiting the GP multiple times before diagnosis, clinician training
focussed on neurological diseases may be needed. Indeed, research carried out by The Neurological Alliance in 2016 showed 84% of GP respondents felt they could benefit from further training on identifying and managing people presenting with neurological conditions. The survey also revealed inequalities in the services provided, suggesting a ‘post-code’ lottery in the care neurological patients receive.
The Neurological Alliance, in response to the survey, has said that a National Plan for Neurology in England must be urgently developed to address the range of problems found. The Neurological Alliance is also encouraging people to write to their MP about these important issues.
Further information can be found in Neuro-Patience, which presents the findings of the 2018/19 National Neurology Patient Experience Survey.
- Davies, B.M., Mowforth, O.D., Smith, E.K., and Kotter, M.R. (2018).
Degenerative cervical myelopathy. BMJ 360, k186.
- Tetreault LA, Kopjar B, Vaccaro A, Yoon ST, Arnold PM, Massicotte
EM, Fehlings MG. (2013). A clinical prediction model to determine outcomes in
patients with cervical spondylotic myelopathy undergoing surgical treatment: data from the prospective, multi-center AOSpine North America study. J Bone Joint Surg Am. 18;95(18):1659-66.