The Practice
23. Miss I complained about the care provided by a nurse and a GP during the period February to April 2018. NHS England (NHSE) investigated and responded to the complaint on 26 May 2021.
24. The relevant standards which apply here are the General Medical Council’s (GMC) Good Medical Practice (2013). These state,
“15 You must provide a good standard of practice and care. If you assess, diagnose or treat patients, you must: a 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 b promptly provide or arrange suitable advice, investigations or treatment where necessary c refer a patient to another practitioner when this serves the patient’s needs”
25. Taking into account the advice from our GP adviser, the nurse assessment on 15 February 2018 was carried out in-line with this standard. The nurse took a history and noted O had a 2-3 week history of symptoms when swallowing/eating. There is no mention of weight loss at this point. She was examined and her throat and abdomen were normal. The nurse made a diagnosis of dyspepsia and prescribed appropriate medication to relieve this. She was advised to see a GP for follow-up. A stool sample was also suggested. Our GP adviser said on this attendance there was no need to weigh O as no concern about weight loss was recorded then, and she looked well on examination. Our GP said that dyspepsia was a reasonable working diagnosis with symptoms being present for at most three weeks and related to eating.
26. O saw the same nurse again on 23 March with ongoing symptoms. She now had no appetite, tiredness and weight loss. Her weight was recorded at 47kg, blood tests were arranged, and she was advised to see a GP. This consultation was again in-line with the above GMC guidance as the nurse carried out a suitable assessment and investigations were arranged. It was appropriate for O to be referred to a GP as she had ongoing symptoms.
27. A GP saw O on 6 April. By now she had been unwell for several weeks. Her symptoms were bringing up frothy phlegm after food, lack of appetite, weight loss, lower back pains and lack of energy. She was examined and her abdomen felt normal. Her weight was 43 kg. Blood tests were pending due to be taken on 17 April. Stronger medication to reduce stomach acid was prescribed, and the plan was to review O following her blood test results with a paediatric referral if her symptoms were ongoing.
28. NHS England (NHSE) said in its complaint response that the GP should have sought paediatric advice on 6 April 2018. Our GP adviser said there is no national guidance for this presentation, other than GMC Good Medical Practice. Our GP adviser said this is a situation where there would have a range of practice. Some GPs would have referred O to a paediatrician on the basis she had lost 4 kg in two weeks, others would have seen if the stronger medication resolved O’s symptoms and waited for the blood test results. Our GP adviser said either would have been in-line with the above Good Medical Practice.
29. We recognise that NHSE said there was a missed opportunity for the GP to seek paediatric advice. However, we do not consider that this shortcoming in care had any impact on O’s outcome who was subsequently seen by doctors at the Trust on 10, 16 and 30 April 2018.
30. In the circumstances, we find there were no significant failings on the part of the Practice regarding O’s care and treatment. Therefore, we do not uphold this complaint.
The Princess Alexandra Hospital NHS Trust
31. We have considered what happened and what should have happened when O attended the Trust’s emergency department (ED) on 10, 16 and 30 April 2018.
Attendance on 10 April 2018
32. The nurse’s triage notes at 9.33pm, state that O had been ‘treated by the GP for reflux’ and had ‘lost over one stone in five weeks’. There were also complaints of ‘constant pain down her back’ and ‘vomiting bile every time she eats’. The nurse took O’s observations and an EM doctor then assessed O at 10pm. The doctor documented that there were complaints of vomiting bile acid, abdominal pain and loss of weight.
33. On examination the EM doctor noted that O’s abdomen was soft and non-tender with no abnormalities in the kidney areas. The EM doctor made a diagnosis of ‘gastritis/acid reflux’. To investigate this further blood tests were undertaken. The doctor discharged O with antacid medication and a plan for GP follow-up was made.
34. We note that both the triage and doctor’s documentation indicate O had suffered weight loss. Our EM adviser explained that weight loss is an indicator of systemic illness and ‘bile acid’ can be an indicator of significant disease. However, there is no evidence that the doctor explored the history of weight loss or vomiting in more detail. We also note that O was not weighed despite her history of weight loss.
35. We further note that there is no record of a previous medical history, drug history, social history or immunisation history. We would expect the EM doctor to explore and document all aspects of a paediatric assessment. We note that the EM doctor has only documented the abdominal examination. However, our EM adviser said due to O’s history of back pain and weight loss there should have been a systematic examination of all body systems and a neurological examination to include an examination of the back. This would have been in line with GMC Good Medical Practice which states “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”.
36. Our EM adviser said the doctor should have referred O to the general paediatric team for further assessment. This was indicated as O demonstrated signs of serious illness. Specifically, these were unintentional significant weight loss, constant back pain, vomiting and skin paleness. This referral would have been in line with The National Institute of Health and Care Excellence (NICE), clinical knowledge summary ‘Scenario: back pain in children’. This guidance states ‘consider referring children with back pain for specialist assessment if there is pain lasting greater than two weeks or worsening or significant unexplained weight loss’. Whilst this guidance was introduced in 2019 it was based on evidence of what was considered good practice. This is supported by the above best practice article ‘The investigation and management of back pain in children’.
37. In view of the above, we find the doctor’s assessment carried out on this attendance was far below the standard expected and O should have been referred to the paediatric team and admitted for more investigation. We have considered below the impact of these failings.
Attendance on 16 April 2018
38. O arrived in the ED at 1.16pm. The nurse’s triage note documents that there has been ‘nil improvement’ and O ‘continues to refuse to eat or drink’. The pain is also described as ‘continuous’.
39. An EM doctor assessed O at 3pm. The EM doctor noted there had been ‘recurrent vomiting and reduced oral intake for six weeks’. This is associated with ‘bilious vomiting after every meal’ and ‘weight loss of 1 stone in less than 4 weeks’. No abdominal pain was reported. There is no history of fever or neck pain. The notes described that ‘mother wants to see the paediatric team’.
40. The EM doctor’s examination revealed that O looked ‘cachectic’ (this describes physical wasting with loss of weight and muscle mass due to disease). No abnormalities were detected on respiratory, abdominal or throat examination. The doctor referred O to the on call paediatric doctor who accepted the referral and agreed to review the patient. This referral was in line with the above guidance.
41. A paediatric doctor (FY1) from the general paediatric team assessed O. Our paediatrician adviser explained a FY1 doctor is in their first year after qualifying from medical school, and their specialist expertise is very limited. They are meant to be closely supervised, and all their patients reviewed and discussed with a more senior paediatrician.
42. The FY1 doctor obtained a history which focused on the gastrointestinal symptoms, establishing O’s inability (rather than refusal) to eat, ongoing weight loss and lack of response to treatment with ondansetron and omeprazole (antacid medication). The doctor checked at least two possible signs of malignancy - dysphagia (difficulty in swallowing) and night sweats which according to them were not present at the time. The doctor mentioned the back ache but there is no exploration of this in the history or the examination. The FY1 doctor makes no mention of O’s nutritional state. The doctor gave no diagnosis and states that helicobacter pylori infection (which causes dyspepsia and stomach ulcers) should be excluded.
43. There is a record that O’s case was discussed with another doctor, without stating their speciality or level of experience. There is no evidence to show that O was assessed by a senior paediatrician. The recommendation was to obtain blood tests (which are not recorded), a helicobacter stool test, and a review in 2 weeks.
44. Our paediatrician adviser said a comprehensive medical history, exploring each symptom in detail as well as covering general health would have been the first step of a paediatric assessment. This should have been followed by a general examination (it is a convention in paediatrics to do a ‘whole systems’ examination including ear/nose/throat, chest, heart, abdomen, orientating neurological examination, lymph nodes, skin; and to document this) and examination of systems specific to the presenting symptoms (e.g. in O’s case, her back).
45. Our paediatrician adviser explained the diagnostic process would then formulate the information from history and examination into a clinical diagnosis or a differential diagnosis, and further investigations would be planned accordingly. It should have been clear from a consideration and examination of the history of abdominal pain, vomiting, ‘reflux’ not responding to treatment, and accompanied by a weight loss of more than 6 kg, that these were unusual for a diagnosis of a simple gastritis; and persistent severe back ache would be unusual for a healthy teenager with no risk factors or a history of trauma/injury.
46. Whilst O’s symptoms indicated ‘red flags’ for possible malignancy at the time (which the Trust has accepted), our paediatrician adviser said it would be up to the judgement of the most senior clinician at the time which differential diagnoses to include in deciding on the investigations to be done. Besides possible malignancy, clinicians could have considered several other differential diagnoses (and investigation approaches). Our paediatrician adviser explained that to carry out investigations into potential causes of O’s symptoms, a child would usually be admitted to hospital, including having a review by a consultant paediatrician within 24 hours of admission (RCPCH standard of care). This did not happen.
47. We consider this was a further missed opportunity to undertake an appropriate assessment of O’s symptoms. It is clear from our paediatrician adviser’s advice that the paediatric assessment was inadequate, and there was no direct assessment or review by a senior paediatrician despite O re-presenting with worsening symptoms within days of the initial attendance. This was not in line with the above RCPCH service delivery standards.
48. In view of the above, we find the paediatric assessment on this occasion fell below the expected standard and was a failing on the part of the Trust. We have considered the impact of this failing below.
Attendance on 30 April 2018
49. The nurse’s triage note indicates O’s GP had referred her to the Trust. The referral letter stated, ‘low back pain especially at night’ and ‘wakes in night sometimes pain lower back’. The letter also states ‘8kg weight loss ?cause’. The triage note describes ‘ongoing weight loss’. The nurse also documented the reports of O being ‘very lethargic’ and ‘not been at school for 6 weeks’.
50. The ED doctor’s physical examination demonstrated a ‘reduced range of movement in the spine’. The clinician discussed the patient with the paediatric registrar and they agreed that the patient should be seen acutely in ‘CAS’ (clinical assessment service).
51. O was seen by a paediatric doctor but their seniority is not stated. At this time, the main symptoms were back pain and weight loss. The paediatric doctor records in their history that O is an avid runner (though not that she was unable to do so because of fatigue), that she ‘admits’ to very little food consumption, she ‘doesn’t like when her bones are poking out’, that she has ‘no periods yet’, and ‘has not attended school’. There is no further exploration at all of the gastrointestinal symptoms or the backache.
52. The paediatric doctor made a referral to the mental health crisis team as they considered O may have an eating disorder. There is clear guidance for paediatricians to approach suspected eating disorder. At the time of O’s presentation these were the JUNIOR MARSIPAN guidelines. It is clear that the paediatric team at the time did not follow these guidelines and there is no mention of them in the records.
53. Our paediatrician adviser explained the key exploration in the process to initiate or not a risk assessment for an eating disorder is whether eating behaviours are disordered or not. In patients with eating disorders, there usually is food avoidance, deliberate vomiting and sometimes binging/vomiting. There is a body image misperception where patients try to lose weight because they perceive themselves as overweight. There commonly is a high level of uncontrolled exercising, and an active avoidance to engage with professionals coupled with poor insight into the issues and low motivation to change.
54. Our paediatrician adviser said from the documented history O had features that rather contradicted an eating disorder: She was trying to eat and physically could not, she actively sought help, she had to stop exercising because she became too weak, and there was no indication of distorted body image.
55. Our paediatrician adviser explained that the NICE guideline on eating disorders is explicit in the differential diagnoses to be considered or excluded before confirming an eating disorder, which does include malignancy. The junior MARSIPAN guidelines recommend the clinician needs to undertake a structured risk assessment which includes assessment of body mass index, cardiovascular health/ECG, hydration status, body temperature, biochemical abnormalities, calculation of daily calorie intake, assessment of disordered eating behaviours, engagement with management plan, activity and exercise, self-harm and suicide, presence of other mental health diagnoses. O had only some of these assessments. However, our paediatrician adviser said none of the findings would support a diagnosis of an eating disorder in her. Despite this, O was referred for an assessment to the mental health crisis team which did not identify any mental health concerns but stated that ‘O could benefit from referral to EDS (Eating Disorder Service)’.
56. The records state that O’s case was discussed with a paediatric consultant who appears to agree with the suspected diagnosis of an eating disorder, and a referral to the eating disorder service. There is a plan for consultant review made but there is no documentation that this ever happened. A further plan is documented to refer O to the mental health crisis team.
57. Again, the evidence indicates the paediatric assessment was repeatedly inadequate in not sufficiently exploring O’s symptoms in the medical history, not conducting an appropriate physical examination, not considering an appropriate differential diagnosis and initiating relevant investigations, and not ensuring a review by a senior paediatrician.
58. We find there were failings on the part of the Trust regarding this attendance and we have considered the impact of these below.
Impact
59. We have identified the following failings in O’s care, • failure to adequately assess O in the ED on 10 April 2018 • failure to refer O for further assessment by the general paediatric team on 10 April • failure by the general paediatric team to adequately assess O on 16 and 30 April • inappropriate referral to MH Team regarding eating disorder on 30 April.
60. We have considered what impact the above failings had on O and Miss I.
61. Whilst O’s symptoms in April 2018 indicated ‘red flags’ for possible malignancy at the time (which the Trust has accepted), it would be up to the judgement of the most senior clinician at the time which differential diagnoses to include in deciding what investigations to carry out. Our paediatrician adviser said besides possible malignancy, the paediatrician could have considered several other differential diagnoses, none of which were sufficiently explored.
62. Our paediatrician adviser explained that to carry out investigations into potential causes of O’s symptoms, a child would usually be admitted to hospital, including having a review by a consultant paediatrician within 24 hours of admission (RCPCH standard of care). Because it cannot be predicted which investigations a paediatrician would have initiated (this depends on individual clinical judgement), and how long it would take to obtain results, it is not possible to say how much earlier a cancer diagnosis would have been made. O may not have stayed in hospital until all investigations would be completed, but she would only have been discharged if deemed clinically well, and with a firm schedule for investigations and plan in place for follow-up.
63. In the circumstances, taking into account our paediatrician adviser’s advice, we are not able to say how much sooner O’s cancer may have been diagnosed if she had been admitted for further assessment and investigations. However, bearing in mind she was diagnosed within a short period in May 2018 it is reasonable to think had she been admitted in April and undergone investigations her cancer is likely to have been diagnosed sooner than it was.
64. Miss I is uncertain if any delay in diagnosing O’s cancer affected her chances of a better outcome. The Trust has said that it is unable to say if O’s outcome would have been any different if she had been diagnosed two weeks earlier.
65. Our oncologist adviser explained that O had a soft tissue sarcoma (a rare type of cancer that starts in soft tissue, such as muscle and fat). It can start from muscles anywhere in the body and probably started from muscle tissue somewhere in the abdomen or pelvis. The cancer had spread both locally and to other parts of the body and arose in an unfavourable site, with unfavourable pathology. Our oncologist adviser said it could be treated and O did respond to chemotherapy initially. However, all these factors meant it had a poor prognosis and therefore it would not have been unexpected that the cancer started to progress during treatment. Our oncologist adviser said it is always difficult to say what the life expectancy is at the time of diagnosis because that depends on response and whether, as in O’s case, there is then progression of cancer during treatment.
66. When O was diagnosed her cancer was at stage IV as it had spread to distal nodes in the chest/in the centre called the mediastinum and to nodes in the neck. There was also spread to her left lung.
67. Our oncologist adviser said that when O attended the ED in April 2018 it is likely that with her symptoms and significant weight loss that the tumour had already spread as demonstrated on her scans in May 2018. They said the chemotherapy treatment she received would have been the same as would her further treatment of radiotherapy.
68. Our oncologist adviser said O’s prognosis depended on the type of cancer she had, the site of origin( abdomen or pelvis which are unfavourable sites) and the fact it was stage IV. Our oncologist adviser said none of these factors would have been different if she had been diagnosed up to five weeks earlier and her prognosis would have remained poor and the same as when she was diagnosed in May 2018.
69. In the circumstances, our view is even if O had received optimum treatment in April 2018 and had been diagnosed sooner it would not have changed her sad outcome due to the nature and advanced stage of her cancer. That said, had she been diagnosed in April her presenting symptoms could have been treated sooner such as the pain and help with nutrition for her weight loss. It may also have provided some assurance to Miss I and O that their concerns were being listened to at what was an extremely distressing and anxious time for them. This is particularly relevant bearing in mind O was referred to mental health services regarding a potential eating disorder which only added to their anxiety and left O feeling humiliated.
70. It is clear from discussions with Miss I that the loss of O has had a devastating effect on her and the family. Whilst the failings in care did not impact on O’s sad outcome, it will be a source of significant distress to Miss I that the care and treatment provided by the Trust’s ED and paediatric teams fell far below the expected standards on each of the three occasions she attended the hospital. We recognise that the lack of adequate assessment, being sent home on each occasion and the referral to mental health services must have caused significant anxiety and worry to Miss I and O.
71. The Trust has acknowledged in its letters dated 25 February 2021 and 27 January 2022 that there were failings in the care it provided to O. The Trust has apologised for the distress caused by these failings. It has also indicated some of the actions it took as a result of the complaint although these lack detail. We do not consider the Trust actions have fully addressed the injustice suffered by Miss I. We have therefore made further recommendations below to address this.