Referral from Trust B
23. Mr G complains the Trust did not complete an urgent neurology assessment, as requested by his specialist consultant (Neurologist B) on 28 December 2023. In his complaint to the Trust, Mr G explained he could have been having a TIA, but the Trust’s on-call neurologist refused to see him.
24. In its response, the Trust explained that Neurologist B spoke to its on-call registrar, and that its on-call consultant neurologist then considered the referral. It explained they, having reviewed Mr G’s health records and scans, decided he did not need an immediate appointment. Instead, they determined that as his recent MRI scan had been clear, his case should be discussed with his usual consultant, Neurologist A, when they returned from leave.
25. The Trust explained that it considered the actions taken by its on-call consultant to have been reasonable in the circumstances. It also said it trusted that if Mr G had been concerned his symptoms may have been caused by a TIA, he would have contacted either 111 or his local emergency department (ED).
26. A TIA is also referred to as a ‘mini stroke’ and is caused by a temporary disruption in the blood supply to part of the brain. The effects last between a few minutes and a few hours, and fully resolve within 24 hours.
27. The Trust did recognise its communication with Mr G could have been improved; it apologised for this and set up a new protocol for communication between Neurologist B and the Trust to always be consultant to consultant. The Trust has told us it has also applied this to all referrals across the Trust.
28. In considering whether the Trust provided good clinical care and treatment to Mr G when it received the referral from Neurologist B, we have used the Ombudsman’s Clinical Standard. This directs us to consider a range of evidence including the clinical records, the relevant standards and guidance, the account of the complainant, and the accounts of the clinicians/organisations complained about.
29. In deciding whether a clinical standard was relevant to the situation complained about, we will consider whether it was applicable to the treatment the person received. We also ask the clinician/organisation to tell us whether they followed or departed from standards, and why. In reaching a decision about whether there has been good clinical care and treatment, we will consider the explanations of those complained about and balance them against the relevant standards or guidance.
30. Trust B’s records show Neurologist B completed a telephone consultation with Mr G on the morning of 28 December 2023. During this consultation, Mr G reported new onset symptoms of spinning and double vision. Neurologist B’s clinic letter states that, due to Mr G’s named neurologist being on leave, they discussed this with the Trust’s on-call registrar. The letter states the registrar informed Neurologist B that Mr G’s MRI from 6 December showed no changes, but that they would arrange an urgent local assessment.
31. We reviewed Mr G’s records from the Trust, and these contain no record of the telephone consultation or the Trust’s on-call consultant neurologist’s consideration of the referral.
32. We consider that this is a failing. GMC Good Medical Practice, paragraph 21b, says clinical records should include the decisions made and actions agreed. The only clear record of these decisions is within the complaint file. Our neurology adviser confirmed the Trust should have recorded these considerations and decisions in Mr G’s clinical records.
33. Our neurology adviser considered Mr G’s clinical records, and the information Neurologist B gave to the Trust on 28 December. They explained that Mr G was at high risk of a stroke because of his complex medical history, including previous microscopic brain bleeds, polycythaemia and current diabetes. Polycythaemia is an increase of red blood cells in the body. The extra cells cause the blood to be thicker, and this, in turn, increases the risk of other health issues, such as blood clots.
34. Our adviser gave their view that, considering the new symptoms (sudden onset dizziness and double vision) Mr G had reported and the above risk factors, the Trust should have recognised the risk of a stroke and directed Mr G to his nearest emergency stroke unit, or seen him in person as an emergency. They pointed to NICE guidelines NG127 and NG128, which state that:
• people who have had a suspected TIA should be seen for specialist assessment within 24 hours • clinicians should immediately refer adults who experience severe dizziness or a spinning sensation (acute vestibular syndrome), in line with local stroke pathways • patients with sudden-onset dizziness and a focal neurological deficit such as new-onset vision difficulties or unsteadiness if the person has diabetes should be checked and treated for hypoglycaemia. If the person does not have diabetes, or treating hypoglycaemia does not resolve the symptoms, refer immediately to exclude posterior circulation stroke.
35. They also referred to the National Clinical Guideline for Stroke, which says that any person with fully resolved new and sudden neurological symptoms, that might be due to a condition affecting blood flow to the brain, needs urgent specialist assessment. It says this is needed to establish the diagnosis and determine whether the cause is relating to blood vessels and blood flow.
36. In line with the Ombudsman’s Clinical Standard, we considered the Trust’s explanations of the treatment it provided to Mr G and why, considering the above guidelines, its consultant initially decided he did not need to be seen until his pre-arranged appointment on 11 January.
37. The Trust explained that its on-call neurologist was fully aware of the guidelines and made a carefully reasoned clinical judgement based on the information available to them.
38. The Trust’s on-call consultant neurologist explained they considered that Mr G has a complex neurological history, and that his symptoms more likely represented a relapse of his neurosarcoidosis or a vascular complaint. They explained they decided that, had there been a vascular event, it could wait to recover and be reviewed in clinic. This is because three days on from symptom onset there would be no acute intervention available. They explained this timeframe and the ongoing symptoms suggested Mr G had not experienced a TIA.
39. Lastly, the Trust explained the National Clinical Guideline for Stroke does not contain any specific guidance within it for managing a complex clinical scenario in a patient with a known neurological condition which may have a relapsing and remitting nature. It pointed out that section 1.2 of the guideline states:
‘No clinical guideline can account for every eventuality, and recommendations should be taken as statements that inform and guide the clinician, the patient and any other user, and not as rigid rules. The clinician remains responsible for interpreting the recommendations taking into account the circumstances at hand…and including competing priorities for the patient and co-morbidities such as frailty, and for considering whether new evidence might exist that could alter the recommendation.
40. Section 1.2 also says that ‘In doing so, clinicians should consider…significance when applying the evidence to the person in front of them: statistical significance (is the evidence valid?), clinical significance (does the evidence apply to this clinical situation?) and personal significance (does the evidence apply to this person’s particular circumstances and priorities?..) Clinicians can reasonably expect guidelines to be unambiguous about the first and to give guidance about the second, but the third level of significance can only be understood within the relationship between the treating clinician and their patient, and may provide the justification for deviations from recommended management in particular cases.’
41. We asked our Lead Clinicians to consider the clinical advice we have received, as well the Trust’s explanation as to why its neurologist did not arrange immediate assessment or direct Mr G to emergency stroke services.
42. Our Lead Clinicians noted, as we have above, that the Trust neurologist’s rationale for the way they handled the referral was not recorded at the time of events. They explained that just because Mr G was later found not to have had a stroke, it does not necessarily follow that the neurologist’s judgement at the time was correct.
43. They felt that the Trust could have handled the referral differently and likely missed an opportunity to consider an alternative route for care and treatment, including diagnosis other than neurosarcoidosis, and secondary preventative measures.
44. However, they noted that the neurologist had exercised their clinical judgement, and that a plan was in place to see Mr G on 11 January. They explained the clinical justifications for the neurologist’s actions appear to have good grounds and involve a good application of clinical rationale (that take into account the specifics of Mr G’s presentation and his background medical history). They also agreed that Mr G had not experienced a TIA by definition, as his symptoms had lasted more than 24 hours.
45. In deciding whether the Trust met the Ombudsman’s Clinical Standard we have carefully balanced the advice we received and the relevant standards against the Trust’s explanation.
46. The Trust’s neurologist did not record the above rationale at the time they decided Mr G could wait to be seen on 11 January. They did not record why they did not arrange immediate assessment, or why they felt the complexities of his presentation did not indicate this.
47. It is also clear from the advice we received that there was an opportunity for the neurologist to ensure the Trust saw Mr G immediately in line with NICE guidance, or to advise him to attend emergency stroke services. This would have allowed them, or other clinicians, to consider the possibility of other vascular events (other than a TIA). Our Lead Clinicians explained that the basic principles of the NICE guidance should not be disregarded simply because the patient presents later than the timeframe for a TIA.
48. However, considering the balance of all of the available evidence, we do not feel the neurologist’s decision not to arrange immediate assessment falls so far short of the Ombudsman’s Clinical Standard as to be a failing, or to constitute a failure to provide good clinical care and treatment.
49. Although our neurology adviser felt that the stroke pathway should have been followed, it appears the neurologist made a clinical judgement not to do so that was well-supported and appropriate considering Mr G’s clinical history and that there was a plan in place to review him.
50. The National Clinical Guideline for Stroke explains that guidelines are not rigid rules and that the clinician remains responsible for considering the situation at hand and whether the guidance applies to the patient’s particular circumstances. In this case, it appears that the Trust’s neurologist did so and, although they could have arranged for a same-day assessment and considered other vascular events, they appropriately exercised their clinical judgement by deciding Mr G could wait to be reviewed.
51. We recognise the Trust’s clinical decision gave Mr G cause for concern as he expected to be seen immediately.
52. It also appears Neurologist B expected Mr G to be seen immediately. Both he and Neurologist B called the Trust the next day to ask for updates and that he be seen urgently. The on-call registrar’s investigation statement (taken during the complaints process) says, ‘[They were] quite unhappy on the phone and demanded to speak with the consultant.’
53. Neurologist B then emailed the Trust. In their email they stated they thought Mr G needed a ‘review to clarify the signs and plan reinvestigation including MR brain with gad and CSF analysis, plus consideration of diagnoses other than sarcoidosis.’
54. Our neurology adviser explained that Neurologist B was more familiar with Mr G’s complex medical history than the Trust’s consultant.
55. Following Neurologist B’s subsequent call and email, the Trust’s on-call neurologist arranged to review Mr G in person the next day.
56. We feel this shows the Trust’s neurologist acted in line with GMC guidance (paragraph 35), which states that doctors must work collaboratively with colleagues, respecting their skills and contributions.
57. The change in decision does not necessarily mean their original clinical judgement was flawed, only that they respected the further contribution of Neurologist B once issues with communication (detailed below) had been cleared. We feel the change in plan was a good example of collaborative working.
Shared care-communication
58. Although we do not feel the Trust neurologist’s initial clinical decision was a failing, our view is that there was a failing in the Trust’s communication with both Trust B’s neurologist and Mr G around the referral and its urgency.
59. Mr G being under shared care between the Trusts was a complicating factor in his treatment. This made it especially important that communication about his care was clear. Our ‘Principles of Good Administration’ state that organisations should communicate effectively.
60. It is clear from the above events that both Mr G and Neurologist B expected him to be seen immediately following the referral on 28 December and the request he be seen urgently.
61. However, the Trust has explained to us that it typically considers ‘urgent’ to mean within six weeks.
62. There is no clear evidence to suggest that the on-call registrar explained this to Neurologist B on 28 December. On balance if they had, considering Neurologist B’s subsequent call and email, it is likely Neurologist B would have challenged this during the call.
63. We feel that the Trust’s failure to explain this falls so far short of our Principles as to be a failing.
64. We do not know for certain what would have happened if the Trust had given Neurologist B information about the likely timescales. However, it seems likely that this would have led to the Trust assessing Mr G sooner. As set out above, it acted promptly to arrange a next day appointment when Neurologist B called and emailed back to chase the referral.
65. We can also see from the complaint file that the Trust did not inform Mr G of its initial decision to see him at the 11 January outpatient appointment. We consider this falls so short of GMC guidance paragraph 32, which says that doctors must give patients the information they want or need to know in a way they can understand, as to be a failing.
66. We consider the impact of the Trust’s communication below.
Impact on treatment for acute relapse of neurosarcoidosis
67. Mr G says due to the nature of his condition it is important all emergent symptoms are investigated at the time to establish the cause and treatment plan. As it did not assess him as requested, he says the Trust caused him to lose the opportunity for a better outcome.
68. He explained it was important there was clear evidence of active sarcoid to demonstrate his current treatment was not working and enable identification of a better treatment.
69. As above, we consider it likely that if the Trust’s communication had been better, it could have reviewed Mr G on 28 December instead of 30 December. This represents a potential two-day delay in assessment.
70. We have considered whether this is likely to have had an impact on Mr G’s treatment for acute relapse of neurosarcoidosis.
71. An acute relapse of neurosarcoidosis refers to a sudden worsening of symptoms. This could include existing symptoms becoming more severe, or new symptoms appearing.
72. NHSE Infliximab guidance states oral corticosteroids are the first line therapy for patients with significant symptoms. Oral corticosteroids are a type of medication taken by mouth in the form of tablets or liquid. They are used to treat various conditions, particularly those involving inflammation, the immune system, or hormonal imbalances.
73. We can see from Mr G’s records that his new onset symptoms, a spinning sensation and double vision, had resolved by 30 December 2023. The records also show that when the Trust examined Mr G on 30 December, he did not present with any new signs or disabilities.
74. We understand from our neuroimmunology adviser that, had the Trust assessed Mr G on 28 December while he was still experiencing troubling symptoms, it may have treated him with high dose corticosteroids. However, they went on to explain there would have been reasonable grounds for caution as steroids can potentially exacerbate diabetes, which Mr G has.
75. Our adviser explained the Trust could have chosen one of four options if it had assessed him whilst his symptoms were still active: to give steroids (assuming that symptoms were due to neurosarcoidosis); request an outpatient MRI and lumbar puncture; arrange an urgent MRI; or arrange an urgent MRI and lumbar puncture.
76. We understand from our adviser that, based on Mr G’s records, these all would have been reasonable decisions to make. This is because neurosarcoidosis is a rare disorder and there are no national guidelines for its management. NHSE infliximab guidance refers only to which treatments to give as first line therapy but does not provide specific guidance on when to give these
77. Mr G informed us that approximately a year after this episode he had another neurological event, at which time Neurologist A was available to assess and treat him. Mr G says Neurologist A immediately treated him with steroids, which were an effective treatment for his symptoms. Mr G says this demonstrates the Trust’s actions caused him to lose an opportunity for treatment.
78. Whilst we recognise Mr G’s viewpoint, Neurologist A was not available on 28 December, and given the rarity and complexity of neurosarcoidosis, we cannot say another assessing clinician would have made the same decision. Additionally, even if Neurologist A had been available on that day, we cannot say for certain that they would have made the decision to prescribe steroids at that time.
79. It is therefore not possible for us to determine whether the Trust would have chosen to prescribe Mr G with high dose steroids or whether it would have chosen to request further assessments, while monitoring Mr G’s condition.
80. Additionally, the records show that Mr G’s new onset symptoms resolved themselves within two days of Neurologist B’s referral. Our adviser explained, had the Trust given Mr G high dose steroids on 28 December, the best that could be expected would be a return to his baseline level of function in the next few days.
81. Therefore, it appears that even had the Trust given Mr G high dose steroids on 28 December, his outcome would not have improved further. Overall, it is our view that the Trust’s actions did not impact on Mr G’s short term health outcomes in relation to his acute relapse of neurosarcoidosis.
Impact on maintenance treatment for neurosarcoidosis
82. Maintenance treatment for neurosarcoidosis refers to ongoing therapy aimed at controlling the disease over the long term and preventing flare-ups or relapses after an acute episode.
83. The NHSE Infliximab guidance explains it has been used in the treatment of neurosarcoidosis that does not respond to first-or-second-line treatments. It states Infliximab will be available as a treatment option through routine commissioning within the criteria it sets out.
84. The criteria state that prior to Infliximab being commenced the patient should be treated with high dose oral steroids and immunosuppression for three months. The patient should be monitored closely during this period and after three months the patient should have a repeat MRI. If the patient is worse or their symptoms are unchanged clinicians should add Infliximab.
85. As above, Mr G believes the Trust missed an opportunity to identify the cause of his symptoms and find a better treatment. He explained to us this is because they missed the opportunity to find clear evidence of active sarcoid while his new symptoms were active. He says this would have shown his current treatment was not working and enable identification of a better treatment.
86. The Trust records show no changes to Mr G’s MRI scan results between 6 December 2023 and 25 January 2024. Our adviser explained that typically the changes in neurosarcoidosis appear over days, last for weeks or months and leave some visible scarring.
87. Therefore, given Mr G developed symptoms on 25 December 2023 any changes on his MRI would still have been visible on 24 January 2024. Our neuroimmunology adviser confirmed no changes were visible and his MRIs showed no structural damage.
88. We can see from the Trust records that it diagnosed Mr G’s symptoms as being caused by a neurosarcoidosis relapse from a lumbar puncture it performed on 23 February, which showed abnormal cerebrospinal fluid (CSF) results. CSF is a clear, colourless liquid that surrounds the brain and spinal cord. Testing the CSF can provide critical information about the presence of infections, inflammation, or other conditions affecting the central nervous system.
89. We understand from our neuroimmunology adviser that the fact that Mr G’s CSF was abnormal in the presence of an unchanged MRI means that the sarcoid was affecting either an area of the brain too small to be seen on an MRI, or it was affecting the meninges (surface covering of the brain), which would also be invisible on an MRI.
90. Therefore, our view is the Trust’s actions on 28 December did not lead to it missing the opportunity to find clear evidence of active sarcoid. This likely would not have been found even if he had been seen that day.
91. We next considered whether the Trust’s actions caused any delays in providing Mr G with improved treatment options.
92. Trust B’s records show Mr G reported new symptoms to Neurologist B on 28 December 2023. The Trust’s records evidence that on 4 January, Neurologist A ordered an urgent MRI scan (as advised by Neurologist B) and referred Mr G to a Trust haematologist due to abnormal blood test results. The haematologist recommended tests to assess for Polycythaemia rubra vera (PRV). PRV is a myeloproliferative disorder, which means the bone marrow makes too many blood cells.
93. Neurologist A completed an in-person clinic assessment on 11 January 2024, after which they requested Mr G’s general practitioner (GP) complete an ECG, as the Trust had not completed one when it assessed Mr G on 30 December.
94. They also wrote to a Trust Medicine and Elderly Care consultant who had previously advised on Mr G’s care for further advice regarding Mr G’s hyperthyroidism, and whether they should commence treatment for this given his presenting symptoms. Hyperthyroidism is where the thyroid gland produces too much of the thyroid hormones and causes the body cells work faster than normal.
95. The Trust completed the MRI scan on 25 January 2024, which showed no changes. Therefore, on 26 January Neurologist B requested a lumber puncture for Mr G, to determine if his neurosarcoidosis was active. The Trust completed this on 23 February.
96. On 30 January, Neurologist A also took further actions in response to their previously made referrals. They ordered a pituitary MRI, as the Medicine and Elderly Care consultant had advised Mr G’s hyperthyroidism was likely pituitary related. The pituitary gland produces hormones that regulate many critical functions in the body, including growth, metabolism, and reproduction.
97. Neurologist A also advised Mr G to be commenced on thyroxine and his testosterone injections be stopped. Thyroxine is a hormone produced by the thyroid gland that plays a key role in regulating the body's metabolism, energy levels, and growth.
98. This was in response to advice the endocrinologist had provided in response to Neurologist A’s referral to haematology (specialists in blood disorders). Endocrinologists specialise in treating thyroid and pituitary conditions.
99. On 28 February, in response to Mr G’s lumbar puncture showing active neurosarcoidosis, Neurologist A wrote to Neurologist B to inform them that as per their advice, they had increased Mr G’s mycophenolate dose. Mycophenolate is a medication used to suppress the immune system.
100. Neurologist A also informed Neurologist B that Mr G’s pituitary MRI was normal but further assessments were pending for possible causes of polycythaemia as his haemoglobin remained elevated despite having stopped his testosterone treatment.
101. Our neuroimmunology adviser explained the Trust’s investigations and assessments were necessary to establish Mr G’s symptoms were caused by a relapse of neurosarcoidosis despite being on medication designed to prevent such a recurrence. They explained this evidence was required to determine that Mr G’s maintenance treatment was insufficient.
102. On 12 March, the Trust discussed Mr G’s case at the National Neuroinflammatory MDT. The MDT recommended the Trust prescribe Mr G Infliximab, as out of all the treatments he had previously had, Infliximab suited him best. Mr G had agreed to Infliximab treatment prior to the MDT, if that was its recommendation.
103. The Trust therefore arranged a further MRI scan for 4 April 2024, three months after Mr G’s previous scan (as per NHSE Infliximab guidance timelines).
104. Overall, the records show that the Trust’s decision to recommend a change to Mr G’s maintenance drugs took several months to arrive at. This is because the decision involved multiple assessments, investigations and outpatient appointments, as well as a national MDT.
105. We understand from our neuroimmunology adviser that this is a common timeline for changes in neurosarcoidosis maintenance treatment, and that this is due to the rarity and complexity of the condition. They explained this timeline would likely not have changed had the Trust seen Mr G on 28 December, rather than the 30 December due to the need for outpatient investigations to take place.
106. Furthermore, NHSE Infliximab guidance requires a monitoring period of three months, and a repeat MRI. Therefore, the Trust would not have been able to prescribe Infliximab earlier as the Trust was required to monitor Mr G for three months prior to prescribing.
107. Overall, our view is the Trust’s actions on 28 December did not cause any delays in it providing Mr G with improved treatment options, nor did they cause any long-term impact on Mr G’s health.
Emotional impact
108. Although we found the Trust’s actions did not have a clinical impact on Mr G, we consider that they did have an emotional impact.
109. In his complaint to both us and the Trust, Mr G explains the Trust’s actions have had a significant negative impact on him. He explained they left him feeling vulnerable, scared and without any support, until Neurologist A returned to the Trust on 2 January 2024.
110. Mr G explained to us that Neurologist A has cared for him with dedication and skill for the ten years he has been his patient. However, he now does not know who to turn to when Neurologist A is unavailable. This is because the Trust’s actions on 28 December have caused him to lose confidence in it, leaving him feeling stressed and confused.
111. As our neuroimmunology adviser explained, neurosarcoidosis is a rare and complex condition.
112. The Trust records show Mr G was diagnosed with neurosarcoidosis in 2018, and whilst treatment led to some improvement in symptoms, he unfortunately developed steroid induced diabetes following this treatment.
113. Despite treatment he continued to suffer with symptoms of neurosarcoidosis. The primary purpose of the maintenance treatment being to prevent further symptoms developing. Mr G also has multiple co-morbidities, adding additional complexity to his care.
114. Mr G suffered his first relapse in September 2020, followed by the second relapse in December 2023.
115. The complaints records show Mr G contacted the Trust’s neurology admin team immediately after Neurologist B told him they were referring him to the Trust for urgent assessment. We can see that at this point he would have been experiencing high levels of anxiety about the need to access expert care and assessment urgently.
116. The complaints records show Mr G contacted the Trust multiple times over two days, before the Trust responded to him. He told us this caused him a lot of worry and left him feeling unsupported.
117. The evidence shows Mr G has a complex medical history, including a history of relapse, and that Neurologist B had informed both him, and the Trust he required urgent assessment, with their understanding of this to mean immediate assessment.
118. Given this evidence, it is our view that the Trust’s initial decision not to offer Mr G an immediate assessment, and its lack of communication with Mr G regarding this, is likely to have led to Mr G feeling vulnerable, scared and unsupported.
119. Overall, our view is the Trust’s actions caused Mr G distress between 28 December 2023, when Neurologist B made their urgent referral, and Neurologist A’s return on 2 January 2024.
120. Mr G told us the actions of the Trust have caused him to question who he can rely on for care if his usual neurologist is unavailable. We can see this has caused him a level of ongoing stress and confusion, especially considering the seriousness of his condition. We can see the Trust has taken steps to prevent this happening again by improving consultant to consultant communication.
Complaint handling
121. Mr G also complains about the Trust’s complaint handling. He complains the Trust did not follow the complaints procedure correctly, did not interview the on-call consultant involved before providing a stage one response, did not have an allocated complaints lead, and lacked candour when providing its response.
122. The Trust provided Mr G with a stage one and stage two response, as well as holding a local resolution meeting (LRM). Two members of the Trust’s senior leadership attended the LRM to attempt to resolve Mr G’s complaint with him. Mr G remained unhappy after the LRM and escalated his complaint to the Chair of the Trust.
123. NHS complaints standards, ‘being thorough and fair’ says organisations should follow their local complaints procedure, which sets out the steps staff are expected to take in handling a complaint.
124. The Chair found the Trust had taken Mr G’s complaint through all the relevant stages and recognised senior Trust staff had dedicated a lot of time to trying to resolve Mr G’s complaint. However, the Chair did uphold Mr G’s complaint that the Trust did not follow its own policy, as it did not appoint a clinical lead.
125. The Trust explained to us that Mr G’s complaint presented a unique situation with exceptional circumstances. It acknowledged that it acted outside of the usual complaints procedure by allocating a senior leader as complaint lead.
126. The Trust explained they felt this level of oversight was needed to protect staff wellbeing due to a high and challenging level of contact from Mr G. Mr G explained he felt the stage one and stage two responses were inaccurate and so he had to make multiple contacts to the Trust.
127. Additionally, we can see from the complaint file that Mr G requested the complaint not be handled by PALS, a request the Trust complied with by allocating the complaint to a senior leader.
128. We understand the Trust’s reasons for acting outside of its usual processes and recognise the efforts its senior leadership went to.
129. Therefore, while we agree with the Chair’s finding that the Trust did not follow its own policy and appoint an independent clinical lead, it is our view that this does not fall so far short of the expected standard as to constitute a failing.
130. NHS complaint standards, ‘being thorough and fair’ says staff should look for ways they can resolve complaints at the earliest opportunity.
131. It also says, ‘When a complaint does not suit early resolution and needs more detailed consideration and investigation, this is done fairly. Where possible, staff who have not been involved in the issues complained about should look at the complaint.’
132. We can see from the complaint documentation that the Trust acted quickly on Mr G’s concerns, providing him with a stage one response in under two weeks. We recognise this is in line with the NHS complaint standard to resolve complaints at the earliest opportunity and that the Trust complaints team believed it had sufficient information to do so.
133. However, Mr G’s complaint was complex. It involved interactions between multiple clinicians, including one at a separate Trust and was concerning assessment and treatment for a rare and complex medical condition. Additionally, it concerned future treatment as well as past treatment, as the situation that led to Mr G’s complaint (his usual Trust neurologist being on leave) could reasonably be expected to reoccur.
134. For these reasons, it is our view the Trust should have recognised that although on the surface Mr G’s complaint may have appeared straightforward, it was actually a complex complaint that did not suit early resolution. Therefore, it should have followed the complaint standards for a more detailed consideration and investigation.
135. NHS complaint standards, ‘giving fair and accountable responses,’ says each account should compare what happened with what should have happened, clearly referencing any relevant legislation, standards, policies or guidance, based on objective criteria. It also says staff should give a clear, balanced account of what happened based on established facts.
136. The complaint standards also state organisations should support and encourage staff to be open and honest when things have gone wrong or where improvements can be made. Staff should recognise the need to be accountable for their actions and to identify what learning can be taken from a complaint.
137. The Trust complaint file shows prior to issuing a stage two complaint response the Trust collected statements from the registrar and on-call consultant involved in Mr G’s care. Neither of these accounts compare what happened with what should have happened. Nor do they use objective criteria to clearly reference any relevant legislation, standards, policies or guidance.
138. We cannot see any evidence the Trust complaints team returned to either clinician to ask them to do so. Nor can we see any evidence the Trust complaints team compared what happened with what should have happened, or considered any legislation, standards, policies or guidance. This does not appear to be in line with the NHS complaint standards, ‘giving fair and accountable responses.’
139. Additionally, there is no evidence the Trust considered the registrar’s statement that Neurologist B was unhappy with the Trust’s decision not to accept their referral, nor is this reflected in the stage two response. This is not in line with the requirement for staff to give a clear, balanced account of what happened based on established facts.
140. The Trust’s stage two response included the information its consultant and registrar gave in their investigation statements, as well as further information from a second consultant. However, it lacks detail in its explanation of why the Trust initially triaged Neurologist B’s referral as being suitable for assessment at Mr G’s outpatient appointment on 11 January. It also does not take accountability for the potential failings in communication we have seen with Trust B.
141. Our view is the Trust complaints team should have encouraged staff to compare their actions with guidelines and identify any points where their actions differed from the relevant guidelines.
142. This would have been in line with NHS complaint standards ‘giving fair and accountable responses’ and would likely have enabled the Trust to identify that its staff had not kept records in line with GMC guidelines.
143. In the Trust’s LRM, it identified a learning and improvement point regarding referrals. This was that in future Neurologist B should contact a consultant directly should they wish to make a referral. The Trust has informed us this learning has now been implemented Trust wide for all referrals where the referring consultant requests to speak with a Trust consultant.
144. The Trust’s stage two response included the information its consultant, and registrar gave in their investigation statements, as well as further information from a second consultant. However, it lacks detail in its explanation of why the Trust initially triaged Neurologist B’s referral as being suitable for assessment at Mr G’s outpatient appointment on 11 January. The response also does not take accountability for the potential failings in communication we have seen with Trust B.
145. This addresses an aspect of the communication issues identified by both us and the Trust. However, although the Trust’s stage two response does not directly blame Neurologist B ‘with no blame whatsoever apportioned to [Neurologist B]’, its identified actions are for Neurologist B, not for itself. It also does not acknowledge or identify that its own communication with Trust B could have been improved.
146. This does not appear to be in line with NHS complaint standards, ‘giving fair and accountable responses,’ as the Trust response does not recognise the need to be accountable for its actions.
147. We recognise staff throughout the Trust dedicated time and effort, acting outside of normal working hours, to resolve the clinical concern within Mr G’s complaint. This included the involvement of very senior staff, who would not normally be directly involved in individual care or complaint handling. It is clear the Trust wanted to resolve issues promptly.
148. This contributed to the Trust overturning its initial decision to assess Mr G at his outpatient appointment on 11 January. This along with the on-call neurologist’s consideration of Neurologist B’s further contact, led it to assess Mr G on 30 December, two days after Neurologist B made their referral.
149. We also recognise the Trust apologised to Mr G about its communication and acknowledged it should have told Mr G that Neurologist B’s plan was not being enacted and explained why. The Trust wrote to Mr G recognising he is a vulnerable patient who did not have a good experience. It apologised that this lack of communication was distressing to Mr G.
150. We have not seen any evidence the Trust’s response was deliberately misleading. This is because the evidence indicates the Trust’s complaint response was an honest reflection of the information it had available at the time.
151. However, it is our view that in its attempts to ensure a swift resolution, the Trust’s complaint handling was not in line with NHS complaint standards as it did not adhere to the guidelines regarding ‘Being thorough and fair’ or those regarding ‘Giving fair and accountable responses.’
Impact
152. Mr G says the Trust’s complaint handling caused him frustration and significant distress. It also caused him to lose faith in the Trust as its response lacked candour.
153. As we saw in our clinical considerations, Mr G has a complex medical condition, requiring ongoing care from the Trust, with expert input from Trust B. Therefore, the outcome of Mr G’s complaint was of great significance to him as it impacted on his future care.
154. Given Neurologist B is a neurosarcoidosis specialist and had informed Mr G that he needed an urgent assessment, it is reasonable to believe that the Trust’s lack of clear explanations regarding its decision making would lead Mr G to feel frustrated and distressed.
155. This is because he needed to feel he could rely on the Trust to co-ordinate his care effectively with Neurologist B in the future, and to make decisions which were in his best interest. Without a clear, evidence-based explanation of its actions on 28 December, Mr G was unable to put his trust in its future actions.
156. Our view is that had the Trust followed NHS complaint standards when conducting its investigation, it would have likely identified areas of learning and future actions it could take at an earlier point. This in turn may have prevented Mr G from experiencing the level of frustration and distress that he has, as the Trust would have been able to reassure him regarding his future care.