A delayed multiple sclerosis diagnosis

Introduction 
This case goes back to 2010 when a patient, Ms A, was referred to Canterbury DHB (CDHB) neurology department with a provisional diagnosis of multiple sclerosis (MS). Her referral was declined and although she presented to a GP in 2015 and 2018 with further neurological symptoms she was not formally diagnosed until 2019. 

Case 
On 30 September 2010, Ms A developed sudden loss of vision in one eye and her GP referred her urgently to the CDHB ophthalmology department (OPD) who saw her the same day and diagnosed optic neuritis.  

That same day she had an MRI scan which showed plaque formation consistent with MS. She was given a follow up appointment in November which she did not attend, and it's likely that this was a communication error by the OPD as she pointed out that she obviously wanted to know the result of the MRI. She was however seen on 8 February 2011 and was referred to the CDHB neurology OPD. 

The internal referral from the  OPD was triaged by the neurology department  and classified as 'semi-urgent' but she was declined an appointment due to staffing shortages and the Christchurch earthquakes. The letter declining an appointment was sent to Ms A and her GP, but no reference was made to possible diagnoses nor any specific advice about follow up other than a generic comment to suggest a further referral if new symptoms developed.  

The risks to Ms A were compounded by her general practice notes (and presumably her doctor) being transferred from medical centre 1 to medical centre 2 in 2012, and then to medical centre 3 in 2013 which was then sold to medical centre 4. 

In 2015 Ms A was seen at medical centre 4 by Dr B who was not her usual doctor and who subsequently explained that at the time he was under significant stress and had a medical condition which caused him to retire. He noted that Ms A had tingling in her left arm and leg and had fallen on a number of occasions. His diagnosis was of a possible TIA or an inflammatory process. He examined her and ordered blood tests but there is no record of his action plan, and the patient was not seen again by her regular doctor. It should be remembered that Dr B would have been trying to recall events that had occurred at least four years earlier. The commissioner found him in breach for not following her up and for not seeking a neurological opinion. 

In 2018 the patient was seen by Doctor C who was also not her regular GP. She had a 24-hour history of a severe headache, vomiting and vertigo. His diagnosis was that she had vestibular migraine and treated her as such but with the proviso that if she didn’t improve that she was to be seen again. Dr C noted that he had normal access to Ms A’s notes only back to 2012 and would only have tried to access earlier notes if he had good reason to; this meant that he could not see the 2011 diagnosis of optic neuritis. 

Three days later, Ms A rang the Medical Centre again and spoke to a practice nurse about her continuing symptoms and deteriorating vision.  Unfortunately, what the nurse said and did was not well documented and Ms A’s recollections were quite different to what the doctor and nurse thought happened.  There was an adverse comment about the nurse’s actions. 

In 2019 Dr F saw Ms A who had further visual problems and he was struck by the unusualness of the symptoms. He scanned back through the archived notes and found the 2011 ophthalmology letter with the MRI results.  

Ms A was then referred, and a formal diagnosis was made. 

HDC findings 
Subsequent to correct diagnosis being made, the CDHB Neurology department defended its decision on the grounds of lack of resources, the Christchurch earthquake and interestingly they also said that even if they had seen her, they would have simply told her to report back to her doctor if she developed any more symptoms. 

The commissioner and an independent neurologist were both critical of the CDHB.  The neurologist commented that the MRI result alone made it very likely that the patient had MS and noted that at least half of all patients classified as “semi-urgent” were likely to have serious pathology. 

It's likely that both the general practitioner and the patient would have concluded that by declining the referral, “no news was good news.” The commissioner felt that at the very least a “safety net” letter should have been written whereby specific advice should have been given rather than just “see your doctor if your symptoms change.” 

The commissioner did consider investigating the standard of care by individual doctors at the DHB but decided that this was a “system failure” and so censured the DHB. 

Learnings 

So, what are the learnings? For me they are: 

1. If CDHB had acted on the original referral Ms A could have started on treatment for her MS at least four years earlier than she did. 
2. When a hospital declines a referral, you may not know who made that decision and it may be wrong. We need to look critically at any attempt to refuse or delay treatment by secondary services and in some cases need to advocate for the patient. 
3. Decisions made in the name of resource constraint may need to be questioned. 
4. When things go wrong the commissioner will invariably look at the quality of documentation, particularly related to action plans. If there is no action plan you may find that the patient’s recollection differs from yours. 
5. In this case the diagnosis of “optic neuritis” was documented in the problem list in 2011 BUT it didn’t transfer seamlessly as the notes were transferred to subsequent medical centres.  If there is any doubt, archived notes do need to be checked.