Diagnosis
14. 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. We have done this and have not seen any indications that something has gone wrong.
15. Dr V complains he had difficulty getting a clear diagnosis. He complains the Trust made him feel his condition was ‘all in his head.’
16. The Trust said Dr V was diagnosed with CRPS in 2018. It explained presentation of symptoms can fluctuate with different signs and symptoms presenting from day to day. It said when the consultant assessed him on 4 November 2021, they felt he did not meet the criteria of active CRPS but explained that this could change. The Trust said when Dr V attended a clinical examination on 22 June 2022, he did exhibit signs and symptoms of CRPS. The diagnosis was confirmed at this appointment.
17. The Trust apologised that Dr V felt his doctors were saying his condition was all in his head. It said chronic pain and CRPS management is through education, pain relief, physical rehabilitation and psychological intervention. It said it had referred Dr Davidson to the psychology team to support his pain management.
18. The RCP guidance on the diagnosis and management of CRPS sets out the diagnostic criteria. This is called the Budapest criteria:
• The patient has continuing pain which is out of proportion to the cause.
• The patient has at least one sign in two or more categories (set out below).
• The patient reports at least one symptom in three or more categories.
• No other diagnosis can better explain the signs and symptoms.
19. The categories are:
• sensory - feeling pain from things that wouldn’t normally hurt such as light touch, temperatures, or from an injury that feels worse than it should • vasomotor - problems with the blood flow in the affected area, the area might change colour, or the temperature might feel noticeably different • sudomotor/oedema - issues with sweating and swelling in the affected area that doesn’t go away • Motor/tropic - changes in movement or tissue in the affected area, trouble moving the area or changes in skin, hair or nails.
20. The guidance also states that where someone has had CRPS in the past but who does not currently meet the criteria, they can be diagnosed with CRPS – NOS (not otherwise specified).
21. Our adviser said the diagnostic criteria can be applied differently by different consultants, and diagnosis is based on the consultant’s clinical opinion.
22. The records show that Dr V’s GP diagnosed CRPS in 2018. Dr V had a telephone consultation with the Trust’s pain management service on 6 October 2021. This record notes his symptoms and medical history. The service adjusted his pain medication and arranged a face-to-face consultation.
23. The consultation was on 4 November. The records show Dr V questioned whether he had CRPS at this time. The consultant showed Dr V the Budapest criteria and explained he currently exhibited one or two signs so did not current meet the criteria, but that this could change.
24. On 19 May 2022 the consultant told him it was unlikely he had CRPS. Dr V questioned this and asked for a second opinion.
25. On 9 June Dr V attended a face-to-face consultation with the consultant and a senior physiotherapist. At this appointment they went through the CRPS diagnostic checklist. They also explained to Dr V that diagnosis can take several sessions as signs and symptoms can be intermittently present. At this appointment Dr V did meet the Budapest criteria for CRPS.
26. Our adviser said these consultations highlight that diagnosis is difficult and there is no ‘absolute boundary’ for this diagnosis.
27. We can see that the Trust discussed Dr V’s diagnosis with regards to the Budapest criteria as outlined in the guidance. On the occasions where he did not meet the criteria, the consultant explained this to him. On the occasion that he did meet the criteria this was also explained.
28. The evidence shows that CRPS can be difficult to diagnose and is based on clinical judgement as to whether the person meets the criteria. In Dr V’s case it appears that his symptoms changed over time, and sometimes met the criteria, but did not at other times. We can see the Trust followed the guidelines for diagnosing CRPS so cannot see any indication that the Trust did anything wrong here.
29. We can understand why Dr V felt the Trust was not being clear. We acknowledge how this made him feel like the Trust was saying it was in his head. We can understand how frustrating and worrying this would be.
Appointments, treatment and support
30. Dr V complains he never saw the consultant. He says he had difficulty arranging appointments and they were only every three to four months and via telephone. He feels this was not sufficient.
31. The Trust said the consultant always reviewed Dr Davidson’s symptoms and the treatment plan at each appointment. It detailed the advice given at each consultation.
32. Our Principles of Good Administration say organisations should provide effective services with appropriately trained and competent staff. Our adviser said there is no specific guidance on the frequency of reviews for CRPS, or what type of consultation should occur. While a consultant will not necessarily be physically present for each appointment, they take overall clinical responsibility for patient care.
33. We have not seen any indication in the records that the Trust refused Dr V appointments, or that appointments were particularly difficult to schedule. We can see Dr V had appointments with the pain management clinic every three to four months, via both telephone and face to face consultations.
34. Dr V had a telephone consultation with the Trust’s pain management service on 6 October 2021. Following this, the Trust arranged a face-to-face consultation with the consultant on 4 November. Dr V had an appointment with the psychologist in April, a further appointment with the consultant in May 2022, followed by a face-to-face consultation with the consultant and a physiotherapist on 9 June.
35. We understand that Dr V had concerns about how often he saw the consultant and the way his appointments were arranged. The evidence we have seen suggests he did have appointments with the consultant. We have also seen that although he did have some telephone appointments, he also had face-to-face appointments. We have also seen that these appointments were arranged regularly.
36. We appreciate the appointments may not have been as often as Dr V would have liked and he felt frustrated by this. We have seen no indication the Trust has failed to act in line with Our Principles of Good Administration.
37. Dr V complains the Trust did not give him any treatment and left him without support.
38. The Trust said the management of pain is not purely dictated by the diagnosis. It said the consultant offered continuous review, monitoring, and amendments to painkillers as appropriate. It also offered Dr Davidson access to psychological support. The Trust also said Dr V’s comorbidities, dizziness and history of falls limited the medications that could be used.
39. RCP guidance sets out a number of key points and recommendations about treatment, which are as follows.
40. Pain is usually the leading symptom of CRPS. The person can also have limb dysfunction and psychological distress, particularly in those with persistent pain. Loss of sleep can develop over time. There should be a multidisciplinary approach which aims to reduce pain, preserve function, manage the condition and improve quality of life.
41. There are four ‘pillars of care’ which include education, pain relief, rehabilitation and psychological intervention. Full recovery can be difficult to achieve even with appropriate treatment.
42. Patient information and education is important. The patient and doctor should agree on a treatment plan, and if there is a lack of progress this treatment plan should be reviewed.
43. There are no specific drugs licensed to treat CRPS in the UK, but drugs which improve neuropathic pain should be considered. Physiotherapists and/or occupational therapists should be involved in treatment.
44. NICE guidelines guidance on treatment for neuropathic pain says there should be regular clinical reviews which assess and monitor the effectiveness of treatment. Each review should assess pain control, impact on lifestyle and daily activities, physical and psychological wellbeing, adverse effects and continued need for treatment.
45. We can see in the records of Dr V’s appointments that the consultant discussed his medical history, and asked about his current pain, the effects of his medication and his wellbeing. The consultant arranged for regular reviews every three to four months.
46. NICE guidance on treatment for neuropathic pain states that healthcare professionals should offer a choice of amitriptyline, duloxetine, gabapentin, or pregabalin as the first treatment. If the first treatment is not effective or tolerated, healthcare professionals should try prescribing one of the other three drugs. They should switch medication again if the second or third options also are not effective or tolerated.
47. We can see in the records that Dr V was prescribed oromorph, codeine, gabapentin, pregabalin, nortriptyline and tramadol and nefopam. When he expressed concern about one type of pain relief, such as it made him drowsy or gave him hallucinations, the Trust altered the dose or prescribed another type of medication.
48. We acknowledge the RCP guidance does not specify which medication should be prescribed. It does recommend considering medication for neuropathic pain, and the NICE guidance sets out this treatment.
49. We can see the Trust prescribed both gabapentin and pregabalin, which appears in line with the NICE guidance. We can also see it considered several other pain relief options. When Dr V expressed concerns about his pain, the Trust reviewed his medication. This appears in line with the RCP guidance.
50. Another treatment which the RCP guidance on CRPS recommends is psychological intervention. We can see in the records that the Trust referred Dr V to a psychologist. Dr Davidson attended an appointment on 8 April 2022. He had another appointment scheduled for 24 April, but he did not attend and declined further appointments.
51. We understand Dr Davidson feels the treatment and support provided was not sufficient. As set out above, it appears the Trust followed the RCP guidance for treating CRPS. It provided pain relief and referred him for psychological support. When the treatment options were not working it made changes to his treatment as needed. We have seen no indication of a failing here. We appreciate Dr Davidson will be disappointed by our view here.
Complaint handling
52. Dr V is unhappy with how the Trust handled his complaint. He says the Trust refused to read his letters and submissions.
53. The Trust explained that it needed clear issues to respond to and found it difficult to identify these in the documents Dr V had sent. After months of trying to figure out the issues, the Trust agreed to meet with Dr V to finalise the issues he was complaining about.
54. NHS Complaint standards state that organisations must listen to complaints, understand the key issues, and recognise the outcomes the complainant is seeking.
55. We have seen that the Trust asked Dr V to rewrite his lengthy complaint letters to make the issues he was concerned out and the outcomes he was seeking clearer. It also suggested he use an advocate to help with this. When Dr V declined to use an advocate, the Trust arranged a meeting to discuss the complaint and clarify the issues.
56. For the Trust to respond properly, it is important it understood the main issues and what Dr V feels went wrong. From what we can see, the Trust took steps to try to understand the issues and outcomes, as required by NHS complaint standards.
57. We understand that this situation has been frustrating for Dr V, and we appreciate the effort he went to in order to raise his complaint. We have not seen any indication that the Trust did anything wrong by asking Dr V to clarify his complaint.