Raising awareness

What strategies can increase awareness and understanding of DCM amongst healthcare professionals and the public? Can these strategies help improve timely diagnosis and management of DCM?

Podcast Episode 1: Raising awareness

AO Spine took over the Myelopathy Matters podcast of Cervical Myelopathy to tackle the top 10 priorities for Degenerative Cervical Myelopathy, DCM. In this episode Ben Davies and Michelle Starkey talk with Michael Fehlings, Tammy Blizzard, James Milligan, and Mark Kotter about raising awareness: Why is it so difficult even if we are talking about the commonest cause of adult spinal cord impairment? How could we get the word out there to the medical community and the general public?

Current evidence and reason for uncertainties

No systematic reviews, scoping reviews or guidelines identified.

Source of uncertainty

  • Spinal surgeons


  • Other healthcare professionals


  • People with DCM and their supporters


  • Original suggestions*

    * This list shows the original survey submission(s) that informed the indicative uncertainties and the resulting priority question.

    I believe that awareness within the medical profession is imperative if we are to reduce suffering and costly surgery within the Health Service

    Based on the literature, reporting of key features of DCM is especially low in primary care. How can promote the assessment at the first levels of care for early diagnosis and referral?

    I would like to see a better understanding of DCM among GPs, neurosurgeons, and nuerologists.

    I'd like to see surgeons and nuerologists,  educated in this disease so they can help. They don't seem to know much. They don't see DCM as a spinal cord disease.

    What is GP and physiotherapists understanding of the condition? 

    Development of more standardized education for providers, patients and the public regarding this condition.  Most have not heard of it and are unaware that it is permanent and not cured by surgery.

    Studies published and circulated to all GPs

    How many healthcare professionals are aware of the signs and symptoms of cervical myelopathy? Is myelopathy included in under-graduate training programmes for physiotherapists, nurses and other allied health professionals?

    Can there be a more standardized sign and symptom list for general practitioners to identify DCM patients more efficiently/more quickly?  Effects of additional inservice/education for GPs on identification of patients in need of surgical intervention.

    Why are so many GPs and physiotherapist unaware of myelopathy?

    Why is the medical profession in educated about this, why is this not a specialist field in its self

    How can we manage the sensibilisation of general practitioners and other health care providers concerning early signs of DCM?

    Curriculum planning at all the medical schools needs to include DCM in MFE and neurology teaching.  GP tutors for all NHS health boards need to be informed of DCM. Can the myelopathy.org charity organise roadshows for the fidderent health boards? The diagnosisis too often missed as 'off legs ?cause'

    GPS need to be made more aware of DCM & the calibrate the symptoms - like a tick chart .could this maybe be arranged by organising through the GMC

    Why don't GPs know more about the condition

    Sleep and breathing disorders are common in patients with cervical spine injury however the awareness to diagnosis of these disorders among patients and providers is very low? How can that can be addressed to increase the awareness and to identify disease early.

    Can precise examination of GP after education course help with early diagnose DCM.

    More awareness of the condition by the medical profession, quicker diagnosis to prevent long term neurological deficits.

    How do we educate primary care physicians/allied health to detect DCM early?

    Would education of healthcare professionals promote better understanding and care of a sufferer

    Quicker diagnosis through improved knowledge about the symptoms amongst medical practitioners

    How can GPs be educated about the early signs of DCM?

    How can GP's be educated about the necessity for rapid diagnosis and treatment?  Which words in the Word Cloud would work as triggers for GP  s?

    How best can the healthcare team manage DCM? Education, exercise, radiological tests!

    5 minute quick consult guide to diagnose and grade csm

    What initiatives have been commenced to increase public awareness of DCM and the early signs?

    Early diagnosis by educating primary care physicians on symptoms and factors that increase your risk ( hyper mobility in my case).

    Educating family members

    What work is being done to make people aware of the symptoms which lead to Myelopathy?    What work is being done to advertise the severity of a life altering condition?

    How can GP's be made more aware that DCM may be a condition to consider when patients first present with various symptoms such as stiffness of hands, co-ordination difficulties and not to assume it is due to carpal tunnel/wear and tear and automatically given painkillers.  Further investigations may be needed.  When you've been to GP with various issues over the years, no-one is able to join the dots together until you have your MRI imaging and then the patient realises they are a text book candidate for DCM.    How diagnosis of DCM can be speeded up, as in my case the diagnosis has taken very many years which has resulted in the progression of symptoms before surgery.

    How do patients notice this disease. Because the symptom of DCM is little bit weak and easy to be ignored.

    I had been told I had spinal stenosis and arthritis. When I went to my 1st neurologist it was to rule out MS even though myeomalacia was part of the dx. My GP told me to take things in moderation. It wasn't until I sought out advise from a Dr. of Physical Therapy that I realized I had a problem that needed to be addressed by a neurosurgeon.

    How well informed GPS are as s they are front line in referrals , our GP hadn't a clue what was wrong with me despite presenting with classic symptoms.

    Why doesn’t doctors know anything about myelopathy ?

    What will the medical schools do to educate current medical doctors and future medical doctors as well therapists about DCM / diagnosis?

    How can we encourage/teach about early symptoms/detection?

    How could we raise awareness in GPs and patients about DCM diagnosis?

    How aware are GPs about DCM?

    How can you bring awareness

    What do GPs and other primary care health providers need to know to make a good and appropriate referral

    In general:  Better education on the subject across all caregivers. I.e. neurologist usually seem to favor a non operative treatment much longer (or generally...) than spine surgeons.

    Again, primary care Drs NEED education. I was diagnosed with fibromyalgia and only received a MRI due to a great nurse practitioner. Fibromyalgia contributes to disability, depression, limitations.

    Are other specialities like urologist  and geriatricians  awareness affect the outcome of management of patients with DCM

    Are there any ... early warning signs that allied healthcare workers should know?

    Can GP’s be more aware of DCM and have a recognised care plan?

    Can increased awareness improve outcomes  Will it just lead to increased diagnosis of unsymptomatic stenosis  Are GP aware of this disease? And other related specialities (eg Rheumatology, Physiotherapy,...)

    How can this condition be published more widely so GP's and medical professionals have greater knowledge of the condition

    Do variations in GP awareness of DCM affect outcomes?"

    Do variations in GP awareness of DCM affect patient outcomes? Why is there such a variation in diagnosis and treatment of the condition?

    What is the best way to educate the public and frontline providers re DCM to make sure that it is not neglected/missed, but also without causing undue paranoia and over-diagnosis?

    Education for PCP and patients.

    education for the patients with DCM

    GP ignorance

    GP ignorance.  Lack of public awareness - For example why does he need a wheelchair when I’ve seen him walk!  Disinterested care when nothing can be done

    How best do we educate GPs and other physicians about the importance of detection and early referral?

    How can awareness of the long-term effects of DCM be communicated to general health-care professionals?

    What is being done to raise awareness of employers to help sufferers adapt to their work environment?

    What is being done to raise awareness of the seriousness of the condition?

    How can we improve medical professionals knowledge to avoid GP ignorance and dismissive attitudes.

    How to educate medical practitioners and allied health professionals to DCM and its early recognition

    How to improving public awareness?

    How to raise awareness among non specialists for the early signs of CSM

    How well educated are GPs on DCM?

    i would like to see if our GPs after > 15 years from leaving medical school still possess the skillset to diagnose and refer cervical myelopathy accurately.


    Ignorance is one of the most isolating factor in all of this. ignorance even among doctors.  I have stopped trying to explain.

    In order to prevent bouncing between GP and physio, what education can be given to GPs to ensure an mri is undertaken earlier

    Is DCM diagnosis and management taught in the physiotherapy programs?

    Making people more aware of how devastating DCM can be

    More publicity given to the condition and all that it involved .Symptons are such that many sufferers are thought to be pretending ,attention seeking etc

    My wife's DCM I believe started to impact her life many many years ago - possibly 10 or more years.  And this must be the case for most DCM sufferers. How do we disseminate information about DCM to the population?

    Are GP's given enough education in the signs/symptoms of someone developing DCM?  In my wife's case I think not.

    The importance of education for general practitioners and specialists.

    There seems so much ignorance of the condition in the medical profession. Why is this the case?

    How can we improve recognition by social services?

    What is the impact of sensibilsation and education of public on „early diagnosis-early treatment-best outcome“?

    What is the level of understanding of DCM symptoms and signs amongst general practitioners?

    What programmes of awareness are made available to those who do not know about the condition?

    Which is the level of awareness and knowledge of GP about DCM?

    Why aren't doctors educated about this I had been seen my primary physician for 2 years and was never referred to a neurologist?

    Why does this condition seem not well known by general practitioners when so common?

    Why don’t doctors and health care persons not know about Myelopathy? I had to google my symptoms and research on internet for years before I found out whats wrong with me. And then it was to late. I got permanent spinal cord damage. And bowel and bladder was also permanent damaged. Now I am in electric wheelchair.

    Why is there so little knowledge and information amongst GPs about dcm considering this condition was discovered well over 100 years ago?

    Why is this condition not better known?

    Does a deeper knowledge of myelopathy (diagnosis and treatment) among patients, caregivers and GP affect the outcomes?

    Early awareness of causes of symptoms