Great Ormond Street Hospital for Children NHS Foundation Trust

4. Mr A complains about aspects of the care and treatment clinicians at Great Ormond Street Hospital gave to his son C between 17 and 25 April 2023. He specifically says clinicians failed to follow medical instructions relating to the use of a tube that was intended to allow gas to leave his son’s stomach (this was an NG, nasogastric, tube). He says the clinicians allowed the tube to be closed (clamped).

5. Mr A believes this incident led to his son developing a twisted colon. He says this meant his son’s life was put and risk and he needed emergency surgery. He says this has left C needing life-saving surgery and with life-changing injuries.

6. Mr A wants the Trust to acknowledge its failings and apologise for the impact they had.

7. C (who was aged seven at the time of his admission to the Hospital) had a history of constipation and abdominal distension (swelling). He had episodes of bowel obstruction from 2021 onwards and had surgery at his local hospital. Local doctors referred C to the Hospital, where he was under the care of Dr R (Consultant Paediatric Gastroenterologist).

8. Dr R arranged further investigations. These highlighted that C had motility problems (meaning food and waste could not travel properly through his bowels) and aerophagia (excessive air swallowing) when eating. Dr R confirmed a diagnosis of retrograde cricopharyngeal dysfunction (R-CPD – a rare condition in which people are unable to burp). The plan was for Botox treatment during an admission to the Hospital.

9. C had the Botox treatment on 17 April 2023. There were no complications and C moved onto the ward. An NG tube was put in place for venting to avoid any build-up of gas in the abdomen (gastric decompression).

10. On 23 April 2023 C’s condition deteriorated. He started vomiting and had abdominal swelling and pain. Doctors identified a colonic volvulus (a twisting of the colon which causes an obstruction) and confirmed this with a CT scan. On 25 April doctors decided to carry out an emergency ileostomy (surgical opening of the abdominal wall to allow waste to leave the body). C recovered well from the procedure but remained in the Hospital for several weeks.

11. Mr A complained to the Trust about the issues in this investigation immediately after the events. He had other ongoing complaints and his correspondence with the Trust about these concerns continued until he contacted us about them in June 2024 because he was dissatisfied with the outcome.

15. Mr A believes nurses allowed C’s NG tube to be closed, which he said went against medical instructions. He understood the tube was meant to remain open for one week after the treatment on 17 April 2023.

16. There are no specific standards which apply to nurses in relation to the issues in this complaint, nor are there any specific national standards that apply to using NG tubes for venting for gastric decompression. While there have been various international studies and articles about managing RCP-D there are no accepted standards or guidelines for clinicians working in the NHS in England. There are no established guidelines about the optimum duration of venting to prevent complications from RCP-D.

17. Good Medical Practice says doctors must provide a good standard of care. This includes carrying out adequate assessments, taking account of the patient’s history and examining them if necessary. Doctors should also arrange timely treatment and appropriate investigations or referrals if needed. It says clinical records should include relevant clinical findings, the decisions made, and actions agreed. Records should include any investigations or treatment.

18. The NMC Code contains the professional standards that nurses must uphold. It says nurses should prioritise people, practice effectively, preserve safety and promote professionalism and trust. The NMC Code also says nurses must maintain effective communication with colleagues and work with them to preserve the safety of those receiving care.

19. The clinical records for the admission we have investigated do not contain any instructions for nurses about managing the NG tube that was replaced following the procedure C had on 17 April 2023. The first reference we can find to clamping the tube was on 21 April where it was mentioned in the discharge plan. On 22 April there was a reference to the tube being used for venting and being clamped. On 23 April a nurse observed that intermittent clamping was to start, but there is no record of a medical instruction to that effect.

20. The clinical records do not contain specific instructions for the tube to be kept open for venting. The Nursing Adviser told us that if there were specific instructions these would have been stated in the clinical records. But we cannot see that this was the case and consider the nurses followed the NMC Code.

21. Complaints correspondence indicates the initial plan appears to have been to clamp the tube for short intervals and gradually increase the duration of clamping as tolerated. However, when doctors observed worsening distension on 23 April 2023, they revised the plan to keep the tube on free drainage with aspiration every four hours. There is no evidence in the clinical records that this plan was documented.

22. We can see that Mr A expressed concern to clinicians during the time the tube appeared to have been clamped when it was meant to be on free drainage. The records do not clearly indicate when the tube was clamped or for how long. As there are no specific standards about venting and clamping, or whether the status of the tube needs to be documented, we would not expect this information to be recorded.

23. As we have said above, the Medical Adviser told us there are no specific national guidelines or recommendations about the use of venting to try and achieve gastric decompression. They said evidence does not definitively establish whether continuous venting is superior to intermittent venting. The Medical Adviser said there are no documented cases of harm being reported from improper use of NG tubes for venting. There is no evidence to suggest intermittent clamping of an NG tube increases the risk of complications, such as volvulus. C was at risk of volvulus because of his primary medical condition. His previous bowel surgery increased that risk.

24. The Medical Adviser said leaving the tube open would present significant practical challenges. Stomach contents would leak onto the bed and clothing. It would also be difficult for the patient to retain medication and nutrition.

25. The Medical Adviser told us doctors appeared to respond to C’s evolving critical condition in line with established practice and available evidence. They accurately diagnosed C’s medical issues and developed management plans in collaboration with other professionals, including local teams, and in partnership with C’s carer. There is no clear evidence to suggest that if the tube had not been clamped C would have avoided the volvulus.

26. Doctors should have documented the plan for using the NG tube for C. They did not follow Good Medical Practice in this respect because agreed actions and details of treatment should be documented. But there is no suggestion anywhere in the clinical records that the plan was to keep the NG tube continuously open. This means that, even if the plan had been documented, it would have resulted in clinicians clamping the NG tube. There is no indication that using the tube in this way was inappropriate.

27. We find doctors generally provided care in line with standards expected in GMC Good Medical Practice. We have seen they carried out adequate assessments for C and arranged timely investigations and treatment for him. But they fell below this standard by not documenting the management plan. We cannot say this led to any of the health problems C later experienced.

28. There is no evidence that nurses failed to practice effectively or did not work with colleagues to preserve C’s safety. We find nurses followed the NMC Code.

1. Mr A complains about aspects of the care clinicians at Great Ormond Street Hospital (the Hospital) gave to his son C in April 2023. We were sorry to hear about C’s health problems and appreciate this was a distressing time for Mr A.

2. In general, we find clinicians followed the relevant standards when providing the care we have investigated. The exception is that doctors did not document a clear plan for the management of C’s NG tube during his admission to the Hospital. We cannot see that this had any impact on C’s health.

3. We partly uphold Mr A’s complaint. We recommend the Trust produces an action plan to ensure there is learning from what happened.

29. We make recommendations in line with our Principles for Remedy which say public bodies should acknowledge failures, apologise, make amends, and use the opportunity to improve their services. The Principles say we aim to ensure the public body puts the complainant back in the position they would have been in had nothing gone wrong. If that is not possible, the public body should compensate them appropriately.

30. We cannot see the failing we have found led to any injustice or hardship for C or Mr A. This means we are not making any recommendations for a personal remedy.

31. Our complaint standards say public organisations should look for continuous improvement and should use the lessons learnt from complaints to make sure they do not repeat maladministration or poor service.

32. Within two months of the date of this report, the Trust should produce an action plan to describe what it has done or will do to improve the specific issues relating to the lack of a clear management plan. We will need to see evidence to show the Trust is ensuring doctors at the Trust will make and document appropriate management plans for post-procedure care.

33. The action plan should, where possible, identify the reasons for the failings. It should explain the learning the Trust has taken from these issues; what it will do differently in future; who is responsible and timescales for each action; and how it will monitor these. The Trust should provide a copy of this action plan to us, Mr A, the Care Quality Commission (CQC) and NHS Improvement.

Conclusion

34. We recognise Mr A has strong views that clinicians did not provide his son with appropriate treatment in April 2023. We appreciate how stressful the circumstances of C’s admission were for him and his father. We have seen no evidence to suggest there were any failings in care and treatment that could have had an adverse effect on C’s health. But we have seen that doctors should have clearly documented the medical treatment plan. They did not do so, and while this did not have any impact, we consider the Trust should take action to ensure this is not repeated for other patients.

35. We partly uphold Mr A’s complaint.