NUH
24. Ms R complains NUH delayed sharing the results of her son’s routine lumbar puncture on 11 January 2019.
25. NUH said it carried out a routine lumbar puncture on L on 11 January, but the results were not available until 30 January. It said an error caused this delay.
26. NUH said the cells from the lumbar puncture looked atypical and staff were concerned L had experienced a central nervous system relapse of ALL. At this point a further lumbar puncture needed to be carried out, but six weeks needed to be left in between. It explained this is because it had already administered L with a dose of chemotherapy on 11 January and this could have potentially partially treated any low level central nervous system leukaemia relapse. Therefore, NUH needed to allow time for the chemotherapy to take effect before carrying out a further lumbar puncture.
27. GMC guidance says doctors should promptly provide or arrange suitable advice, investigations or treatment where necessary.
28. Our adviser explained that 19 days is significantly longer than the desired turnaround time for samples. Our adviser explained that examining samples of cerebrospinal fluid in this context is to see if there are leukaemia cells in the fluid, and this requires prompt action.
29. Taking into account the evidence we have seen, we find the NUH took 19 days to report on the lumbar puncture and this is a failing. It was not in line with the guidance to provide or arrange investigations promptly. We have carefully considered the impact stemming from this.
30. Ms R is concerned the 19 days between the lumbar puncture and the results delayed the start of treatment for the relapse. Ms R has said NUH’s actions led to L’s death. She has told us of devastating consequences L’s death has had on her and her whole family.
31. NUH said L responded well to the re-introduction of treatment and his cerebrospinal fluid was cleared of leukaemia cells.
32. Our adviser explained the sample from 11 January was not conclusive of a central nervous system relapse. They also explained at the time the sample had been taken NUH had administered methotrexate (a type of chemotherapy) and if the lumbar puncture is repeated too soon after it may give a false negative. This is because it may falsely appear that the cerebrospinal fluid is clear of the disease.
33. Our adviser explained it is standard practice in the UK to wait four to six weeks in this situation to repeat the lumbar puncture if the child is asymptomatic, as L was. Our adviser said there was no delay in the repeat lumbar puncture. They explained had the initial sample been reported on sooner L would have still had to wait four to six weeks for the repeat lumbar puncture which took place on 22 February, six weeks from the lumbar puncture on 11 January.
34. Ms R has told us that knowing NUH made mistakes in L’s care made it impossible to grieve or to come to terms with his death and caused her to lose faith in NUH. We are truly sorry to hear what Ms R and her family have been through. She has told us how distressing it has been knowing her son did not receive the care he deserved.
35. Ms R has also told us the only reason NUH revisited the results of the lumbar puncture 19 days later was because she had brought L into hospital because had had been feeling unwell. She says it was unacceptable for the delay, even if there was no clinical impact as it caused her to question the care he had received.
36. Taking into account Ms R’s concerns and the advice we have received; we have not seen evidence to support the view the delayed reporting had a clinical impact on L. Ms R told us knowing NUH made an error in L’s care caused her to question the care he received and caused her, and her family distress and we accept the failing we identified had an emotional impact on her.
37. As part of our work, we have considered what action NUH has taken to remedy this complaint for Ms R. We can see in its complaint response NUH apologised for the error and has confirmed it was not acceptable.
38. Following Ms R’s complaint, it investigated what happened and introduced a new procedure to make sure it does not happen again. NUH has explained it now shares a copy of the patient procedure list along with the samples to the laboratory to serve as a second check on what samples are expected and what has been received. It said it would also be reviewing results from the previous ten days on the ward round meeting on Monday mornings, if any results are not available, they will be chased immediately.
39. Our principles state that public organisations should put things right and, if possible, return the person affected to the position they would have been in if the poor service had not occurred. If that is not possible, they should compensate them appropriately.
40. To decide on a level of financial remedy, we review similar cases where the person has experienced similar injustice, along with our severity of injustice scale. Following this review, we recommend within four weeks NUH should pay Mrs R £600 in recognition of the distress and upset caused by the failing we have identified.
41. We know how concerning this time must have been for Ms R and her family, and that knowing L’s care was not in line with guidance exacerbated their distress at an already very difficult time. Ms R has told us how errors in his care caused her to lose faith in the team caring for L and we do not underestimate the psychological impact this had on her and her family. We hope our work helps assure her, that while there was an error in the lumbar puncture being reported, we did not find it impacted the treatment he received.
BWC
Steroid medication
42. Ms R complains BWC prematurely stopped L’s steroid medication following a bone marrow transplant in July 2019. She says this caused him to suffer complications following the transplant which led to his sad death.
43. We have reviewed L’s medical records. We can see BWC started steroid treatment for engraftment syndrome on 22 May 2019. This is a complication of a bone marrow transplant and can be treated with steroids. BWC administered 1mg/kg intravenous methylprednisolone.
44. On 4 June BWC restarted steroid treatment as it thought L may have GvHD. The records say L had crackles on his chest and after starting the steroids his chest was consistently clear on examination. However, when the steroids were reduced, the symptoms recurred. BWC termed L to be steroid dependent and so an ECP was requested. This was started on 19 June. The steroids were stopped on 10 July, after a five week course.
45. Our adviser said as soon as it is evident there is a steroid dependence it is essential that GvHD therapy is escalated and ECP therapy was the next appropriate step and is in line with NHS England guidance on treatment for GvHD. The guidance says NHS England will commission ECP when patients have continued or relapsed clinical features of acute GvHD and are steroid dependent or if they show an incomplete response to first line treatment.
46. The NHS England guidance on GvHD highlights a study which explains there is an improved survival rate in paediatric patients when steroids are weaned rapidly once ECP is started. The study says there is an improved survival rate when steroids have been tapered by at least 1.3mg/kg 30 days from starting ECP.
47. Our adviser said one of the goals of managing acute GvHD in this case was to wean L off steroids promptly. Our adviser said the records show he responded well to ECP as his chest was clear after the steroids were stopped. Taking into account the evidence we have seen we have not found failings in BWC’s decision to stop steroids in July 2019.
48. We understand why Ms R was concerned that BWC stopped the steroid medication too soon. She has told us she thinks this should have continued for longer while L was receiving ECP. We have not seen evidence to support this view. We hope our work helps to reassure Ms R that the Trust gave L the correct care.
Discharge
49. Ms R complains BWC discharged L on 30 July 2019 when he had crackles on his chest and a high temperature. She said she told BWC staff on numerous occasions he needed an X-ray due to his compromised immune system and she tells us they should have taken more action. She said he was readmitted 24 hours later with breathing difficulties and sadly died seven days later.
50. BWC has said it could have done more to listen and hear Ms R’s concerns. It acknowledges she had concerns about L’s temperature at that time. It said there was no clinical indication L required further investigations and the decision to discharge him was clinically appropriate.
51. BWC said it carried out all the necessary tests and there were no signs of infection in any of the results. BWC said the symptoms L suffered from may have been a side effect of the treatment he had. It said it is confident in its clinical decision making around L’s care. Following a review of the complaint, it has reflected it would have not discharged him home in July given the distress and upset this discharge caused Ms R and her family.
52. We have looked at L’s medical records. On 11 July BWC discussed allowing L home for short periods of time, this is called home leave. The following day staff recorded that he ‘looks great’. L was then on home leave on 13 to 14 July. He had further home leave on 19 to 20 July.
53. On return to hospital on 20 July the records note L had a temperature of ‘37.9 at home and feet more puffy.’ At this time, he had mild tachycardia but otherwise his observations were in normal range. Tachycardia is an increased heart rate. BWC made a plan to ‘keep in for observation’ and ‘reassess for discharge on Monday’.
54. The next day L was seen in the evening and the records say ‘seen with parents. He has been well, active and playful…presenting runny nose for 2 weeks and since yesterday bringing up some phlegm. Temperature last evening of 37.9 maximum’.
55. On 22 July the records say L was happy and his chest was clear. On 23 July his chest was clear, and he went home on overnight leave. On 24 July there is a mention of ‘mild intermittent dry cough’, on examination he is noted to be alert and his chest was clear. A plan was made for home overnight on 25 July and then again on 26 to 28 July, aiming to discharge on Monday 29 July.
56. On 25 July a consultant reviewed L. They noted mild tachycardia but otherwise his observations were good. Later that day he went on home leave. Ms R called BWC that evening to clarify a medication dose and mentioned that he had loose stools.
57. On 26 July a consultant reviewed L when he returned to hospital. The records say he had increased episodes of diarrhoea. BWC reviewed possible causes of this, and our adviser said an appropriate plan for investigation was made. He was noted to be ‘miserable’, but that his chest was clear. The following day on 27 July, the records say staff had difficulties completing observations, naso-gastric feed and administration of medication. The records say that further play input might be helpful to ensure compliance.
58. On 29 July he was reviewed again. His chest was recorded as ‘clear’. There were possible new fungal lesions on his legs and his temperature was recorded as 37.2-37.9°C and he had a slightly high blood pressure. There is also mention of loose stools.
59. On 30 July during a ward round, it is recorded that L is ‘alert and chatty’. His temperature was 37°C. Our adviser explained that a temperature of 38°C triggers the pathway for treatment. There is a note which says there was a ‘limited examination as L is refusing’ but that his chest is reported to be clear but that he had ‘explosive stool’. Ms R has told us this temperature was not accurate as L was refusing a full assessment. Later the same day there is a nursing note at 4.30pm which documents a nurse led discharge and there are no concerns highlighted, the records say that L’s parents were present.
60. GMC guidance says clinicians ‘must be considerate to those close to the patient and be sensitive and responsive in giving them information and support’.
61. Our adviser said there is no documented change in L’s condition which suggested he was deteriorating prior to discharge. In particular, our adviser said there was no change in L’s respiratory rate or oxygen levels, and his chest was consistently clear. Our adviser said there is no medical evidence that discharge was inappropriate.
62. Our adviser said even if a child is medically well and has normal observations and examinations, it is always essential to listen to parental concerns. They note clinicians are aware that parents often pick up on subtle changes well before clinicians can. Our adviser said that while there was no clinical reason to prevent the discharge, if there are parental concerns, it is good practice for a more senior medical review and discussion. Our adviser commented that after a further review and discussion it might still have been appropriate to discharge L, but the decision would have been made in collaboration with his parents.
63. We have not seen evidence in the records that BWC documented Mrs R had concerns about the decision to discharge L in the days leading up to the discharge. We can see when he was readmitted the notes say Ms R and her partner requested to speak to the consultant as they had concerns they were not listened to. It says they felt L had been ‘brewing an infection for a while, but their concerns were dismissed’.
64. In BWC’s response letter it says the nurse involved in L’s care was aware Ms R was anxious about the discharge and asked a doctor to review L.
65. Our adviser said that it was appropriate for the nursing team to escalate concerns to a doctor in this circumstance. However, we have not seen evidence in the records that BWC discussed the discharge with Ms R to make the decision in collaboration with her and her family.
66. Taking into account the evidence we have seen and the advice we have received, we have seen BWC clinical care was appropriate, and L was clinically well enough to be discharged. We have seen evidence that Ms R’s concerns about L’s discharge were not appropriately considered. This is not in line with GMC guidance. We find this to be a failing.
67. We next consider what would have likely happened had BWC listened to Ms R’s concerns. Our adviser said at 7am on 31 July the notes say L’s temperature was greater than 38°C. BWC advised Ms R to take him to hospital. Our adviser said had L remained in hospital it is likely his temperature would have been taken in the morning and the team would have aimed to give him antibiotics and assess him within an hour.
68. Our adviser said it is clear that when he was admitted to hospital on 31 July his condition had changed. He had four temperature readings up to 39.5°C and was noted to be ‘coughing a lot’. He had reduced air entry and crackles in both lungs in the base and middle parts of the chest. This is a change in his condition from the previous days where the records note his temperature was 37°C and his chest was reported to be clear. BWC took bloods, prescribed broad spectrum antibiotics and requested a chest X-ray.
69. Our adviser explained had L remained in hospital he would have likely been examined and received antibiotics sooner. However, our adviser explained this delay would have been significant if it was found L had a bacterial infection. Our adviser explained there is no evidence he had a bacterial infection at readmission and this was confirmed on his post mortem. Our adviser said it is their view the discharge had no clinical impact on L or contributed to his sad death.
70. Ms R has told us on the day of discharge they questioned why BWC felt L was well enough to go home. She said he was having chills, was shaking and was looked visibly unwell. She has told us she felt the discharge was rushed and L’s care was not prioritised. Ms R has told us she feels an X-ray should have been ordered prior to the discharge and BWC would have recognised the changes sooner.
71. Taking into account the evidence we have seen, we do not know what would have happened had BWC taken Ms R’s concerns more seriously. We think it is possible BWC may have still discharged L as it was clinically appropriate to do so. However, we also think it could have decided to keep him in hospital. While we think this would have helped Ms R feel heard and that her concerns were being taken seriously, we have not seen evidence that it would have had a clinical impact on L.