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Category Guest Researcher

Delayed diagnosis in myelopathy, common to many neurological diseases

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
improvement.

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.

References

  1. Davies, B.M., Mowforth, O.D., Smith, E.K., and Kotter, M.R. (2018).
    Degenerative cervical myelopathy. BMJ 360, k186.
  2. 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.

Investigating exercise after anterior cervical discectomy: what should we advise?

My name is Dr Teena Fernandez. I am a GP in North Wales currently undertaking research as part of my Masters in Sports and Exercise Medicine at Nottingham University. During my studies my husband sustained a cervical spine injury resulting in a 2 level anterior cervical discectomy and fusion and we found little advice or evidence on returning to sport following such surgery.

Can you help researchers from the University of Nottingham?


We did not know if he could go dog walking, do martial arts or do manual labour for 2 hours a day? I subsequently undertook research which only identified expert opinion on returning to sport. I have now (with the help of a neurosurgery consultant) decided to find out how people return to sport following 2 level anterior cervical discectomy and fusion.

I plan to undertake a qualitative project interviewing approximately 8-16 participants to find out whether they have returned to at least 2 hours of exercise a day following the surgery. I would like to know whether they developed problems such as neck pain or pain or loss of function of the arms and legs with exercise.

Being a GP, I hope I can interpret the interviews and help people who require advice on getting fit after surgery. 

Please have a look at my advert and get in touch if you would like to be involved.

Dr Teena Fernandez
MBBS MRCGP DFFP DRCOG BMEDSCI PGCE

Why does this matter? A word from the director

The role of exercise after surgery in CSM is largely unexplored.  However there is much to suggest that it can enhance recovery; indeed this is well demonstrated in animal studies of spinal cord injury, underpins the basis for spinal cord injury rehabilitation centres and is starting to be evidence based in traumatic spinal cord injury.  So at Myelopathy.org, we are pleased to support this research study.   It should be noted, that this study is not just for CSM and looks in particular at higher performance athletes (exercising more than 2 hours per day), but no doubt this will have some relevance and we look forward to seeing the results.    Ben Davies, Director Myelopathy.org  

Worried about participating in research?

Myelopathy.org ensures all affiliated research meets UK Research Standards.  A useful video has been prepared by  Connected Health Cities and The Farr Institute to provide an overview of how health research is conducted and overseen in the UK, including how your data is looked after and used.  If you have any further questions or concerns, please get in touch.