Minor scoliosis and Bertolotti's syndrome
15. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the event(s) complained about had a negative effect which the organisation has not put right. Having done so we have not found any indication that these issues had a negative impact on Mrs S.
16. Mrs S says she was only told about her minor scoliosis and Bertolotti syndrome diagnoses in March 2023. However, the clinician told her this was seen on scans in 2016 and 2020.
17. She says she has not been offered any treatment for either of these conditions.
18. The Trust apologised that Mrs S was not told about the findings at the time. It explained the consultant did not think it was clinically relevant to the investigations.
19. The Trust said whilst they were treating Mrs S, there were more concerning features than Bertolotti syndrome and usually clinicians would go by most concerning and clinically relevant findings. The Trust said it did not feel Mrs S missed any treatment opportunities as ongoing pain management is the main treatment of choice for Bertolotti.
Minor scoliosis
20. Our radiologist adviser says on the scan from 2016, there is a mild scoliosis and this is reported by the reporting radiographer. Cobb angle is a measurement of the degree of side-to-side spinal curvature, which is a deformity known as scoliosis. It is measured by the Cobb angle on plain radiographs. Scoliosis is defined as a Cobb angle of >10°. The higher the Cobb angle, the more severe the scoliosis is, and this affects the treatment options. On Mrs S’s scan, the Cobb angle is 11 degrees so this is very minor.
21. Our radiologist adviser says mild scoliosis is of questionable clinical significance for Mrs S as curves less than 30 degrees as an adult do not progress and are therefore not likely to need treatment.
22. In large cohort studies of patients with scoliosis, there is increased back pain incidence compared to controls, but these studies all considered patients with curvatures over 30 degrees (Weinstein 2003) and as such the symptoms of mild scoliosis has not definitively been reported.
23. Our orthopaedics adviser said the presence of the incidental finding should have been communicated to Mrs S. This is reflected by GMC guidance which says:
‘The exchange of information between medical professionals and patients is central to good decision making. You must give patients the information they want or need in a way they can understand. This includes information about: • their condition(s), likely progression, and any uncertainties about diagnosis and prognosis • the options for treating or managing the condition(s), including the option to take no action.’
24. Our radiologist adviser says the fact that the scoliosis was commented on in the X-ray report is accurate but it is appropriate that the Trust did not clinically act upon or treat this.
25. Our orthopaedics adviser explained that the minor scoliosis did not need any treatment and was not the most likely cause of her symptoms. Because of this, we do not consider the lack of communication had any clinical impact on her. But we do accept finding out about this later has caused her significant worry.
Bertolotti syndrome
26. Our radiologist adviser says Bertolotti syndrome is a clinical diagnosis and is controversial. It describes the combination of low back pain and the presence of a transitional lumbosacral vertebra (a kind of anatomical variant at the junction between the lumbar spine and sacrum which is common – observed in around 12% of the population of which over half have some kind of joint between the L5 vertebra and sacrum) as seen in Mrs S’s case. It is seen as controversial as clinicians and radiologists differ on their opinions on the significance of the transitional area of the spine and its connection to low back pain.
27. Our radiologist adviser reviewed the MRI scans. They explained that the absence of any degenerative change or inflammation of the transitional vertebra or the adjacent vertebra is reassuring. They said in their experience, most radiologists would either report this as a lumbosacral transitional vertebra (spinal change where the lowest vertebra of the low back is not usually connected to the sacrum) or ignore it as a common anatomical variant.
28. Our radiologist adviser explained the diagnosis of Bertolotti syndrome is usually made by a clinician. This is because they need to review the images as well as consider the presenting symptoms of the patient. A radiologist would ordinarily comment on what is shown on the scan rather than comment on the actual diagnosis.
29. Our orthopaedic adviser says initial treatment for Bertolotti would be non-operative with pain control, physiotherapy and injections which were arranged for Mrs S in this case. She had features of sacro-iliac pain in addition to low back pain so it is difficult to conclude that all the pain was related to the transitional vertebra (Bertolotti syndrome).
30. The National Library of Medicine says:
‘The incidence of transitional vertebra has a reported incidence between 4 and 36%; however, Bertolotti’s Syndrome is only diagnosed when the cause of pain is attributed to this transitional anatomy. Therefore, the actual incidence is difficult to determine.
Initial management with conservative treatment includes medical management and physical therapy. Injection therapy has been established as an effective second line.’
31. Our orthopaedics adviser says the clinician should have mentioned to Mrs S that the suspicion of pain in the lower back could be related to this syndrome but the treatment would have been the same as was already arranged for her.
32. Based on all of the evidence available, the Trust should have told Mrs S about the minor scoliosis and transitional lumbosacral vertebra (Bertolotti syndrome) in line with GMC guidance.
33. As Mrs S’s scoliosis is very minor it would not have been treated. Because of this we can reassure her she has not missed out on any clinical care.
34. Regarding Bertolotti syndrome, we are unable to say with any certainty that this is related to the back pain Mrs S has experienced. As this was a possibility, the doctor should have discussed this with her. However, we have reviewed the guidance which recommends relevant treatments and can see Mrs S has received all of these for her back pain. Mrs S has not therefore missed out on any clinical care or treatment as a result of not being told about the possibility of Bertolotti.
Ankle treatment
35. For the next part of this complaint, we have looked at whether there are signs the organisation has got something wrong. We do this by comparing what should have happened with what did happen. We have done this and have not found any indications that something has gone wrong.
36. Mrs S says she does not feel she has been adequately treated for her ankle pain and says she should have been referred for physiotherapy due to her ongoing issues. Mrs S referred to NICE guidance for tendinopathy which says if pain is still present after 7-10 days, a referral should be made to a physiotherapist.
37. The Trust said Mrs S’s ankle pain was not acute as it had been ongoing for many years, so needed different management. It said she did not require physiotherapy.
38. The Trust said the consultant used their clinical judgement and offered injections as a first line treatment.
39. In its final response to the complaint, the Trust offered to arrange an ultrasound scan of her right ankle and a follow up appointment.
40. The records show at the first rheumatology appointment in May 2016, the problems with the feet and ankles were recorded as achilles tendonitis and pes planus (flat feet).
41. Mrs S had been taking Adalimumab (Humira) since 2016 but said she decided not to continue taking this due to cancer risk and she did not feel the benefits outweighed the risks.
42. In 2017 the rheumatologist assessment refers to no swellings or tenderness in the ankles and records pes planus. The rheumatologists referred Mrs S to Orthotics for insoles and anti-inflammatory medication was prescribed. The records from 2018 say that the orthotics had improved her symptoms. The rheumatologists also referred Mrs S to physiotherapy for her back issues.
43. In May 2022 Mrs S reported a flare up of symptoms in her back and ankles and the records indicate that anti-inflammatory medication was helping the symptoms.
44. The examination in 2022 records inflammation around the ankle joint and an ultrasound examination was arranged. The ultrasound scan confirmed Mrs S had inflammation around her ankle joint and the tendons around her ankle.
45. NICE guidance 65 published February 2017 provides guidance on spondyloarthritis in over 16’s including diagnosis and management. Spondyloarthritis is the term for a group of inflammatory diseases that cause joint inflammation, or arthritis. The Trust said Mrs S had evidence of Spondyloarthritis and was being treated for this. The guidance says:
‘Offer NSAIDs (Non-steroidal anti-inflammatory drugs) at the lowest effective dose to people with pain associated with axial spondyloarthritis.’
46. The guidance also says:
‘Adalimumab, certolizumab pegol, etanercept, golimumab and infliximab are recommended, as options for treating severe active ankylosing spondylitis in adults whose disease has responded inadequately to, or who cannot tolerate, NSAIDs.’
47. The Trust acted in line with this guidance as it provided Mrs S with NSAIDs. It also provided Mrs S with Adalimumab also known as Humira (biological medicine used to reduce inflammation).
48. The NICE guidance also says to ensure that there is communication and coordination between rheumatology and other relevant specialities. The Trust acted in line with this guidance as rheumatology referred Mrs S to Orthotics for pes planus to receive insoles.
49. The rheumatology team looking after Mrs S were not looking at or treating one joint/ her back in isolation. They were managing the complex symptoms and issues of everything knowing that a flare up of one region will impact and affect another. Also, when providing the treatment available, this aims to cover all of the affected joints not just one specific area.
50. Considering all of the evidence available, the Trust followed NICE guidance which recommends interventions that includes anti-inflammatory medication, biological therapies, physiotherapy, and allied health care input (including orthotics). Mrs S was offered most of these interventions during the period we are investigating, and after the ultrasound scan was done, an injection of steroid to help with the symptoms.
51. We agree that Mrs S’s ankle pain was not acute as her medical records show this had been ongoing for several years. We cannot say that the Trust not offering physiotherapy specifically for her ankle is a failing. The Trust was treating a number of joints/areas that Mrs S was reporting pain in rather than individually.
Mixed information on condition and medication
52. Mrs S says she was given immunosuppressants for inflammatory arthritis. However, she has since been told her pain is mechanical, and so she is concerned this was not the correct treatment.
53. The Trust said Mrs S had inflammatory arthritis in the past so she was started on biologic treatment according to guideline recommendations. Biological therapy is a type of treatment that stimulates or restores the body’s natural immune system to fight infection and disease. It is commonly used to treat various cancers and other conditions. Immunosuppressants are biological therapies and in this case, the immunosuppressant the Trust provided was Adalimumab (Humira).
54. The records show Mrs S was reporting a lot of pain at night during sleep but that this was responding to anti-inflammatory medications. She also experienced a lot of stiffness in the morning and it generally improved with movement and worsened with rest. Our rheumatology adviser said these symptoms support that it was an inflammatory condition.
55. Mrs S also has pes planus which is flat feet. This condition is purely mechanical (occurs due to damage in or around the structures of joints). Therefore, it is clear Mrs S has been experiencing both inflammatory and mechanical pain.
56. Our rheumatology adviser said inflammation normally gets better with activity and can reduce pain but mechanical can get worse with activity and increase pain so there are conflicts.
57. Our rheumatology adviser says Mrs S’s history from clinic letters including the referral letters was consistent with inflammatory back pain, and the referral letter refers to findings around sacroiliac joints consistent with sacroiliitis (inflammation of one or both of the immovable joints formed by the bones of the pelvis called sacrum and the ilium).
58. In line with NICE guidance for spondyloarthritis, the appropriate treatment includes biological therapies, physiotherapy and anti inflammatories, all of which were offered to Mrs S. This confirms that it was correct for the Trust to be providing Mrs S with the immunosuppressant Adalimumab.
59. With the evidence available it appears Mrs S has been given the correct information about her condition during this period and it was in line with NICE guidance for her to be receiving immunosuppressant treatment.
60. In her complaint to us Mrs S remains concerned she was given conflicting information. The information she was given was correct as her pain is both inflammatory and mechanical but it appears how she was told has not met her needs. She has not understood that the two issues exist at the same time and clinicians were right to explore different treatment options. We hope this information clarifies that she has been treated appropriately in line with relevant guidance.
61. We have identified an indication of failing as the communication generally appears to be poor. We can reassure Mrs S that the information the Trust gave her was correct and she has received the correct treatment. Our investigation clarifies the information was correct, therefore, remedies any injustice from Mrs S not knowing what was correct. We hope this information is reassuring to Mrs S and provides some clarity.