Dr A’s experience of metabolic conditions
24. Ms P complains Dr A did not have enough training to treat her son. She says she has seen their CV and they only had six months experience of metabolic conditions before becoming a consultant.
25. The GMC professional standards say doctors must recognise and work within the limits of their competence. It is not part of our role to examine the recruitment processes of NHS trusts or how they decide to appoint junior doctors to the position of consultant. But we have taken steps to consider Ms P’s concerns and hope they give her some reassurance.
26. Our adviser explained there was no formal metabolic training programme before 2004 and interview panels decided whether a junior doctor was suitable for appointment to the position of consultant. We understand Dr A qualified as a doctor in the 1980s and has been on the specialist register for paediatrics since the 1990s.
27. Our adviser explained there was a training programme for paediatric inherited metabolic diseases after 2004. But there was no formal sub-specialism within the Royal College of Paediatricians or GMC for several years after this. This meant most senior consultants dealing with these diseases were only registered as specialising in paediatrics.
28. We understand it is common practice for consultant appointment committees to ask the BIMDG to help check whether a candidate has had enough training to practice as an independent consultant in paediatric inherited metabolic diseases. Consultants then have a yearly appraisal and, more recently, revalidation.
29. We know Dr A has been a regular attendee at the national BIMGD meeting as well as the International Congress of Inborn Errors of Metabolism. We also understand they have contributed to different papers on paediatric inherited metabolic diseases. Overall, we have seen no reason to question Dr A’s experience or involvement in W’s care.
Delegation to junior staff and the involvement of another children’s hospital
30. Ms P complains Dr A wrongly delegated their responsibilities to junior staff who did not have enough knowledge to treat W. She says staff had to refer to consultants from another organisation for help and advice.
31. The GMC professional standards say doctors must work collaboratively with colleagues. They say doctors must share all relevant information with colleagues involved in a patient’s care within and outside the team, including when they hand over care as they go off duty and delegate care.
32. They also say that when a doctor does not provide a patient’s care themselves, for example when they are off duty or delegate the care of a patient to a colleague, they must be satisfied that the person providing care has the appropriate qualifications, skills and experience to give safe care for the patient.
33. We recognise W has a rare genetic disorder that most doctors may not be familiar with. Consultants must delegate work to junior doctors and nursing staff when they are off duty or not on the ward. They review patients and provide staff with care plans to follow in their absence. Staff are able to contact them or the on-call consultant if a patient’s condition changes or they need advice.
34. Our adviser explained that ideally patients with metabolic conditions would be managed by a centre that only cares for them and is familiar with their condition. This level of service is not currently possible within the NHS, so trusts draw up shared care agreements to overcome this issue. In other words, hospitals share consultant cover particularly overnight.
35. We know the Trust has an agreement with another children’s hospital in England. W’s records show the Trust contacted the on-call team at this other hospital many times for advice during his admission. It is clear staff there were freely available and provided advice when needed. We also note Dr A reviewed W several times despite the other children’s hospital being on-call.
36. For the care of children with metabolic diseases, the Trust has an agreement with another children’s hospital to give consultant cover for when its own paediatric metabolic consultants are unavailable. We have seen that junior doctors and nursing staff contacted the other Trust when they were on-call and got appropriate advice. We do not see any failings with this part of the complaint.
W’s care and treatment for the first 24 to 48 hours
37. Ms P complains Dr A failed to effectively manage W on admission.
38. W presented with serious metabolic decompensation on 18 August after a period of illness at home. The BIMDG guidelines set out how clinicians should respond during the first 24 to 48 hours in this situation. We have considered whether the Trust’s care and treatment was in line with this guidance.
39. We think W’s records show the Trust appropriately reviewed and assessed him after admission. It quickly requested appropriate blood and urine tests and assessed him for intravenous (IV – when fluids or medicine is given through the veins) therapy. It also started him on metronidazole (an antibiotic) to help reduce harmful toxins and increased his usual dose of carnitine (supports metabolism) in line with the BIMDG guidelines.
40. The blood and urine tests showed W had acidic blood (where the kidneys and lungs cannot keep the body’s pH in balance, known as acidosis) and a very raised blood lactate. They also showed ketones in W’s urine (a chemical produced by the liver) which shows his body was breaking down stored fat and protein.
41. The Trust tried to improve W’s blood acidity by giving him sodium bicarbonate (an alkali, to neutralise the acidity) and an IV of dextrose (a carbohydrate, to provide calories) with electrolytes (salts, such as sodium and potassium). This treatment was also in line with the BIMDG guidelines.
42. Overall, the Trust assessed and responded to W’s first symptoms in line with the BIMDG guidelines. We have seen no failings. We hope our consideration gives Ms P some reassurance about this part of W’s care.
43. We know Ms P is concerned about the Trust giving W metronidazole on 19 August. The records show staff told Ms P they had given it to W because it was listed on his personal management plan. She told staff she felt it made W less alert and unable to focus when he had been on it before.
44. We can see staff discussed this issue with Dr A the same day. Dr A said they were not convinced metronidazole had contributed to W’s eye problems but they switched him to rifaximin (an antibiotic) because Ms P was not happy for him to take it anymore. Dr A advised staff to stop metronidazole and start rifaximin instead, which they did.
45. We understand Ms P’s concerns as it seems W’s personal management plan was not updated after Dr A switched medications. While something may have gone wrong here, it had little impact on W. We also find the Trust dealt with this issue quickly as soon as Ms P raised concerns at the time. We do not need to take any further action.
Care and treatment up to 2 September
46. Ms P complains Dr A failed to monitor W.
47. GMC professional standards say doctors must assess the patient’s conditions and, where appropriate, examine them. The NMC professional standards say nurses must accurately identify, observe and assess signs of normal or worsening health and make a timely referral to another practitioner when needed.
48. W’s records show Dr A saw him daily between 18 and 29 August except on 18 August (they were not on call) and 26 August (unknown reason). Dr A also gave advice to colleagues every day between 19 and 31 August and often many times a day before going on leave at the end of August/start of September.
49. Our adviser said W’s records show staff at the Trust monitored him very carefully throughout his admission. They also said staff from the intensive care unit (ITU), paediatric intensive care unit (PICU) and metabolic team reviewed him very regularly. We find W was appropriately reviewed during this time.
50. Ms P also complains Dr A failed to monitor W or to recognise and act on a deterioration in his condition.
51. Baumgartner et al. provides guidance on what care and treatment to give after the first 24 to 48-hour period. The BIMDG guidelines also give some guidance on this and what to do if the treatment is not working. We have considered if the Trust’s continued care and treatment was in line with relevant guidance.
Sodium bicarbonate
52. W’s records show he became progressively more metabolically unstable after admission with his blood becoming more acidic and his lactate staying high. The Trust tried to normalise the acidity in his blood by continuing to give him high doses of sodium bicarbonate and IV fluids.
53. By 23 August, W’s blood acidity was improving and staff were reducing the sodium bicarbonate treatment and trying to encourage more oral feeding. But W’s blood lactate stayed high indicating he was still not metabolically stable. On 25 August, he again went into an uncontrolled situation with ongoing severe acidosis and a raised blood lactate.
54. By 31 August, staff were giving W corrections every four hours and continuous infusion of sodium bicarbonate. They also started him on more sugar solution to improve his calorie intake. He had developed low neutrophils (a type of white blood cell that act as the immune system’s first line of defence) because the long period of metabolic instability began to affect his body’s ability to produce white blood cells.
55. Baumgartner et al. warns against continuing to give very large doses of sodium bicarbonate as it can cause cerebral oedema (swelling of the brain) and hypernatremia (high sodium in the blood). It also says IV fluids therapy should only be used during the first 24 to 48 hours.
56. Our adviser said the Trust should have been trying to get to the root of why W’s blood gas was so disturbed. They told us the Trust’s approach is outdated as the focus of treatment should be on correcting the metabolic disturbance causing the issues, in line with the BIMDG guidelines and Baumgartner et al.
57. Our adviser said the Trust gave aggressive bicarbonate corrections up to a full correction over one hour. They said this is precisely the situation that is advised against in Baumgartner et al. They said hyperlactataemia (too much acid in the body) is a sign of mitochondrial dysfunction and increasing glucose in this situation is likely to worsen not improve the situation.
58. The Trust’s decision to continue giving W sodium bicarbonate to try to stabilise his blood gas seems to go against these guidelines. Our adviser thought the Trust did this because W looked to be improving at first. We find the Trust should have tried a different treatment when he did not improve rather than giving him sodium bicarbonate every few hours.
Continuous veno-venous hemofiltration (CVVH)
59. The BIMDG guidelines say clinicians should consider hemofiltration (filtering the blood outside the body) if a patient needs more than one correction of sodium bicarbonate. Baumgartner et al. also recommends hemofiltration if attempts to stop catabolism are unsuccessful.
60. Our adviser explained this would have likely been CVVH in W’s situation. This is where a catheter is placed in one of the main veins, blood then flows into a machine which filters out the waste fluid and replaces the fluids and electrolytes before returning the blood to the body. They said CVVH is an emergency treatment and should be available within a few hours.
61. W’s records show Dr A considered CVVH though the records are unclear why they decided against it. The records show staff later considered trying it during W’s second admission but they seem to have decided against it due to W’s improving acidosis and reducing lactate. The records show a PICU consultant then later discussed it with Ms P.
62. Our adviser said W looks to have met the criteria for CVVH early in his admission and an earlier consideration of it should have happened. They said a metabolic and PICU consultant should have discussed it as it is a better treatment option. This is because it not only corrects the acidosis but removes the toxic metabolites that are causing the decompensation.
63. Our adviser said blood pH will improve if a large dose of sodium bicarbonate is given but will drop again if the underlying disturbance is not addressed. They said catabolism can only be temporarily interrupted using a high delivery of sugar. They said if enough protein is not given over a longer period, then catabolism will happen.
64. Our adviser explained there is a natural reluctance to try CVVH as it needs general anaesthetic, the insertion of a large access line and can have serious complications. But, based on what we have seen, we find the Trust should have explored this treatment option sooner than it did and given it more consideration.
65. We understand Dr A did not discuss CVVH with Ms P as they felt she would not agree to it. The GMC professional standards say doctors must give patients (or, in the case of children, their parents or guardians) the information they want or need. We also find it was wrong of the Trust not to discuss it with Ms P based on an assumption she would not agree to it.
Nutrition
66. Clinical Paediatric Dietetics recommends protein is reintroduced within 24 to 48 hours of a carbohydrate-based emergency routine and should be done quickly over a period of one to two days. Our adviser said most patients are on very restricted protein intake and develop protein catabolism very quickly if it is restricted.
67. Clinical Paediatric Dietetics also says it is beneficial if it can be done more quickly and advises early consideration of total parenteral nutrition (TPN) if protein is not tolerated. This is where nutrients are given through a vein. Baumgartner et al. also says to start TPN if the patient cannot meet their protein and calorie needs orally after the first 24 to 48-hour period.
68. Our adviser said W’s albumin (the most common protein in blood plasma, which helps make sure blood stays in the arteries and veins) dropped from 39 on 19 August to 25 during the weekend of 23/24 August. They said protein intake was less than 0.5g on 19, 20, 21 and 22 August with a plan to build over the weekend. They said concerns about acidosis should not lead to an over-restriction of protein or for long periods as this is likely to worsen metabolic instability.
69. W’s records show that while the Trust did introduce protein orally after 48 hours, the quantity was not enough. This meant he had a longer period of suboptimal (less than the standard) protein intake particularly taking into account the fact he was ill before admission. Our adviser said this is a particular issue in children with MMA.
70. The records show that when Dr B took over W’s care they calculated the quantity of energy and protein he needed and came up with a detailed dietary plan. They also started an albumin infusion to correct the deficit and TPN to supplement his dietary intake until he could take enough orally.
71. Our adviser said doing an exact calculation of a child’s protein and calorie requirements is an important part of the treatment of MMA. They explained how it prevents the accumulation of the toxins that lead to high ammonia. We find the Trust should have taken this action sooner.
72. W’s earlier records do include a daily food diary and dietary protein prescription by a dietician. But our adviser said they do not clearly state how much protein he should have been getting and it seems he was only getting half what he needed. Along with W’s reduced protein intake before admission, it seems he experienced a long period of poor protein intake.
73. When Dr B took over W’s care, they noted his blood lactate levels stayed high and his blood albumin low. This suggests he had not had enough protein to match his safe natural protein intake for many days. This was then made worse as he experienced bad diarrhoea.
74. Our adviser said staff should have been considering W’s lactate level throughout his admission. They explained that blood lactate goes up when cells are still quite sick and this can lead to metabolic stroke. They said it seems its importance was not fully noted until Dr B became involved in his care.
75. Baumgartner et al. says albumin is one of the things to test for to help guide acute treatment. We find the Trust should have addressed W’s low albumin sooner. Again, our adviser said staff focused on addressing his issues on admission rather than the underlying cause, which meant they did not get to the heart of what was going on.
Sodium benzoate
76. Ms P complains Dr A continued to use sodium benzoate when W’s ammonia levels were very low (below 9mmol/ml). She says she asked Dr A two times why there was a need to continue with sodium benzoate.
77. Our adviser explained that ammonia is a waste product of the intestines and decompensation can cause high ammonia levels as it affects the liver’s ability to remove the ammonia produced from the breakdown of amino acids. Dr A had been trying to prevent this from happening by giving W sodium benzoate.
78. Forny et al. recommends sodium benzoate as the first line treatment to control ammonia levels. Our adviser said sodium benzoate has been used to control ammonia in patients with MMA for many years, so its value and side effects are well understood. We find Dr A’s use of sodium benzoate to be appropriate.
79. W’s records show he does not often suffer from high ammonia and usually had a dose of sodium benzoate at home. The Trust increased this on 19 August and gave it by IV. Our adviser explained sodium benzoate can cause vomiting when taken orally and confirmed the dose given was in line with BIMDG guidance. We find the route and dose of sodium benzoate to be appropriate.
80. Our adviser said W’s ammonia levels were stable and controlled throughout his admission suggesting the sodium benzoate was working. The Trust stopped the medication when his ammonia levels were 8mmol/ml. We find the period the Trust gave W the medication to be appropriate too.
Central line
81. Ms P complains staff inserted a central line incorrectly causing injuries to W. This is where a narrow, flexible, hollow tube is inserted in a large vein to help you receive treatment.
82. GMC professional standards say doctors must effectively assess patients and give or arrange suitable treatment at the right time. W’s records show staff decided to insert a central line on 30 August so they could give more aggressive treatment. Metabolic and PICU consultants all agreed he needed a central line.
83. Our adviser explained that a central line was needed as staff needed to give W a number of different medicines and some that are known to be vein damaging, like sodium bicarbonate and sodium benzoate. They also explained how a central line allows staff to give fluids at higher rates and to get more accurate readings of things like ammonia levels.
84. An ITU consultant inserted W’s central line on the ward and there is nothing in the records to suggest he suffered an injury during the procedure. The consultant failed on their first attempt as the guide wire did not go in well enough but the second attempt was successful. This is not uncommon.
85. Our adviser said the documentation for the procedure shows it was done in line with the Trust’s own agreed process. They also advised that central line placement is more difficult outside an operating theatre and without the child being under general anaesthetic.
86. We have not found any failings with this care. We know it can be difficult to comment on a procedure like this so long after it happened. We hope our consideration gives Ms P some comfort.
87. The central line was noted to be leaking on 1 September and the skin around it was red, bruised and sore. The line was rewired that evening but was leaking by 2 September. It then came out on 2 and 3 September so was redone on 3 September. W’s skin was noted to be very sore and broken down. We appreciate how concerning this must have been for Ms P particularly on top of everything else going on at the time.
88. Our adviser said W’s treatment was firstly complicated by the lack of a central line which is very important in cases like this. They explained how staff cannot give a patient treatment in the way they need to when they are only able to use tiny tubes. They said staff should have discussed a central line with Ms P within the first couple of days of W’s admission because it was clear he was very sick.
89. Our adviser said as the Trust was giving W high doses of vesicant medicines (capable of causing pain, inflammation and blistering of the local skin and underlying structures) and needed multiple free-flowing and reliable blood samples, staff should have predicted they needed to insert a central line and explored it earlier.
90. We find the Trust should have explored and inserted a central line sooner than it did. This would have allowed staff to treat W more easily and would have caused him less distress as they would not have needed to take his blood repeatedly like they did. This would have been in line with GMC professional standards and the guidance for MMA.
CT versus MRI scan
91. Ms P complains about how the Trust responded when W became drowsy.
92. On 21 August 2019, the Trust arranged for W to have a head CT (a scan that uses X-rays to create detailed images of the inside of the body) as he had become drowsy. Our adviser said an MRI (a scan that uses strong magnetic fields and radio waves to produce more detailed images of the inside of the body) would have given more information.
93. Our adviser also said an MRI would have meant a general anaesthetic, a longer scan and careful monitoring. We think a CT was a reasonable option in this case. The CT did not show any new changes in the brain though it is possible W’s condition worsened after the scan.
Stroke, brain swelling and cardiac arrest
94. Ms P complains Dr A told her W’s brain was swollen and he had suffered a stroke and a cardiac arrest.
95. W became dystonic during admission (where abnormal muscle tone results in spasms and abnormal posture). Our adviser said this is a recognised complication of metabolic decompensation as the area of the brain that controls movement is damaged. This is called a metabolic stroke. We find Dr A was right to tell Ms P that W had suffered a stroke.
96. We cannot see any evidence to show W had cerebral oedema (where fluid develops in the brain increasing pressure inside the skull) though there was some suggestion of brain swelling. We cannot see any reference to W suffering a cardiac arrest or staff saying he had. We do not find any failings here as it is unclear what happened.
Overall
97. We have found a number of issues with this part of W’s care which we consider to be failings:
• the Trust continued to try to treat him with sodium bicarbonate for too long and should have tried other treatments after the first 48 hours • the Trust should have properly considered trying CVVH, done this sooner and discussed it with Ms P • the Trust should have managed his nutrition better by introducing TPN and properly calculating and meeting his protein and calorie needs sooner • the Trust should have considered inserting a central line sooner.
Communication with Ms P
98. Ms P complains Dr A failed to communicate with her about W’s condition and was unavailable many times.
99. W’s records show Dr A saw W on 19, 20 (twice), 21, 22, 23, 24, 25, 27, 28 and 29 August. There are also many notes of phone calls between staff and Dr A discussing W’s condition and plan of care.
100. Dr A was unavailable on the evening of 18 August when W was admitted as they were not on-call, but they spoke with staff and saw W the next day. It is not clear from the notes if Dr A spoke with Ms P each time they saw W but it is clear they spoke with her on 22, 24 and 27 August.
101. Dr A was off site on 28 and 29 August but available by phone and saw W both evenings. We could only see one time where staff were unable to contact Dr A. This was at 2.10pm on 29 August when staff noted they were driving but Dr A visited W at around 6pm that evening when they returned to the hospital.
102. The GMC’s professional standards say doctors must be considerate to those close to the patient and be sensitive and responsive in giving them information and support. We can see Ms P had different conversations with clinicians at the Trust between 18 August and 2 September.
103. We have found the Trust kept Ms P updated and informed about W’s condition and plan of care. We realise these conversations were mostly with staff other than Dr A. But we can see staff were sensitive to the distress she was experiencing and advised her to talk to her family or GP about how she was feeling and offered to refer her for psychological support.
Meeting on 9 September 2019
104. Ms P complains Dr A arranged a multi-disciplinary team (MDT is when healthcare professionals from different areas of medicine meet to discuss a patient) meeting on 9 September to discuss W’s care and treatment but did not invite her or her social worker.
105. The Trust’s typed notes of the meeting say staff invited Ms P but she declined to attend. They also say staff had unsuccessfully tried to contact her social worker about the meeting. We can see no evidence of this and the records instead suggest staff did not invite Ms P or attempt to contact her social worker.
106. On 22 August, the family care sister met with Ms P’s social worker on the ward. This suggests there was contact between them and the Trust. On 30 August, nursing staff told Ms P an MDT meeting was needed to discuss her concerns about W’s care. On 4 September, nursing staff noted the Trust needed to arrange an MDT meeting.
107. On 5 September, nursing staff told Ms P an MDT meeting would be arranged to allow her to ask questions about her concerns. On 6 September, they told her she could voice her concerns at an MDT meeting which would be organised.
108. On 7 September, nursing staff noted Ms P had a list of questions for the MDT meeting. On 8 September, they noted Ms P had demanded an MDT meeting and asked why they were making her wait. The note also says nursing staff planned to request a date and time for the meeting.
109. The written notes of the meeting on 9 September say it was called at short notice. They say Ms P declined to attend and the family care sister was trying to get hold of her social worker. They also say Ms P wanted her social worker and one of W’s teachers to attend any MDT meeting.
110. On 9 September, the family care sister had a phone call with Ms P’s social worker but the notes do not mention the MDT meeting. This suggests they knew how to reach them and did not discuss the meeting with them.
111. On 10 September, the sister discussed the meeting with Ms P. They told her the meeting was to discuss current management and care and her concerns would instead be addressed through the formal procedure. They also told her they would arrange another MDT meeting for a week’s time.
112. Overall, the evidence suggests the Trust did not invite Ms P or her social worker to the meeting, although it had been discussed since 30 August and the Trust knew how to contact her social worker. It may be that the Trust decided to have separate meetings to discuss W’s care and Ms P’s concerns after her formal complaint was made a few days earlier. This would not be unreasonable.
113. We find the way the Trust handled this situation was not in line with our Principles of Good Administration. These say organisations should do what they say they are going to do and communicate effectively. The Trust had told Ms P it would hold an MDT meeting but then it did not invite her or her social worker to this without explaining why before it happened. We can see why this caused Ms P concern.
114. Ms P also complains staff focused on her behaviour at this meeting rather than W’s care and treatment.
115. The notes of the meeting show staff did discuss W’s care (agreeing to keep him on PICU, for example) but also discussed Ms P’s behaviour as staff understandably raised concerns about it. This is reasonable as W’s notes show staff were concerned Ms P’s behaviour was affecting them and the care they were able to give. We have not found failings with this part of the complaint.
Ms P’s behaviour
116. Ms P complains staff unfairly labelled her difficult.
117. Looking at W’s records, it is clear staff at the Trust found Ms P’s behaviour (and her sister’s) challenging and were concerned it was negatively affecting W’s care. We have seen different references to behaviour that would have been difficult for staff to manage.
118. On 19 August, Ms P was noted to be ‘extremely distressed’ and ‘not always allowing staff to provide care’. Later that day, staff noted Ms P and her sister were ‘quite argumentative towards each other’ with staff feeling they had to ask her sister to leave (though she refused).
119. On 21 August, staff noted Ms P and her sister’s behaviour ‘at times made it difficult to progress child’s management’ though things settled down after ‘prolonged discussion’. Ms P also threatened to discharge W on 29 August and staff noted she and her sister were ‘very angry and emotional’ and ‘raised voices to various members of staff’.
120. Later that day, staff noted Ms P was ‘talking inappropriately to and about medical staff’ and ‘continuously swearing’. They also noted her sister was ‘swearing and confrontational with medical staff’.
121. On 30 August, staff recorded Ms P was ‘continuously rude to nursing staff’. Later, they noted she was ‘aggressive’ and said she would not ‘spare anyone’ if W went downhill.
122. On 5 September, there is a note that a nurse was ‘in tears’ after Ms P told them they were killing her son. She then told a member of staff she would discharge W and they ‘would have killed him’ if they did not support her. Ms P was also noted to be ‘inappropriately speaking to staff’, ‘constantly stating the hospital have made him ill’ and being ‘quite confrontational’.
123. On 9 September, the notes say Ms P ignored a member of staff who tried to talk with her and ‘continued to be rude to the team’ and kept repeating staff had ‘made him ill’. We recognise this must have been extremely challenging for staff to deal with. We can see the Trust felt it appropriate to introduce steps, like having two nurses care for W on non-consecutive shifts, to help its staff deal with the situation.
124. We also recognise this was a very difficult time for Ms P. It is clear from the notes she was very emotional and upset at the time and understandably so. We know this was the first time W had been seriously ill with his condition as Ms P had clearly cared for him very well at home.
125. W’s notes include details of long conversations Ms P had with a doctor on 31 August and 1 September. She spoke of feeling like she had lost her mind and lost control of W’s condition with him being in hospital. She said she felt she had let him down and his hospital admission had made the fact he has a life-limiting condition very real. She also spoke of feeling low and struggling to sleep.
126. Overall, while we can understand why Ms P was so distressed and worried about W, we consider her behaviour would have been very difficult and a challenge to staff. It is reasonable that the Trust took action to discuss her behaviour, consider whether to take action to manage it and put procedures in place.
Complaint handling
127. Ms P complains about the way the Trust handled her complaint about these issues. She says it failed to investigate or address her concerns appropriately and should have got an independent review from the start.
128. Looking at the Trust’s complaint file, Ms P first made a verbal complaint on 4 September. The Trust acknowledged the complaint on 9 September and said it would respond within 25 working days (by 14 October). Ms P then added to her complaint at a meeting on 4 September and then added to it again at another meeting on 11 September.
129. The Trust emailed Ms P on 11 September asking her to confirm its understanding of her complaint before starting an investigation. Ms P then added to her complaint many times by email between 11 and 18 September. This made the Trust write to her on 19 September with an updated summary of her complaint.
130. Ms P added to her complaint again on 22 and 24 September and 3 October. She then chased the Trust for a response on 15 October and her MP emailed the Trust about her complaint on 28 October. The Trust sent its first written complaint response on 6 December. Ms P then went back to the Trust on 6 December and 23 January 2020. The Trust sent a second written response on 29 January 2020.
131. The Trust first aimed to respond to Ms P by 14 October, so it was around two months late in writing to her. We recognise Ms P added to her complaint many times while the Trust was trying to do its investigation. This would have meant the Trust’s response was delayed.
132. Our Principles of Good Complaint Handling say organisations should keep the complainant regularly informed about progress and the reasons for any delays. Looking at the Trust’s complaint file, it could have kept Ms P better updated, particularly as the response was so long after the first deadline it set itself.
133. We recognise Ms P raised a wide range of concerns and added to these several times. The Trust’s aim of responding to her within 25 working days quickly became unrealistic. It should have given itself more time to respond to what had become a detailed complaint covering many issues.
134. Our Principles of Good Complaint Handling say organisations should be open and honest when accounting for their decisions and actions. They should give clear, evidence-based explanations and reasons for their decisions. Looking at the Trust’s responses, particularly its first response, we consider they did address Ms P’s concerns and gave an account of the care it provided to W.
135. While we have found failings in W’s care which the Trust did not find in its own investigation, its complaint handling was not of a poor standard. It took Ms P’s concerns seriously, gave an overview of W’s care, explained why it gave the treatment it did and tried to address her concerns.
136. Ms P first brought her complaint to us in January 2020 and we started an investigation. The Trust then decided to commission an independent review of W’s care, so we stopped our investigation while this went ahead. The Trust shared the outcome of this review with Ms P on 23 February 2022.
137. Ms P complains the Trust should have commissioned this review much sooner than it did. We appreciate her strength of feeling here as the Trust did not offer the review until we said we would investigate. But under the NHS Complaints Regulations the Trust is under no obligation to offer an independent review and it is not something we see very often.
Impact
138. We have carefully considered the likely impact of the failings we have seen.
Continued use of sodium bicarbonate
139. Baumgartner et al. does not recommend the ongoing use of very high and repeated doses of sodium bicarbonate. Our adviser said the Trust should have been trying to get to the root of why W’s blood gas was so disturbed. They also said the Trust should have discussed the risks and benefits of other options with Ms P.
140. We think the Trust may have continued with sodium bicarbonate because, at some points, W’s condition seemed to be improving. But it should have changed approach once staff were giving him corrections every four hours and it was clear it was not working.
141. We think it is likely that W would not have become as ill as he did or been in hospital as long as he was had this failing not happened.
Central line
142. Our adviser said a central line would have allowed staff to give W treatment more quickly and easily. They said it would also have given them more choice and made things easier for W as staff would not have had to repeatedly take blood, for example.
143. In its complaint responses, the Trust said staff chose a central line when peripheral access was becoming difficult. We think inserting a central line sooner would have meant W was less distressed and his treatment could have been given in a better way.
CVVH
144. The BIMDG guidelines say clinicians should consider hemofiltration if a patient needs more than one correction of sodium bicarbonate. Baumgartner et al. similarly recommends hemofiltration if attempts to stop catabolism are unsuccessful. Our adviser said W looks to have met the criteria for hemofiltration early in his admission.
145. W’s records show the Trust considered hemofiltration though it is not clear why they decided against it and there is nothing to say they discussed it with Ms P. It seems staff felt Ms P would not agree to it.
146. Our adviser believes W would not have had such a long illness and become as ill as he did, had the Trust tried CVVH. In any event, the Trust should have discussed this option with Ms P, explaining the risks and benefits so she could make an informed decision about what to do.
Protein and calorie intake
147. Baumgartner et al. say sodium bicarbonate should only be used for emergency stabilisation over the initial 24 to 48 hours of a child’s admission. It also says TPN should be started if they cannot meet their protein and calories needs orally. Our adviser said the Trust did introduce protein after 48 hours, but the quantity was not enough.
148. It is difficult to say how W might have responded had things been different. TPN would have also depended on the availability of urgent surgical time and Ms P consenting to the procedure. In any event, the distress and uncertainty this failing will cause Ms P is an injustice.
149. W’s records include a daily food diary and dietary protein prescription with additional energy. Our adviser said it is unclear whether he was able to meet this due to difficulties in getting him to take food and drink orally. Added to his reduced protein intake before admission, W experienced a long period of poor protein intake.
150. Our adviser said doing an exact calculation of a child’s protein and calorie requirements is a cornerstone of the treatment of MMA. From what we have seen, this only happened once Dr B took over W’s care. We have found this should have happened much sooner.
151. Again, it is difficult to say how W might have responded had his dietary intake been better managed. It is possible he would not have become as ill as he did and would not have had to spend as much time in hospital. The distress and uncertainty this will cause Ms P is an injustice.
Meeting on 9 September 2019
152. We think the failing in communication around the MDT meeting caused Ms P unnecessary concern and distress.
Complaint handling
153. We have found the long wait for a complaint response, added to the lack of information given to explain the delay, caused Ms P unnecessary distress.