Royal Surrey NHS Foundation Trust

5. Mrs F complains the Royal Surrey NHS Foundation Trust mismanaged her diagnoses, cancelled a procedure to investigate her symptoms, and inappropriately stopped her steroid treatment during her admission in August 2022.

6. She says this meant she had to pay privately for a procedure to confirm her diagnosis and receive the steroid treatment she needed to treat her condition. She says the delay in her receiving the correct treatment meant that she had to take a higher dose of steroids for two years. She told us this delay and higher dose impacted her health as her hearing has been severely damaged which may be permanent, she had to have steroid cataracts removed, she experienced necrosis in her hip joint, myocarditis, and she now has heart function issues, including two leaking heart valves.

7. She says her ongoing health issues continue to massively impact her life. She told us the Trust’s actions prolonged her high dose steroid use, seriously affected her recovery, and she worries that there is little prospect of recovery after so long. She feels if the Trust had followed the correct guidelines in August, her outcome would have been improved. Mrs F wants an apology and an acknowledgement, service improvements, and financial compensation.

8. This very brief background is only intended to place the key events in context, not to provide a full, chronological account of everything that happened.

9. Mrs F has a history of cataracts, aged related macular degeneration (a condition that affects the middle part of the vision), cervical spondylosis (a condition that can cause neck and shoulder pain), and arthritis.

10. She attended the emergency department (ED) at the Trust by ambulance in mid-August 2022 with a painful and blocked ear, a severe headache, high blood pressure, nausea, and sensitivity to light. Mrs F reported she had experienced these symptoms for the last month.

11. The Trust admitted Mrs F. It carried out an ultrasound scan of her temples the following day and based on the results of this, it started her on steroid treatment.

12. Four days later, the Trust examined Mrs F’s ears and diagnosed her with an ear infection. It planned to treat the infection with ear drops. One day after this, the Trust decided to stop Mrs F’s steroid treatment and continue with the ear drops only. It planned for the Rheumatology team to see her in an outpatient clinic and discharged her the following day.

13. One week after her discharge, Mrs F reattended the ED by ambulance with a headache, blurred vision, high blood pressure, reduced urine, and sensitivity to light. The Trust discharged her the same day as her headache started to resolve.

14. Six days later, the Rheumatology team reviewed Mrs F in clinic. She reported worsening and new symptoms, so the team arranged a PET-CT scan. A PET-CT scan combines a CT scan and a PET scan to give detailed information about the body. The CT scan takes X-rays from around the body to create a 3D picture, and a PET scan uses a mild radioactive liquid to show up areas of the body that have cells that are more active than normal.

15. At the beginning of September, the Trust carried out the PET-CT scan and diagnosed Mrs F with large vessel vasculitis and asked her GP to prescribe steroids to treat the condition. Large vessel vasculitis is a group of conditions that cause inflammation in the blood vessels. One of the most common forms of large vessel vasculitis is giant cell arteritis. Giant cell arteritis is inflammation of the arteries at the side of the head. The Trust wrote to Mrs F to explain the diagnosis and the treatment plan.

16. On the same date the Trust wrote to Mrs F, she had a private procedure with an ophthalmologist to investigate her symptoms. Five days later, the results of this procedure confirmed a diagnosis of giant cell arteritis and the private ophthalmologist prescribed steroid treatment.

17. The Trust continued to review Mrs F following her diagnosis of giant cell arteritis until the end of November. It then referred her to a Rheumatology consultant at another hospital to continue her care, due to a breakdown in relationship.

20. Mrs F complains the Trust missed an opportunity to accurately diagnose her symptoms during her admission in August 2022. She says it mismanaged her condition when it cancelled a procedure to confirm her diagnosis and stopped her steroid medication as it decided her symptoms were due to an ear infection.

21. She told us how the Trust’s actions meant that the treatment for her condition was delayed, and this significantly impacted her health. She explained that she continues to experience debilitating symptoms over three years later and she is unsure if she will ever fully recover. She says her outcome would have been improved with different action from the Trust.

22. We were sorry to hear Mrs F’s concerns about how the Trust managed her care and how this impacted her recovery. From our conversations with her, it is quite clear this was a significantly difficult time for her because her symptoms massively impacted her daily life and her emotional wellbeing.

23. Giant cell arteritis is a condition where the arteries at the side of the head become inflamed. It is a serious condition and needs emergency treatment. The NHS says the main symptoms of giant cell arteritis include severe headaches, pain or tenderness at the side of the head or the scalp, jaw pain when eating or talking, and vision problems. It goes on to say more general symptoms include flu like symptoms, unintentional weight loss, depression, and tiredness.

24. NICE information on giant cell arteritis says other symptoms can include breathing problems or ear, nose and throat issues. The NHS says the treatment for giant cell arteritis is steroids, and some patients can be on this treatment for the rest of their life.

25. The British Society for Rheumatology guidance says patients with suspected giant cell arteritis should have a diagnostic test to confirm the diagnosis. This is either a biopsy of the arteries at the side of the head or an ultrasound scan of the temples, or both. It says an ultrasound scan before a biopsy will give a faster, accurate diagnosis.

26. Mrs F attended the Trust in mid-August with ear pain, a constant left sided headache, a temperature, nausea, and sensitivity to light. She told us she also had jaw pain, severe vertigo (a sensation of spinning or dizziness), a prickly scalp, and hearing loss. The Rheumatology team at the Trust reviewed her on admission, examined her, and decided she did not have giant cell arteritis and thought she may have an infection.

27. The following day, the Medical team organised an ultrasound of Mrs F’s temples to explore her symptoms as it thought she may have vasculitis (inflammation of the blood vessels). The ultrasound appeared to show some thickening of the arteries in her temple which suggested she may have giant cell arteritis. The Trust started steroid treatment for Mrs F on the same day based on her symptoms.

28. The Rheumatology team reviewed Mrs F again, six days after her admission. The team decided that her symptoms were likely because of an ear infection rather than giant cell arteritis as her main symptoms appeared to be pain from her left ear which spread across her face. It stopped her steroid treatment, gave her ear drops, and discharged her the following day with a plan to see the Rheumatology team in outpatients.

29. Our adviser explained that Mrs F presented at the Trust with complicated symptoms and not all of them are ones you would expect with giant cell arteritis. For example, the visual symptoms and the headache Mrs F experienced are suggestive of giant cell arteritis but the presence of ear symptoms, her initial high temperature, and redness of the ear could suggest an ear infection. They explained that if the Rheumatology team believed there was an alternative diagnosis for Mrs F’s symptoms, then it would be reasonable to stop the steroid treatment and cancel the biopsy of her arteries.

30. However, the Trust had carried out an ultrasound of Mrs F’s temples as part of its investigations of her symptoms and the result of this was highly suggestive of giant cell arteritis. According to the British Society for Rheumatology guidance, an ultrasound is a diagnostic test for giant cell arteritis and will give a faster diagnosis of the condition.

31. Our adviser explained that based on this ultrasound result, the Trust had two conflicting diagnoses (giant cell arteritis and an ear infection). They said it should have continued with the biopsy procedure to get a definitive diagnosis of Mrs F’s presenting symptoms. We have not seen any evidence that the Trust considered doing this.

32. We consider the Trust missed an opportunity to follow guidance from the British Society for Rheumatology. This is because it decided not to carry out a biopsy procedure for Mrs F to explore the possibility of giant cell arteritis as a reason for her symptoms despite the ultrasound result. We consider this is a failing.

33. After the Trust discharged Mrs F in mid-August, she attended the ED again at the end of the month with a headache. However, this improved with pain relief and the Trust discharged her on the same day. The Rheumatology team continued to monitor her condition and reviewed her in an outpatient clinic at the end of the month, after her second ED attendance.

34. During this appointment, the Trust noted she still had pain in both ears, pain in her temples, tenderness across the scalp, and pain in the front of her eyes and jaw pain when eating. It documented that the ear pain was still a significant symptom for Mrs F. It considered this symptom was not consistent with giant cell arteritis however other the newly developing symptoms (such as jaw pain) were. It organised a PET-CT scan to investigate her symptoms and explained if this showed she had giant cell arteritis, she would need to start steroid treatment.

35. At the beginning of September, the PET-CT scan showed Mrs F possibly had large vessel vasculitis. As we have explained above, a form of this is giant cell arteritis. The Trust decided she should start a trial of steroid treatment and asked her GP to prescribe the medication. It also wrote to Mrs F with the results and treatment plan.

36. At around the same time, but before Mrs F received the Trust’s findings, Mrs F’s private Ophthalmologist reviewed her for a pre-existing eye condition. The Ophthalmologist organised a private biopsy of her arteries based on her ongoing symptoms and lack of clear diagnosis. This biopsy confirmed Mrs F had giant cell arteritis. The Ophthalmologist started steroid treatment for Mrs F and informed the Trust of the biopsy findings, diagnosis, and treatment plan for steroids.

37. Based on the information we have considered, the Trust and the private Ophthalmologist diagnosed Mrs F with giant cell arteritis at the same time. We can see the Trust reached this conclusion following the results of the PET-CT scan. However, it carried out the PET-CT scan approximately one month after Mrs F’s inpatient admission. This means there is a one-month delay between Mrs F presenting at the Trust with symptoms relating to giant cell arteritis and the Trust diagnosing and treating her condition. We think it could have made this diagnosis earlier in August had it carried out the biopsy procedure during her admission to investigate her symptoms.

38. As we have seen that something went wrong when the Trust managed Mrs F’s symptoms during her admission in August, we have gone on to consider the impact of this.

39. Mrs F told us the delayed diagnosis of giant cell arteritis has massively impacted her life. She explained that she had to pay privately for a biopsy procedure to confirm her diagnosis of giant cell arteritis and start steroid treatment again which impacted her financially. She says she had to use steroids for a prolonged period of two years due to the month delay, and this impacted her health and recovery.

40. She told us her hearing has been severely damaged, and she has 50% hearing loss. She explained that she does not know if this will be permanent. She explained that she also experienced a number of health issues such as necrosis in her hip joint, an operation to have cataracts removed, a microhaemorrhage (tiny amounts of bleeding) in her brain, and a recent heart attack because she was on steroids for so long. She says her outcome would have been improved and her hearing loss could have been reversed if the Trust had correctly followed guidelines during her admission in August. She told us she now has little prospect of recovery.

41. We were sorry to hear Mrs F’s account of what happened, how this impacted her health, and led to prolonged steroid use. From what she told us, it is clear that her ongoing symptoms have been significantly distressing and life changing for her. It is understandable that she is concerned her outcome could have been improved with different action from the Trust.

42. Our adviser explained it is likely the Trust would have continued Mrs F’s steroid treatment had it carried out the biopsy procedure during her admission in August and confirmed her diagnosis of giant cell arteritis. They went on to explain that steroid treatment for giant cell arteritis usually starts at a high dose which is then reduced after two weeks. They told us that the treatment of giant cell arteritis with very high steroids (as in Mrs F’s case) is very effective immediately and should result in a dramatic improvement of symptoms and prevent these symptoms deteriorating further.

43. When Mrs F did get steroid treatment again, we can see she struggled to reduce to lower doses of steroids without her symptoms increasing again. Our adviser said it is likely this would have been the case even if there had not been a one-month gap in Mrs F’s steroid treatment.

44. They explained that if Mrs F’s symptoms were all related to the inflammation of blood vessels that is seen in giant cell arteritis, these symptoms should largely resolve with steroid treatment. Unfortunately, we can see that she continued to experience symptoms such as vertigo, hearing loss, poor balance, night sweats, weight loss, a hoarse voice, poor sleep, and fatigue even with steroid treatment.

45. Our adviser explained that some of these symptoms such as vertigo, a hoarse voice, poor sleep, and poor balance would not usually be related to the giant cell arteritis condition. However, we can see from the NHS and NICE information above, symptoms such as hearing loss, weight loss, night sweats, and tiredness can be symptoms experienced with giant cell arteritis. This means it is difficult for us to say which of the debilitating symptoms Mrs F told us about were solely because of her giant cell arteritis condition or the possibility of another co-existing medical condition.

46. Sadly, the steroid treatment has not resolved all the symptoms Mrs F experienced. Our adviser explained this does not appear to be because of the Trust’s delay in diagnosing Mrs F with giant cell arteritis. As we explained above, we would expect any giant cell arteritis related symptoms to resolve with steroid treatment even with a delay.

47. Our adviser went on to explain that it is unlikely that the Trust’s delay in treatment impacted the length of time Mrs F had to use steroids for. Instead, this is because of the continued and other symptoms she experienced. We consider an earlier diagnosis is unlikely to have changed this outcome. As the NHS advice above explains, steroid treatment for giant cell arteritis can be prolonged and, in some cases, patients need to take this medication for the rest of their lives.

48. Based on this information, it is difficult for us to say how the Trust’s actions impacted Mrs F. We cannot say with any confidence if earlier treatment would have improved Mrs F’s continued symptoms, outcome, or impacted the length of time she had to take steroids for (or the complications she said this led to).

49. This is because she continued to experience symptoms with steroid treatment, and we cannot say how long she would have needed this treatment even with an earlier diagnosis. However, she will also never know if her outcome may have been different, and we consider this led to some of the distress she told us about.

50. We were sorry to hear that Mrs F felt she had no other option but to pay for private treatment to get a diagnosis and how this impacted her financially. We have considered if the Trust should reimburse Mrs F for the private procedure she paid for to confirm her diagnosis of giant cell arteritis.

51. From the information we have seen, we consider the Trust was in the process of carrying out a PET-CT scan to explore Mrs F’s symptoms at the same time she had the private biopsy to confirm her giant cell arteritis diagnosis. As the Trust’s PET-CT scan also confirmed the diagnosis (large vessel vasculitis), we are satisfied it had reached the same conclusion at the same time as the private Ophthalmologist and had the intention to treat Mrs F with steroids.

52. This means we are unable to say that Mrs F had no other option than to seek private care and we cannot recommend the Trust reimburses her for these costs. We recognise this may be disappointing for Mrs F.

53. Our Principles of Remedy say that to put things right, organisations should provide an apology, explanation, and an acknowledgement of responsibility.

54. In its responses to the complaint, the Trust explained that steroid treatment should only be prescribed when a diagnosis is certain. It said the results of Mrs F’s temple ultrasound was not enough on its own to confirm a diagnosis of giant cell arteritis, especially as her symptoms were not typical of the condition. It explained that it stopped Mrs F’s initial steroid treatment as this could have made a potential ear infection worse, and her symptoms were not consistent with giant cell arteritis.

55. The Trust acknowledged that it did not initially follow British Rheumatology guidelines due to her presenting symptoms. It explained that the biopsy procedure used to confirm giant cell arteritis has a low sensitivity rate, so it arranged a PET-CT scan instead. When this showed a positive result for large vessel vasculitis, it wrote to Mrs F to recommend treatment, and it said this treatment was in line with relevant guidelines. It apologised for the distress Mrs F’s concerns caused her.

56. The Trust has acknowledged what went wrong and apologised for the general distress Mrs F’s concerns caused her, which is in line with our Principles. However, it has not fully acknowledged or recognised the significant distress Mrs F experienced when it decided not to carry out the biopsy procedure to confirm her diagnosis and stopped the steroid treatment to treat her condition. We have not seen any evidence that the Trust has considered what it could do to prevent the same thing happening again in the future.

57. Based on the available evidence and the clinical advice, we consider the Trust did not follow relevant guidance from the British Society for Rheumatology when it decided not to carry out a biopsy procedure for Mrs F in August to confirm her diagnosis of giant cell arteritis. This decision meant it stopped Mrs F’s steroids to treat the condition for approximately one month. The Trust explained why it stopped the steroid treatment however, we consider it would have continued this treatment had it followed British Society for Rheumatology guidance in August and carried out a biopsy to confirm Mrs F’s diagnosis.

58. Although we do not consider this failing led to all of the impact Mrs F told us about, we cannot see the Trust has fully acknowledged what went wrong or what should have happened. We cannot see any evidence it has made any improvements to its service based on the complaint to stop the same thing from happening again. Therefore, we partly uphold this complaint and make recommendations at the end of our report, as we can see that something went wrong that has not been fully remedied by the Trust.

1. Mrs F is understandably concerned the Royal Surrey NHS Foundation Trust (the Trust) missed an opportunity to diagnose and treat her condition during her admission in August 2022. She complains the Trust’s actions led her to experience significant symptoms and prolonged her use of steroids which she told us led to life changing debilitating conditions.

2. We were sorry to hear about what happened and how Mrs F’s concerns about the Trust’s actions continue to cause her ongoing distress. From what she told us, Mrs F’s symptoms have had a significant detrimental impact to her quality of life, and she has clearly been through a difficult and distressing time.

3. We consider the Trust did not follow relevant guidelines when it managed Mrs F’s condition in August. This is because it decided not to carry out a procedure to confirm her diagnosis and stopped the medication she needed to treat her condition. We think this action by the Trust led to some of the impact Mrs F told us about.

4. The Trust has apologised for Mrs F’s overall distress and acknowledged that it did not follow relevant guidelines during her admission. However, has not fully acknowledged what happened or reflected on the impact its actions had on Mrs F. Therefore, we partly uphold this complaint and make recommendations at the end of our report.