Follow up appointment
31. Miss C complains following a series of injections at the Trust, the last in July 2021, it did not invite her for a follow up appointment three months later when it should have done.
32. The Trust has acknowledged it said it would arrange this but did not. Therefore, this is an indicated failing in relation to the arranging of the appointment itself.
33. NICE: ‘Age-related macular degeneration’ explains how both wet AMD (a long-lasting eye disorder that causes blurred vision or a blind spot in the central vision), and non-AMD CNV should be monitored. It says:
• ‘1.7.1 Do not routinely monitor people with early AMD or late AMD (dry) through hospital eye services.
• 1.7.2 Advise people with late AMD (dry), or people with AMD who have been discharged from hospital eye services to: • self-monitor their AMD • consult their eye-care professional as soon as possible if their vision changes • continue to attend routine sight-tests with their community optometrist.
• 1.7.3 For people being monitored for late AMD (wet inactive) review both eyes at their monitoring appointments’.
34. Our adviser commented although Miss C had myopic CNV, the management of this condition is similar to AMD, and these guidelines also apply. They also explained when a patient’s condition is stable, the approach is to observe and monitor this, as the above NICE guidance explains.
35. While the appointment did not take place, there is no evidence of Miss C raising concerns about her symptoms until she experienced distorted vision in December 2022. This suggests she had not suffered any symptoms until then, so it is reasonable to say her condition was stable. On this basis, our adviser said, from a clinical perspective, Miss C did not need the appointment.
36. It remains the case that the Trust did not do what it had agreed to do. Miss C has told us the Trust not arranging the appointment caused her distress.
37. Our Principles for Remedy say, ‘where maladministration or poor service 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.’
38. They also say appropriate remedies will include ‘an apology, explanation, and acknowledgement of responsibility…and remedial action, which may include reviewing or changing a decision on the service given to an individual complainant; revising published material; revising procedures to prevent the same thing happening again; training or supervising staff; or any combination of these’.
39. The Trust apologised ‘unreservedly’ for not scheduling a further follow up appointment in October 2021 as it should have.
40. It said it had now revised its procedures to ensure such errors did not happen again to other patients. Specifically, it had since employed what it called ‘failsafe officers’. It explained their role was to ensure that patients did not experience any adverse effects in obtaining appointments from delays, cancellations, or failure to follow these up.
41. We are pleased to see the Trust apologised for failing to arrange the appointment and has revised its procedures. We consider this is appropriate to address the distress its clerical issue caused to Miss C, in line with our Principles for Remedy. We therefore do not need to do anything further.
Eye clinic letters
42. We then looked at Miss C’s complaint that following her visits to the eye clinic on 23 and 28 December 2022 to see an ophthalmic consultant, she received letters which contained contradictory scan results and much medical jargon. Therefore, the letters were difficult for her to understand.
43. The Trust said there was no evidence of a bleed on the first appointment, but there was on the second.
44. It added it expected the consultant would discuss any complex or unclear information at a subsequent outpatient appointment. It said the consultant had allowed extra time for this at the appointment of 20 January.
45. On 23 December Miss C’s clinical notes recorded there was a distortion in her sight in her left eye, but there were ‘no new bleeds’. It recommended an ‘urgent FFA…to rule out myopic CNV’.
46. The letter summarising this appointment explained the scan showed ‘no recent bleed or fluid’ and the ophthalmic consultant had ‘arranged an urgent fundus fluorescein angiography to rule out any myopic choroidal neovascularisation’.
47. Miss C reattended on 28 December. The notes recorded there was a ‘haemorrhage’ (bleeding in or around the eye) and the plan was to review her in its FFA clinic.
48. The letter relating to this appointment explained her left eye showed ‘a macular haemorrhage’. It explained it would review her in the FFA clinic in the coming week as planned.
49. NICE: ‘Patient experience in adult NHS services: improving the experience of care for people using adult NHS services’ explains how medical practitioners should provide information to patients. It says all information ‘should be clear, consistent and based on the best available evidence’.
50. Our adviser explained, based on each ophthalmic consultant’s observations, the letters are accurate and represent the different findings at each separate attendance.
51. Therefore, although they included different information, there is no indication they were contradictory, and they summarised both consultants’ findings in line with the above section of NICE guidance.
52. The same NICE guidance also says letters should be ‘if possible, written using everyday language that you understand’.
53. BMJ: ‘Writing outpatient letters to patients’ specifically explains how medical practitioners should write outpatient letters.
54. It quotes the Academy of Medical Royal Colleges, Letters to Patients, which says the letter ‘serves three main functions:
• To record relevant facts about the patient’s health and wellbeing • To present information in a way that aids understanding • To communicate a management plan to the patient and GP'.
These aims are best achieved by a letter that is well-structured, informative and easy to read and engaging in style’.
55. The letters the Trust wrote to Miss C include some quite complex medical terms. Therefore, we are not reassured the Trust wrote them using everyday language to help Miss C understand her condition, which indicates a failing. This caused her anxiety and distress.
56. The Trust explained the intention was for the ophthalmic consultant to discuss any complex or unclear information with Miss C at the appointment of 20 January. The Trust added this would have addressed any concerns she had.
57. This appointment would have been an opportunity for Miss C to have asked any questions she had, thereby resolving any uncertainty the letters caused.
58. The Trust also said given Miss C’s experience, ‘the ophthalmology team are now exploring the possibility of providing a ‘what happens next’ patient leaflet, which will clarify treatment pathways’.
59. We are pleased to see the Trust apologised to Miss C and is looking into revising its leaflet. We consider this is appropriate to address Miss C’s distress in line with our Principles for Remedy.
The appointment of 20 January 2023
60. Moving to Miss C’s complaint that when she saw another ophthalmic consultant at the Trust on 20 January 2023, they were unhelpful as they did not answer her questions. She also feels they were unprofessional and lacked empathy.
61. As there does not appear to be any record of what happened during the consultation, it is difficult for us to comment on exactly what happened. Miss C was clearly unhappy and explained what happened caused her distress.
62. GMC: ‘Good Medical Practice’, ‘Domain 3: Communication, partnership and teamwork’ explains how medical practitioners should communicate with patients. It says ‘You must be polite and considerate’ and ‘You must work in partnership with patients, sharing with them the information they will need to make decisions about their care.’
63. The Trust advised it had discussed Miss C’s concerns with its consultant. It said they were ‘saddened’ Miss C had perceived them as dismissive, uncaring, and unprofessional. It emphasised this was certainly not their intention.
64. The Trust also added the consultant had discussed the incident with their line manager and they would do so again at their annual appraisal. It expressed confidence the consultant would ‘learn from this experience’.
65. We consider the Trust has taken this matter seriously and the consultant has reflected on what happened and apologised. This is appropriate and in line with our Principles for Remedy. We do not consider it needs to do anything further.
Diagnosis and treatment
66. Next, Miss C complains a week after her appointment with the Trust, a private ophthalmic consultant diagnosed her with macular degeneration. She feels the Trust’s consultant should have made this diagnosis given the results of her scan.
67. Following the FFA scan of 4 January, the ophthalmic consultant’s letter explained it ‘showed left macular window defects due to myopic degeneration’, but there was ‘no confirmed myopic choroidal neovascularisation’.
68. NICE: ‘Age-related macular degeneration’ explains how ophthalmic consultants should diagnose the condition and when they should make a referral.
69. Specifically, for late AMD (wet active) macular degeneration, it says:
• ‘1.4.6 Make an urgent referral for people with suspected late AMD (wet active) to a macula service, whether or not they report any visual impairment. The referral should normally be made within 1 working day but does not need emergency referral.
• 1.4.7 Offer optical coherence tomography (OCT; a noninvasive imaging method used to create detailed pictures of the back of the eye, specifically the retina) to people with suspected late AMD (wet active) • 1.4.9 Offer FFA to people with suspected late AMD (wet active) to confirm the diagnosis if OCT does not exclude neovascular disease (when new blood vessels grow, these may leak and cause vision loss) • 1.4.10 For eyes with confirmed late AMD (wet active) for which antiangiogenic treatment (a method of treating cancer which aims to abolish the nutrient and oxygen supply to the tumour cells through the decrease of the vascular network and the avoidance of new blood vessels formation) is recommended, offer treatment as soon as possible (within 14 days of referral to the macular service)’.
70. The RCOphth: ‘AMD Commissioning Guidance’, ‘Age Related Macular Degeneration Services: Recommendations’, Section 8 Care pathway’ explains:
‘8.4.2 Patient suspected with nAMD (wet AMD) must be directly referred within one working day to an NHS commissioned specialist AMD service, if suspicion is high’, ‘If diagnosis is uncertain in an eye with suspected nAMD, the patient can be referred to primary care/community eye service or diagnostic hub with OCT facilities within one day’ and ‘Whichever route is followed the time from suspicion to treatment must be no longer than two weeks’.
71. Following the appointment on 20 January, the ophthalmic consultant’s letter of 27 January explained it had ‘reassured her that there are no haemorrhages’, ‘no macular leakage’ and ‘no intraretinal fluid’. It recommended they see her again in six months.
72. The Trust said as the results of the scans carried out at the two appointments were different, a change in Miss C’s condition had occurred between the two appointments.
73. It added the results of her scans were inconclusive and there were differing opinions on her diagnosis among its consultants.
74. The private ophthalmic consultant noted Miss C was ‘becoming increasingly symptomatic in the left eye with distortion and flashes. There was thickening at the macula and the OCT scan showed a cyst of fluid over what looked like CNVM (Choroidal neovascular membrane, involves the development of new, abnormal, leaking blood vessels in the retina) and thickened retinal layers with fluid above it. This is consistent with active leakage’.
75. Miss C first experienced symptoms in December 2022 and an ophthalmic consultant first assessed her on 23 December. At that time, the Trust requested an urgent FFA scan, which was in line with the NICE guidance referred to earlier.
76. Our adviser explained the FFA scan of 4 January showed some leakage, which was consistent with the findings of the OCT scan on 26 January.
77. Ophthalmic consultants should normally see and treat a patient suffering from macular degeneration within two weeks, as explained in the above NICE and RCOphth guidance.
78. However, the Trust did not treat her until 31 January, nearly four weeks after the onset of symptoms and the first OCT scan, when the Trust arranged a further intravitreal injection.
79. Given this, there is an indication of a delay of just under two weeks.
80. We note the treatment Miss C underwent did resolve her symptoms. She explained that following a further intravitreal injection on 31 January, she now feels fine and the ophthalmology department has discharged her.
81. Therefore, although there appears to have been a slight delay in her treatment, this did not result in any significant visual impairment or permanent damage. We recognise the delay in receiving treatment caused Miss C distress.
82. We therefore asked whether the Trust would apologise to Miss C for the distress the delay caused. It has agreed to do so.
Sharing of medical records
83. Miss C complains the Trust’s consultant shared her medical records with a private consultant without her consent.
84. The Trust said as both its consultant and the private consultant were involved in her treatment for the same condition and were discussing a potential misdiagnosis, ‘they had a legitimate professional relationship’. Therefore, it did not consider this an information governance breach.
85. NICE: ‘Patient experience in adult NHS services: improving the experience of care for people using adult NHS services’, February 2012 explains how and when different practitioners can share a patient’s medical records.
86. It says ‘Continuity and consistency of care and establishing trusting, empathetic and reliable relationships with competent and insightful healthcare professionals is key to patients receiving effective, appropriate care. Relevant information should be shared between professionals and across healthcare boundaries to support high-quality care’.
87. The Trust has explained why it shared Miss C’s records, which was in line with NICE guidance. Therefore, we have not seen any indications of failings.
Complaint handling
88. Miss C complains the Trust handled her complaint poorly as it did not answer all the issues she had raised and there was a significant delay before it provided a response.
89. In relation to covering all aspects of a complaint, our NHS Complaint Standards say effective complaint handling systems are ‘thorough and fair when looking into complaints’, they should ‘set out what happened and whether mistakes were made’, ‘fairly reflect the experiences of everyone involved’ and ‘clearly set out how the organisation is accountable’.
90. In her complaint letter of 21 January 2023, Miss C raised a number of issues. We understand Miss C may not agree it did so fully, but we have seen evidence the Trust’s responses addressed all her concerns. This was in line with the NHS Complaint Standards.
91. In relation to the time it takes for an organisation to respond, the Local Authority Social Services and National Health Service: ‘Complaints (England) Regulations’ explain how an organisation should handle complaints.
92. They say ‘A responsible body to which a complaint is made must investigate the complaint in a manner appropriate to resolve it speedily and efficiently’. They also say a responsible body must respond within ‘6 months commencing on the day on which the complaint was received, or such longer period as may be agreed before the expiry of that period by the complainant and the responsible body’.
93. Miss C first complained to the Trust on 21 January 2023. It provided written responses dated 7 June 2023 and then 9 August 2023, which means it took around four and a half months for it to provide its first response and a further two months to provide a second response.
94. The first response was within the period of time set out in the NHS Complaints Regulations and, following Miss C raising further issues, there was no delay in providing the second.
95. As a result, we cannot say the Trust took unduly long to respond to Miss C’s complaint.
96. Therefore, we have found no indication of a failing as the Trust appears to have responded in line with NHS Complaint Standards and Regulations.
97. We recognise this has been a difficult experience for Miss C. We are sorry to hear this was the case and we do not underestimate the impact these events have had on her.
98. For the reasons we have explained, we will not be taking any further action. We hope we have explained our decision clearly.