Hypermobility clinic 26 January 2017
27. Ms D says when she attended the Trust’s hypermobility clinic on 26 January 2017, rheumatologist 1 did not appropriately investigate her neck and shoulder pain before discharging her. She says they did not even physically examine her. She says she went to rheumatologist 1 expecting expert advice but feels she has been failed massively. She also says, if hypermobility was the only cause for her pain, surely, she should not have been discharged from the hypermobility clinic. Ms D said that in rheumatologist1’s report following the consultation, dated 16 February 2017, ‘there was a normal arch to the palate’. Ms D says she has a full dental plate, which she was not asked to remove, so rheumatologist 1 could not have known whether she had a normal arch to the palate. Ms D also says rheumatologist 1 told her she would have occupational therapy provided, but this never happened.
28. The Trust says at this appointment, rheumatologist 1 had carried out blood tests, which included a full blood count, inflammatory markers, and vitamin D levels. Ms D’s vitamin D levels were low, so rheumatologist 1 wrote to Ms D’s GP to ask them to prescribe vitamin D supplements. This is because a low level of vitamin D can be a cause of pain. Rheumatologist 1 also requested MRI scans of Ms D’s knee and spine.
29. The relevant guidance here is the General Medical Council (GMC) Good Medical Practice. Section 15 says in providing a good standard of practice and care, (a doctor) must:
a) ‘adequately assess the patient’s condition, taking account of their history (including the symptoms and psychological, spiritual, social, and cultural factors), their views and values; where necessary, examine the patient.
b) promptly provide or arrange suitable advice, investigations, or treatment where necessary
c) refer a patient to another practitioner when this serves the patient’s needs’.
30. Our adviser said, as a referral to a hypermobility clinic, it would be expected that the focus of the consultation would be about a diagnosis of hypermobility. This would include reviewing Ms D’s symptoms, noting them in the clinical history, and identifying what therapies might help her.
31. Our adviser said there was no reason to physically examine Ms D’s neck and shoulders. Doing so would not have added any value but could have been painful for her. Her symptoms were noted in the clinical history and the right thing to do was to refer Ms D for an MRI scan of her spine to investigate further, which was done. Rheumatologist 1 also ordered blood tests to screen for other rheumatological conditions. Ms D was also rightly referred for physiotherapy. In accordance with the GMC guidance above, there is nothing more or different the Trust should have done at the time.
32. With reference to Ms D’s complaint that rheumatologist 1 could not have seen whether she had a normal arch to the palate, our adviser said there was no reason to examine Ms D’s palate to assess her hypermobility, which is what the appointment was for. It may be that rheumatologist 1 was ruling out signs and features of a condition called Marfans syndrome (an inherited disorder that affects connective tissue). Patients with this condition often have a very high arch palate, but this is not mentioned in the notes. It is not therefore possible to know whether rheumatologist 1 simply missed the dental plate or decided not to pursue this further. Either way it is irrelevant to Ms D’s treatment, as she does not have Marfan’s syndrome and so an examination of her palate was not relevant or required. The treatment for hypermobility is physiotherapy, and Ms D was referred for this. The assessment was in line with GMC Good Medical Practice (Domain 1: Knowledge skills and performance) which says a doctor should ‘adequately assess the patient’s conditions, taking account of their history (including the symptoms and psychological, spiritual, social and cultural factors), their views and values; where necessary, examine the patient.’ We are satisfied that rheumatologist 1’s assessment of Ms D is in line with this.
33. In relation to whether Ms D was referred for occupational therapy, we can see that in rheumatologist 1’s letter to Ms D’s GP on 16 February 2017, it does refer to physiotherapy and occupational therapy. However, our adviser said, rather than two separate referrals, it is usual for a referral to go to the physiotherapy team, who will assess the patient and then involve occupational therapy if they think it might help. That is, occupational therapy is not mandated. Its purpose is to help patients with functionality and day-to-day living with their condition and symptoms. As such, physiotherapy and occupational therapy teams work very closely together and occupational therapy input would have followed if the physiotherapists thought it was appropriate. Again, this is in line with the GMC guidance above, which says clinicians should promptly provide or arrange suitable advice, investigations, or treatment where necessary refer a patient to another practitioner when this serves the patient’s needs. Had the physiotherapist thought occupational therapy would help Ms D, they would have discussed this with her.
34. Although Ms D was discharged, despite her hypermobility being the cause of her pain, our adviser said this was the right course of action. They said there was nothing further rheumatologist 1 should have done, because the purpose of the hypermobility clinic is not to provide ongoing long-term treatment and follow up in the clinic. It is primarily for diagnostic and advice purposes.
35. Overall, we are satisfied that rheumatologist 1’s actions at the hypermobility clinic appointment on 17 January 2017, were all in line with the relevant guidance. We are sorry that Ms D has experienced pain and discomfort, and we hope our thorough review of the care she received during this appointment has reassured her. We have not found any failings on the part of the Trust in relation to this clinic appointment.
Communicating the results of knee scans
36. Ms D says at the appointment with rheumatologist 1 on 17 January 2017, she had to repeatedly ask them to look at the result of a scan of her knee taken on 11 October 2016. She said it took 11 months before her scan was reviewed by the Trust. Ms D said she was told by her GP that the scan result would be ‘uploaded to the portal’ and her understanding was that the Trust’s rheumatologist would have access to it.
37. In its complaint response, dated 2 May 2019, the Trust acknowledged it had not reviewed and reported this scan result to Ms D until 24 November 2017. It said this was because the scan was requested by Ms D’s GP and rheumatologist 1 was not, and would not, have been aware of this scan until Ms D told her on 26 January 2017. It said they were unable to comment on scans which had been arranged through Ms D’s GP.
38. We asked our adviser what should have happened in a situation such as this. They referred us to the relevant guidance on the way test results, including MRI scans, should be managed. Guidance by the Royal College of Radiologists provides recommended standards. Standard 5 says: ‘It is the responsibility of the requesting doctor and/or their clinical team to read and act upon the report findings and fail-safe alerts as quickly and efficiently as possible.’
39. The Care Quality Commission also provides guidance on managing test results and clinical correspondence specifically for GPs. This says:
‘Managing test results in general practice can be complex. It:
• involves nearly every member of the practice team
• relies on practice systems and outside providers
• must communicate results to the patient in a timely and clinically appropriate manner’.
40. It also says that failure to follow up test results can seriously affect patient care, including delays to diagnosis and effective treatment’.
41. Our adviser says in this case, Ms D’s scan, which we can see was requested by her GP, was not carried out by the Trust, but by a contractor which provides medical services to the NHS, including scans. It takes referrals from various sources, in this case from Ms D’s GP. Our adviser says the reporting of the scan, and any follow ups, would have been the responsibility of the clinician requesting it, in this case the GP. It was not the Trust’s responsibility to locate the scan result and report back to Ms D on it. Although rheumatologist 1 did try to help locate the scan and it was eventually made accessible to them, this was over and above what they were obliged to do and not within their normal remit.
42. On 17 January 2017, following the hypermobility clinic appointment, rheumatologist 1 had requested another scan of Ms D’s knee which took place on 6 February 2017. They then wrote to Ms D’s GP on 16 February 2017, reporting the outcome. This letter said Ms D had joint hypermobility EDS (Ehlers-Danlos Syndrome), which is an inherited disorder that affects connective tissues, resulting from a defect in collagen production. It said Ms D had now been discharged from the hypermobility clinic, but they would be happy to see her in the future should the need arise. It also said she had been referred to physiotherapy and occupational therapy for advice regarding core stability exercises and specific work for her right knee.
43. On 20 September 2017, rheumatologist 1 wrote to Ms D to say they had requested the imaging of her knee from October 2016 to be imported to them, but there was only an X-ray on file. This letter said that a review of the X-ray did not demonstrate any abnormality in the bone of the joints. Rheumatologist 1 offered to refer Ms D for physiotherapy.
44. Ms D obtained a copy of the 11 October 2016 scan report from her GP. She sent a duplicate copy of this to rheumatologist 1, who requested that the scan images be imported on to the radiology system at the Trust. This was so it could be viewed and discussed at its rheumatology/radiology multidisciplinary (MDT) meeting on 7 November 2017.
45. Rheumatologist 1 wrote to Ms D on 13 November 2017 to say that following the MDT meeting, based on the 11 October 2016 scan, they had concluded there was no underlying arthritis or damage. Ms D’s symptoms were likely to be related to her underlying hypermobility. At this MDT the Trust had also discussed the scan of Ms D’s knee taken on 17 March 2017, and they had concluded there had been no worsening or change in the findings since the scan taken on 11 October 2016.
46. Rheumatologist 1 spoke with Ms D on 24 November 2017 to explain the outcome of the MDT meeting. Ms D said she thought she should be seen by the Trust’s orthopaedic team as she was still in pain with her knee. Rheumatologist 1 said they would arrange a repeat MRI scan first to see if orthopaedic input was needed, and this took place on 6 February 2018.
47. Rheumatologist 1 wrote to Ms D on 29 March 2018, to say her 6 February knee scan result had been discussed on 27 March 2018 at its rheumatology/radiology meeting. They said the outcome of this was that there had been no changes in Ms D’s knee, suggesting a primary inflammatory arthritis such as rheumatoid arthritis. This letter said there was a very small Baker’s cyst (a fluid-filled swelling at the back of the knee) which had also been seen on the 11 October 2016 scan. In addition, the radiologist had commented that there were some sub-chondral cysts (sacs filled with fluid that form inside of joints) posteriorly (behind the knee) and some small osteo-chondral lesions (tears or fractures in the cartilage covering one of the bones in a joint). This letter concluded by saying there appeared to be no worsening or change in the findings since the 11 October 2016 scan. Rheumatologist 1 ended the letter by saying, as Ms D still suffered pain in her knee, they were referring her for an orthopaedic assessment.
48. To conclude, the responsibility to act on or inform Ms D about her scan result lay with the GP. We can see that the external company, who did the scan, did write to Ms D’s GP on 11 October 2016 with the results of the scan. Although it took until November 2017 to report back to Ms D on the results of her 11 October 2016 scan, this was not the fault of the Trust. The scan had been carried out at the request of Ms D’s GP and it was not the Trust’s responsibility to action the results of that scan and report its results back to Ms D. The Trust carried out its own scan on 6 February 2017 and reported this back to Ms D on 29 March 2017.
49. The Trust did not cause any delay and cannot be held responsible for the reporting of Ms D’s 11 October 2016 scan result. It did take this scan into account by comparing it with the more recent scan it had taken, and it reported its findings back to Ms D in a timely manner. We do recognise that Ms D did wait a long time to learn about the results of this scan, which must have been very frustrating for her. We have not seen any evidence the Trust acted outside of its responsibilities. Therefore, we have not found any failings in relation to the Trust’s part in the reporting of Ms D’s knee scans.
Knee scans - interpretation of the results
50. Ms D has said she feels rheumatologist 1 has misinterpreted the radiologist’s reports of knee scans taken on 11 October 2016 and 6 February 2017, by telling her that her pain was all down to her hypermobility and required no further treatment other than physiotherapy. She says rheumatologist 1 failed to report the full findings accurately which delayed her treatment and resulted in her knee becoming much worse and more unstable.
51. The Trust said, while it is not responsible for reporting on the 11 October 2016 knee scan, a review of the investigations had been done. They had been reviewed by rheumatologist 1 and the rheumatology/radiology team and they had found no significant change where any treatment would be needed. It said the radiology department reported that the scan ruled out any underlying arthritis or damage and it is likely Ms D’s symptoms related to her underlying mobility.
52. It is the radiologist that is responsible for interpreting MRI scan images, not the requesting doctor. Then, it is also the requesting doctor who is responsible for communicating the results back to the patient.
53. As described by the Royal College of Radiologist (RCA), in its ‘standards for the communication of radiological reports and fail-safe alert notification’:
· ‘Standard two: It is the responsibility of the radiologist to produce reports as quickly and efficiently as possible, and to flag reports when they feel a fail-safe alert is required (critical and urgent findings or significant, important, unexpected, and actionable findings).
· Standard five: it is the responsibility of the requesting doctor and/or their clinical team to read and act upon the report findings and any fail-safe alerts as quickly and efficiently as possible’.
54. The requesting doctor therefore relays and communicates the content of the radiology report, already interpreted from MRI images, by the radiographer. As discussed above at paragraphs 39-53, here, responsibility for communicating the result of the 11 October 2016 radiology report would have been the requesting clinician, in this case Ms D’s GP. The scan taken on 6 February was requested by rheumatologist 1 and so it was their responsibility to relay and explain the radiologist’s report to Ms D. It was not therefore for rheumatologist 1 to interpret the scan, as the interpretation had already been done by the radiographer. It is the requesting doctor’s role to summarise and explain the radiographer’s report to the patient, take any action needed, and answer any questions the patient may have.
55. GMC Good Medical Practice says, under, communicating information (paragraph 68 and 71):
a. ‘You must be honest and trustworthy in all your communication with patients and colleagues. This means you must make clear the limits of your knowledge and make reasonable checks to make sure any information you give is accurate’
b. ‘You must be honest and trustworthy when writing reports, and when completing or signing forms, reports and other documents’
c. ‘You must make sure that any documents you write or sign are not false or misleading’
d. ‘You must take reasonable steps to check the information is correct’
e. ‘You must not deliberately leave out relevant information’
56. Our adviser considered both radiology reports provided for these scans and said rheumatologist 1 had accurately based their explanations to Ms D on the reports provided by the radiologists. The later radiology report showed that nothing had significantly changed since Ms D’s previous scan. They said rheumatologist 1’s explanation of the scan reports, and the actions proposed, were all entirely appropriate and that their actions were in line with GMC guidance on communication.
57. Based on this advice, which is supported by the relevant guidance and clinical records, we have not found any failing in the Trust’s interpretation of Ms D’s knee scan reports.
58. Ms D says rheumatologist 1’s interpretation of her spinal scan, taken on 4 March 2017 cannot be right because her previous spinal scans had shown she had a very mild disc bulge and reduced space in one disc. She said she has had a degenerative disease for some years and had reduced disc space in at least five discs, as well as a prolapsed disc space that had been irritating her nerves. She also said previous scans had shown scoliosis (sideways curvature of the spine), plus some other forms of stenosis and damage, and root nerve compression in her neck. She said when she explained this to rheumatologist 1, they said it made no difference to her diagnosis or treatment. Ms D says she feels it should make a difference.
59. The Trust say the MRI scan taken on 4 March 2017 showed degenerative changes between discs L5 and L1 with no neural compromise (neural compromise is when the small openings between the bones in your spine narrow or tighten). On 12 May 2017, rheumatologist 1 wrote to Ms D’s GP advising of some deterioration but said this did not require intervention, other than physiotherapy, which had been arranged. This letter also said that on 4 April 2017, the Trust had referred Ms D to its orthopaedic team, requesting Ms D’s symptoms be reviewed to see if any intervention was needed.
60. We asked our adviser whether rheumatologist 1’s communication with Ms D, about the result of her 4 March spinal scan on 4 March 2017, was an accurate reflection of the radiology report. They said the point of a spinal scan is to determine whether a) the patient needs surgical intervention (such as removing a disc or spinal fusion) or b) their condition should be treated conservatively instead (with physiotherapy). The radiology report states there was no indication of urgent/surgical intervention at this time and conservative measures were appropriate. It is of course possible that the condition may deteriorate further after that, but it does not detract from the fact that was the right decision at the time and rheumatologist 1 accurately reported this back to Ms D. No further action was necessary here. Our adviser also said that previous scans of Ms D’s spine would have been irrelevant because the purpose is to get an up-to-date image of the condition as it is now and act on that appropriately, which rheumatologist 1 did. They said rheumatologist 1’s actions were in line with the GMC standards on communication referred to above.
61. Based on this advice, which is supported by the relevant clinical records, we are satisfied that there is no evidence of a failing on the Trust’s part in relation to the reporting or interpretation of Ms D’s spinal scan and we hope this provides Ms D with some reassurance.
Request for a second clinical opinion
62. On 8 August 2018, in her letter of complaint about rheumatologist 1, Ms D requested a second opinion from another of the Trust’s rheumatologists, rheumatologist 2 as under the NHS constitution she was entitled to a second opinion from someone else in the Trust. She was told by the Trust that rheumatologist 2 had provided an opinion and that they agreed with rheumatologist 1’s opinion.
63. The Trust said, in its letter dated 28 August 2018, rheumatologist 2 had looked at Ms D’s medical notes and the advice given by rheumatologist 1. It said, having reviewed the investigations, and the subsequent referral to orthopaedics, rheumatologist 2 did not feel there is anything else they could do. They said based on clinical need, there was no reason for them to see Ms D and she should continue to pursue the orthopaedic option.
64. Rheumatologist 2 has provided us with a statement which supports that this conversation with rheumatologist 1 took place, but there is no record of this conversation and no evidence of a formal second opinion documented in the records. We asked our adviser what should have happened here. They said although consulting a colleague informally would not have been unusual, it does not on itself constitute a formal second opinion for the patient.
65. Our adviser said in line with GMC Good Medical Practice document (Section 16d), Ms D was entitled to request a second opinion. This says, ‘In providing clinical care you must respect the patient’s right to seek a second opinion’. Our adviser says this can be from another clinician within the same Trust, or it can be from elsewhere. To obtain a completely independent opinion it would need to go to a different Trust altogether, so that the case is seen with fresh eyes.
66. Our adviser said, however, the best and usual way to facilitate this is to refer the patient back to their GP to make another referral elsewhere. It was not rheumatologist 1’s responsibility to find someone else from another Trust, and good practice would be to direct Ms D back to her GP to arrange this. We can see that on 27 November 2017, in a letter to Ms D’s GP, rheumatologist 1 did tell Ms D’s GP that, as they had told Ms D herself, they would be happy for her to seek a second opinion if she felt this was still required. Ms D was copied in on this letter, so she would have been aware that her GP had been told Ms D might be seeking this.
67. The Trust’s actions were in line with the Ombudsman’s Clinical Standard which says, ‘When we are considering complaints about clinical care and treatment, we consider whether there has been “good clinical care and treatment’. We aim to establish what would have been good clinical care and treatment in the situation complained about and to decide whether the care and treatment complained about fell short of that. In this case, the best and usual way to obtain a second opinion is to route this through a patient’s GP, which the Trust did. It is also in line with the Ombudsman’s Principles of Good Administration, which say: ‘Public bodies should always deal with people fairly and with respect. They should be prepared to listen to their customers and avoid being defensive when things go wrong’. By letting Ms D’s GP know that Ms D was seeking a second opinion, the Trust was acting in Ms D’s interest.
68. While Ms D feels the Trust may not have explained the process for a second opinion in a way that she could understand, we are satisfied that rheumatologist 1 did make Ms D, and her GP, aware of Ms D’s request for alternative opinions. We have not found any failings in relation to this aspect of the complaint.
Request for a referral to a London clinic
69. Ms D says when she asked for a referral to a hypermobility clinic in London, the Trust told her she would have to apply for funding for the referral.
70. The Trust said the approval for funding for a referral to this clinic would need to come from the Clinical Commissioning Group (CCG), based on a referral from Ms D’s GP. It said it would be happy to provide a supporting statement but could not make the referral.
71. We can see that in her complaint letter, dated 22 November 2017, Ms D did ask about a possible referral to the London clinic. However, our adviser said, again, this is not something a consultant in the Trust could usually arrange for her. This should have been facilitated through Ms D’s GP. The Trust did tell Ms D this in its complaint response and it said rheumatologist 1 had said they would be happy to provide a supporting letter should the CCG request one.
72. By directing Ms D back to her GP to facilitate a referral to the CCG, the Trust’s actions were in line with the Ombudsman’s Principles of Good Administration, which say, ‘Public bodies should give people information and, if appropriate, advice that is clear, accurate, complete, relevant and timely.’ These principles also say, ‘Where appropriate, they should deal with customers in a co-ordinated way with other providers to ensure their needs are met; and, if they are unable to help, refer them to any other sources of help’. We are satisfied that rheumatologist 1 did make Ms D and her GP aware of Ms D’s request for alternative opinions and options. We have not found any failings on the part of the Trust in relation to this aspect of the complaint.
Copy email not provided
73. Ms D called the PALS office on 22 November 2017 to make a complaint about rheumatologist 1. The PALS office emailed rheumatologist 1 with a list of Ms D’s concerns and they responded to this the same day. In a telephone call from the PALS office on 23 November 2017, to explain rheumatologist 1’s response, Ms D says she asked to be provided with a copy of the emailed response from rheumatologist 1 to the PALS office. Ms D said although the email had been read out to her on the phone by PALS staff, she would like to see the actual email for herself. She says the PALS staff member said they could not do this without rheumatologist 1’s permission, and that as they had arranged to call Ms D the following day, she should ask them about it herself then.
74. The Trust said on 22 November 2018, when Ms D spoke with a staff member in the PALS office, she had asked for a copy of rheumatologist 1’s response to her complaint. At this time, Ms D had also requested a call from them to discuss the situation with her. This phone call took place on 23 November 2018, and following this, the PALS staff member had wrongly assumed the matter had been resolved. The Trust apologised to Ms D for its mistake. The Trust has since said, in its complaint letter dated 28 August 2019, that because of the time that had since passed, rheumatologist 1 was unable to provide a copy or written transcript.
75. The Trust has also said, although rheumatologist 1 would not have known that PALS emails are stored on an archive system and so the email was, and is still, available. It has provided us with a copy of this email as part of our investigation and the Trust has said they are happy for us to share that with Ms D. A copy of this email has now been sent to Ms D.
76. We do believe the Trust should have done more at the time to check that Ms D’s request for a copy of rheumatologist 1’s email had been resolved. It is understandable that they would not have known that complaint correspondence can, and in this case was, archived separately.
77. It is clear that Ms D did ask for a copy of this email and her request was not fulfilled. She was not given a reason as to why this was not possible. Our Principles of Good Administration say: ‘Public bodies should do what they say they are going to do. If they make a commitment to do something, they should keep to it, or explain why they cannot’. This did not happen in this case, and this does amount to maladministration (fault) on the part of the Trust.
78. We recognise this administrative failing would have caused frustration for Ms D at the time. However, the Trust has apologised for this. When an NHS organisation has made an error in its administration, we use our severity of injustice scale to ensure the recommendations we make are consistent and transparent for everyone who uses our service. In this case, the Trust’s failing led to frustration for Ms D at the time.
79. The scale contains six different levels of injustice that a complaint could fall into, which increase in severity. A case will generally be what we consider to be a level one injustice if we consider the person affected has experienced a low impact injustice such as annoyance, frustration, worry or inconvenience, typically arising from a single (one-off) incidence of maladministration or service failure, where the effect on the person complaining is of short duration, and where there are no other adverse effects or ongoing wider impact.
80. We would not consider this example of maladministration to be a level two injustice as this is for cases which result in a degree of distress, inconvenience, or minor pain. This could also include instances where an injustice was more serious but only took place once or was of short duration. Based on what we have seen therefore, as this failing led to frustration which was experienced for a relatively short period, and Ms D has also been told about the content of the email, we have decided it falls into level one injustice.
81. We have also considered our Principles for Remedy. These say, ‘Where poor service or maladministration has led to injustice or hardship, public bodies should try to offer a remedy that returns the complainant to the position they would have been in otherwise’. It says a range of appropriate remedies includes ‘an apology, explanation, and acknowledgement of responsibility’.
82. We will usually consider an apology to be an appropriate remedy for cases that fall into level one injustice and in this instance, we feel an apology is sufficient by way of putting things right for Ms D. The Trust has apologised and given reasons for not providing Ms D with a copy of this email. They had also already read out the email to Ms D over the telephone.
83. We are very sorry to learn about what Ms D experienced. We do recognise that she has a condition which has a very negative impact on her day-to-day life, and we hope she is now receiving the care and treatment she needs to help her.