Serious for a reason – The importance and consequences of red flags – by Mick McMenemy Physiotherapy Clinician and Annie Glover – Founder & Chair of Cauda Equina Syndrome UK
Cauda Equina Syndrome is a relatively rare occurrence but has such potentially serious consequences that it should be screened for in every patient presenting with low back pain. Increasingly patients have direct access to Allied Health Professionals [AHPs] so it is imperative that we have a good understanding of this condition, know how to screen for it and crucially, know what action to take if CES is suspected.
This is of major importance to physiotherapists who typically will be recognised as the health professional of choice to assess and manage the patient with low back pain.
The physiotherapist will routinely be presented with the patient who has either self-referred without seeking advice from their GP or who has been advised by their GP to self- refer for treatment but without a medical examination being carried out.
We therefore have to actively assume that there is a possibility that the patient being assessed may have some kind of undiagnosed serious pathology (until we have checked) and that we must immediately screen for these before actively assessing and treating the patient.
Recently, there has been a growing criticism of the current use of lists of red flags. Lists of red flags ( signs and symptoms of serious pathology) often contain flags with little evidence of predictive value and mix together flags of different serious pathologies which is unhelpful and confusing to the health professional, particularly the non-expert in that specific serious pathology. For example, flags for Osteoporotic fracture, infection and CES are often included in one list; these conditions are quite different and have very different signs and symptoms. Confusing lists create the risk that clinicians will miss a specific condition or refer patients to specialists unnecessarily.
Martin Underwood (2014) has called for a move towards using ‘clusters ‘of red flags for a specific pathology. For example, if screening a patient for CES the following might be asked: since developing your back pain have you had any new symptoms such as
- Loss [or change] of control of your bladder i.e. incontinence or lack of control such as incomplete voiding or retention.
- Loss [or change] control of your bowel i.e. incontinence, constipation
- Saddle anaesthesia (numbness around the perineal area)
- Gait disturbance; tripping or unsteady on your feet]
If screening for undiagnosed cancer the key red flags are:
- Past Medical History of cancer
- Elderly (over 55 with increasing risk with increasing age)
- Unexplained recent weight loss
You can see the two different conditions are naturally screened for quite differently and if present require quite different management; suspected CES is an immediate transfer to Accident and Emergency for medical assessment, undiagnosed cancer is referred urgently to the patients GP for their assessment.
National audits in Scotland showed marked variation as to whether screening for serious pathology was even recorded never mind which flags were screened for. Current practice continues to see a wide variation in practice on which flags are screened for and whether this is recorded. This is surely not desirable? [click here for most recent work around this]
Shifting to a new paradigm of using and recording the screening of specific serious pathologies by implementing the use of ‘clusters’ of flags for each relevant specific condition would be a significant step for AHPs to systematically demonstrate that patient safety is central to our care. The development and utilisation of a standard screening tool would be very helpful for health professionals who are trying to help their patients and not harm them. Most importantly and fitting with the National policy on patient-centred care, routine screening will minimise the risk that patients are harmed due to a serious pathology being missed at the earliest opportunity.
Annie Glover in her blog below describes the personal catastrophic effects that result from suffering CES. Tragically, despite the long- existence of clear guidelines on how to screen for CES (CSAG on back pain 1994), this condition is often still not diagnosed quickly enough to avoid serious medical, physical and emotional consequences to the patient.
Reference Underwood M, Buchbinder R. Red flags for back pain. BMJ 2014; 348: 8
Annie Glover – Founder & Chair of Cauda Equina Syndrome UK
Since being diagnosed with CES in 2010, my life has changed completely. Not only have I lost my health, I have lost my career as a hairdresser & beauty therapist, my husband of 18 years and my home. All because of prolapsed discs in my lower back. My journey was not an easy one and I was disturbed to learn that the lack of appropriate information and support in my experience was not exceptional and many CES patients are really struggling to cope. It soon became apparent to me that things needed to vastly improve.
So, in October 2011, Cauda Equina Syndrome UK Charity was founded and we were officially registered as a charity in England/Wales and in Scotland in June 2012; we are the first and only registered charity in the UK for CES. The charity’s vision is a simple one; we want everyone diagnosed with CES to have access to quality information, informed advice and guidance and an appropriate level of support. We also work to highlight the importance of recognising the Red Flag Symptoms and ensuring early diagnosis and treatment, therefore minimising the number of complaints and litigation involving missed and late diagnoses.
On a personal level, things have got progressively worse since my surgery. I have needed to have Botox injected into my bladder to deal with increasing incontinence. Having been on crutches for 3 years I have repetitive strain injury in both my arms and had surgery recently to replace three slipped discs in my neck, and I regularly use an electric wheelchair.
I have to plan everything; all spontaneity in life has gone. Like many other people affected by CES, I suffer with bouts of depression and the psychological impact has been quite intense. I often wonder what life holds for me as I get older.
The charity, however, has gone from strength to strength. Our online community website launched in February 2012 and now has almost 560 members. For many the network has been a lifeline, particularly as they often leave hospital having been told how rare CES is and thinking they are alone. The site helps them feel less isolated. We also hold support groups at the spinal unit at the Northern General Hospital in Sheffield and at the QMC in Nottingham and are working towards having a group support network throughout the UK.
In our efforts to be the place to go for accurate information on Cauda Equina Syndrome, the charity website also holds a wide variety of medical, legal and practical information, given to us by subject matter experts. We intend to work with the NHS to continually build on this and become a central database for the latest research and developments on the condition.
We held our first conference at the Royal Society of Medicine in London in February 2014. Aimed at both medical professionals and patients, the focus of the conference was on understanding CES from different perspectives, the medical, legal and patient. We had presentations from respected professionals in the field, including Nick Todd, Consultant Neurosurgeon at Nuffield Health Newcastle Upon Tyne Hospital, and James Wilson-MacDonald, Consultant Orthopaedic Surgeon at Nuffield Orthopaedic Centre NHS Trust. Presentations and medical information from the conference has been posted on our website to stimulate further discussion. We’ve just booked our 2015 conference, which will take place in Sheffield on May 20, and will be even bigger and better then the first.
We have only just started on our journey, and I know we have a long way to go, but I am so pleased at how far we’ve come already.
We always want to hear from people who have been diagnosed with CES, or are relatives or carers of people with the condition. In addition, we are also keen to build links with Health Care Professionals at all levels and they are also welcome to get in touch. We also supply literature for use within the Health Care profession which details the CES red flags. For more information on how to get involved, send us an email to cesukcharity@gmail.com or call us on 0116 2608294
Or, to receive our monthly newsletter and keep up to date with the charity’s progress, register via email at em.marketing.cesukcharity@gmail.com, and you can follow us on Twitter @cesukcharity, like us on Facebook http://www.facebook.com/caudaequinauk and connect with us on Linked In http://www.linkedin.com/pub/cauda-equina-syndrome-uk-charity