Dismissed symptoms in October 2022
23. 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 found any indications that something has gone wrong.
24. Miss A said she has been experiencing increasing pain since 2016. The pain had become unbearable and excruciating. It was impacting on all aspects of her life and triggered thoughts of self-harm and suicide.
25. She told us her GP had made two referrals to GATU which had been rejected. She said after her partner complained to PALS, she was advised to attend GATU with a copy of the expedite letter from the GP.
26. Miss A said she attended in October 2022 and a nurse spoke with her about her pain and symptoms. Miss A said she felt the emphasis was very much on a diagnosis of IBS, without endometriosis being fully considered.
27. She told us a consultant then spoke with her. They asked her if she had been sexually assaulted. A question Miss A felt was appropriate to ask. However, she was concerned that the consultant considered the pain was connected to a sexual assault and was psychosomatic.
28. Miss A was unhappy the consultant also prescribed Buscopan. This indicated to her they considered her symptoms to be related to IBS, rather than endometriosis.
29. Miss A is concerned the consultant did not consider all her symptoms which included chronic pelvic pain, pain during/after sexual intercourse, period-related pain, painful bowel movements and pain when urinating, could also be associated with endometriosis. Miss A believes the consultant denied her appropriate treatment at this point.
30. In the Trust’s response, it said Miss A was seen by the consultant in October 2022. They recommended she took a progesterone-only contraceptive pill for a minimum of six months to allow time for the hormone treatment to help her symptoms. She had previously only taken it for two months. It said the consultant also recommended Buscopan as they suspected an element of IBS. Additionally, the consultant requested Miss A’s GP made a referral for psychosexual counselling.
31. The Trust explained the symptoms of endometriosis are also symptoms that can be associated with other conditions such as IBS. It added the diagnosis of endometriosis can be difficult. The Trust considered the consultant assessed Miss A appropriately and made a sound clinical judgement at this point.
32. It further added it was appropriate to prescribe Buscopan. This medication would not aggravate endometriosis but would improve any symptoms of IBS.
33. ESHRE guidance says, ‘it is recommended to offer women hormone treatment (combined hormonal contraceptives, progestogens, GnRH agonists or GnRH antagonists) as one of the options to reduced endometriosis-associated pain … there is moderate quality evidence of benefit for all listed hormone treatments for relief of painful symptoms related to endometriosis. As there is no evidence that hormone treatments have a negative effect on disease progression and they generally have limited side effects, prescribing hormone treatment is recommended (strong recommendation).’
34. NICE [NG73] guidance says women or people with symptoms of, or confirmed, endometriosis will need to be referred to a gynaecology service for further investigation and management if initial treatment is not effective, is not tolerated or is contraindicated, or they have symptoms of endometriosis which have a detrimental impact on activities of daily life.
35. The NIH review informs that endometriosis and IBS are linked, and the condition often co-occur due to shared symptoms and underlying inflammation. It states women with endometriosis are approximately three times more likely to have IBS than women without endometriosis.
36. We can see from the records Miss A attended GATU in October 2022. A nurse initially spoke with her and requested the consultant saw her. Notes indicate the consultant gathered information about her symptoms, both physical and phycological, and her clinical history. We can see they asked her about a history of sexual abuse. They also recommended she continued to take the contraceptive pill for a minimum of six months, as well as Buscopan.
37. We asked our adviser whether the treatment the consultant recommended at the appointment was appropriate and in line with guidance, given Miss A’s clinical history and presentation.
38. They felt the consultant appropriate reviewed Ms A. They said records indicate the consultant reviewed Miss A’s clinical history and presenting symptoms, and considered endometriosis as a possibility. This is evident because they recommended Ms A took the contraceptive pill for six months period. This tells us they were not dismissing the possibility of endometriosis.
39. EHSRE guidance says offering women hormone treatment to reduced endometriosis-associated pain is a ‘strong recommendation’. The consultant recommended this in line with the guidance.
40. Our adviser said it was also appropriate to consider Buscopan for pain relief. They highlighted the recognised overlap with IBS and endometriosis, noting sixty percent of patients diagnosed with endometriosis had co-existing bowel symptoms such as bloating, pain and change in stool frequency and consistency.
41. We understand from this the consultant was considering both possibilities as well as the possibility of co-existing health issues. They offered treatment for both endometriosis and IBS.
42. We asked our adviser whether Miss A should have been referred for further diagnosis steps including ultrasound at this point.
43. They said an ultrasound is an aid to diagnosis but there is no guidance around when a clinician should make the referral for this. They say the consultant could have made a referral for a scan at this point, but Miss A had already been referred to the gynaecology service, in line with NICE guidance, where symptoms and options would be considered further.
44. We are sorry to hear about the extent of pain Miss A was experiencing at this point and the impact this was increasingly having on her life and wellbeing. We consider the consultant acted in line with guidance when considering both endometriosis alongside elements of IBS, and in terms of treatment they offered.
Dismissive of symptoms in March 2023 and inappropriate treatment options offered
45. Miss A said her GP sent a further expedite letter to GOPD (the Gynaecology Outpatient Department). She said she was in debilitating pain, distressed and her mental health was deteriorating. The GOPD rejected the referral. Her partner contacted PALS again and she received an appointment for March 2023.
46. Miss A believed at this appointment, a consultant would assess her for a laparoscopy, and this would be scheduled for shortly after. Rather, she said she was seen by a resident doctor who seemed to want to avoid arranging a laparoscopy. Miss A is of the view she should have been seen by a gynaecologist or an endometriosis specialist at this point.
47. She said the resident doctor asked her about her symptoms and then recommended pain relief and birth control. Both of which she had previously tried unsuccessfully. The resident doctor also raised IBS as a possibility.
48. Miss A said she felt strongly she had endometriosis and considered a laparoscopy to be the best way forward. She said she and her partner insisted on the laparoscopy, they signed a form and assumed this would lead to the service arranging a laparoscopy.
49. The Trust said Miss A had been on the waiting list for GOPD. Miss A’s GP had provided the service with further information about the impact her condition was having on her mental health. It said this information, alongside her contact with PALS, brought forward the appointment.
50. The Trust explained there is clear guidance about when women should be seen by a gynaecologist or specialist endometriosis service. As Miss A had not been formally diagnosed with endometriosis, it said it was appropriate for her to be seen initially in the GOPD.
51. It said the registrar undertook an assessment of Miss A’s clinical history and symptoms, and the impact of these. They noted previous medical treatment (the contraceptive pill) which had not been successful. The Trust said the resident doctor was aware of Miss A’s preference for a diagnostic laparoscopy and explained the facts, risks and benefits of this treatment.
52. The Trust noted Miss A stated her preference for a female surgeon and the resident doctor referred Miss A to a female consultant gynaecologist and endometriosis specialist for ongoing care.
53. NICE guidance says, ‘consider laparoscopy to diagnose endometriosis in women or people with suspected endometriosis, even if the ultrasound scan or MRI scan was normal’.
54. ESHRE guidance states, ‘both diagnostic laparoscopy and imaging combined with empirical treatment (hormonal contraceptives or progestogens) can be considered suspected of endometriosis. There is no evidence of superiority of either approach and pros and cons should be discussed with the patient’.
55. Clinical records show Miss A attended the GOPD in March 2023. Notes indicate the registrar obtained a detailed history, discussed previous medication and considered the impact on the quality of different aspects of Miss A’s life. Records refer to the intense pain, the impact on her mental health, her working life and relationship.
56. The resident doctor noted Miss A’s frustration around the lack of a formal diagnosis. We can see the resident doctor discussed endometriosis and the pros and cons of a laparoscopy. They discussed consent and Miss A signed the form. Notes indicate the plan was for Miss A to be booked for a laparoscopy and treatment of endometriosis.
57. We asked our adviser whether they considered Miss A’s symptoms were further dismissed at this appointment and whether the service offered appropriate offered.
58. Our adviser felt the consultation recorded in the notes appeared thorough and clinically appropriate.
59. In line with ESHRE guidance, there is evidence the clinician appeared to take a share decision-making approach, appropriately discussed the options, advantages and benefits of all treatment options.
60. We cannot see any evidence to suggest the resident doctor was reluctant to offer a laparoscopy. We are not dismissing Miss A’s view around this. In some instances, it is not possible to reach a view on as issues raised as part of a complaint. In this case, it is due to a difference of opinion, and lack of evidence in the records to indicate either way.
61. We understand Miss A was continuing to experience significant symptoms and felt desperate for treatment. We can see the clinician discussed the laparoscopy with Miss A and she signed a consent form. We will not be considering this part of her complaint further.
Did not consider her mental health or provide appropriate intervention at the GATU in August 2023
62. Miss A said in June 2023 she had an appointment with the consultant who agreed to the laparoscopy. She was informed this would happen in eight to twelve weeks.
63. She said whilst waiting for the appointment, her pain became increasingly worse to the point at which she attended the emergency department (ED) in August 2023. She says her mental health had also suffered significantly. The Trust transferred her to GATU.
64. Miss A said she felt she needed some support with her mental health as well as her physical issues, but the mental health team did not want to see her until a gynaecology clinician had seen her first.
65. Miss A said she pleaded for the laparoscopy to be brought forward at this point considering the severity of her symptoms. The clinicians would not agree to this so she self-discharged without signing the paperwork. She said she realised no one was going to offer her any help.
66. The Trust said it was neither practical nor advisable for a surgeon to carry out a laparoscopy when Miss A was at the GATU in August 2023. It explains planed surgery should not be performed acutely as an emergency unless there is concern around undue permanent physical harm or a life-threatening situation.
67. It added urgent/emergency operating theatres need to be kept available for emergency surgery. Additionally, it said surgery is best performed by a surgeon with a full understanding of the patient and their condition. At this point Miss A was on a consultant’s waiting list.
68. In its response the Trust recognised how frustrated Miss A and her partner were at this point because she continued to suffer whilst waiting for a date. It said it was sorry they left the department whilst the clinician was trying to provide support. They were unable to expedite an earlier date for the laparoscopy. A letter was issued seven days later with a date for the procedure.
69. NICE guidance says, ‘during a diagnostic laparoscopy, a gynaecologist with training and skills on laparoscopic surgery for endometriosis should perform a systematic inspection of the pelvis and record the findings’. This is usually done as an elective procedure.
70. We can see from the medical records Miss A attended the ED in August 2023. Notes indicate she presented with ‘severe stabbing perineal pain, involving vagina, lower abdomen, anus, worsening waves of pain’. She was vomiting.
71. Records also show she was tearful, feeling suicidal, reported self-harming and being unable to cope with the pain.
72. We can see Miss A was moved to GATU where a clinician further reviewed her. Notes indicate she was requesting a laparoscopy. A clinician explained they could not do a diagnostic laparoscopy in an acute setting and discussed there was no guarantee that endometriosis was causing her pain, considering the lack of response to any hormonal treatment.
73. The records indicate Miss A and her partner were upset and angry and did not want to engage in the discussion or to accept any alternative treatment. She self-discharged.
74. The clinician also recorded they suggested Miss A spoke with someone from the Acute Liaison Psychiatry Service (ALPS). This is a team who provides support to patients experiencing mental health issues. Notes say Miss A and her partner became angry at this suggestion and did not want to see anyone from this team. The clinician considered Miss A had capacity to make this decision.
75. We realise Miss A was experiencing extreme pain at this time. This is indicated in the both the clinical records and from Miss A’s self reporting. Miss A wanted the laparoscopy brought forward.
76. In line with the Trust response, NICE [NG73] guidance indicates a gynaecologist with training and skills in laparoscopic training should carry out the procedure as an elective procedure. We understand this to mean it would not be clinically sound for this surgery to happen as an emergency in an acute setting. We also appreciate operating theatres in emergency settings needs to be kept available for emergency procedures.
77. We understand Miss A was extremely upset and did not want to engage in discussions around other treatment options, as she felt these had all been considered previously. We know she was on a waiting list for the laparoscopy. We cannot see indications of failings in this aspect of Miss A complaint. We understand why it was not clinically appropriate to carry out a laparoscopy at this point.
The Trust did not carry out a laparoscopy within an acceptable timeframe
78. Miss A considers the Trust should have carried out a laparoscopy prior to September 2023, given the severity of her symptoms, her presentation over the previous years, and the impact on every aspect of her life.
79. In the Trust’s response, it said Miss A was initially added to a waiting list for a diagnostic laparoscopy in March 2023. However, it said when Miss A stated her preference for a female surgeon, she was discharged from this lit and referred to a female consultant. The consultant saw Miss A in June 2023, and she was listed for a diagnostic laparoscopy which she performed in September 2023.
80. The Trust explained the average time to diagnose endometriosis in the United Kingdon is seven – ten years. It explained in its response as detailed above, why it did not perform a laparoscopy earlier. It added, the laparoscopy in September indicated Miss A’s endometriosis was at a very early stage, and it was unlikely this would have shown up had it carried out a laparoscopy several years earlier.
81. NICE [NG73] guidance tells us the average time form symptoms to diagnosis for endometriosis can vary between seven and ten years.
82. Miss A informed us she had been experiencing symptoms for nine years previously. We do not underestimate the impact severe pain for a prolonged period would have had on her life.
83. As set out in the sections above, we consider the Trust acted in line with NICE [NG73] guidance in terms of assessing and treating Miss A over this period of time. We consider the Trust considered Miss A’s symptoms and made clinical judgements about treatment which met protocols and standards.
84. As stated, guidance indicates both diagnostic laparoscopy and imaging combined with empirical treatment (Hormone contraceptives or progestogens) can be considered in women suspected of endometriosis. There is no evidence of superiority of either approach and pros and cons can be discussed with the patient.
85. We know in Miss A’s case, the Trust initially went down the hormone contraceptive route, before discussing the pros and cons of a laparoscopy. We cannot say there was undue delay in the Trust providing Miss A with a laparoscopy. Unfortunately, Miss A’s journey with endometriosis fits into the national picture which shows the difficulty diagnosing endometriosis and the average amount of time taken to receive a diagnosis being seven to ten years.
86. We cannot see indications of failings by the Trust in relation to the time-frame in which she was offered a laparoscopy.
The Trust did not provide a follow up appointment after the laparoscopy within eight to twelve weeks
87. Miss A said she was told she would receive a follow up appointment eight to twelve weeks after the laparoscopy. She said by January 2024, the Trust still had not sent her an appointment date.
88. The Trust explained in its response that NHS England and all Trusts and gynaecology departments in England are working hard to reduce waiting list times at a time when the NHS was trying to recover from the effects of the pause in service during the coronavirus pandemic and with an ever-increasing demand on gynaecology services.
89. It recognised the impact of long waiting lists and said it is working hard to reduce waiting times.
90. Our Principles of Good Administration set out how public bodies should act. Part 2 says, ‘Public bodies should do what they say they are going to do. If they make a commitment to do something, they should keep to it or explain why they cannot’.
91. We can see from the discharge summary, a follow up appointment was requested in eight to twelve weeks. We can also see the appointment happened 20 weeks after the procedure.
92. We asked our adviser about the importance of a follow up appointment. They said it is important to have the diagnosis of the disease explained and further management plan discussed post-surgery. They said this enables women and their partners to better understand the reasons for their symptoms, to accept the situation and to be able to make sense of their circumstances.
93. They also explained the appropriate frequency and type of follow up monitoring should be individualised based on previous and current treatments and the severity of the disease and symptoms.
94. The Trust did not arrange a follow up appointment in line with what it said, which falls below the standards outlined in our principles. It provided a valid explanation for the delay.
95. Our adviser’s view was that a timely post-operative appointment could have alleviated some anxiety Miss A was feeling and prevented frustration. They did not consider there would have been any impact on her physical health.
96. We are sorry Miss A experienced further delay. We understand that four weeks post laparoscopy, she was experiencing pre-surgery levels of pain. We realise how important it was for her to have a follow up appointment to discuss this and to consider a management plan moving forward. We also understand the pressure on services. We will not be taking this part of Miss A’s complaint further.
97. Miss A has told us she continues to experience significant pain which impacts on both her physical and mental health, and every aspect of her life. We do not underestimate this and hope she finds effective treatment and her situation improves.