16. When we look to decide if there was a failing in the care complained about, we first consider what should have happened in line with relevant policies, guidelines, standards and good clinical practice. We then use all available evidence to decide if what should have happened, did happen. If it did not, we decide if what did happen fell so short of the expected standards that it was a failing.
17. If we find there has been a failing, we then consider the impact of this failing. If the failing had a negative impact on the person affected, we consider what actions the organisation has already taken to put things right. If we think it has not done enough to put things right, we may make recommendations for further action.
Pectus surgery
18. Mrs O’s application for funding (after the CCG told her surgery would not be done on the NHS) was declined on the basis that Mr R was not considered to be exceptional. There was no national policy for the commissioning of pectus surgery at the time of Mr R’s first referral. In February 2019, a national policy was put in place that decided the evidence found was not enough to say the benefits of surgical treatment of pectus deformities justified its use. This meant the surgery was no longer routinely commissioned. The family later chose to self-fund the operation.
19. The CCG has accepted the advice it gave to Mrs O in October 2018 was wrong and this was a failing. This is because it accepts that before February 2019 surgery for pectus excavatum was routinely funded and did not need an application. But, it says despite its wrong advice Mr R would not meet the criteria to have the surgery, so its advice did not affect his treatment.
20. Our adviser explained that in most cases pectus deformities are mild to moderate with no need for clinical attention. They note that in a smaller number of children, it can lead to physiological disturbance like cardiorespiratory imbalance. Treatment options range from counselling, physiotherapy and bracing to surgery on physiological or psychological bases, before the NHS review in February 2019.
21. Our adviser highlighted that although the review document was released in February, the preparation and time the policy was under review would have been when Mr R was trying to get treatment for his pectus excavatum. Due to this, the guidance on whether to do surgery would not have been as clear as usual.
22. On review of the clinical documents, our adviser noted that some consultants describe Mr R as having a ‘mild’ form of pectus deformity, with normal test results and no specific cause for his breathlessness. They highlighted that the surgeon noted the ‘way he [Mr R] looks’ was part of the reason for surgery.
23. But, we note it was not as clear as this and the available evidence supports different clinical views. Mrs O provided a letter from the cardiothoracic surgeon who did the surgery privately, but who also works for the NHS. They state that Mr R would have met the criteria for the surgery in 2018, as his pectus excavatum was ‘severe’ and ‘symptomatic’.
24. We can see that a paediatric consultant was surprised that Mr R was refused surgery as they had seen similar cases who went on to have surgery. The consultant goes on to describe Mr R as having a moderate pectus deformity in a letter dated 30 December 2019. We note that a GP at Mr R’s practice also described it as ‘moderate’ in July 2020. Another consultant in child health described his condition as ‘significant’ in September 2019, as did a consultant thoracic surgeon at another NHS Trust in October 2020.
25. Our adviser thought it was reasonable to say Mr R had a ‘mild’ pectus excavatum. We can see that this opinion was supported by comments made by a consultant in child health in July 2021 and a paediatric consultant and a different GP in September 2020.
26. Our adviser says before February 2019 the available literature, as stated in the current policy, says that mild forms of pectus excavatum do not always need surgery and the need for intervention based on mental health is only partly supported. They also highlighted that intervention would not necessarily be surgery but could include counselling or physiotherapy. They concluded there was no evidence to support surgery and he would not have met criteria for treatment at that time. This is confirmed in the policy, which highlights in ‘most cases surgical intervention does not take place, as the majority of people experience only mild physical or psychological symptoms associated with having a pectus deformity’, and that non-surgical treatment options include posture, exercise programmes, bracing and psychological support.
27. We note the CCG advised that although the procedure was routinely commissioned, patients were required to meet the criteria for surgery. They explain NHS England consider psychological factors but as an exception, so there is no guarantee the surgery would have been provided.
28. We have seen an email from NHS England which says there, ‘were no access restrictions set through any adherence to policy’ and as there were no published criteria for surgery, the decision to offer surgery was based on clinical assessments and discussions with the patient and family about expectations and risks. We would expect a holistic assessment (taking everything into account) by the clinician involved in the person’s care.
29. We looked at what would have happened if Mr R had been considered for routinely funded surgery. NHS England advised the specialist provider for surgery in the area was UHBW, with any other activity being the responsibility of the patient’s CCG.
30. UHBW confirmed small amounts of pectus surgery were completed by it around this time, with assessment completed on a case-by-case basis with no agreed local or national criteria. The NHS England 2015 evidence review for surgical correction of pectus deformity does not state any clear eligibility thresholds for surgery, although it explains self-perception has been found as an important element in decision making. We cannot say what would have happened during an assessment and note overall assessment and treatment seems to be down to the surgeon’s decision.
31. We have seen there was a large variation in medical opinion on the suitability of Mr R for the surgery. There was also a lack of clear guidance on what the criteria for surgery was, but it seems this was based on case-by-case assessment by the surgeon or clinical team involved.
32. We cannot say whether Mr R would have qualified for the surgery if the family had been given the correct advice at the time of the first referral. But, we can see there was a possibility he would have been, depending on the surgeon’s opinion.
33. We can say if the CCG had given Mrs O the correct information, Mr R would have had the opportunity to have a proper assessment while the surgery was routinely commissioned by the NHS. This was a failing.
34. This caused distress and frustration as the family followed a funding and appeal process that was unnecessary and may have been avoided if the correct advice was given.