Delays in treatment 18. Ms R says the Trust failed to provide her with a gastroenterology appointment soon enough as she waited over 12 months and was not seen. She says whilst she was waiting to receive an appointment, her condition worsened.
19. Ms R says she arranged to see a private consultant because she was becoming sick three or four times a day and was concerned about how bad her hernia was. She says at this consultation, she was told her condition had now become life threatening.
20. The Trust apologised for the problems Ms R experienced in accessing its services and recognised how important it is to receive timely and effective medical care.
21. The evidence shows Ms R’s partner, Mr A, made a formal complaint to the Trust in December 2022. The complaints manager acknowledged his complaint and said ‘Having spoken with you previously I advised that there was at that time an 18 month wait for new appointments even for urgent cases. With this in mind it is likely that [Ms R] will be contacted in the new year however the service is still unable to provide a specific date.’ Mr A says he does not recall being advised there was an 18 month wait.
22. This email also said the Trust was unable to refer Ms R externally, but her GP may be able to refer her to another hospital or out of county, and the Trust would consider Ms R if a cancellation became available.
23. Ms R says, at this stage, she had no alternative options other than to see a consultant privately because of the deterioration in her health. In early January 2023, she had a private consultation with a gastroenterologist. Ms R was deemed a high-risk patient and had her surgery in April 2023.
24. Ms R called the Trust in August 2023 to advise she no longer needed an appointment, and it discharged her on this day. The Trust had still not arranged an appointment for her by August 2023; 16 months from when she was first referred in April 2022, and 13 months from the date it expedited her referral.
25. Under the NHS constitution, the maximum waiting time for non-urgent, consultant-led treatments is 18 weeks from the day the hospital receives a patient’s referral letter. There is no national guidance to determine how soon a patient should be seen after an urgent expedite that is not a 2WW (two week wait). This refers to an urgent referral for suspected cancer ensuring patients see a specialist within two weeks.
26. The NHS Constitution (2021 version in place at the time) says:
‘You have the right to access certain services commissioned by NHS bodies within maximum waiting times, or for the NHS to take all reasonable steps to offer you a range of suitable alternative providers if this is not possible. The waiting times are described in the Handbook to the NHS Constitution.’
27. The Handbook to the Constitution (2022 version in place at the time) says patients have the right to start consultant-led treatment within a maximum of 18 weeks from referral for non-urgent conditions. It says:
‘If this is not possible, the CCG or NHS England, which commissions and funds your treatment, must take all reasonable steps to offer a suitable alternative provider, or if there is more than one, a range of suitable alternative providers, that would be able to see or treat you more quickly than the provider to which you were referred.’
28. The Trust’s pre-pandemic average wait time from gastroenterology referral to appointment in 2018 was 77 days (11 weeks). The Trust told us it could not say what the wait time was at the time Ms R was waiting for an appointment but we know from our investigation and Ms R’s experience that patients were generally not being seen within 18 weeks.
29. The Trust says these delays are due to the way services were asked to work in response to the pandemic in the years prior, such as closing direct booking, appointment slot issues, reduced capacity in clinics due to social distancing, increased waiting lists, staff diverted to working in different roles, which meant the ‘business as usual’ (BAU) activity fell down.
30. In February 2022, the NHS created a delivery plan for tackling the COVID-19 backlog of elective care. This has a focus on clinical prioritisation and managing long waits. It set out to ensure those with the clinically most urgent conditions are diagnosed and treated the quickest. It sent a letter to all NHS Trusts to inform them of this plan and explained it required a collective focus to:
• Increase capacity and separate elective and urgent care provision, while freeing clinicians’ time for new patients and those with the greatest clinical need • Prioritise diagnosis and treatment for those with suspected cancer or an urgent condition and offering alternative locations with shorter waiting times for those waiting a long time.
31. While progress was made following this, the 2025 NHS reform paper explains the proportion of patients waiting longer than 18 weeks is still too high. In October 2024 6.3 million patients were waiting for an appointment, procedure or operation and more than two-fifths of these waits were for over 18 weeks. With its plan to reform elective care, the NHS plans to meet the 18-week standard by March 2029.
32. As the 2025 NHS reform paper highlights, not meeting the 18-week constitutional time frame is a wider issue due to lasting impacts of the pandemic occurring across the NHS. We understand the pressures on the NHS and consequently, it would be unreasonable for us to criticise the Trust for having longer waiting lists as a lot of this was out of its control.
33. However, we have considered what was appropriate and reasonable to do in this specific circumstance, as well as what the Trust was doing to act in line with the 2022 post-pandemic recovery plan at the time. We have also considered if the Trust could not see Ms R soon enough, what it was doing to manage the risk to her condition worsening.
34. When the Trust received Ms R’s referral, it registered this as routine. This was in line with the GP’s request.
35. However, upon upgrading her referral and deciding how to prioritise Ms R’s appointment in line of this new information, our surgical adviser says the Trust should have taken into consideration that her symptoms had worsened, she had attended A&E, and the GP had escalated the referral, asking for a more urgent review.
36. Our surgical adviser explained the clinical risk for a patient with a symptomatic large hiatus hernia is that the stomach may twist or become trapped in the chest. Because of this, the Trust should have prioritised an urgent appointment for Ms R. Our adviser explained that there is no guidance which required this was done in any specific timescale. However, given her symptoms and the potential risks, offering her an appointment within six weeks to fast-track the assessment and future surgical date would have been in line with established good practice.
37. Our Principles of Good Administration state organisations must act in accordance with recognised quality standards, established good practice or both when delivering clinical care. Therefore, in this situation, we will use the professional judgement of our surgical adviser which is based on established good practice.
38. We asked the Trust what action it was taking in line with the delivery plan to separate elective and urgent care provision and prioritise diagnosis and treatment for those with an urgent condition at the time Ms R was on its waiting list. The Trust said there are designated slots for routine and urgent gastroenterology referrals, and it used some urgent slots for long-waiting patients. This did not tell us what the Trust was doing to prioritise diagnosis and treatment for those with an urgent condition.
39. The Trust also said it had been outsourcing gastroenterology outpatient appointments through a third-party provider since October 2022. It says from October 2022 to April 2023 it outsourced provision for around 400 patients.
40. In addition to this, the Trust told us its gastroenterology service is subject to a significant amount of work to improve its operational situation having been recognised as fragile since 2022. It said the executive board and ICB are well sighted on these challenges via the fragile services framework.
41. The Trust has not specified or provided us with further explanation on what work has been carried out since the gastroenterology service has been recognised as ‘fragile’ and what the outcome of this work has been.
42. The Trust outsourced some gastroenterology patients to a third-party provider to try and manage its long wait list. We cannot see that the Trust explored any other options to try to prioritise diagnosis and treatment for those with an urgent condition.
43. In line with the 2022 delivery plan, we find the Trust should have done more to look at alternative options which could have involved offering Ms R an alternative location with a shorter waiting time or considering private alternatives.
44. At the time the Trust processed Ms R’s referral, and spoke to her in April, its waiting list was 14 months long, and there is no evidence it advised her she could ask her GP for a referral elsewhere given the long wait time. We have also seen no evidence the Trust looked at whether any other NHS Trusts could see Ms R sooner.
45. Ms R’s appointment was upgraded to urgent in July 2022, and by August 2023 she still had not received an appointment. This shows the Trust’s waiting list for urgent appointments at this time was over 12 months, yet it still did not advise Ms R she could ask her GP for a referral elsewhere when it upgraded her referral to urgent.
46. By October 2022, the waiting list had increased to 18 months, and Mr A had contacted the Trust expressing concern for Ms R’s worsening condition, and the Trust still did not advise she could potentially go elsewhere, until late December, after Mr A complained.
47. Mr A says he recalls a conversation with a staff member at the GP Practice, who advised there was nothing that could be done as a referral had already been made, and they would have to keep chasing the Trust for an appointment.
48. We find the Trust should have done more for Ms R to try and ensure she was seen once her referral was upgraded to urgent. Ms R was reporting worsening symptoms and had to attend A&E during this time. The Trust could have considered options such as for Ms R to be seen at another Trust with a shorter waiting list or at a private provider and if it had she may have had an earlier consultation and surgery.
Impact Symptoms 49. While Ms R was waiting for an appointment, she says her condition worsened. She says each time she ate a meal or had more than a couple of sips of a drink, she would either be sick, or because the food or drink became stuck and caused a choking sensation, she would have to make herself sick. She says this affected her breathing, and was causing her severe heart burn and acid reflux.
50. She says she became so unwell she had no alternative but to use savings to pay for a private consultation. Ms R told us, during the time she waited for surgery, the constant build-up of acid reflux damaged the muscles in her oesophagus beyond repair. She says, although her hernia was repaired, her oesophagus still could not function properly to push food down and has left her with symptoms of this. She says food still gets lodged in her oesophagus, she cannot eat a lot, she must stay upright after eating, she sometimes vomits in the night having laid down, she feels full all the time, she often vomits after eating, and she must eat little and often and only mushy food. She says all this causes her pain and still impacts her breathing.
51. After her surgery, Ms R had a follow up appointment with her private consultant in August 2023 and reported an overall improvement in her symptoms.
52. In November 2023 her symptoms returned, and she was assessed by the consultant surgeon in January 2024. They arranged a scan for February 2024 which found she had a small recurrent hiatus hernia.
53. During a further appointment in April 2024, the consultant surgeon explained the additional hernia was too small to account for any obstructive symptoms and thought it more likely her oesophagus was to blame for her occasional dysphagia.
54. The consultant surgeon suggested excluding gallstones with an ultrasound which Ms R had in May 2024. This did not find gallstones, and it does not appear any action was taken after this.
55. In April 2023 Ms R elected for a hiatus hernia repair without an anti-reflux procedure, because of the further delay this would cause for manometry to take place (a swallowing test that can help determine if your oesophagus is able to move food to your stomach normally). Mr A told us the surgeon and anaesthetist did not recommend Ms R have the anti-reflux procedure due to problems with her breathing and the pressure it would put on her heart, so she decided not to have it based on their clinical advice.
56. On her 2021 gastroscopy, there was no evidence of injury to the oesophagus by reflux of acid and the biopsies taken also showed no injury. Our surgical adviser said this means the reflux was not injuring her lower oesophagus, this is the major issue which a hiatus hernia can cause which would produce lasting problems in the oesophagus. This was not the case for Ms R.
57. Our gastroenterologist adviser said a proportion of people with a large hiatus hernia will also have or develop an oesophageal motility disorder condition (conditions where the oesophagus does not function properly, affecting the movement of food and liquids to the stomach). This is possible but has not been proven in Ms R’s case and she would need oesophageal manometry to do so.
58. Our gastroenterology adviser said her ongoing symptoms could have one or more of three causes:
• recurrent hiatus hernia • oesophageal motility disorder • ongoing gastro-oesophageal reflux (given that the operation would not have cured reflux).
59. Our gastroenterology adviser said without more tests, it is not possible to say which is the key issue.
60. The surgery Ms R had aims to reposition the stomach back into its proper position and to try and prevent the hernia from reoccurring. As Ms R did not have the anti-reflux procedure, we cannot say the reflux symptoms she has experienced could have been avoided.
Breathing 61. Ms R has COPD which predisposes people to lung collapse and infections and, unfortunately, is likely to progress over time.
62. In early September Ms R had a CT virtual colonography to check for gastrointestinal cancer, and this found a collapse in the middle lobe of her right lung, potentially caused by additional hernias in the left flank (between the lower ribs and the pelvis). Ms R has COPD and says her breathing became much worse.
63. Our gastroenterologist adviser said hiatus hernias can cause compression of the lung tissue as the stomach sits in the chest and occupies space. They said it is likely the hiatus hernia would have made the symptoms of breathlessness worse while Ms R was waiting for her surgery as most of the stomach was in the chest, the lungs are being squashed.
64. Our gastroenterologist adviser said if the hiatus hernia was the cause of her breathlessness, you would expect this to be substantially improved after her surgery which does not appear to have happened given her 2024 COPD referral by her GP. This may suggest that her breathing deteriorated as her lung disease progressed and this was unaffected by the wait for her hiatus hernia surgery.
65. Our gastroenterologist adviser said they do not think there would be any lasting impact on her lung function from the hiatus hernia, and any remaining symptoms are more likely due to her COPD.
Emotional 66. We also considered the emotional impact on Ms R. She told us she has had a fear of hospitals since 2004 when she nearly died after a medical procedure. She also says since 2004 she has suffered with obsessive compulsive disorder (OCD), depression and anxiety, has been on antidepressants and also received counselling.
67. She says she was very distressed and worried about her symptoms worsening and was very concerned about her health. Ms R says she was becoming really unwell and there was a lot of uncertainty around when she would receive any care, therefore, she felt she had no alternative but to use her savings to pay for a private consultation.
68. We recognise the Trust is not meeting waiting time expectations. It is difficult for us to criticise the Trust on not expediting Ms R’s referral when she was a routine patient, but the Trust could have explored more options when she was upgraded to urgent.
69. Ms R was on the waiting list as a routine patient in April 2022, was upgraded to urgent in July 2022 and had surgery in April 2023. She was an urgent patient for nine months before she had surgery.
70. In total, it took three and a half months from the time Ms R had her first private gastroenterology consultation until she had her hernia surgery.
71. It is impossible for us to ever say whether Ms R would have been seen sooner if the Trust had explored other options. However, we recognise she was left feeling like nobody was prioritising or concerned about her.
72. Ms R was proactively engaging in her care and was trying to secure NHS treatment, when this was unsuccessful, we understand why she felt she had no choice but to seek private care.
73. We consider Ms R experienced distress and worry from July 2022 until April 2023 whilst she was also experiencing worsening symptoms, without being seen by gastroenterology.