Clinician input
15. Dr O complains the Trust did not provide her with an endocrinologist or senior maternity consultant at her appointments as promised on 6 December and 13 December 2021. Dr O believes because of this, the Trust did not appropriately monitor her hyperprolactinaemia.
16. The Trust recognised an appropriate consultant did not meet with Dr O at either appointment as they should have and apologised for this. The Trust explained it has shared Dr O’s feedback with staff, and improved its processes and hired more staff to ensure other patients do not have similar experiences.
17. Dr O also complains the Trust did not book her 28-week appointment as it should have, so she had to chase this up herself and could not make one until 24 January.
18. The Trust did not address this aspect of the complaint directly and has answered a different question in both its response to Dr O and to us.
19. From the records we have seen, it is not clear who booked Dr O’s appointment on 24 January. We appreciate Dr O’s main concern here is she would not have had this appointment at all, had she not actively chased it up herself. We understand why Dr O believes this, but it would be difficult for us to say that definitely would be the case.
20. Irrespective of who booked it, Dr O did have an appointment with an endocrinology consultant on 24 January 2022, but did not in December 2021. We therefore need to focus our consideration on if an endocrinologist or senior maternity consultant should have attended Dr O’s appointments on 6 December and 13 December 2021, to ensure the Trust appropriately monitored her between 6 December 2021 and 24 January 2022.
21. NG121 provides guidance on intrapartum care for women with existing medical conditions or obstetric complications and their babies. Section 1.2 lays out what should generally happen. It says, ‘A multidisciplinary team led by a named healthcare professional should involve a pregnant woman with a medical condition in preparing an individualised plan for intrapartum care.’
22. On 6 August 2021, Dr O made the endocrinology department within the Trust aware she was pregnant, and asked how it would be monitoring her condition during her pregnancy. Dr O’s usual endocrinology consultant emailed the department back the same day, asking it to share a list of points with her. We cannot determine from the records if the department shared this with Dr O, or the Trust’s obstetricians.
23. Dr O’s midwife referred her for an endocrinology consultant appointment on14 September and she saw one on 11 October. Dr O then spoke with her usual endocrinology consultant on 15 November. During this conversation, it was confirmed she had a follow-up appointment scheduled for December.
24. Our obstetrics adviser told us they could not see evidence the Trust formulated a clear plan for Dr O’s care, with multidisciplinary input, as it should have.
25. The ESCP guideline says, ‘Because the risk of symptomatic tumor growth is so low, pregnant patients with microadenomas may be followed by clinical examination during each trimester.’
26. Dr O’s appointment on 24 January 2022 was at 30 weeks and three days and her appointment on 11 October 2021 was at 16 weeks and four days. The second trimester of a pregnancy is considered to be weeks 13 to 27 and the third is weeks 28 to 40. So, Dr O did receive an examination from an appropriately senior clinician in her second and third trimester. However, these appointments were 14 weeks apart. We have not seen in the records she had an examination from an endocrinologist or senior maternity consultant in her first trimester.
27. We also need to consider the Trust did first promise Dr O an appointment with an appropriately senior clinician on 6 December. This did not happen, and she did not receive an appointment until seven weeks afterwards.
28. The ESCP guideline says, ‘We recommend formal visual field assessment followed by MRI without gadolinium [used to make the images clearer during an MRI scan] in pregnant women with prolactinomas who experience severe headaches and/or visual field changes.’
29. Dr O’s records detail her complaining of headaches during the telephone consultation on 15 November. We recognise these are not described as being ‘severe’, but our endocrinology adviser told us an appropriately senior clinician should have seen Dr O to assess her headaches to decide whether an MRI scan was appropriate.
30. The notes from Dr O’s consultation that day seem to suggest the Trust will follow up on this in her December appointment. An endocrinologist or senior maternity consultant should have seen Dr O to do this in her appointments in December as promised, but they did not.
31. Our endocrinology adviser told us having considered the above, the interval between Dr O’s face-to-face consultations with an appropriately senior clinician was longer than ideal.
32. We understand how worrying it can be to be pregnant when you have a diagnosed health condition that can change during pregnancy. An endocrinologist or senior maternity consultant did not see Dr O in December, and so the Trust did not act in line with NG121 or the ESCP guideline. This is a failing.
Blood test
33. Dr O complains the Trust provided her with an inappropriate blood test on 13 December, and then did not tell her the results until she chased them up. This was a test to measure the level of prolactin in Dr O’s blood.
34. The Trust did not address sending Dr O for this blood test but acknowledged it did not share the results of it with her. The Trust explained it has taken learning from this.
35. There is an email in Dr O’s records from her usual endocrinology consultant which confirms there is no need to monitor her prolactin levels during her pregnancy, as these will naturally rise. The ESCP guideline says, ‘In pregnant patients with prolactinomas, we recommend against performing serum prolactin measurements during pregnancy.’
36. NHS information on blood tests says, ‘You may get your blood test results after a few days, and usually within a few weeks... If you do not hear anything after a few weeks, contact the GP surgery or specialist. The GP, nurse, or specialist should talk to you about your results and explain what happens next.’
37. We have seen the blood test was not appropriate, and the Trust should have shared the results of it with Dr O without her having to chase it up.
38. We consider the mistake in sending Dr O for the blood test was likely caused by the failing that she did not have a clear care plan in place for her circumstances in line with NG121.
Growth scan
39. Dr O complains the Trust did not arrange for her to have a follow up appointment with a consultant after her growth scan on 6 January 2022, meaning one was not available until two to three weeks afterwards. Dr O says the midwife told her they were unable to interpret the growth scan themselves, as a consultant needed to do this.
40. The Trust did not address this in its responses to Dr O. The Trust later told us it recognises it did not follow its usual process here but does not know why this is the case.
41. Dr O’s medical records detail her having a growth scan, and the midwife telling her to go to triage to have the associated report reviewed as there were ‘no appointments’. This seems to suggest what Dr O has said to be an accurate version of events.
42. Our endocrinology adviser told us there is no known link between Dr O’s condition and problems with foetal growth. The recorded measurement of the foetus that day was also well within the normal range.
43. If the Trust determined Dr O needed a consultant to interpret her growth scan, it should have documented this in her notes, and in turn arranged for this to happen. We have not seen any mention of this in the notes, and so we do not know why the midwife believed this was necessary. Our endocrinology adviser told us they are unsure why the midwife could not review and interpret the growth scan themselves.
44. Dr O’s condition is rare (one to three people in 10,000 have a prolactinoma that causes symptoms) so we can understand why a midwife may not know the particulars of how to treat someone with it, if they were not pre-prepared. If the Trust had formulated a clear plan for Dr O’s care as it should have in line with NG121, it is more likely this consultation would have gone as it should.
45. We understand it would have been frustrating for Dr O when the midwife told her a consultant needed to interpret her growth scan, but the Trust had not arranged this. From what we have seen so far, a consultant did not need to interpret the growth scan, and the midwife’s belief they did caused a delay in Dr O receiving the results.
46. We consider the misunderstanding around interpreting Dr O’s growth scan was likely caused by the failing that she did not have a clear care plan in place for her circumstances in line with NG121.
Complaint handling
47. Dr O complains about the amount of time it took the Trust to respond to her complaint and it did not respond to her when she chased this up.
48. The Trust said Dr O raised her concerns on 28 December 2021. The Trust said it planned to discuss her concerns with her at an appointment on 17 January 2022. The Trust recognised this did not happen and apologised to Dr O. The Trust said it processed Dr O’s feedback as a concern instead of a complaint. The Trust explains when we contacted it chasing up a response on Dr O’s behalf, it then needed time to investigate and respond. The Trust apologised for the unacceptable delay.
49. The complaint file from the Trust shows it logged Dr O’s complaint as a concern as it believed it could resolve the situation without an investigation. The Trust sent an internal email on 29 December, asking for somebody to urgently contact Dr O and ensure she had the correct plan in place to see the right team members going forward. A reply to this email said they would try to make sure this happened during Dr O’s appointment on Monday (24 January 2022).
50. The records from the consultation on 24 January do not mention Dr O’s complaint specifically. Dr O said she did mention her complaint, but clinical staff told her they would not deal with a complaint and to wait to hear from the complaints department.
51. The Trust did not take any further action regarding the complaint after 24 January, presumably as it believed the concerns had been addressed in the appointment. Dr O chased the Trust on 10 February, but it did not respond.
52. The Trust only acted following a call from us on 8 July. It provided Dr O with an initial response on 6 September. Dr O went back to the Trust with her outstanding concerns on 28 September. She received a second response on 13 January 2023.
53. Dr O clearly marked her concerns as a complaint when she first contacted the Trust in December 2021. She said her main goal was ensuring she would receive the correct care and treatment going forward during her pregnancy. Our complaint standards say staff should ‘look for ways they can resolve complaints at the earliest opportunity.’ The Trust dealing with this as a concern was therefore a reasonable course of action.
54. The issue is the Trust did not deal with Dr O’s complaint at all during this time. The Trust did not tell Dr O its plan was for her to discuss the complaint with the consultant during the consultation. We have not seen the Trust made the consultant aware it expected them to deal with Dr O’s complaint during their appointment. The Trust did not follow this up with Dr O, or the consultant, to ensure the complaint was resolved. The Trust also did not respond to Dr O’s chaser email from February.
55. Our complaint standards say, ‘Staff discuss timescales with everyone involved in the complaint and agree how people will be kept informed and involved. They provide regular updates as agreed with the parties, throughout.’ We have not seen that the Trust did this.
56. We recognise how frustrating it is to raise a complaint and not receive a response in a timely way, especially when is concerns ongoing treatment. There is a failing here as the Trust did not act in line with our complaint standards.
57. Dr O’s substantive issue is that the Trust did not deal with her complaint while she was still pregnant. Therefore, we will not consider the Trust’s complaint handling following our intervention in July 2022.
Impact
58. Dr O says, as a result of the Trust not monitoring her condition, she suffered from debilitating headaches and dizziness, which she believes the Trust could have mitigated against.
59. We have identified an endocrinologist or senior maternity consultant did not see Dr O in December as they should have. Our endocrinology adviser explained if Dr O was seen appropriately, she would have had more opportunity to discuss and explain her symptoms and concerns. This in turn means there would have been more opportunity for the Trust to offer her an MRI scan to monitor the size of her prolactinoma.
60. Our endocrinology adviser said while headaches are a common symptom, they can be a sign a prolactinoma has grown. If Dr O had received contact with an appropriately senior clinician when she should have, she would have had more opportunity to discuss her physical symptoms. This in turn likely would have led to more opportunity for the Trust to offer Dr O an MRI scan of her prolactinoma.
61. Cabergoline is a medication that both suppresses the production of prolactin and causes a prolactinoma to shrink. Cabergoline is safe to use in pregnancy to treat the symptoms Dr O has described, if it is appropriate to do so.
62. Our endocrinology adviser told us it is not clear from the evidence we have, what would have happened if Dr O did have an MRI scan of her prolactinoma. As the Trust did not conduct an MRI scan, we cannot say whether it should have directed Dr O to restart cabergoline. We also cannot say if the Trust should have undertaken any other interventions.
63. We cannot say with any certainty if the Trust’s failure to ensure an appropriately senior clinician saw Dr O when they should have caused the impact Dr O has described. This is because we do not know for sure what would have happened, if the Trust had acted correctly in line with the ESCP guideline.
64. What we can say is the Trust’s failing deprived Dr O of the opportunity to possibly improve her physical symptoms.
65. Dr O says stress also makes her condition worse, so the actions of the Trust added to her physical symptoms.
66. We recognise Dr O’s situation would have caused her to feel stressed. Our endocrinology adviser told us it is a well-recognised phenomenon that stress can increase the amount of prolactin in the blood. However, stress usually only increases prolactin levels by between a factor of x2 and x4. This is unlikely to be of clinical relevance in pregnancy, as prolactin levels are usually around x10 higher anyway.
67. It is Dr O’s prolactinoma itself which would have been causing the physical symptoms she described. Our endocrinology adviser told us they are not aware of any evidence which shows stress can increase the size of a prolactinoma. Therefore, we cannot say any stress the Trust caused Dr O would have worsened the physical symptoms associated with her condition.
68. Dr O says both the Trust’s poor care and lack of response to her complaint caused a loss of trust, anxiety and made her fearful about the birth of her child.
69. We have identified the Trust did not formulate a clear plan for Dr O’s care. This in turn meant an appropriately senior clinician did not see Dr O when they should have, and there were mistakes with her blood test and at her growth scan. We have also identified the Trust was poor in its complaint handling.
70. We can understand why a series of mistakes like this would cause Dr O anxiety and distress during her pregnancy, and to lose trust in the Trust. We can also understand why this loss of trust would have then caused Dr O to worry about other aspects of her care, such as the birth of her child.
71. Dr O says these impacts in turn meant she had to seek treatment elsewhere. Dr O continued to have some appointments with a midwife at the Trust but went to another trust for the birth of her child and necessary appointments prior to that.
72. In considering this impact, we need to determine if we consider the Trust’s failings were so significant, it was reasonable Dr O felt she had no option but to seek treatment elsewhere.
73. Dr O raised the issue of an endocrinologist or senior maternity consultant not being present at her appointment on 6 December at the time, which is why the Trust gave her another appointment on 13 December. An appropriately senior clinician was then again not present at this appointment.
74. An endocrinology consultant did see Dr O on 24 January, and formulated a plan for her care, including agreeing to arrange a planned c-section for at 38 weeks. We can understand why Dr O was concerned about the follow through of this plan, given her past experience. We know this will have been particularly important to Dr O as it was getting closer to her due date, and she needed an early c-section with her first pregnancy.
75. Dr O attempted to put her mind at ease about her future treatment by raising her concerns through the complaints process. This was unsuccessful, due to the Trust’s failing we have identified here also. The Trust also demonstrated a lack of understanding of Dr O’s condition in its handling of the growth scan and blood test.
76. We have seen there were a series of mistakes in the Trust’s care of Dr O. Dr O gave the Trust the opportunity to reassure her about her treatment going forward and it failed to do so. We therefore do think it was reasonable Dr O felt she had no option but to seek treatment elsewhere.
77. Dr O says she incurred costs due to both having to seek treatment elsewhere, and the wasted trips to appointments at the Trust. These are: • £188 for a hotel for Dr O in Poole for the three days before the birth.
• £30 to £40 for petrol costs for each of Dr O’s four trips to Poole.
• Over £500 for a hotel for Dr O’s parents.
• An unspecified cost for Dr O’s travel costs for wasted trips to the Trust.
78. Dr O told us she needed to book a three-night hotel stay as she required steroid injections in the two days prior to the c-section, to help her baby’s lungs. We have confirmed this with her records from Dorset Trust.
79. The distance between Dr O’s home and Poole Hospital is approximately 100 miles, and she tells us she drove there each time. We have confirmed Dr O attended Poole Hospital four times with her records from Dorset Trust.
80. We now need to consider if it was reasonable for Dr O to seek treatment in Poole, rather than anywhere closer to her home. Dr O told us she did extensive research and contacted various obstetricians and endocrinology consultant throughout the country to find a Trust which had expertise in her condition. This resulted in her being recommended an obstetrician at Dorset Trust, where the lead endocrinology consultant was also a hyperprolactinaemia expert.
81. While Poole is not close to Dr O’s address, it is also not unreasonably far away. We have not seen anything which would suggest Dr O chose Poole Hospital for any other reason than she believed she would receive optimal care there. We therefore can link the Trust’s failings to the costs she incurred in travelling to Poole on four occasions and staying in a hotel before the birth of her baby for the treatment she required.
82. Dr O explained she needed to pay for a hotel for her parents near her home while she was away for the birth, in order to look after her son. This was because Dr O did not want to have to take her son out of school for this time, and she did not have another childcare option. Dr O explained to us her employer provides her home, which is a flat above the premises. A condition of this is nobody else can be at the property when she or her partner are not there. This is why Dr O’s parents could not stay at the family home.
83. Having considered this information, we do understand why Dr O’s parents needed to book a hotel. However, the difference between this and the other incurred costs is anybody else in Dr O’s position would have also incurred similar costs. Also, this hotel cost came about due to Dr O’s living arrangements, which are out of the Trust’s control. We therefore cannot directly link the Trust’s failings to this claimed incurred cost.
84. While we have seen Dr O did not receive the care which she should have at some of her appointments, we cannot say they were ‘wasted trips’. This is because the Trust still did provide Dr O with a level of care at each appointment. We therefore cannot directly link the Trust’s failings to these claimed incurred costs.
85. Part of the outcome Dr O wants is for the Trust to apologise and to implement service improvements to reduce the risk of a similar situation occurring again.
86. Our principles say to put things right, organisations should also consider providing ‘an apology, explanation, and an acknowledgement of responsibility,’ as well as ‘remedial action, which may include reviewing or changing a decision on the service given to an individual complainant; revising published material; revising procedures, policies or guidance to prevent the same thing happening again; training or supervising staff; or any combination of these.’
87. The overarching issue of Dr O’s complaint is she did not receive the correct level of input from appropriately senior clinicians during her pregnancy, which meant the Trust did not monitor her condition appropriately. We have seen the Trust has acknowledged this, apologised for it, and detailed the steps it has taken to hopefully prevent a similar situation occurring again. We have reviewed this remedial action and feel it is appropriate. We also feel it will address the following issues Dr O had, which were ultimately caused by this overarching problem. We would therefore not expect the Trust to carry out any further actions regarding this.
88. In terms of the complaint handling, we have seen the Trust has already apologised to Dr O for this. We have not identified any systemic issues in the Trust’s complaint handling process which caused this failing, so we would not expect the Trust to carry out any further actions regarding this either.