ED attendances and hospital admissions April to August 2021
13. Ms C was concerned that, despite several attendances to the Trust’s ED between April and August 2021, Trust doctors did not get to the bottom of her symptoms or provide effective treatment for them.
14. We can see from the records and from her complaints that 2021 was a worrying time for Ms C. She had painful and sometimes alarming symptoms, and she is still not sure what has caused all of them.
15. Throughout this time, Ms C’s main recurring symptom was acute abdominal pain. Normally, we look to see if there was any applicable published guidance in place at the time to compare what happened, with what should have happened. Our physician adviser explained there was no specific guideline for this symptom at the time of these events, however NICE did create one in 2025. Although we cannot judge care provided in 2021 by 2025 published standards, we hope it will be helpful to Ms C if we share our opinion that her care in 2021 does not seem to have been unreasonable with the 2025 guidance in mind.
16. In terms of her care in 2021, GMC’s Good Medical Practice (2013) was applicable. Point 15says:
‘You must provide a good standard of practice and care. If you assess, diagnose or treat patients, you must:
• adequately assess the patient’s conditions, taking account of their history (including the symptoms and psychological, spiritual, social and cultural factors), their views and values; where necessary, examine the patient
• promptly provide or arrange suitable advice, investigations or treatment where necessary
• refer a patient to another practitioner when this serves the patient’s needs’.
17. We have considered what happened and whether the care Ms C received was in line with the GMC guidance.
18. In late April 2021 Ms C had been suffering from abdominal pain and weight loss for around a month when it became particularly bad. She called for an ambulance which brought her to the Trust’s ED. The doctor noted Ms C’s symptoms of increasing abdominal pain and weight loss with no change in bowel habit. They examined her and found her abdomen was tender. They requested blood tests which were all normal and noted her history, which included a background of endometriosis and irritable bowel syndrome her current medications.
19. Based on this the doctor suspected Ms C had gastritis (an inflammation of the stomach lining) secondary to naproxen use. Naproxen is a non-steroidal anti-inflammatory drug (NSAID) which reduces swelling and pain. Ms C had been taking naproxen for around 15 years. Unfortunately, the British National Formulary reports one of its known side effects is gastrointestinal disorders. This was a working diagnosis, in other words the doctor thought it was the best fit for her symptoms at that time. They discharged her with advice to stop taking naproxen. They also referred her for a CT scan (a scan which takes detailed pictures inside the body) to check for other causes of her symptoms. The scan found no cause for her symptoms, although it did find fibroids (non-cancerous tumours) in her uterus and that she had a bulky (large) uterus. The Trust discharged back to her GP with advice for them to follow up. At that time Ms C did not live locally to the Trust, so the doctor asked her GP to refer her to local health services if needed.
20. Ms C next attended the ED briefly in June with similar symptoms. Doctors carried out urine tests, which showed no concern, and blood tests which showed she was anaemic. Ms C explained she could not access a GP at that time, so the doctor asked its acute medical initial assessment (AMIA) unit to follow up with outpatient diagnostics in her GP’s place. There was no change to the overall plan and doctors ordered no investigations.
21. Staff at the AMIA unit contacted Ms C to follow up but she was unable to attend until the end of June, by which time she was feeling quite unwell with abdominal pain and fainting. The doctors examined her, noted her history which included recent antibiotics from her GP and heavy menstrual bleeding, and carried out blood tests. She had black stools and anaemia with low blood pressure. The doctors thought this suggested a possible gastrointestinal bleed (bleeding from the digestive tract). Doctors admitted Ms C so they could give her an iron transfusion to treat her anaemia and carry out a gastroscopy (an examination of the upper digestive tract with a camera on a small flexible tube). The gastroscopy was normal.
22. After a few days her pain had settled down so the doctors planned to discharge her and arrange an outpatient gynaecology review and colonoscopy (an examination of the lower digestive tract and rectum with a camera on a small flexible tube).
23. A few weeks later, at the end of July, Ms C came back to the ED. This time she reported chest pain, being short of breath when she exerted herself, and dizziness. Doctors admitted Ms C again and requested an ultrasound (a type of scan) which showed the fibroids and also a cyst on her kidney. Ms C also told doctors she had a history of pancreatitis (an inflammation of the pancreas which can cause pain and affect digestion and blood sugar). She told doctors this had been diagnosed abroad (meaning the diagnosis did not form part of her NHS records).
24. Doctors prescribed pancreatin, which replaces enzymes for digestion when the pancreas does not make enough, to see if this helped reduce Ms C’s symptoms. They also referred her to gynaecology, urology, and gastrology, for outpatient follow-up of the fibroids and kidney cyst, and to explore whether there were any issues with her digestive system causing her symptoms. Doctors discharged Ms C after four days.
25. Around a week later, Ms C attended the ED again with severe abdominal pain which was worse after meals. She had black stools and was feeling dizzy and vomiting. Doctors admitted Ms C for investigations and treatment again. Her blood test results were normal and a CT scan showed no specific findings beyond the fibroids. They requested reviews from several specialities. The surgical registrar suggested an ultrasound of her gallbladder. This was carried out and was normal. The gynaecologist registrar was not concerned by the CT findings or blood tests. The renal consultant suggested doctors consider carrying out a gastroscopy – we note Ms C had recently had a gastroscopy which was normal.
26. A gastrologist reviewed Ms C and felt she likely had cutaneous nerve entrapment (a trapped nerve under her ribs). This could be a cause of her some of her pain. Doctors were unable to find other causes for her symptoms during this stay which lasted nine days. They discharged her with painkillers to treat the abdominal pain.
27. Following this period of hospital attendances with acute symptoms, there were referrals in place to review Ms C in outpatients under various specialities, some aspects of which we consider further below. We recognise it was worrying for Ms C to repeatedly attend hospital and not fully understand why she was unwell.
28. On each occasion doctors examined Ms C and carried out investigations. They provided some treatment and referred Ms C for further investigation and advice where appropriate. This is in line with Good Medical Practice. While doctors were unable to pinpoint a cause for some of her symptoms, they were able to rule out the most serious explanations for them. Our adviser explained doctors’ actions and the investigations they ordered were what they would expect based on their experience. They explained that diagnosing the cause of chronic abdominal pain is usually better suited to outpatient care, which is where Ms C was referred to for ongoing investigations.
29. We have seen no indication that anything went wrong with this aspect of Ms C’s care.
Kidney cyst
30. Ms C told us that she was told by doctors that the kidney cyst they found in July 2021 needed to be removed. She explained it was causing her pain, constipation, and urinary tract infections (UTIs). She said she suffered needlessly as she waited far too long for it to be drained in December 2022 and then removed in June 2023.
31. Ms C complained about the delays in April 2022. In October the Trust wrote to her to say there was no evidence in her records that her kidney cyst needed to be removed. It apologised for any miscommunication from its staff which made her think this was the case. Shortly after this response a urologist reviewed Ms C and made a plan to drain the cyst to see if this improved her symptoms. As Ms C reported a brief improvement in her symptoms, surgeons agreed to remove it.
32. The records show that when Ms C was admitted in July 2021 an ultrasound scan of her bowel to consider whether there was a gynaecological cause for her symptoms found fibroids in her uterus, and an incidental finding (unintentional discovery) of a cyst on her left kidney.
33. The cyst was classified as a ‘Bosniak type II’ cyst. Our urology adviser explained that this is a benign cyst, which is a common finding and rarely causes symptoms. It is not a concern and does not require follow up or medical intervention. Such a cyst, our urology adviser explained, would not cause UTIs. The cyst itself can become infected, but there is no evidence this happened within Ms C’s records.
34. We noted that although Ms C did have abdominal pain, a Trust doctor had previously made a working diagnosis of cutaneous nerve entrapment. She also had a known diagnosis of endometriosis and both gynaecology and gastroenterology reviews were already planned to investigate her symptoms. We think these were all potential and more likely explanations of her symptoms.
35. The Canadian Urological Association Journal ‘Guidelines on the management of renal cyst disease’ (the cyst guidelines) say that no follow-up is required for Bosniak type II cysts. In other words, doctors did not do anything wrong when they initially took no action about the cyst. It is worth noting, however, that Ms C did have several scans for other reasons and, by August 2022, the cyst had been imaged in three CT scans and two ultrasound scans which confirmed the nature of the cyst. That means the cyst was monitored, even if this was not the intention behind the scans.
36. The rationale for the change in plan in late 2022 is unclear from the records, however it may be because of Ms C’s concern the cyst was behind some of her symptoms. We can see from records she told her urologist she thought she had a prolapsed kidney (where the kidney moves out of place), although this was never confirmed. She reported her symptoms improved for a few weeks after the cyst was drained. When the cyst was removed a few months later, the surgeons found it had considerably reduced in size since the last time it was imaged.
37. Ms C was experiencing a worrying range of symptoms and it is natural she was concerned to learn her kidney had a cyst. We have seen nothing to indicate that the Trust failed to offer any treatment that it should have done, or that there was any delay in providing treatment. Doctors at the Trust appear to have gone further than the relevant guidance required by treating the cyst in line with Ms C’s wishes, so we have decided not to take further action about this aspect of her concerns. We are sorry to learn that removing the cyst did not resolve her most serious symptoms.
Incorrectly diagnosed with cutaneous nerve entrapment
38. Abdominal cutaneous nerve entrapment (ACNES) is a rare cause of chronic abdominal pain. Our physician adviser explained that there is no specific diagnostic test for ACNES, so diagnosis is suspected when other causes are excluded. In Ms C’s case, several other causes of her abdominal pain had been excluded so, in our opinion, considering the possibility of ACNES was not unreasonable.
39. The records show the Trust carried out a Carnett’s test in August 2021, a type of clinical examination to differentiate between abdominal wall pain and pain from internal organs. This test was positive which suggested the source of the pain was the abdominal wall. The British Journal of Anaesthesia, ‘Abdominal cutaneous nerve entrapment syndrome’ explains that a positive Carnett’s sign can be indicative of ACNES, as well as other diagnoses. It is not a definitive test and there is no definitive test, but the Carnett’s test does help to explore the possibility of ACNES.
40. We cannot definitively say whether Ms C did or did not have ACNES – in fact she could have had more than one condition which contributed to her symptoms. At the time the diagnosis was suggested, doctors had already carried out tests which excluded some of the other causes for her symptoms and further investigations were planned. On the basis of the available evidence including what is known about ACNES, we did not see any indication the Trust was wrong to view ACNES as a possible factor. Our physician adviser’s opinion, which we share, is that this diagnosis was reasonable at the point it was suspected in light of Ms C’s symptoms and the tests which had been carried out
41. We understand that Ms C feels strongly she did not have ACNES. While we appreciate our consideration may not change her mind, we hope she is reassured that this does not appear to have prevented further investigation into her symptoms from taking place. As noted above, other tests and examinations would continue in the outpatient setting and the suggestion of ACNES did not appear to change Ms C’s clinical pathway
Identifying and treating adhesions
42. Doctors at a different care setting had diagnosed Ms C with endometriosis many years prior to these events. Endometriosis is a long-term condition where tissue similar to the lining of the womb is found elsewhere in the body. This can cause painful periods which affect day-to-day functioning, pain in other parts of the body (particularly the pelvis, stomach, lower back, or legs), bloating, and persistent exhaustion or tiredness. Over time the endometriosis tissue can cause internal scars known as adhesions, which can cause internal organs to become stuck together, and makes symptoms worse.
43. There is currently no cure for endometriosis, and treatment focusses on symptom management. Ms C previously had two surgeries to remove endometriomas (cysts related to endometriosis), most recently in 2019.
44. Ms C said she developed multiple abdominal adhesions on her left, middle and right side as a result of her untreated conditions. She explained some adhesions were removed by surgeons, but she felt she suffered horrendous complications to her bowel, ureters and ovaries as the adhesions were fusing them together. Now, she says, these are too numerous to safely remove. She told us that a laparoscopy (surgery using a camera and small incisions) should have been carried out sooner as this could have identified the extent of the adhesions and removed them before they got too bad.
45. The Trust said it took appropriate steps to diagnose and treat Ms C. Under its gynaecology pathway it reviewed her, carried out MRI scans, and (in 2024, after the scope of the issues we are considering) it carried out a laparoscopy.
46. National guidance for the diagnosis and management of endometriosis is set out in NICE guideline NG73. This explains that ‘delays can affect quality of life [for people with endometriosis] and result in disease progression’. NG73 recommends hormonal treatment to reduce the pain caused by endometriosis (paragraphs 1.4.5 and1.4.6). It suggests care of patients with endometriosis (especially complex cases) is undertaken by a local endometriosis specialist with appropriate surgical expertise, or by referral to an endometriosis centre, where multidisciplinary team supports the endometriosis specialist surgeons (paragraphs 1.1.3 and 1.1.4).
47. The Trust admitted Ms C as an inpatient in July 2021 and recorded a recent history of weight loss and anaemia. Ms C told doctors she had endometriosis and that doctors elsewhere had removed an endometrioma in 2019. She also told them she had been treated for chronic pancreatitis in the past. Following this admission doctors made referrals for outpatient follow up under gynaecology as well as other specialities.
48. A gynaecologist first saw Ms C in July 2022, a year after her referral. They prescribed progestogen (a hormonal treatment) and said they would discuss her case with a local endometriosis specialist. This is in line with guideline NG73.
49. Ms C subsequently saw the endometriosis specialist in May 2023, who referred her for an MRI scan, and recommended Prostap, which ‘turns off’ the ovaries to reduce symptoms, in the short term while investigations continued. They asked her GP to prescribe Prostap, although it appears Ms C decided against taking this due to concerns about her fertility and side effects. After the period we are considering, in October and December 2023, Ms C saw a further local specialist and had laparoscopic surgery to treat some of the endometriosis and adhesions.
50. Our gynaecology adviser’s opinion, which we agree with, is that the sequence of events and treatment was appropriate. However, there were quite significant gaps between the events which we asked the Trust to explain so we could consider if there were any failings connected to these gaps. There is no specific guideline for the timescales that apply here so we considered our Principles of Good Administration: ‘Being customer focussed’. This says that public bodies should behave helpfully, dealing with people promptly, within reasonable timescales and within any published time limits. They should tell people if things take longer than the public body has stated, or than people can reasonably expect them to take.
51. Ms C was referred to the Trust’s gynaecologists in July 2021 and one of its gastroenterologists made a further referral in October 2021. The Trust arranged a routine appointment in May 2022. This was ten months after the original referral and eight months after the second referral. We think this is longer than people might expect to wait.
52. Ms C asked for this appointment to be rescheduled on the day as she was unwell. The Trust rearranged it for early July, this is around two months later which is reasonable given that likely filled its clinics several weeks in advance. The Trust had to cancel this clinic (all the patients on this session) and rearranged it for mid-July. This is the first appointment which went ahead, as set out above. The next appointment was arranged with the endometriosis specialist five months later in December 2022. This may also be longer than people might expect to wait.
53. Ms C rearranged this appointment on the day due to travel difficulties and the Trust rebooked this for January 2023. Ms C again rearranged the appointment on the day as she was unwell. This time the Trust rebooked it in May 2023, and this four-month delay is longer that Ms C had previously had to wait when appointments were rescheduled. At this point the Trust started active monitoring and was awaiting test results. Three months later it arranged a new appointment with the same consultant in November, although we note that Ms C asked to have a new consultant and the Trust was able to arrange this appointment for an earlier date October.
54. The waits which may have exceeded what a member of the public might expect were the wait for an initial appointment (ten months), the initial wait to see the endometriosis specialist (five months) and the second time the Trust rearranged the appointment with this specialist. In line with our Principles of Good Administration, we would expect the Trust to tell gynaecology patients about these delays.
55. The Department for Health and Social Care (DHSC) wrote to clinicians at in November 2020 about the impact of the Covid 19 pandemic on the NHS’s ability to deliver care. Ms C’s initial care started at a time when all patients were still routinely tested for Covid 19 and the NHS was still experiencing and recovering from the impact of the pandemic. DHSC acknowledged that clinicians may need to make temporary changes to practice and would need to use their judgement and take account of the realities of the situation caused by the pandemic. In other words, it accepted that NHS bodies may not be able to meet the usual expectations of patients and there would be an impact on performance. We would expect this to diminish with time.
56. The Trust’s 2020-21 annual report notes that it paused non urgent care in the first wave of the pandemic. It explained its focus for the next year, when the events of Ms C’s complaint started, would be ‘a credible recovery plan for our patients who have waited far longer than we would like’. In its 2021-22 annual report it was pleased to report it no longer had patients waiting more than two years for operations and it was reducing the numbers of those waiting more than on years. While Ms C was not on a waiting list for gynaecology surgery at this time, this gives context to the awaits the Trust’s patients could experience at that time.
57. The initial impact of the pandemic on health services in general was well reported in the media. By March 2022, the NHS (including the Trust) had more bespoke information for patients about NHS waiting times via the NHS’s ‘My Planned Care’ service. This breaks down average waiting times by organisation and by area of care. From May 2022 the information for gynaecology services at the Trust included a letter dated which acknowledged it was still recovering from the impact of the pandemic. Its gynaecology patients were still waiting longer than it would like, and it could not always tell them when treatment would take place. It explained how it was allocating its services based on need, so different patients might have different waits. It included guidance to help patients decide what to do if their health condition got worse. This information remained current for the rest of the period we are considering.
58. Ms C did experience significant waits for some of her appointments, some of which were in the Trust’s control and some of which were not. We recognise that this was worrying when she had a known health condition (endometriosis) which may have been causing some or all of her symptoms.
59. We saw no indication that Ms C’s wait was longer than other patients in her circumstances and we do not think the delay amounts to a failing in the context on the national picture at that time. The Trust acknowledged that its gynaecology waits times were not short enough and, as it began to recover from the impact of the pandemic, it planned to reduce these waits. When it (and the NHS more broadly) began to recover from the initial impact of the pandemic it also made information available on its website about wait times. This is in line with DHSC’s modified expectations and our Principles of Good Administration.
60. In summary, Ms C’s gynaecology care followed the appropriate sequence. While she did experience some long waits to see the gynaecology consultants, we do not think this amounted to a failing.
61. In summary, we did not see any indications that something went wrong with Ms C’s care and this means we have decided not to take further action about her complaint. We know she experienced painful and worrying symptoms which she tells us continue to this day. We are sorry to learn she has had this experience and that she spent a long time hoping for effective treatment. Our decision is not intended to detract from this experience and we hope the explanations give her some reassurance about the care she received.