A practice in the Milton Keynes area

The Practice

7. Ms K complains about the care and treatment provided by the Practice between November 2021 and March 2022. She says the Practice tapered her off steroids despite the symptoms she was experiencing and failed to investigate these symptoms.

8. Ms K says because of this, she experienced slurred speech, confusion, exhaustion, sweating, passing out, migraines, brain fog, memory issues and sudden collapse and an inability to lift her arms above her head. She says the Practice’s failure to investigate these symptoms meant she experienced them for longer than she should have. She also says this resulted in a delayed diagnosis of Addison’s disease.

9. Ms K is looking for an apology, service improvements and a financial remedy.

The Trust

10. Ms K complains about the care and treatment provided by the Trust between June and October 2022. She says the Trust did not appropriately test her for PMR, and failed to test her for all sub-types of EDS.

11. Ms K says the Trust’s failure to test her appropriately for PMR leaves her questioning the diagnosis that she does not have the condition. She says this leads to distress and wondering if the symptoms she experiences today are due to PMR. Ms K says the Trust’s failure to test her for all sub types of EDS means she does not know if the symptoms she experiences today are due to these sub types. This causes distress. She also says it means she has not received treatment.

12. Ms K is looking for an apology, service improvements and a financial remedy.

13. Ms K was diagnosed with PMR in 2020. She was prescribed a steroid medication to reduce muscle inflammation. When Ms K’s symptoms were controlled, the Practice began her on a pathway to taper off (reduce slowly) the steroids.

14. Ms K presented to the Practice five times between November 2021 and March 2022 with trouble walking, back pain, stiffness in her shoulder and stiffness in her neck and hips. The Practice referred Ms K to the Trust’s rheumatology department in February 2022.

15. In October 2022 the Trust decided Ms K did not have PMR. It diagnosed her and with hypermobile Ehlers Danlos syndrome (hEDS). This is the most common sub type of EDS, where the patient’s joints move beyond the normal range, causing pain and stiffness.

20. 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.

The Practice

21. Ms K says the Practice tapered her off steroids even though she was experiencing a number of symptoms. These included slurred speech, confusion, exhaustion, sweating, passing out, migraines, brain fog, memory issues and sudden collapse and an inability to lift her arms above her head. She says the Practice did not investigate these symptoms.

22. The Practice says it was worried about the long term use of steroids on Ms K’s health and bodily systems. It says it referred Ms K for a DEXA scan (this measures bone density) because it was concerned about the long term use of steroids on her body. It also said it referred her to rheumatology for further investigations.

23. NICE guidelines say if a patient experiences a relapse in symptoms when tapering off steroids, clinicians should increase the steroid to the previous does that controlled the symptoms. If a patient experiences relapse, clinicians should reassess the diagnosis. If it is not possible to reduce the steroid without causing a relapse, the clinician should refer the patient for specialist management. If a patient’s blood does not reveal inflammation, clinicians should refer the patient to a rheumatologist

24. GMC guidelines say when assessing, diagnosing and treating patient’s clinicians must adequately assess the patient’s condition. They must promptly provide or arrange suitable advice, investigations and treatment and where necessary refer patients to another practitioner.

25. We reviewed Ms K’s medical records. Between December 2021 and March 2022, the Practice documented Ms K had presented with trouble walking, back pain and stiffness in her shoulders neck and hips.

26. We appreciate Ms K told us she presented to the Practice with slurred speech, confusion, exhaustion, sweating, passing out, migraines, brain fog, memory issues and sudden collapse. We have not seen the Practice documented these symptoms. Due to the conflicting evidence available, we cannot say what happened here. We appreciate this will be frustrating for Ms K.

27. The records show in December 2021 Ms K complained of pain and standing up and walking. Ms K was taking 3mg of prednisolone (a steroid medication) a day. The Practice advised Ms K to increase the dose to 4mg a day and see if that helped. It advised her to seek medical attention if her symptoms did not improve or became worse.

28. Our adviser said this was an appropriate plan. This is in line with NICE guidelines which says when patients experience a relapse in symptoms, clinicians should increase the steroid to a previous dose that controlled symptoms.

29. The records show in the middle of January 2022 Ms K had complained of back pain, stiffness in her shoulder, neck and hips, and that she needed to use a stick to walk.

30. The Practice noted it had already increased Ms K’s steroid to 4mg. It documented Ms K was not keen to increase the steroid any further and she was taking painkillers to treat the pain. The Practice documented it was concerned Ms K did not have PMR.

31. Our adviser said the Practice’s decision to not increase Ms K’s steroid to a higher dose was an appropriate plan as Ms K was managing the pain with painkillers. This is in line with GMC guidelines to adequately assess the patient’s condition and provide suitable treatment.

32. As the Practice was concerned Ms K’s condition was not PMR, it referred her for a blood test to test for inflammation and for an ultrasound of her hips. Our adviser said this was an appropriate plan. This is in line with GMC guidelines which say clinicians must promptly arrange suitable investigations.

33. Ms K presented to the Practice again at the end of January 2022. The Practice noted she complained of pain across her hips and shoulders and difficulty walking. The Practice increased Ms K’s prednisolone up to 10mg.

34. Our GP adviser said this was an appropriate plan. This is in line with NICE guidelines which say clinicians should increase the steroid to a previous dose which controlled symptoms.

35. The Practice reviewed Ms K’s blood test results and these did not show any inflammation. At this point we have seen an indication something might have gone wrong, as it appears the Practice should have referred Ms K to rheumatology. This in line with NICE guidelines which say clinicians should refer patients to rheumatology when blood tests do not reveal inflammation. We have not seen this happened in this case. We have considered this further in paragraph 41 below.

36. Ms K presented to the Practice at the end of February. The Practice noted she was still experiencing pain and issues with her mobility. The Practice referred Ms K to rheumatology and continued her on 10mg of prednisolone.

37. Our GP adviser said 10mg was the correct treatment plan while Ms K was waiting for her rheumatology appointment. This was in line with NICE guidelines to refer patients to a specialist when they continue to experience symptoms despite an increase in steroid and when bloods do not reveal any inflammation.

38. The records document a telephone conversation at the end of March. It is documented Ms K was still waiting to be seen in rheumatology. The Practice advised Ms K she could remain on 10mg of the steroid whilst she was waiting for her appointment. Our GP adviser said this was an appropriate plan until the Practice received the results of her rheumatology referral.

39. During this appointment the Practice documented it was concerned about the use of steroids on Ms K’s health. It referred her for a DEXA scan on her hips and spine, and for a chest X-ray. Our GP adviser said these investigations were suitable in light of the Practice’s concerns.

40. We think this appears to be line with GMC guidelines, as the GP adequately assessed and treated Ms K’s condition at this appointment. They also arranged suitable investigations.

41. As set out above, we have seen an indication of a failing in when the Practice referred Ms K to rheumatology. We have gone on to consider whether it looks like this caused suffering or affected Ms K in another way. We have not seen any other indication of failings in the Practice’s tapering of Ms K’s steroids, or the investigations it undertook.

42. As an Ombudsman is a limited resource, we cannot investigate every complaint we receive. We need to use our resources to investigate the most serious cases, alongside cases that will have the biggest impact on improving public services for everyone. To address this, we have decided to focus on the more serious complaints people bring to us where they may have faced a more serious impact.

43. This means we are not looking at complaints where we can see there has been a smaller impact. This will allow us to provide the right level of service to complaints where the injustice has been significant and where we can make the biggest difference.

44. We have seen an indication of a failing in when the Practice referred Ms K to rheumatology. We appreciate this was distressing for Ms K as she told us she had to push for a referral.

45. Reassuringly, we have not seen this delay had a significant or long lasting clinical impact. The Trust found Ms K did not have PMR and diagnosed hEDS. There is no cure for hEDS. Symptoms are managed through a combination of pain management strategies, physiotherapy and occupational therapy. The Practice made the appropriate referrals following the Trust’s diagnosis.

46. We appreciate that due to the delay in the Practice referring Ms K to rheumatology, this caused a delay in Ms K receiving the diagnosis of hEDS. There was also a delay to the onward referrals by a maximum of one month. We acknowledge this has caused Ms K distress and frustration.

47. We recognise Ms K’s symptoms were impacting her ability to live a relatively normal life. We have not seen that the potential delay to the onward referrals would have significantly improved Ms K’s symptoms in the potential time period of one month.

48. Our Principles for Financial Remedy refers to our severity of injustice scale (SOI). This says an injustice is low impact if the injustice has not had a significant or lasting impact on the complainant’s ability to live a relatively normal life.

49. As set out above, we think there was no long term clinical impact of the Practice’s delay in referring Ms K to rheumatology. We think the emotional impact caused by this delay was also short term. Overall, we consider the impact of this indication of a failing to be at the lower end of our scale. Because of this, we will be taking no further action. We recognise Ms K may be disappointed by this.

50. It is understandable Ms K is concerned the Practice did not manage her steroids appropriately. When the Practice reduced Ms K’s steroids she unfortunately experienced a relapse of symptoms. We have seen the Practice managed Ms K’s steroids in line with the relevant guidelines. When the Practice was concerned Ms K did not have PMR and about the use of steroids on her body, it promptly arranged further investigations in line with the relevant guidelines.

51. We hope this reassures Ms K that overall, the Practice’s actions appear to be in line with relevant guidance. Where we have seen an indication something may have gone wrong, we have not seen this adversely affected Ms K’s health.

The Trust

52. Ms K says the Trust did not test her appropriately for PMR. She says the Trust did not carry out any formal investigations and the testing instead was just a conversation. She says this has led to her feeling uncertain about her diagnosis and is left wondering if symptoms she experiences today (hip, shoulder and neck pain, muscle weakness, stiffness, fever and fatigue) are due to PMR.

53. BSR guidelines say patients must meet four core inclusion criteria to be diagnosed with PMR. These are:

• The patient aged over 50 • The patient has morning stiffness for over 45 minutes • The patient has pain in both shoulders or an ache in the pelvic girdle or both • There is evidence of an acute phase response (the body’s early defence against inflammation detected in the blood).

54. The records show Ms K did have a history of pain and morning stiffness. Ms K did not meet two of the criteria, as she was not aged over 50 and there was no evidence of an acute phase response. Our rheumatology adviser said Ms K did not meet the criteria to be diagnosed with PMR. This is in line with BSR guidelines.

55. BSR guidelines say Trusts can consider patients who don’t have an acute phase response for specialist assessment. Trusts can consider investigations, including a number of blood tests, dipstick urinalysis or a chest X-ray.

56. The Trust carried out further tests even though Ms K did not meet all of the core inclusion criteria. This is in line with BSR guidelines which say Trusts can carry out further testing of patients whose bloods have not shown an acute phases response. Our rheumatology adviser confirmed all of these test results did not reveal any indications Ms K was suffering from PMR.

57. We appreciate Ms K feels the Trust did not appropriately assess her for PMR. Ms K thought she had PMR and the Trust then confirmed she did not. It is understandable she is concerned about the new diagnosis. As we have not seen any indication the Trust did anything wrong, we will be taking no further action.

58. In summary, we have seen no indication the Trust failed to test Ms K for PMR in line the relevant guidelines. We saw that when Ms K did not meet the core inclusion criteria for a diagnosis of PMR the Trust went further and carried out more investigations. We hope our explanation helps to show Ms K the Trust acted within relevant guidelines when caring for her.

59. We have next considered Ms K’s complaint about EDS testing. Ms K says the Trust did not test her for all of the sub-types of EDS. She says it only tested her for hEDS. Ms K says she is unable to walk unaided, has symptoms of dizziness and experiences sudden collapse. She says she is left wondering if these symptoms are due to the types of EDS the Trust did not test her for.

60. The Trust said it investigated Ms K thoroughly. It says it carried out an MRI of her neck, and an ultrasound of her shoulder and hips. It said it carried out a range of blood tests including inflammation markers, autoantibodies, muscle enzymes, myeloma screen, vitamins and her thyroid function. It says she met the criteria to be diagnosed with hEDS.

61. OUH guidelines list a range of specific symptoms for clinicians to consider when deciding whether it should refer a patient for genetic testing to diagnose the other sub types of EDS. The guidelines list the sub-types of EDS and its associated symptoms. These symptoms include skin that stretches beyond the normal range, widened scaring, excessive bruising, translucent skin, ruptured arteries, ruptured intestines, ruptured uterus, and rupture of the eye wall.

62. Our rheumatology adviser said the other sub-types of EDS are very rare. They said there are only a small number of specialist centres across the country who offer genetic testing to confirm a diagnosis. They said these centres have strict referral criteria and Trusts can only refer a patient if they are experiencing the symptoms listed in the guidelines.

63. The records document Ms K was referred to the Trust due to experiencing a relapse of symptoms (pain and stiffness in her neck, shoulders and hips) on steroid reduction. The Trust carried out a series of investigations and Ms K met the criteria for a diagnosis of hEDS.

64. Our rheumatology adviser reviewed Ms K’s records. There is no indication in the records Ms K was experiencing any of the symptoms required for a referral for genetic testing for the sub types of EDS. We also note the symptoms Ms K is concerned about are not symptoms listed in the guidelines.

65. The Trust’s decision to not refer Ms K for tests to diagnose the other sub types of EDS appears to be in line with OUH guidelines and with what our adviser told us. As we have not seen any indication the Trust did anything wrong, we will be taking no further action.

66. It is understandable Ms K is concerned the Trust did not test her for all sub types of EDS given she still experiences symptoms she has not received an explanation for. We hope our explanation assures Ms K the Trust appears to have acted within the relevant guidelines when deciding not to refer her for further tests.

67. We acknowledge how difficult these events have been for Ms K, and of her concern about her ongoing symptoms. We hope we have clearly explained our decision, and that this provides Ms K with some reassurance. We thank Ms K for bringing her complaint to us.

1. We have carefully considered Ms K’s complaint about care provided by the Practice and the Trust. We are sorry to hear of how Ms K’s health issues have affected her and recognise the impact these continue to have on her daily life.

2. Ms K has told us how she continues to experience issues with her health and still doesn’t know why she struggles to walk unaided. We appreciate this continues to cause her distress. It is understandable Mis K feels the Practice and the Trust did not go far enough to investigate her symptoms.

3. We have seen no indication the Practice failed to managed Ms K’s steroids in line with the relevant guidance. As we have not seen any indication of a failing, we will not be taking any further action on this.

4. We have seen an indication of a failing in when the Practice referred Ms K to rheumatology for further investigations. Reassuringly, we have not seen the delay in referral to rheumatology had a significant clinical impact. Because of this, we will not be taking any further action on this issue.

5. We have seen no indication the Trust failed to test Ms K for polymyalgia rheumatica (PMR) in line with the relevant guidance. PMR is a condition that causes muscle inflammation leading to pain and stiffness in the muscles around the shoulders, neck and hips. As we have not seen any indication of a failing, we will not be taking any further action on this.

6. We have also seen no indication the Trust failed to test Ms K for Ehlers Danlos syndrome in line with the relevant guidance. EDS is a group of genetic disorders affecting the body’s connective tissues. As we have not seen any indication of a failing, we will not be taking any further action on this.