The report, published today, sets out an investigation based on the case of a 32-year old woman with a delayed diagnosis of CES, and explains more about the process of identification. She had been suffering pelvic, back, and lower abdominal pain, visiting her GP six times in two months. She had also had two visits to hospital in that time as well. Four days after her third visit to the hospital ED, she had an MRI and was then emergency transferred to a specialist centre for confirmation and treatment. She arrived in the early hours of the morning and her surgery took place later that same day. It confirmed she had ‘75% blockage of the spinal canal.’ The patient received intensive rehabilitation but still has ongoing back pain and neurological problems.
The reference case emphasised that although CES is rare, it can have a lasting physical and psychological impact on patients. This is exacerbated if there are further delays to diagnosis. Our investigation explored the issues at a national level looking at; the diagnostic challenges relating to CES, access and timing of MRI scans, how the diagnosis of CES is supported, national diagnostic pathways and role of spinal networks in England, and ‘safety netting’ advice and communication – both with patients and between hospitals and specialist centres.
The investigation found that.
- There is variation in the timeframes in which patients with suspected CES receive an MRI scan.
- Many local hospitals cannot use their MRI scanners out of hours, for a number of reasons, impacting on the timeliness of an MRI scan.
- There is no National Institute for Health and Care Excellence (NICE) guidance specifically on CES.
- Variations exist in treatment pathways across the system and within specific spinal networks.
- Safety-netting leaflets on the symptoms associated with CES were inconsistent in their level of detail and language.
The report concludes with six safety recommendations and three safety observations, aimed at reducing the delay in diagnosis via MRI scans, developing consistent national pathways/guidance and improving communication to patients. Two safety actions have already been undertaken as a result of HSIB’s investigation.
Kathryn Whitehill, Principal National Investigator says: “The patient in our case told us how much of an impact this has had on her physical and mental health. She has found it difficult to cope with the magnitude of this life-changing condition. The overarching key message in our report is that ensuring that there is no delay in accessing the right clinical tools, if CES is suspected, will greatly reduce the risk of long-term complications for patients.
“We do recognise the challenges that the NHS faced in diagnosing the condition, even before the immense pressure on services from Covid-19. This is why our recommendations are focused on streamlining processes, improving information sharing and consistency at a national level. All of this will aid effective decision making and support a timely diagnosis and the best outcome for CES patients across the country.”