17. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the organisation has got something wrong. We do this by comparing what should have happened with what did happen.
18. Mrs P complains the Trust delayed diagnosing her mother with giant cell arteritis (GCA), and arranging the appropriate treatment as a result, including administering steroids on 28 November 2022.
19. The Trust says when the doctor reviewed Mrs F on 28 November, he was mindful of a diagnosis of GCA and took steps to rule this out. On the basis of the clinical findings he was unable to conclude she was suffering from GCA. It says there were no warning signs or red flags in the clinical findings which meant she should have been admitted to hospital or needed to start treatment with steroids.
20. We have carefully considered Mrs P’s complaint. The GCA guidance and article set out the steps a clinican should take when considering a diagnosis of GCA.
21. The guidance explains patients presenting with a history of new visual loss (temporary or permanent) or double vision should be evaluated as soon as possible by an ophthalmologist. It recommends doctors carry out a full prompt diagnostic evaluation.
22. It goes on to advise a blood test should be completed for a full blood count, C-Reactive Protein test and Erythrocyte Sedimentation Rate (ESR) test. A CRP test measures the level of CRP in your blood. CRP is a protein produced by the liver in response to inflammation. An ESR test, measures how quickly red blood cells settle at the bottom of a test tube over an hour. This rate can indicate the presence of inflammation in the body.
23. For GCA, diagnostically relevant symptoms include a headache, scalp tenderness, jaw claudication (pain in jaw when chewing or eating) and visual manifestations. The guidance explains many of the symptoms are nonspecific and a differential diagnosis must also be considered. GCA causes an elevation in the platelet count CRP and ESR, making these key indicators when making a diagnosis.
24. For a patient to be treated for GCA, they should be evaluated for features of the disease relevant to the prognosis, such as clinical and laboratory features of a marked inflammatory response, ischaemic manifestations such as transient visual loss or jaw claudication. We will now consider the events specific to Mrs F, in line with the above guidance.
25. On 28 November Mrs F was reviewed in the eye clinic. The records show when she presented she had a reduction of vision in both eyes. Her right eye was ‘PL’, which means perception of light (meaning she only had the ability to note there was a light on in the room). This is very poor.
26. ‘NPL’ is the worst level of vision on the scale (no perception of light), followed by ‘PL’. Next on the scale is ‘HM’, which means hand movement vision. This is also poor and means you can see a hand moving in front of you. The next is that you can count fingers.
27. Her left eye was ‘HM’, hand movement vision, which is also poor. Her right eye had sluggish pupils and the optic nerve was swollen with some inflammation. Her left eye appeared normal inside the optic nerve.
28. Anterior ischemic optic neuropathy (AION) is a condition characterised by sudden vision loss due to insufficient blood flow to the optic nerve. Anterior ischemic optic neuropathy can fall into two types. Non-arteritic and arteritic. The ‘arteritic’ type is GCA. The ‘non-arteritic’ type is due to risk factors such as high cholesterol and blood pressure.
29. At this appointment, the doctor was considering if AION was presenting as ‘arteritic’ (GCA), or ‘non-arteritic’.
30. The Trust did an assessment and took a history from Mrs F. The records noted no history of headaches, scalp tenderness or jaw. This demonstrates the doctor was thinking about a diagnosis of GCA, whilst also considering other diagnosis’, in line with the guidance.
31. When considering GCA, scalp tenderness and jaw claudication would point you towards a diagnosis of GCA. It is acknowledged you can have it without these symptoms.
32. GCA is a condition that affects the blood vessels in the head and neck, so can affect the eye, jaw, side of scalp and this is usually tender and these are the typical symptoms you can expect to see.
33. The other potential diagnosis, which the doctor made at this appointment was non-arteritic anterior ischemic optic neuropathy. This is a condition associated with high blood pressure and cholesterol and it is noted due to her age Mrs F had some of these risk factors.
34. The Trust made this working diagnosis as at this appointment as the doctor did not identify any specific GCA symptoms such as jaw claudication. The Trust had also carried out the blood tests, as set out in the GCA guidelines: ESR and CRP.
35. An ESR test would generally be raised with a diagnosis of GCA. Mrs F’s ESR was 44, which is not abnormal for her age. The general rule for ESR is to take a patients age, add ten and divide by two. As she was 92 this would be 51 as the upper limit of normal. Therefore 44 was within these limits.
36. CRP is generally a more sensitive test. An ESR may be ‘normal’ but generally the CRP result would be raised if a patient had GCA. Mrs F’s CRP was less than four, which is a low CRP. This pushed the diagnostic thinking away from a diagnosis of GCA. Mrs F did not have the typical symptoms or the inflammatory markers pointing to GCA’s usual presentation.
37. Our adviser explains this case was incredibly difficult and complex to diagnose for these reasons. The Trust carried out the appropriate scans and tests and made a diagnosis. This was a very rare presentation for GCA.
38. Although we are considering the appointment 28 November, the events that followed are important context and support why the Trust acted in line with guidance at this appointment. We will go on to explain why.
39. After this appointment, the Trust arranged follow up care for Mrs F. She was seen again on 2 December. Her vision was ‘NPL’ (no perception of light – meaning it got worse), in the right eye and ‘HM’ (hand movement) in the left eye. At this appointment she had been complaining of a headache and her blood pressure was raised. The Trust arranged for a CT scan. On 16 December Mrs F presented at A&E again as she had complete loss of vision.
40. On 17 December there was further follow up in the eye clinic by an ophthalmologist. At this appointment, her right eye had changed to HM and left eye PL. The CT scan did not show any pathology and was normal. The doctor carried out an assessment and recorded Mrs F had worsening vision and now had jaw and facial pain.
41. The presence of this symptom changed the diagnostic thinking very much towards GCA. The clinical picture had evolved. The right optic nerve was pale and was damaged. The left optic nerve was pale and left optic nerve was now swollen. Because of the jaw claudication it is at this point the likelihood of GCA became very high and Mrs F was started on steroids.
42. Our adviser explains this was a very complex medical picture. It is also relevant that for GCA, patients are given a high dose of steroids. This can also make a patient very unwell, and are sometimes not tolerated well. Prescribing a 92 year old with steroids is a difficult decision to make. It is a very finely balanced decision.
43. Due to the initial lack of GCA specific symptoms and in combination with the results of her inflammatory markers on 28 November, our adviser explains the decision not to give steroids at this point was in line with guidance. There was no conclusive evidence of GCA at this appointment. There was diagnostic uncertainty, and the clinical picture developed when Mrs F presented with jaw claudication.
44. At the appointment in question on 28 November the Trust completed a full and comprehensive assessment of Mrs F. It considered her symptoms, and test results as indicated in the guidance. It considered GCA, and made a differential diagnosis based on the findings. It was appropriate for the Trust to make this diagnosis at the time in line with the guidance.
45. We recognise that the clinical picture went on to evolve and understand why Mrs P has concerns about what went on to happen. We are mindful of what Mrs P has been through. We hope this can provide her with some reassurance that the Trust acted in line with guidance.
46. We would like to take this opportunity to thank Mrs P for taking the time to share her complaint with us and reiterate how sorry we were to learn about her mother’s deterioration.