“The court heard and accepted evidence that the care all three children are receiving from their parents is positive and the children are thriving.”
‘Several factors contributed to A's feeding difficulties: cerebral palsy impaired oromotor function. We have evidence from the video fluoroscopy that although A is capable of feeding orally she has limited sucking and swallowing skills and is at risk of aspiration when taking fluids. On the other hand, she does not have a totally unsafe swallow, and it was reasonable to offer thickened fluids and tastes of solids. However, it was not realistic to expect her to achieve her full nutritional requirements by the oral route. This was acknowledged by clinical staff. It is not uncommon for children with cerebral palsy to feed reasonably well in early infancy and for progressive feeding difficulties over the first and second years of life [due to] the impact of gastroesophageal reflux and gastrointestinal problems. Gastro- oesophageal reflux undoubtedly adds to the feeding problems of a child with cerebral palsy. Vomiting, discomfort and the potential for aspiration are all factors affected by gastroesophageal reflux. The ENT investigations (micro-laryngo-bronchoscopy) revealed evidence of the impact of gastroesophageal reflux with changes in the upper airways associated with gastroesophageal reflux. It was, therefore, appropriate to maximise anti reflux treatment aversive feeding patterns - a child who experiences feeding as unpleasant or associated with discomfort, is likely to develop an aversive feeding pattern whereby the child avoids feeding. A showed aversive feeding patterns in turning her head away from the bottle, arching away from the bottle and biting on the teat. It is likely that periods of tube feed, discomfort from gastroesophageal reflux and possible aspiration all contributed to the aversive feeding pattern. This combination of factors illustrates the importance of supporting the family in dealing with the complex process of feeding in cerebral palsy. On one hand, one does not wish to deprive the child from the pleasure and social benefits of feeding as a result of increasing aversive behaviour. On the other hand, one wishes to avoid the risks of aspiration, recurrent respiratory infection and psychological distress associated with forced feeding. In my opinion, the mother's wish for a gastrostomy was not unrealistic and prolonged [naso-gastric] tube feeding carries its own risks and frustrations. For example, the need to replace the tube which may distress the child, irritation to the facial skin as a result of the adhesive tape required to keep the tube in place, social factors and the visual appearance of the tube. A has been appropriately investigated and the demonstration of dysfunctional feeds and the impact of gastroesophageal reflux has justified the need for a gastrostomy.… Pulmonary disease in patients with cerebral palsy results from different mechanisms that often occur together: recurrent aspiration - recurrent aspiration may result from gastroesophageal reflux and oropharyngeal dysphagia. Gastrostomy tube feeding provides direct enteral access and reduces aspiration during swallowing but does not address aspiration of oral secretions or stomach content from gastroesophageal reflux and, in fact, may exacerbate gastroesophageal reflux (see above); scoliosis - curvature of the spine and chest wall deformity are common in children with cerebral palsy and may result in restrictive lung disease respiratory muscle discoordination - weakness and/or poor coordination of the respiratory muscles may result in hypoventilation and ineffective cough and clearance of pulmonary secretions In A, recurrent respiratory symptoms have become prominent in the second year of life. There has been concern that there may have been exaggeration on the part of the mother and that clinical signs have not always correlated with the mother's reports. However, she has undoubtedly been observed to be wheezy with crepitations in her chest and x-ray changes which support the likelihood of recurrent aspiration. Weakness and poor coordination of respiratory muscles is likely to be another factor given the extent of neuromuscular involvement. An additional factor or co-morbidity in A, is the likelihood of asthma, a chronic inflammatory condition associated with increased IgE production. Asthma results in hyper reactive airways, inflammation in the respiratory tract and increased mucus production. Asthma is a genetic condition and there is a strong family history of asthma in A’s family.… A is a child with significant and complex medical needs, associated with evolving cerebral palsy and its associated complications. The mother's suspicions of oromotor difficulties leading to feeding problems and aspiration, severely impaired vision, delayed motor milestones, gastro-oesophageal reflux and recurrent respiratory problems related to aspiration and/or asthma are not fabricated and have been supported by investigations and known association with cerebral palsy.… In my opinion A has not been subjected to unnecessary investigations and use of tube feeding, use of a feeding pump, treatment for gastro-oesophageal reflux, asthma and prophylactic antibiotics and referral for gastrostomy are all justified.… This is not a case in which the child has been frequently and repeatedly presented with fabricated symptoms.’
‘Parents reported that on Friday they realised pump had not been delivering full dose. No alarms and pump moving but no feed administered. Dad annoyed about this. Do not know how long this has been a problem for. Have 2 new pumps from Abbott. Loose stools did start with new pump so ? was not receiving full feeds before.’ 8.16. A had a two day admission 21-22.1.19 following a five day history of a cough/chest infection. On 22.1.19 PGM raised with the H1 dietitian that the hospital pump had been occluding and a query was raised as to whether it meant A would be receiving her full feeds, and PGM was requested to alert staff if the pump occluded in hospital. 8.17. In January 2019 the dietitian DM was raising concerns with the treating consultant Ms R about M’s concerns of high gastric losses of 350-450ml per 24 hours, and of A’s weight loss which the dietitian was trying to treat by increasing feed concentration to 140% of requirements. 8.18. M was at this time referring to Dr F in her discussions with the dietitian DM and saying that it was his view that A was not gaining weight because of her movements and tone. DM did not see A as a child with such an energy expenditure problem. Her physiotherapy assessment in mid-February noted no spasms or involuntary movements, and the physiotherapists provided explanations to the family to help with an understanding of the presentation of A’s movements. 8.19. A was admitted to H2 on 18-22.2.19 to review her gastro-intestinal, movement and respiratory issues. During this late February hospital admission M was noted by S.N.KS to express her concern about the numerous chest infections that A had suffered in recent months, and that her salivations lead to chest infections and that suctioning may be the answer to this. She complained at having to wait until April to see the consultant on this issue and that A may have more chest infections and may die. 8.20. Dr V oversaw the gastroenterology treatment during this admission. Gastric losses of 750ml/day were recorded initially, which were then reduced to 150ml/day by clamping A’s drainage bag and reducing the amount of Dioralyte that was provided. This approach was then reversed and a large loss of 8-900ml was recorded on the day she was discharged. Dr I’s discharge letter set out a plan of increasing clamping of the gastric tube so as to wean A off the need for a drainage bag. No clear cause for failure to gain weight was identified during this admission. 8.21. In a letter to Dr U in early November 2018, A’s GP confirmed three episodes of respiratory infection on clinical examination and requiring antibiotics. In each of November 2018, January, March and April 2019 A had respiratory distress or infection, and three of the four occasions led to hospital visits or admission. Suctioning was taught to the family and its use permitted from April. It involved using a small suction device to remove saliva or vomit from A’s mouth, but did not involve any deep suctioning into her throat which it was explained needed to be done by trained nurses. There appeared to be some abatement of chest infections from this date until late summer, noted by M to Ms O’
‘Mum reported is getting full feed most days but still having a problem with pump. Pump saying feed is being delivered and it is not.’ 8.23. There were some 15 days of evidence heard in the previous proceedings in late April to late May 2019, leading to the agreed threshold conclusions that I have discussed above. 8.24. At a consultation with the dietitian at the end of May, A was noted to be tracking her height and weight along the 0.4th centile, although she had put on some 0.3kg over the previous month and appeared otherwise well. DM reported this presentation positively to the core group meeting that day. M reported gastric losses of 600-700mls/day, and the appearance of a substantial gastric loss into the gastric bag was noted during the meeting. 8.25. There was a significant consultation on 28.6.19 with Dr V. She was referred due to her ‘faltering growth’ which is clearly a reference to her poor weight gain and consequent minimal growth. ‘Problems: 1. Referred in view of faltering growth 2. Gastrointestinal dysmotility 3. Global developmental delay secondary to cardiac arrest at six weeks of age 4. Epilepsy 5. Unsafe swallow 6. PEG-J fed - inserted in September 2018 7. High gastrostomy drainage 8. Episodes of significant distress on a daily basis 9. History of Inspiratory stridor and recurrent respiratory tract infection - currently on antibiotics 10. Severe dystonia 11. Constipation … Medications: … 9. Dioralyte to replace gastrostomy drainage - average 600ml per day 10. Feeding regimen of Neocate Junior which is concentrated to 1.26 Kcals per ml for the last 7 months- 750ml per day via pump at 37ml an hour for 20 to 22 hours (that would amount to 120 Kcal/Kg per day) Plan: 1. Discuss with parents that her calorific intake looks sufficient generally for growth. However, since there is ongoing faltering growth, we would aim to Increase the calorie content of her diet further (I asked the dietitian to discuss further concentration of feeds). 2. Reassured parents that the symptoms are not suggestive of any calorific loss (no vomiting or diarrhoea) …7. May need an inpatient admission in view of the faltering growth. … She is a two-year and four-month-old girl with the above-mentioned issues. The main issue according to mum has been these intense episodes of distress which continue to be ongoing and is sometimes associated with a worsening dystonia which tends to happen almost on a daily basis. She does not vomit however on days when the gastrostomy is clamped then she does vomit on those days and has worsening of her gagging. Her gastrostomy is generally kept on free drainage except on days when the gagging is better. She drains on average about 800ml per day, which is replaced with Dioralyte via the jejunal tube. She opens her bowels about twice a week and the stools are between type two to type five on the Bristol stool chart. On examination, her weight is 7.7kg, which is below the 0.4 centile and her length is 39cm which is on the 0.17 centile. There is no evidence of faecal loading on abdominal examination. I have discussed with her mum that given that she continues to falter growth, we have increased the calorific intake and that we can do this by increasing the rate of feeding or by increasing the concentration and hence l have asked the dietitian to have a chat with mum.’ 8.26. Shortly after this consultation on 2.7.19 A was admitted to hospital as she was unwell. She had been experiencing apparent episodes at home over the previous few weeks of very low blood sugars, the GP having provided blood sugar testing strips, following M using her own grandfather’s diabetic testing kit to have ascertained this problem. She was found to have low blood sugar on this date (albeit I understand that no lab tests to confirm were undertaken, and that strip tests are considered unreliable). It was thought it might be either metabolic or linked to her brain injury. The dietitian recommended using glyco-juice to raise her blood sugars but this would require gastric delivery and clamping the gastric drainage tube to assist absorption. 8.27. In late June/early July a further video of the pump was taken by the PGM, showing a third occasion when it should have been pumping feed through but was not working properly. This was raised by M at H1 when A was briefly admitted on 4-5.7.19, and again with her community dietitian DM in a telephone conversation on 5.7.19: ‘Mum also advised the pump does not work well with Neocate so may be contributing to low [blood sugars] and a liquid feed might be better. Advised cannot change feed because of the pump and has had low [blood sugars] even when the pump was working so this is not a factor.’
‘The mother has on-going concerns about A's Irritability. There are times when she is fine and times when she is distraught. She describes that her legs go in a funny position and go stiff. She feels that A is having cramps and is in pain. She feels that she may also be getting distressed due to the stomach issues and bloating. She feels that A suffers from separation anxiety from her. A spends most of the time either being held by the mother or lying down. The mother is concerned that if she cries she vomits leading to chest infections and a vicious cycle, therefore she does not leave her lying down for long’ and ‘A has a tendency to vomit often. The mother reports that the frequency of the chest infections has reduced and she is currently having 1-2 chest infections a month requiring antibiotics. She has had 4 Hospital admissions over the last 5 weeks.’ 8.41. In September 2019 B and C’s cases were closed to the LA’s Family Support and Child Protection Team. 8.42. A had a consultation with Dr F on 4.9.19. M gave a history consonant with severe dystonic spasms, pain, and disrupted sleep, and showed some tightness in her leg muscles, which prompted Dr F to promote A to the head of the waiting list for intramuscular botox A injections to rectus femoris and medial hamstring muscles on both legs, which took place under local anaesthetic on 12.9.19, and to prescribe Baclofen (an antispasmodic drug indicated for the treatment of abdominal pain) for general discomfort. 8.43. In late September A’s GP chased up a referral to the Metabolic team at H2 given the ongoing low blood sugar scares. She included in her concerns: why, if A is on 24 hour feeds, is she suffering low blood sugars; and why A has not gained weight over the past 12 months despite being on a high calorific feed? Ultimately this referral never bore fruit before the events later in the autumn that overtook it. 8.44. In late September another GP at the practice also expressed concern that M was using Phenergan (sedative anti-histamine), ‘for drooling and ?vomiting’, and asked M to check with the gastro-enterology team at her forthcoming appointment if it did actually help with vomiting and if it risked making A more sleepy. 8.45. To the Ellenor nurse on 1.10.19, M reported that due to increased salivary secretions she had bought Phenergan on the advice of the GP and pharmacist. 8.46. A suffered a further episode of chest infection with anti-biotic treatment in early and again in late September. Then, after attending a second-opinion respiratory consultation at H3 on 7.10.19 and following a vomit on the way there, she rapidly developed breathing difficulties and was admitted with aspiration pneumonia. An abdominal scan ruled out an obstruction as a possible cause of the vomiting. A remained at H3 until transfer to H1 on 13.10.19 and discharged home on that date. 8.47. On 8.10.19 M informed the dietitian DM during a long conversation that ‘Dr F thinks that [A’s] gut becomes temporarily paralysed due to her dystonia and that is why she is not absorbing’
‘I share your concerns regarding her weight gain and hypos and I am also concerned about her drainage. With regards to her weight, she should be gaining weight with the significant increase in calories she has had. M states dystonia as a reason for no weight gain but I have never seen a child with this excess of calories being administered and not gaining weight. I cannot increase the feed any further as she is at her maximum carbohydrate. This was discussed with Dr U. Dr U and Dr V have increased the feed further themselves …’ 8.51. On 4.11.19 A was taken to hospital but examination showed no respiratory symptoms and she was prescribed anti-biotics for an ‘?early aspiration pneumonia’. 8.52. A further set of concerns was raised by A’s GP by letter to Dr F dated 11.11.19: ‘A was brought into surgery by her mother because in the last 2 weeks she is having episodes of extensive extreme crying which she does not settle to. This is associated with the limbs, in particular the legs becoming very flexed and cont[r]acted or conversely fully extended and rigid. A usually settles by being picked up [by] her mum, but not on these occasions. The episodes can last 15 minutes or hours. It is reported as being particularly bad at night … She has been unwell in the last week with another chest infection, attending PAU at H1 and receiving antibiotics. On review today I witnessed one of these events of intense extreme distress. I have not seen A like this, even when unwell. At time[s] both legs crunched up tightly and other times they were extended and rigid. She appeared to be in distress on me touching her limbs… I am wondering if this is dystonia and if there is anything we can do? Or if this a phase/cycle which will resolve.’ (I note that this was less than two months after the treatment for dystonia provided by Dr F in mid-September.) The GP approved the use of ibuprofen, and not Phenergan as was claimed by M to the Ellenor nurse three days later. 8.53. Dr F replied by email to the GP as follows: ‘Generally a fluctuation in dystonia is secondary to a variety of other co-morbidities. The most usual is Gastro - constipation or reflux. Then Musculoskeletal pain. Then Anxiety / behavioural. I wouldn't necessarily increase background dystonic medication, but simple measures addressing these [other issues] initially.’
‘it was decided to give bolus of 30mls milk every hour despite not usually giving bolus via jejenostomy. I tried by gravity first half went through before she got distressed and it came back up the tube. I checked with [the consultant] who was happy for me to give a push a slow bolus over 5 minutes, I started to do this but noticed it went from going easily to suddenly having high pressure, it is as if the tube suddenly got squ[i]shed shut, then back to flowing easily this happened a lot during this feed. A also got very distressed. She then went for an xray, not yet seen the report. The next feed at 19.15 went through with no concerns and I was able to give 10mls flush.’ 8.67. There were no occlusions/alarms noted overnight with only PGM in residence with A on 29-30.11.19. S.N.CBD, from whom I also did not hear oral evidence, was on duty the following day, 30.11.19. PGM was noted to be present all day and M from about 12.30-2pm. S.N.CBD noted: ‘At approx 13:00 feed pump occluding continuously therefore 35mls given as boluses via syringe. A unsettled whilst feeds given via syringe and resistance felt continuously through feed ?A tensing. Mum reported that she believes that Jej issues are to do with A having inner dystonic episodes. She reports that she feels A tensing throughout feed which is causing pump to occlude constantly.’ 8.68. In PGM’s own note she recorded the pump working intermittently on this day, and that a nurse who had worked in neurology ‘also felt that it could be dystonic contractions that might influence the tube and cause the occlusions’. 8.69. Later that afternoon A had a tubogram, (an x-ray scan following the injection of a contrast medium in order to check patency and position) which showed no blockage and correct position, and both the contrast beforehand and flush water afterwards were introduced easily. The surgical team concluded that there was no mechanical issue with the jej feeding tube. 8.70. Again there were no issues with alarming or occlusion recorded overnight with PGM only in residence 30.11.19 to 1.12.19, nor during the morning of 1.12.19. M arrived at about 12pm on 1.12.19 with Child C. 8.71. S.N.CBD noted that from about 1pm A’s feed pump was continuously alarming saying ‘occlusion’ and she queried whether A’s apparent ‘dystonic episodes’ were causing it. She described A as in M’s arms at the time and so repositioned her onto the bed in the way she had been lying in the morning when there had been no problems, but the occlusions continued even with the removal of Dioralyte from the mix, and so a decision was taken to start IV fluids instead of feed and restart the ml for ml fluid replacement (Dioralyte). 8.72. Again there were no issues overnight with the feeding system alarming while PGM was resident 1-2.12.19. A was prescribed Alimemazine (a sedating anti-histamine) from the morning of 2.12.19. M arrived at about 11am/12pm. 8.73. S.N.AdAd (from whom I did not hear evidence) noted that: ‘Losses of 612mls by 1700 this afternoon. …. Mum arrived at 1200 and sat in bed with A and since mum arrived pump was alarming frequently through the day due to blockage. … Mum stated that she thought beeping and blockage was due to spasm in muscle from being dystonic.’ 8.74. This led to A being reviewed that afternoon by the paediatric neurology team and Dr S recorded: ‘In regards to her dystonia mum reports worsening over the last 6 weeks with frequent periods of leg flexion at the hips, knees and dorsiflexion of the feet associated with distress and crying. Mum reports that these are happening several times per day with no obvious triggers. However, mum feels that when feeding is stopped (A is on 24 hours jejunal feeding) then dystonia might be less’. 8.75. On the same day, 2.12.19, S.N.FA told S.N.AdAd (who recorded S.N.FA’s account in her own note as she was the nurse charged with A’s care on 2.12.19) that a concerned parent on the same ward had seen M behaving suspiciously: ‘Staff nurse [FA] reported that parent opposite bedspace from A stated that she was unsure if mum was doing anything to the child as she saw mum with syringes of water pumping it in A. Earlier on in the shift there was a pool of water under A's bed which unsure where is came from.’
‘It has been reported that on06/12/2019 , when A was on the paediatric general ward another parent in the bed opposite reported she witnessed A's mother getting out a syringe out from under her shirt and injecting something to the PEG/JEJ. Nursing staff report that when mother is present on the ward the feeding pump continually occludes which is not reported when mother is not present. Today (06/12/19) she was witnessed by nursing staff to be disconnecting the feed and allowing it to run into a tissue. In addition, she was reportedly witnessed to clamp the line, kink the line and apply pressure with her elbow This was raised immediately with our safeguarding team’. 8.94. No occlusions were noted overnight after M left and when PGM was resident with A on 6-7.12.19. There was a low blood sugar alert which resolved on later checking. 8.95. Events on 7.12.19 were also significant. S.N.ST noted two occlusion alarms first thing in the morning when PGM was sole resident with A. One was the IV line which was caught in A’s bent arm and the other was the Dioralyte line that was found to be coiled into a kink and the nurse straightened it out. 8.96. M arrived on the ward shortly after noon. The feed pump occluded once before PGM left the ward at around 1pm. Between then and M’s departure that evening at some point after about 5pm there were repeated feed pump alarms. S.N.ST repeatedly noted a kink mark in the same area of the tubing that was under the blanket in the section nearest to A’s body. She also saw M replacing her hand under the blanket then removing it as soon as the pump alarmed. She saw M appearing startled when she and the student nurse went over after one observation of M kinking the tube, and M covering the tube lines with the blanket despite after each tubing check the nurse placed the lines over the blanket so that they could be seen. She also stated that she noticed M actually kinking the tube with her hand which prompted an alarm, and on another occasion saw M hold the Dioralyte line down behind the bedside rail – then when the pump alarmed M moved her hand and the nurse saw a visible kink where M had been holding the tubing. She was clear that there was no sediment in the tubing and would not expect it with this feed and so she was surprised that M claimed to have been clearing sediment. 8.97. S.S.N.EDC assisted from time to time as the pump alarmed so often and found no explanation on checking the lines. She too encouraged M to leave the lines visible above the blanket to see if anything was wrong and said that M could have been in no doubt about this request, but it would only last a few minutes before M would cover the lines over again. S.S.N.IBE also observed M put her hand under the blanket near where PEG-J tubing was and seconds later the alarm sounded. Then when S.N.ST stood up to attend to the alarm she (IBE) saw M remove her arm from under the blanket. S.S.N.IBE also sat with M and A for half an hour to chat after dealing with a feed pump occlusion alarm at around 2.30pm, during which time M’s hands were visible and there were no occlusion alarms. 8.98. Between 12-2.20pm A’s gastric losses amounted to 675ml. During this period a student nurse working with S.N.ST saw M repeatedly move her hand in and out of her top, and both S.N.ST and S.S.N.IBE observed M unscrew the gastric bag and hold it out to the side. S.N.ST noted that at 2pm she measured a gastric loss of 310ml, then recorded that at 2.10pm she aspirated the PEG-J gastric port (that is to say, she used the suction from a syringe to withdraw any stomach contents) and obtained only 2mls of fluid. She recalled in oral evidence seeing M massaging A’s stomach. Ten minutes later at 2.20pm, after she had returned from drawing up medications in the drug room, the bag contained a fresh gastric loss of 365ml. S.N.ST also noted M applying pressure to A’s stomach at around 4.20pm and when she saw she had been noticed she stopped and asked the nurse to vent her stomach using a syringe (via the gastric port). S.N.ST went to fetch the syringe and at that point the pump alarmed and on uncovering A to check the tubes the nurse saw that the jej tubing clamp was closed, therefore blocking the tube. There was neither aspirate nor air on attempting to vent with the syringe. 8.99. S.N.ST also recorded that M had been asking several questions about TPN and stating that it was her opinion that this was the best option for A. 8.100. No events or alarms were noted that evening and overnight when solely PGM was resident with A on 7-8.12.19, other than a low blood sugar which had recovered on rechecking later, and an IV pump alarm as it was the end of the infusion and not an occlusion. 8.101. M attended the ward at 12.30pm on 8.12.19, and PGM left at 12.50pm and was recorded as being absent until about 4pm. The same pattern was observed as on previous days with numerous inexplicable pump occlusions. S.N.SP noted a kink or dent in the tubing, and S.N.XG heard a click like a clamp being closed as she approached the bed on one occasion. Both noted repeated fiddling by M’s hands under the blanket. Once PGM had returned to the ward S.N.XG sat and chatted with the family for about 1 hour from 4-5pm and recorded times in the record that was being kept of significant events. No alarms were noted during this period. Shortly after 5pm she recorded M removing the blankets from over herself and A and she left the ward at 5.30pm. 8.102. S.N.XG also recorded that after draining gastric losses each hour at between 12mls and 80mls of a pale green aspirate that had a pH of 8-9.5, at 2.45pm it was suddenly full within a few minutes of her last having looked at it with 200mls of a much paler, clearer liquid that was not body temperature nor room temperature but cold to the touch. She tested its pH which was 7. She said she had never felt a gastric loss liquid that cold before. She noted that M had a cold drink in bed with her, and that may have been lying in the bed near the drainage bag. 8.103. From this date, 8.12.19, there were no longer any pump occlusion alarms. M’s suggestion to explain this is that the Gabapentin that was prescribed on 4.12.19 had worked in stopping the dystonia stomach spasms that she had said was the cause of the blockages. M claimed that the neurologist had told her that it would take a few days to work. 8.104. Again no events or alarms were noted that evening or overnight or the next morning while PGM was the sole resident 8-9.12.19. M arrived on the ward at about 11am, and PGM left for her break. The time PGM left is unknown although it is likely to have been after 11.45am when she is noted to be present during a gastroenterology ward round and before 1pm when M is noted as the carer present on the significant events record sheet from 1-4pm. PGM is noted to be back on the ward by 5pm on the same document. 8.105. S.N.KS recorded having seen M moving her hands around under the blanket and repositioning a large white drinks cup so that it was near the drainage bag and then put the blanket over it all. She also noted the following: ‘A mother in the opposite bed mentioned that A was very cute but small, and that she saw mum be quite rough with her, I asked if she saw anything but this mother only mentioned she'd seen mum squeeze A's stomach and nothing else’. (As will emerge later in this judgment, this mother is likely to have been lay witness Y.) 8.106. S.N.AA noted an unusual pattern of gastric losses with 56ml draining from midnight to about 11am and then once M was on the ward until she left at about 5.30pm the gastric losses reached a total of 560mls. The initial aspirates from the morning were yellow/green and pH of 8, whereas a large loss that M drew the nurse’s attention to was clear and appeared fizzy with a pH of 7. Ward Sister AS was shown this bag of gastric aspirate by S.N.AA and confirmed its appearance with bubbles in the bulk of the liquid not simply at the surface. 8.107. That afternoon Ward Sister AS noted M removing the drainage bag and AS then reattached it. She also noted repeated hand movements under the blanket. She removed the blankets when she became concerned that M had seemed to remove something from her top and hold it under the blankets. She did not see anything however. This was also observed by S.N.AH who documented it. Her evidence expanded on this to recall that she observed what looked like a screwing action under the blanket. 8.108. Again PGM was the resident carer overnight with M leaving shortly after 5.40pm, and no particular events were recorded overnight 9-10.12.19. 8.109. M arrived on the ward at about 12.30pm. S.N.AA recorded M moving an object that seemed to fit in her hand from behind her, and down in front of her leg. A’s observations monitor then alarmed and M appeared flustered and red in the face when the nurse removed the blanket to check the probe was still in place. A similar moment of M appearing flustered was noted by Ward Sister AS who walked around a corner to the bed space and saw M appearing to remove something from her top, some sort of purposeful movement from her jumper then her hands went back down by her sides. 8.110. An important observation was recorded by S.N.ELB who, in addition to seeing M fiddling her hand under the blanket covering A, also saw her squeezing A’s stomach hard. Her description was of both hands, one at each side of the stomach with fingers at the back and thumbs in front, with a strong in-out squeeze with the fingers and thumbs, which she said stood out because it seemed strong and A was tiny and it was over the top for a child of her size. 8.111. Slightly later that afternoon S.N.ELB recorded as follows: ‘Myself and another nurse [S.N.AH] in the bay witnessed mum place her hand under the blanket and it looked like she was doing something underneath it. She then used her other hand over the blanket and it looked like she was unscrewing something. She then did this again a few minutes after. She said to the nurse she was letting the air out. - 15:27 I witnessed mum put her hand under the blanket and fiddle with something underneath it while A was laying on her chest. She then pulled her hand out and looked like she put something in her jumper. She then took the blanket off and placed A back in the bed. The drainage bag is now nearly full with clear fluid.’
‘Written in retrospect of the past 30 minutes events: - I had been away from the bedspace with Safeguarding Nurse BM discussing A. I came back to the bedspace around 17.45 and was handed over from the other nurses in the bay that mum had left at 17.30. I went over to drain what was left in the bag as it was still the clear fluid. I used a 60ml syringe to drain the bag as there was only a small amount in there (15ml but amended to 24ml in subsequent note). I entered the sluice with the syringe and was followed in by the grandmother of a patient in the bedspace opposite A (Bed 30). She disclosed to me that she had been watching A's mum all day and had seen her use a syringe to give things to A. She also told me that she had recorded her doing this on her phone. She showed me her phone and has multiple videos that she has taken today. The one video she showed me showed A's mother clearly with a syringe in her hand giving something to A through her PEG. The video shows me then approaching the bedspace and A's mum hiding the syringe in her jumper. I said to her that I would have to tell someone about these videos and it is likely that other people will need to come and look at them. I then informed Safeguarding Nurse BM and Matron...’
‘Mum reported that she is pleased with A's progress but that she was making progress prior to her being arrested. She reported that A gained more weight in her care in hospital than she has after. She reported a new drug was started prior to her being arrested which has made the respiratory changes. Did not name drug. Mum reported that A has had a couple of hypos during this admission and she is being referred to GOSH for investigation. Mum reported A is still having spasms as medication has been stopped. Reported on full gastro feeds with ? 8 hour break. Mum reported that they wanted to try these treatments before such as blended diet but were not allowed. ([I] did not mention this was due to the excessive drainage which resolved out of Mum's care).’
‘When I arrived, A was initially sitting in her specially adapted seat, but was also seen playing on the floor. She was happy, laughing and smiling throughout the visit. This was a very different presentation to the one that I had seen at home in the previous proceedings, when A was often distressed or sleeping in her mother's arms.’ 8.141. She additionally noted in relation to A’s health: • A has put on 2kg since being placed in foster care, as well as 2kg in hospital, bringing total weight to 12.7kg. • No chest infections • No use of suction • No feeding tube blockages • No feeding tube alarms • Tube feeding reduced from 24hrs to 15 hrs per day [feeds orally 2x day] • No signs of dystonia, feet and right arm/hand relaxing • Sleeping well through night; rarely sleeps in day, save short naps • No seizures • No vomiting • Medication being reduced • No on-going concern about blood sugars so no regular testing needed • A’s medical team shocked at her progress and health improvements. 8.142. On 14.2.20 A’s PEG-J was removed and replaced with a PEG button, so that it no longer includes the tubing that extends through the pyloric sphincter into the small intestine, but simply into the stomach. 8.143. Following a clinic appointment with Dr U on 6.3.20, Dr U wrote to A’s GP: • “I was beyond pleased to see A in clinic today and was astounded by how well she looked and not just with her general weight gain, but also with how remarkably developmentally different and interactive she was, compared to the last time l encountered her on the ward.” • She has made “remarkable progress with her weight” (13.27kg – 34th centile) • No seizures have been noted. • The foster carer has not noticed any dystonic movements or abnormal posturing. • She can hold objects • She is babbling and can play • Her sleep is good- she sleeps through the night • There are no concerns with bladder or bowel function • She looked very well on observation. • No dystonia or abnormal posturing when examined. And at this clinic Dr U ended the prescription of Domperidone (anti-vomiting). 8.144. By 5.6.20 all gastric feeds had stopped and A has since fed entirely orally. Water continues to be given via the gastric port due to A’s difficulties and/or aversion with swallowing. 8.145. A’s weight reached the 75th centile at 16.1kg by mid-July 2020. Twice her weight of 8 months previously. Her intake has even had to be monitored and modestly reduced in order to ensure that she does not now gain too much weight. 8.146. As at this mid-July 2020 the only medications in use are Movicol (if required to ease constipation) and Esomeprazole (used to treat reflux). 8.147. I have seen recent videos of A in foster care where she is clearly physically active and responsive, understanding the words and encouragement of her foster carer to engage in various movements to strengthen and use her legs in her walking frame, babbling, and ‘chatting’ back. I have heard the evidence from the F in which he delights and marvels at A’s progress, clearly moved at her abilities: completing rhymes, trying out words, ’wonderful changes’
‘3.96 While M does not present with Health Anxiety about her own health needs, she does present with health anxieties about A. Her health anxieties about A are likely to have become exacerbated due to a lack of support or management of her own symptoms of anxiety that she experiences as a consequence of ASD. 3.97 Health Anxiety in a mother with psychological or physical health issues is typically associated with them perceiving that their children have more emotional and physical symptoms compared to the perception of their children's health needs by 'healthy mothers'. Mothers with physical and/or psychological health issues report having a more negative illness perception and more health anxiety on behalf of their child, as well as discontent with their child's medical consultations, when compared to 'healthy mothers' (Thorgaard, 2016). 3.98 A parent with health anxiety may impose a Factitious Disorder on a child in their care by falsifying manifestations of an illness.’ ….. 3.102 Although there is no clear relationship between any specific mental disorder and abusive behaviour towards children (Adshead et al., 2004), it is common to see mothers who fabricate illness with somatising and 'borderline' personality disorders, as well as symptoms of anxiety and depression. 3.103 M does not demonstrate the factors that are indicative of an increasing risk of FII in her child. M does not have a personality disorder or somaticizing symptoms but does demonstrate anxiety and depression, primarily as a consequence of untreated comorbid neuro-developmental disorders, and stressors associated with meeting the care and parenting needs of her children. 3.104 M has legitimate health anxiety related to her daughter's physical health needs. The legitimate health anxiety about her daughter that M experiences increases when her daughter is in the care of others. 3.105 It would appear that M periodically has an exaggerated sense of anxiety about her daughter's health needs as a consequence of her own anxieties, and the post-traumatic stress symptoms that she experiences…’ 9.18. Again I note that I have not heard evidence from Mr Hutchinson. And while my attention has been drawn on M’s behalf in particular to paragraphs 3.96 and 3.103 in his report, I also note that in these paragraphs set out above Mr Hutchinson identifies anxiety/health anxiety which he states can be a factor in those who fabricate illness, but also states that she does not demonstrate factors indicative of such risk. In that respect it is a somewhat confusing series of statements, and they are made prior to the determination of the allegations considered at this hearing and in this judgment (which should assist in a consideration of the NICE guidance list of signs and issues relevant to FII that he also sets out at his paragraphs 3.99-100, and which should properly inform any such opinions). I confine myself here to deciding the facts, and other than acknowledging that M is undoubtedly considered to experience anxiety as explored in his report, I will not include in the analyses required in this judgment the opinions of Mr Hutchinson as to risk factors. 9.19. M is to be credited for undertaking therapy for her complex PTSD and I note the benefits that she has achieved as a result. I note the impairment of emotional, interpersonal and occupational functioning that Mr Hutchinson identifies. This also ties in with M’s impaired social functioning as a result of her ASD. 9.20. M describes herself as really disliking visiting a hospital, due in part to the experiences when A suffered her ALTE. The F and PGM’s evidence to me was that M is uneasy and dislikes hospital. I bear this in mind, and that this would have been enhanced beyond that experienced by any parent of a sick child partly due to M’s inherent vulnerabilities, but also due to the knowledge that she had been accused of FII in the previous proceedings. I also note the F and PGM’s evidence that they were sometimes concerned as to how to strike a balance that met health anxieties for A, met M’s anxieties to raise issues and ask questions, but did not seem to be pushing for too much. They both described, to assist with these anxieties, that they would as a group try to work out a list of topics or questions to be raised at forthcoming clinic appointments. I also note, however, that they did not agree that one or other of them attended medical appointments with her to ‘protect her from allegations or misunderstandings’ as is claimed on her behalf, but in order to provide support and to hear what the clinician had to say. 9.21. Notwithstanding her vulnerabilities, and including the fact that they were undiagnosed in 2018 when she was first accused, it certainly can be said that she engaged with professionals throughout those previous proceedings, and has continued to seek appointments, advice and action from professionals since their conclusion. She also continued to parent the children, with active support from F and PGM throughout. 9.22. POLICE INTERVIEW – The first point to note is that this was undertaken without any intermediary support for M although she had her solicitor present. It took place on the evening of 12.12.19 from about 8.30-10pm, the day following the precipitating events in this case. M and her solicitor had not been shown the flushing video in advance, and so these were her first responses to seeing that recording. The interview did not deal with the squeezing video as this had not reached them, for the reasons discussed elsewhere in this judgment. 9.23. I am asked to bear in mind that this would have been a distressing situation and that M answered all the questions asked of her freely. I am asked to note that M showed that she was trying to manage her feelings and compose herself, for example by putting her hands together. On viewing the DVD she did appear to be remarkably composed in the circumstances. 9.24. I note that many of M’s answers are attempts to explain A’s conditions, various procedures and equipment to the officer, and how palliative care services may be different to the end of life services for adults. She ascribed the pump alarming to dystonic symptoms and denied adding fluid to increase gastric losses save for providing gastric flushes and/or water to hydrate. There are several points or explanations made that M consistently maintains over the course of these proceedings, such as that she was never told not to use syringes, that she was looking around but not to check if nurses were around or watching but because it was a busy ward and she was anxious, and principally that she had not acted to harm A. 9.25. However, there are a number of concerning responses provided by M, that were either inconsistent or untrue or that she has subsequently dealt with differently, for example: a) In relation to why the pump alarms had sounded so frequently she said ‘But it only happened when she was in dystonic posturing position… And then when she was relaxed and asleep, when there was no contractions, it didn't do it.’ – This was untrue as many if not most occasions of the alarm sounding took place while A was peacefully lying on M, and showing no signs of posturing, distress or dystonia. b) In relation to her use of the tubes in the hospital (and it is important to note that this comment comes before she is made aware of the flushing videos): ‘DC STEVENS: Are these required to be used in the hospital by you? M: On occasion I have been asked to use them, yes. DC STEVENS: Okay, to do what? M: To either give water flushes. I've been asked to give Movicol as well through the tube. And venting, which means delivering, like, taking air away. DC STEVENS: Okay. M: You connect it to the tube and the air comes out. DC STEVENS: So you've been asked whilst at hospital. M: I have been asked, yes. A couple, not regularly, but a couple of times, yeah. DC STEVENS : Okay. Do you recall the occasions you've been asked to do that? M: It was mainly, it's been asked a couple of times, but mainly, once or twice by a student nurse. There was one nurse called P [?] particularly who I remember, who gave me a bottle of Movicol and a syringe. And she said to me, 'Could you deliver this to her'? Which I did. And I told her as soon as I'd done it.’ – the clear impression given is that she was asked to undertake particular activities, including flushing, on a couple of occasions only, not regularly, and that she reported back to the nurse immediately in the example she gives relating to Movicol. c) Later in the interview M is shown the 59 second flushing video (Video 1). Like many of us on our first viewings of the clip, the officer did not spot that in the first few seconds we can see M is already administering water. He then asks what M is doing subsequently when she goes into her waistband and uses an item in the cup in front of her and fiddles her hands under A’s blanket. M answered that she was ‘flushing’ and confirms that she was using water from the cup and that she had drunk water from that cup and that she returned the syringe to her waistband because she did ‘not have any pockets’
‘DC: Do you recognise when that was then? Because you say that you flushed occasionally. M: No, the flushing is not occasionally. The Movicol was the one that I was talking about’. – This response contrasts unconvincingly and inconsistently with her earlier assertion. d) M claimed that PGM would not leave the ward leaving her alone until about 3pm: ‘Usually it's not until about three o'clock’, and in response to the officer explaining that he was going by the timings in the records she further bolstered this with: ‘No, I'm just telling you, normally, normally, because I usually allow her about an hour or so for Nan to go and get something to eat and stuff like that’
‘But they are also, just to let you know, they are also meant to be flushing the tube regularly with water as well, so you have to bear that in mind’
‘No. They're actually using different bags to what I'm used to using anyway. So I don't even know how to use them.’
‘M: That was, that particular, as I explained earlier on, there's flushing and there's giving water to hydrate. DC STEVENS: Yeah. M: As long as you clamp it afterwards, it doesn't cause a problem. DC STEVENS: Okay. M: We've been trained to do that since we've had the tube. DC STEVENS: Right. M: And as she was getting dehydrated, it's, I didn't think there was anything wrong with that.’ – This is a development from M’s earlier explanation of flushing, to include a further reason for giving water which was to hydrate A on the basis that she was getting dehydrated. It is also the third mention of needing to clamp afterwards, which refers back to the observations I have already made above. In her written statements there is only mention of a single 10ml flush and that she could not remember whether or not she had given water for constipation. Additionally, there was no attempt to check A’s hydration levels with nurses or PGM, no explanation to nurses that she had just hydrated her and so the tube needed clamping, and no actual clamp of her gastric tube afterwards in accordance with the hydration she claimed she was undertaking. 9.26. M’s WITNESS STATEMENTS & EXHIBITS – M provided four written statements in January, March, April and October 2020. I have referred already to the variety of video clips and still images M has provided, which have been most helpful in understanding some of the key issues. Attached and referred to in her October statement was also an extract from the pump handbook referring to ‘Gastric Compression’ (to be conducted by leaving the gastric port open and using gravity drainage (into the bag or syringe) or low suction (via syringe)), and from which M cites and relies on its advice that flushes should be conducted every 6 hours. Detailed issues arising from M’s statements will be addressed further when considering the separate issues and allegations. 9.27. M’s ORAL EVIDENCE – Again I do not intend to run through details arising from M’s oral evidence here but will do so when considering individual issues and allegations. 9.28. However, I note the following points. M attended court every day in person or remotely unless she had to attend a contact visit. She was keen to give evidence and often provided highly detailed, precise and rapidly delivered answers. Sometimes her speed and precision were unhelpful in that she would hit upon a particular small element of the question rather than always addressing the overall point, but it was possible to return to the overall point with further questions or clarifications. 9.29. Despite several interruptions and requests by the intermediary to avoid particular forms of questions, particularly tag questions, it was clear that M almost always reached a very quick and accurate understanding of the meaning and import of a question. Corrections and clarifications were appropriately pursued with the help of the intermediary where necessary. 9.30. While it is always a stressful and fatiguing experience to give evidence, I appreciate that M will have found it particularly so given the mental energy required to manage her anxiety, to concentrate, to assimilate information and manage her social and communication vulnerabilities. It was clear that frequent regular breaks, and being guided by the intermediary in that respect were of particular help in managing her difficulties. 9.31. My overall impression was that M was trying extremely hard to answer all the questions. However, while bearing in mind all the positives and her vulnerabilities and related caveats that I have set out above and heard in submissions, I was also driven to conclude, through a number of inconsistencies and more reluctant or less plausible responses, that she was not a reliable witness. And for reasons that will be expanded upon further in this judgment, I found that where her evidence conflicted with those of another witness I have preferred the evidence of that other witness, whether from her family or a professional. 9.32. FATHER 9.33. F has attended every day of these proceedings via remote link either from home or his counsel’s chambers. He has done so by using up all his paid leave and also obtaining unpaid leave, and has continued to assist PGM in caring for his two older daughters. 9.34. He has provided three statements in these proceedings and signed a police statement in early September 2020. Although he had available to him the case papers and videos throughout the proceedings, he did not have full access in that PGM had to buy him a laptop shortly before the hearing in about September so that he could access Caselines and see the documents coherently and see the videos. 9.35. In his statements, he repeats his overall position which is to attempt to understand the vast amount of evidence and to be led by the expert medical evidence and any findings made by the court. 9.36. He repeats in his statements his regret at saying ‘We will beat the fuckers’ on the occasion of M’s arrest in December 2019. He says it was to reassure PGM and because of his shock and upset at the turn of events. 9.37. He provided his police statement over the telephone during the initial lockdown period in the second quarter of 2020, and was asked to sign it electronically in early September. In that statement he said that M was a brilliant parent and that he could not fault her, and in relation to the flushing video he said this: ‘It appears to me, as if [M] is putting a flush to the tubes and flushing it out. Also, [M] does not have great mobility when she is sitting down, so she would have placed the syringe in her waist band or in her bra as she had no pockets to put it in. This was a common practice for [M] to keep her belongings such as phone or keys in her bra as clothes for her size didn't usually have pockets! Therefore, I can see how a lay person would watch that video and be of the view, that some kind of foul play may be taking place. However, because I know [M] and of the procedures that we have been allowed to perform ourselves, I am not concerned by her actions on the videos I have been access to view.’ 9.38. I note that F would not have seen the squeezing video as it was not yet produced, and that his comments appear to indicate that he had not looked so closely at the longer flushing video to see that it in fact shows M carrying out two occasions of inserting liquid into the gastric port within a few seconds of each other. 9.39. What is of particular note is the development of F’s position over time and the clear impact upon him of having seen and heard the evidence of the nurses, the clinicians, the experts, the lay witnesses X and Y, the M, and having seen the videos played carefully and queried closely, and having had the opportunity to consider A’s remarkable progress in foster care in that context. 9.40. It was complained of on behalf of M, and also in submissions, that it was wrong for an advocate to explore with a witness their opinion of the evidence and that such evidence should be discounted. However, I am bound by the case law to attend very closely to the evidence of family members. In this case, the F’s position appears to have shifted from loyal (police statement) or very much on the fence (care proceedings statements), to upset and deeply concerned that the evidence he has seen and heard had changed his overall understanding. In the circumstances where he was intimately involved in M’s and the children’s lives, and where such a shift has emerged, it appears to be central to an understanding and analysis of his evidence to comprehend the nature and provenance of such a shift, and it would be artificial to try and do so without asking his opinion of key areas of the evidence. 9.41. The following is submitted on F’s behalf in relation to the M’s submission that it is wrong for the parties to be asked their opinion on certain evidence, as it suggests that everyone is proceeding only on the basis that the evidence in question is true: ‘This is very far from accurate in the case of the Father. For a long time, he championed and defended the Mother, understandably believing her to be wholly blameless. As the body-worn camera footage shows, the Father was shocked by the Mother’s arrest and, as is necessary in the case of suspected FII (and consistent with Royal College Guidance) he had not been alerted by any professional to any of the concerns. It is the weight of the evidence, and his careful reflection upon it, which has driven him to a different position; this has been and is a very sad and painful process.’ 9.42. This sad and painful process was noticeable during the course of his oral evidence, in which he pointed out aspects of the evidence that had caused him to pause and reflect and to feel upset at what he was seeing, hearing and being made to think. When challenged about his shift in position, he described that he had not then seen all the evidence, that he was ‘very much in shock and trying to rationalise.’
‘It is quite clear that the schedule was designed to be exculpatory of the Mother, by establishing that the bulk of the feeding was carried out by the Father or Paternal Grandmother. Although the Father and the Paternal Grandmother had a good deal of involvement in the making up of feeds, this does not, as the Father realises, exculpate the Mother; neither he nor the Grandmother would sit and watch the feed go through.’ 9.46. M was also quick to call F a ‘liar’ when it was put to her in cross-examination on his behalf that her account of the regime at home was inaccurate. This, as F said, angered and concerned him. 9.47. He had no recollection of the extensive vomiting that M claimed to the court had taken place after A was discharged from the July H1 admission. When M was asked about her email sent to the GP on the morning of 16.7.19 the day after A’s discharge the evening before, she claimed that A had vomited on the night of her discharge on 15.7.19, and that F was lying about how ill A had been. 9.48. He remembered that A left hospital with her gastric bag off, that she was able to tolerate that and was thriving and putting on weight and was well. He recalled she was playing, laughing and happier when discharged on the evening of 15.7.19. Later on she became more miserable he recalled, with the distended stomach which was filmed on that occasion, and that her PEG-J site was infected and uncomfortable. But he was quite clear that she was not seriously ill as M suggested but simply appeared to return to a similar miserable state as she had been before the admission, albeit she no longer had the drainage bag attached. This picture is substantiated by the source documents such as the note on discharge and the video. 9.49. He was only aware of the two occasions when the pump failed to push the feed through, the one he recorded in early 2019 and drew to Dietitian DM’s attention because he was so upset and worried about it, and the second which PGM recorded in late June. He was unaware of any others, let alone the two full feeds per week that M claimed were not being delivered by the time she gave her oral evidence, nor had M informed him of these pump/delivery failures. His evidence was striking and emphatic, and I have no doubt that he would have recalled such serious failures if he was made aware of them, given the actions he had taken in relation to it himself. He said with some exasperation: ‘if there was that much left that often I don’t know why we did not take more videos’
‘I was never told of other problems like that. I would have taken more videos and shown them to the GP and [Dietitian DM]. It would have been unacceptable and worrying’. 9.82. She was equally clear about M’s assertion that she had sent videos to Abbott: ‘I never talked to M about sending videos to Abbott. I would have got on and done it straight away the same day and I would have remembered. They are good at getting replacement pumps to you.’ 9.83. In terms of the pump occluding and alarming at home, she described how they would check for clamping, kinking, sediment, finished feed and would then prime and restart and if that did not work they would sometimes put on a new giving set or remake her whole feed. She confirmed that she did not mention A’s behaviour as a cause of the alarming as she had not noticed that as a possible cause at home. She confirmed that even these problems did not have a significant effect on the volume of feed reaching A as it would only take a few minutes to sort it out each time. 9.84. Like F, she confirmed that although she set up a number of feeds at particular times of day on certain days, she would not necessarily be there to see if it had gone through. I note that other than Tuesday night on M’s schedule, PGM was said to be responsible for all other midnight feed preparations when the full amount delivered would have been showing. She described making it up at about 11pm and then A would go to bed and she would return to her home to sleep. She confirmed that although you could see the amount of feed that had gone through on the pump she never checked it as there was no need to, that they had no reason to doubt each other, and that she would reset the tally on the display at the midnight feed. 9.85. In relation to the H1 admission in July 2019 she recollected how much better A was in the last few days when she was caring for her alone. She took her to the hospital fete and around the garden. She had put on weight and was ‘very happy’ and ‘moving her right hand a bit more’. 9.86. Having cared for A for several days she then returned to her own home after she was discharged on the evening of Monday 15.7.19 to her parents’ care, and went to work on the following days (Tuesday and Wednesday) and did not think she had any care of A during those days. She could not remember any discussions with M about the effect on A of having no drainage bag in those days following A’s discharge, but she told the court that because of the controversy over what M had been saying about A’s condition, she had checked her mobile phone and she had been texted by M on the afternoon of Tuesday 16.7.19 that A had ‘nearly vomited three times’
‘I saw the woman in the bed opposite looking around, taking a syringe out of her top or leggings in her belly crease and drawing liquid from a cup then unscrewing the bag and pushing the liquid into the bag and then she would squeeze the baby’s belly and then she would shake the bag to see what was coming out. I saw her do that lots of times. I was shaking, could see it was not right. She was putting something in the baby and we could not see what, and if a nurse passed she would put it away and quickly chat and she would keep an eye on nurses’ desk and watch and take opportunities. I saw it 20 times at least… The video is only the tail end of it – only thought of that after I had seen it. I saw her take the syringe from the left side of her leggings, put it into a white cup between her legs and holding the baby in her right hand and she drew it [the syringe] up – it’s very easy to do with one hand – we do it all the time. I definitely saw her screwing it into a tube. She had a blanket. She kept shaking and studying the contents of the bag. The tip of the syringe went into the end of the tube, the PEG coming out of the tummy – not the end of the bile bag – the bag was off and it was going into the tube… She was sending [her relative, PGM] off to buy more drinks and things, to get her out of the way I think… She was looking very shifty and looking or watching to see and whenever anyone wasn’t there she was doing what she was doing… I know why I started looking at her – she was acting shifty, and pulling something out of her trouser top and pushing something into the baby’s tummy – things need to be sterile… I said I had wished I had taken the videos earlier when it was more rampant – like continual. Before we took the videos she was doing it during the day. A lot of times. In the two hours before the video maybe 20 times. I’m telling the truth. I told the hospital and the police. I remember thinking I’d wished I’d have taken the video earlier in the day when she was doing it a lot… [M used the syringe] sometimes three or four times in a minute if no one was around. She would put the syringe back in the cup and then back into the baby, then back in the cup, then baby, then cup, then baby, then back into trousers.’ 10.11. X was criticised for not mentioning in her statements this level of detail as to the numbers of times she had seen M behaving in this manner. I note she thought she had done so to the police officer, and that in both her statements it states: ‘I watched this take place all the time she was there.’
‘She would put fluid into the tummy and squeeze, but not every time. I saw her two hands around the tummy squeezing it, and I can imagine the baby’s tummy fluid coming out into the bag and then looking presumably to examine it. That’s what it looked like to me… She might do that [syringing fluid] three or four times, and then squeeze the tummy and look at the bag. I saw the squeezing maybe six to eight times, maybe ten… She squeezed, she did not massage. [16 year old] has a similar bag. I know what I saw and I saw her squeezing the tummy and looking at the bag and shaking it. It was not massage. I can only go by our [16 year old], I am not a medical person. You don’t need to massage air out. Air will come straight out. Fluid will come out if you press it. You don’t need to squeeze or push because air comes out naturally with the pressures of wind… Four fingers on one side of the body and thumbs on the other side. Both hands. The baby was always facing her when squeezing.’
‘Why would you be doing it shiftily and looking around and hiding it? It would be above board and the nurses would be helping with it’
‘They did not ask me or tell me – they just asked me what happened and I told them about squeezing the tummy so contents coming out, and picking up the bag and looking and shaking.’ 10.15. She was unaware of any of the concerns held by the nurses and was quite clear that she was completely unaware that M was being observed in any way. She recounted a busy ward with four nurses tending to a number of patients and having no prior conversation or information from any nurse or doctor. She was equally clear that it was only after she had mentioned her concerns at what she was seeing to her daughter Y that her daughter told her about an awkward conversation she had previously had with M. And that it was only when she and her daughter mentioned what they were seeing to the consultant Dr K that she first became aware that the professionals had their own suspicions about M. Later in her evidence she recollected speaking to S.N.ELB briefly in the sluice room before she spoke to Dr K, but it was to say what she saw and it did not alter her clear evidence of not having been informed of any suspicions or concerns. 10.16. X was quite clear that M had done no harm to her, X, and that all she was saying was what she had seen; that this was ‘not her forte’; when it was put to her that she had simply found it ‘exciting’, and that she was trying to ‘build up’ something, she firmly denied that; said that she wished the best for M; and that ‘I gain nothing out of this’. 10.17. Y gave a similar but briefer account than that of her mother’s, of seeing the use of a syringe to draw up fluids from a cup between M’s legs and insert it into the gastric tubing, then squeezing A’s stomach and checking on the bag. She had been understandably very much caught up in the anxieties of the health crisis her 16 year old son was facing on 9-10.12.19 and that her memory was not entirely clear. She described a conversation with M on probably 10.12.19, and which she found odd and intrusive. 10.18. She said she did not find M weird at first but that then M’s questions became a bit too personal. She explained that her son was in terrible pain and she did not want to deal with those sorts of questions and so she drew the curtain around his bed bay. She denied knowing M’s name, but that the conversation had taken place after she had offered to get M a drink and M had given her a large Burger King cup to fill. She found some of M’s comments inappropriate (asking about her son’s puberty) and others she disagreed with (M’s views on switching off life support if her child were on it). She was clear that there was no conflict or argument but she just did not like to speak to M as she did not have the inclination or energy to do so in her circumstances. Y explained that her son had almost died the night before and she simply was not up to dealing with pleasantries and she was not in the frame of mind to permit discussions of personal matters. She said she tried to be polite and patient but described having nothing in common save for a disabled child. 10.19. She said that she had noted M appeared to handle A roughly in picking her up and putting her down. She described the squeezing as ‘rough’
‘A mother in the opposite bed mentioned that A was very cute but small, and that she saw mum be quite rough with her, I asked if she saw anything but this mother only mentioned she'd seen mum squeeze A's stomach and nothing else’. 10.20. Like her mother X, Y was quite clear that no nurse had mentioned or done anything that made her start watching M or think they were suspicious about her, and that she ‘did not dream anyone was watching M until I spoke to [Dr K]’
‘So my mum noticed first. My son very sick so obviously not noticed at first. My mum mentioned. A few nurses mentioned stuff before so I started watching. Said let’s start videoing. Not as much footage as my mum got.’ (My own note is not in exactly these words). It is suggested that this is indicative of some campaign behind the scenes among the nurses, and/or that Y has concealed some level of knowledge about M. Given that Y had an earlier conversation with S.N.KS, which had involved Y referring to roughness and Y recalling the nurse asking something as to whether Y had seen M feeding A, it is not a surprising comment. And an important component of this answer, which fits entirely with the rest of Y’s evidence is that it was not her, but her mother X who had noticed M’s behaviour first on the afternoon of 11.12.19 and mentioned it. 10.22. She confirmed that she had encouraged her mother X to video what they were witnessing once X had drawn her attention to it. Prior to that Y explained that she had not been paying attention to M and had not noticed the repeated syringing, but she had been tending to her son’s needs. 10.23. Y confirmed that she had taken the video of squeezing on 11.12.19 and provided it to the H2 team, and that she had not seen PGM squeezing A but that PGM had been gentle and loving to A. 10.24. The only difference with X’s evidence is that Y believes that at one time she thought she saw M drawing up a fizzy drink like Cola and inserting that into the tubing. She remembers seeing M at one point pouring Cola into her cup, and indeed in the videos it is possible to see a Cola bottle on the table at the end of the bed. She could not remember exactly when and described herself as ‘almost positive’ she saw it drawn up out of the cup and into the syringe before it was inserted into the tubing. She described a dark fluid like Coke. The videos do not assist further on this point and a detailed analysis of the fluids was not undertaken that would identify such a substance. 10.25. OBSERVATIONS REGARDING X & Y: I note that they did not and do not know M, other than as a fellow parent on the same ward that December. They are in no way implicated in the history of the case, but are complete strangers to it and were uninvolved with any previous safeguarding concerns. They have not seen the medical records, nor read the statements of the nurses or other witnesses. At face value, this would mean that they have no reason or motive to lie, nor to interpret observations against M, nor have been influenced one way or the other. 10.26. They are familiar with flushing and venting, due to Y’s son’s disabilities, who is also tube fed and has been in and out of hospital his whole life, which gives them a degree of familiarity with and awareness of what they were seeing. 10.27. During cross-examination on behalf of M, it was suggested that X and Y were somehow caught up in some sense of excitement surrounding the nurses’ suspicions, and were somehow working under that excitement to achieve something against M. I did not hear anything to substantiate this suggestion from any witness. Wisely, neither in cross-examination nor in submissions, was it suggested that X and Y somehow stood to benefit from doing so in any way. In fact the clear impression given was that they were concerned, felt duty bound to raise their concerns, and that this whole process had been a worrying, difficult and upsetting experience. 10.28. In submissions on M’s behalf, it was asserted that X’s evidence was given in a way that was unsettling and odd, in that she volunteered she was not friendly with the nurses or under any instruction to video M; and that she lacked credibility given her extreme descriptions, and a failure to report immediately what she said was making her so scared as to shake with fear. 10.29. I do not find these submissions persuasive. I find it unsurprising that a witness should respond to questions relating to over-familiarity or friendships with nursing staff by clarifying the status of their evidence with an explanation of how she came to see, record and report her observations for herself ‘off her own bat’ with ‘nobody prompting’
‘Sometimes that was the case but because the bag was taken away and off, a good time to do flushes together, just to save time. Sometimes do quickly, other times wait.’
‘As I went to reattach the emptied bag. the PEG port was wet. Mum said 'Oh, the cap must have come off.’
‘However, the problem with A was that when her drainage bag was on it was full of liquid. It would be very difficult to manoeuvre that volume of liquid in order to let the air out of the bag’
‘I witnessed mum squeezing A’s abdomen hard and then looking at the free drainage bag’
‘A was on Mother’s lap, facing the Mother, holding her abdomen and squeezed tightly – not seen manoeuvre like that before - I have seen children being gently massaged but nothing like that. It was definitely an in/out motion. It stands out because it looked quite strong. And A was tiny. It looked over the top for a child of her size … on that occasion there were 2 presses … then Mother looked at the free drainage bag – almost at the same time she would turn and look …’
‘Watched mum squeeze A’s stomach very hard 3 times in a row as she was sat on her lap’
‘… Since Mum has been present with A, she is constantly fidgeting and moving A and moving the blanket to cover A. She prodded her in the abdominal region approximately 4-5 times pushing in approximately ¼ depth of her body.’
‘the hospital was on “red alert” about A’, as shown by the red sheet that PGM saw on A’s paper file; ‘they’ refused to accept this and that this therefore undermines ‘their’ credibility; and because the professionals were somehow thwarted by the conclusions of the previous proceedings that they were intent on gunning for M at some later point and used this opportunity to do so in some artificial way. The suggestion was made that M’s history and the details of the previous care proceedings were known to the H2 staff due to M being under supervision for visits that took place during those proceedings. M claimed that her experience as of a range of medical staff appeared to be aware of this history, both prior to the end of the previous proceedings, and during the November admission. This all, it was submitted, led to a particularly negative attitude to M and hence to an ‘evidence gathering’ exercise based on confirmation bias. Negativity, gossip, lack of empathy and objectivity were, it was submitted, what led the nursing staff to read too much into what were innocent behaviours. 11.6. To fuel this argument I was provided with a comprehensive schedule by M’s representatives of almost all the comments made by all the nurses who gave evidence that touch upon this topic, to which I have paid close attention, but which I did not find provided the substantiation for this submission. I was additionally provided with a shorter table on behalf of the LA. 11.7. Most of the nurses were not asked about whether they were aware of the previous proceedings and safeguarding concerns. Of those that were: - S.N.s AA, and KS and S.S.N.ZS confirmed that they had some awareness. S.N.AA said she had been told about them at handover, she was aware that they had concluded but had no specific knowledge of what happened. S.S.N.ZS recalled being a nurse involved in A’s care in February 2019 and so was aware that there were previous proceedings but could not remember what information was shared with her, nor did she know the outcome. She wrongly thought that A had been in foster care and then returned to her M. S.N.KS was aware, through her care of A in February 2019 that social services had been involved but she was unaware of previous proceedings until M had been excluded from the ward in mid-December. - S.N.ST had previously briefly cared for A in February 2019 but said she had no recollection, and that even if she had remembered it would not have affected her account in these proceedings. - S.N.FA recalled that Safeguarding Nurse Specialist BM had told her on 6.12.19 that there had been previous court proceedings regarding another child but went into no detail save that the case was closed and there were no further safeguarding concerns. She said that this was mentioned to her at the point when she contacted SNS BM on that date to escalate her concerns as to what she had been witnessing on the ward. She made two calls to SNS BM, around the middle of the day and again that evening. It is further suggested that because of the recording made by S.N.NH on 6.12.19 when receiving A onto Savannah ward from S.N.FA there is reference to the previous proceedings and to A having been in foster care, and that therefore this information must have been passed on to S.N.FA by SNS BM for it to have been shared with S.N.NH. Neither S.N.FA nor SNS BM recall this piece of information. It is suggested that this proves that there was far more information circulating among the nurses than has been admitted to. - SNS BM said she was unaware of this family and did not know about the previous proceedings until these concerns were raised with her on 6.12.19. There is no evidence to suggest otherwise, save for a single email in May 2019 where she is responding to a request for email addresses of professionals to whom the outcome of the previous case needed to be sent. While the email suggests some awareness (it refers to ‘the [NN] case’ using the relevant initials), there is no indication that this meant she had acquired any detailed knowledge of the previous proceedings or of this family. Later in her evidence she said she only found out about the safeguarding concerns at the meeting held on 10.12.19. However, I note that in her statement she writes, and also stated in her oral evidence, between the two calls with S.N.FA she contacted the LA and spoke to the duty social worker and indeed passed on advice from that social worker to her safeguarding colleagues. It strikes me as possible therefore that S.N.FA may have correctly remembered being given a brief outline from SNS BM as to there having been previous proceedings (and possibly the information as to foster care), which outline was likely to have been given to SNS BM by the LA and passed on by her to S.N.FA during the second call between them, albeit that S.N.FA thought this was during the first of their calls. Equally, SNS BM is also likely to be correct that it was not until the meeting at which the allocated social worker attended on 10.12.19 that she would have learnt of the detail of previous safeguarding concerns. 11.8. In M’s submissions some emphasis was placed on the role played by SNS BM. She was the only member of the senior safeguarding staff to give evidence, although there were several others involved. This was primarily due to her having been the safeguarding nurse who received the initial referral from S.N.FA and then put the Action Plan in place and prepared the documents I have referred to above. It was suggested, albeit indirectly, that she bore some degree of responsibility or had some degree of control or influence over the conduct or attitudes of the nurses then charged with observing A and recording their observations. I note that few of them came into direct contact with her, and that she was more heavily involved in the administrative side of her safeguarding role: preparing the documents I have referred to, attending the meetings with the LA, and liaising with senior colleagues as to the appropriate plan. She clarified that the management of handover discussions was not her remit and she would not know what was done on a particular ward. She clarified the nature of handovers that could be conducted in various ways. She emphasised that ‘all nurses are expected to adhere to the Nursing And Midwifery Council guidance where a number of standards are set out to maintain registration. These would cover confidentiality and sharing of appropriate information and which I would expect our nursing staff to adhere to. … Nurses are expected to share proportionate information to ensure safeguarding and regarding the direct care of a child.’
‘On 6th, constantly occluding and noticed pattern. Not occluded throughout the night. Throughout the day constantly occluding. Odd behaviours of patterns. That [was] when contacted [BM] on 6th. (Q: So were conversations about pattern?) Yes, about pattern rather than saying suspicion. I spoke with night nurse looking after A and they would give feedback in relation to how alarm go off. We would notice constantly occlude since M arrive and not overnight. (Q: Who is we?) All the nurses in the bay.’
‘in our profession it is very hard to understand why somebody could possibly want to cause harm or do something that might cause harm’
‘Remember continuous: go to bedside, walk away, alarm go, walk back to bedside. Only alarmed when I left bedside…Me and mum discussed A having dystonia- was belly cramping, causing milk to go back down tube, but nothing else could think of…No experience of dystonia causing alarms but because M talking about it, sounded plausible.’
‘Staff nurse [FA] reported that parent in opposite bedspace stated that she was unsure if mum was doing anything to the child as she saw mum with syringes pumping it into A. Earlier there was a pool of water under A’s bed which unsure where came from’
‘On the same day [2.12.19], a concerned parent that was sitting opposite A's bed space, confided in me with confidentiality that [M] was doing something under the blanket and in her opinion [M] was constantly watching if anyone was looking at her. The concerned parent stated she has no knowledge of the situation but felt the need to report as [M] was deemed to be behaving in suspicious manner. The concerned mother described [M] to be holding a syringe and water leaking on the floor by the patient bed space, which I have witnessed and found it strange where the water was leaking from.’ 11.34. She has been criticised in relation to this account for subsequently varying her description of the water: pool, 40-50ml, massive leak, puddle. I note that the word ‘pool’ is not from her own note but her colleague’s and may have been what her colleague had noticed under the bed herself. She is also criticised in that, when taken to this account where it says ‘pumping’ and to another account of the incident that is recorded on 6.12.19 by a Dr D where it says ‘injecting’, she denied or could not recall using those words. She is criticised for the expansion in her statement of the inclusion of the blanket and ‘constantly watching’ and for saying in her oral evidence that she thought the water must have come from the syringe. 11.35. She told the court: ‘Other parent said water was coming from syringe. Other mother described syringe as underneath something … remember her saying suspicious, hiding syringe under something – blanket or clothing … she was quite scared. Did not want to get into trouble … she said mother kept looking around at nurses. Whenever nurses were busy, that was when she would use syringe. She just mentioned about suspicious behaviour and fact M had a syringe underneath a blanket or some piece of clothing and that was where the water came from. Impression was pushing something in … did not specify exactly …’ 11.36. While I must and do remind myself of the hearsay guidance, I note that while there may have been some more excitable wording used as to the water, and she cannot recall using the words pumping/injecting to her colleagues at the time, there can be no doubt that she did pass on to her colleagues the bare bones of this report from another parent firstly on 2.12.19 and again on 6.12.19. And it has not been suggested that the e-note of S.N.AdAd who recorded this on 2.12.19 is in any way fabricated or false. Thus this initial account is important. It chimes significantly with what was seen and filmed by witnesses X and Y. That in itself provides corroborative support for S.N.FA’s account of the report. But it also undermines the suggestion made on behalf of M that she is a ‘manifestly unreliable’ witness in this respect. 11.37. In her e-note of 6.12.19 she wrote: ‘Contacted safeguarding and gastro team due to since Mum being present the pump for the jej feeds have occluded at an numerous amount due no factual or medical reasoning. I have found Mum clamp the line and kink the line during shift, I have informed relevant professionals such as NIC, Deputy sister, Senior nurses, Safeguarding B and Matron R. Since then we have followed protocol of moving A closer to the nursing station and only nurses are allowed to respond to the occulusion only and not Mother as Mother has been reported to respond to the occulusion by unwinding the tubes and allowing milk to leak through. We have placed the tubes away from Mum and recorded the time each time it occuluses. Reported back to Safeguarding that since the move the pump alarms have decreased. PEG is on free drainage, mum has been seen to unattach the free draiange and reattach it. I have asked her to leave it alone, she reported it has started to leak. No previous leak mention before. … Mum has been seen to be fiddling with the JeJ tubes to cause occuslion she has clamped the extension while the feeds were running through. I have asked her strictly to place A in bed so we can monitor the occultion and find the causes. Mum said she will comply however she said she wants to cuddle A and she shouldnt stay in bed all day. I informed her that isn't the case and it just to find the reasoning behind the pump occulusing. Contacted safeguarding’.’ (typos sic). 11.38. SNS BM recorded this in her own e-note: ‘Contacted by SN FA who reported that she had been informed that on 02/12/19, when A was in the mountain ward another parent in the bed opposite reported A's mother getting out a syringe out from under her shirt and injecting something to the PEG/JEJ. Reported that this was escualted to the nurse in change, … SN FA reported that the feed pump has been occluding numerous time, she raised concern that when A was in her cot overnight there had been few/no occlusions. However reported that when mother has been present on the ward A has been in her arms with a blanket covering, during which time the pump has regularly occluded and nursing staff had concern that the tube may be being kinked. In addition reported that when the pump alarms mother has been noted to disconnect the time and allow the feed to run into a tissue. I have advised SN FA to have a discussion with A's mother and inform her that she must not disconnect the tube under any circumstances or make alterations to the feed pump. In addition nursing staff to assess the pump and line every time it occludes. Discussion to be undertaken with mother to advise that A is nursed in her cot rather than in mothers arms under a blanket…Action plan: Close observation at all times - Member of nursing staff to remain in the bay with visual contact on A at all times - If the pump occludes please inspect the tube and while line assessing if it has been kinked or clamped…’, and following a further conversation with S.N.FA a letter was prepared and sent to the LA which I have set out at paragraph 8.93 above. That letter refers to the report from the other parent, the pattern of repeated occlusions when M is on the ward which are absent when she is not, allowing the milk to leak into a tissue, and the nurse witnessing M clamping, kinking and seeing M leaning on the line with her elbow. 11.39. S.N.FA’s filed statement referred to the fiddling, unattaching the tube, leaking milk into a tissue, and to finding kinking on the tube which was reported to a doctor, but like her police statement dated May 2020, it failed to mention clamping or leaning on the tubing. 11.40. In terms of the clamping, she said she had seen it on 6.12.19, she said that when checking the tubes because the alarm had sounded she found the tube clamp was clipped shut under the blanket. She was a little vague but thought she saw this more than 4 times. She did not see M actually performing the act of clamping it. She described finding it clamped shut when the alarm went off having only about a minute earlier checked the tubes and restarted the pump. She did not think it could be an accident given the movements required. It was not clear from her evidence whether the dent/kink in the tubing was as a result of the clamping or a separate observation, however she demonstrated on the tubing how folding it back on itself produced the type of kinks she found. Her regret at failing to include the details of the clamping issue in her police and witness statements was clearly heartfelt and frustrating for her – she said she wished she could go back in time to have made sure it was included. 11.41. In her oral evidence she initially thought she had not seen M leaning on the tubing, but later in her evidence when she had to return for a second day, she recalled it, explaining that being taken to the documents had jogged her memory. Her e-note does not refer to the elbow leaning albeit it was clearly mentioned on 6.12.19 so that it was included in the letter. Her recollection in her oral evidence was by her own admission slightly vague, but she recalled M was in the chair and leaning on the bed and when she checked the lines following an alarm she found M’s elbow on it and said she gently removed it and restarted the pump. 11.42. Her description of the milk running out of the tubing into a tissue turned out to be less concerning than it at first sounded. It was a very small amount she thought, maybe 5ml, and she demonstrated that M was holding the tube upwards in front of her and catching the small amount of milk in a tissue. M stopped doing this when requested. During M’s evidence she explained that she had previously been shown to do this by another nurse on some other occasion to release any pressure or to check the milk was flowing. S.N.FA had clearly found this to be a worrying action because there was concern to know how much feed and fluid A was receiving and she felt it was inappropriate. 11.43. In the circumstances of her description I do not consider it is appropriate to think of the elbow or the milk into the tissue as suspicious, as the description of the former could simply have been an innocent failure to see she was leaning on the tubing, particularly as M is a considerably large person. And the milk into the tissue was a very small amount and done very openly. 11.44. She could recall little of the OT’s visit to the ward which is referred to in the Feeding Pump Alarm Record. On that record the first entry made at 13.32 on 6.12.19 is by S.N.FA, with A noted as lying down. There follow four more entries between 13.35 and 14.15 indicating pump alarms with A lying down which are entered by nurse colleagues. At 15.00 a colleague notes that A was sitting up with the OT – and it is not suggested that this is an alarm. I note from the OT’s own e-note that it refers to an appointment time of 14.30, and M recollected this appointment took about 45 minutes, suggesting that the OT may have been there from that time until about 15.15. No occlusions are noted during this period. Thereafter, there are ten entries running from 15.22 until 17.10 showing that A was sitting in her blue chair and the pump had to be checked and restarted, five of which entries bear S.N.FA’s initials [FM]. 11.45. At one point in her oral evidence S.N.FA said, in reference to the pattern of alarms, that there were more when M was on the ward and suggested that there were a few or fewer overnight when PGM was on site. I have been unable to find substantiating records of this vague comment, and in fact there is evidence of the opposite as the other Mountain ward nurses who were on duty on the relevant nights (namely S.N.s H, AR and MF – referred to above) did not record any alarms at all. I note that SNS BM’s e-note records ‘few/no’ overnight alarms in the account given to her. Given PGM’s evidence that she was never woken by an alarm I consider this was an example of S.N.FA’s imprecise approach and that there is no evidence at this time of overnight alarms. 11.46. I note that S.N.NH, a more experienced nurse and more stolid witness than S.N.FA, expressed a degree of frustration in her e-note at the vague nature of the handover information she was given. This would appear to be of a piece with her colleague’s slightly more slapdash approach. And it was at the point in S.N.FA’s cross-examination when she was being questioned about the nature of that handover and why the note did not contain a reference to seeing the tubes clamped that she was briefly in tears. It was clearly a frustrating and upsetting moment to have these problems pointed out to her. She collected herself, pointed out this was not her note, and was emphatic about having seen the clamping and that she thought she had mentioned it (it is in her own e-note). 11.47. I take into account when considering S.N.FA’s evidence that her memory and accounts were not always precise and had elements of an exasperated response to the events she recounted. She can clearly be slightly impulsive and slapdash from time to time. However, I found her to be detailed and cogent in relating convincing accounts of direct experiences of the initial report to her by the other parent, and of finding the tubes clamped shut on multiple occasions and feeling kinks in the tubing. 11.48. SAVANNAH WARD NURSES – 6-11.12.19: 11.49. S.N.NH received A onto Savannah ward on the evening of 6.12.19 and made the next three entries in the Feed Pump Alarm Record between 18.35 and 18.45. She recorded A was in her blue OT chair and M at her bedside (next to her). Her evidence to the court was that when she checked she could find no cause. The next two entries relate to a period when the feed was paused to resupply it, and then M went home and A was in PGM’s arms while the feed was restarted. 11.50. On 11.12.19 she recorded the following in her e-note at 14.19: ‘Mum currently has A on top of her with a pink fluffy blanket covering them both. Mums hands were both underneath the blanket and could see Mum with left hand moving it a lot, whilst her right hand appeared still, both remained underneath the blanket. Mum kept looking over at the HDU desk and looking away, looking back and looking away again. I interpreted Mum to appear flustered in my opinion.’
‘I would press start and feed would run completely normal. Few minutes later it would beep again … only reason would be if clamp on or if line kinked. [Q: why is swift resumption of pump not consistent with it being the milk?] because if there is a clump or a problem with the line it would say occlusion again and prompt you to investigate further …’ – that is to say if there were a genuine blockage such as sediment or other impediment, simply switching it back on would not resolve it immediately, as was repeatedly the case here, as the problem would still exist. She also pointed out that it would take more than massaging a line to disperse sediment to produce a kink, and that it was possible to clamp and unclamp using one hand (indeed that is what M acknowledged that she can be seen doing on the flushing videos, and she also showed me how she can open a clamp with a slight push of her thumb). She expressed the opinion that she thought M was causing the pump to occlude by clamping the small white clamp on the tubing, and was then unclamping it. 11.53. S.N.ST was another important witness of contested events. Occasionally she showed the emotional strain and upset at the experience of giving evidence on such difficult issues, but her account remained contained, consistent and coherent. Her responses were straightforward and factual. There was no suggestion that she had remembered or been affected by any memory of her earlier role as one of the nurses who cared for A in February 2019. 11.54. She was absolutely clear in describing what she had seen despite thorough cross-examination. I have set out at paragraphs 8.95-8.98 a summary of her observations. She was particularly detailed about her direct observations of interference with the tubing. She demonstrated by using her thumb and forefinger to bend and pinch together a small section of the soft purple tubing, to show me what she had seen M do down beside her leg that led directly to an occlusion alarm: ‘Observed M kink the tube … I was at nurses station, M & A on bed, on M tummy … I saw A’s feed pump hanging down and down the side of the bed. M looked over at the nurses station. M grabbed the tube and bent it round, kinked it and the pump then alarmed … no doubt that caused the alarm … caused block in the tube …’
‘cold pale liquid (paler)’, with the previous gastric loss described as a pale green colour. And in a note that was provided by the hospital after her evidence was completed it reads: ‘This liquid was much cooler to the touch than the previous drainage, but M had a cup of iced drink in the bed with her, which it may have come into contact with’
‘She [S.N.AA] showed me a full bag of clear aspirate … colourless … that would be an issue clinically. Most aspirates have a tinge of yellow green. To be completely clear is not what you expect to see …Would not normally expect to see any bubbles in an aspirate. I have never seen bubbles in a drainage bag before … [Q: M has seen bubbles] I have not seen bubbles … it is usually a very green bilious aspirate which is small, 10 mls, frothy. But that is quite different. It was like a fizzy drink. Small round bubbles … I was in the office at the time. [S.N.AA] came to find me. She brought it into me and we looked at it together… [Q: subjective?] yes but it was clear. I understand there are degrees. On this occasion there was no colour. Bubbles in the centre of the liquid, in the bulk of the liquid. Not congregating in a specific area … within the liquid rather than on the surface … can get frothy bit if air in stomach … [seen like video 23] … expect to see this in clinical practice … what I saw – the liquid was clear. Liquid in [video 23] is milky. Also it was more formed round bubbles. Unusual in that it was clear, small round bubbles, volume and colourless.’ 11.66. The clear and fizzy qualities of the aspirate were recorded in S.N.AA’s e-note and the entry on the fluids chart. She observed them to be like this on the evening of 9.12.19. Similar observations made in her e-note on the afternoon of 10.12.19 do not match with the entries on the fluid chart and I ignore that reference in her e-note. I am persuaded by the clear and detailed evidence of Ward Sister AS that S.N.AA did see and show her an aspirate with these unusual qualities on 9.12.19. 11.67. S.N.MG was one of several nurses whose evidence I heard relating to 11.12.19. She gave a clear and fair account. She saw M fiddling under the blanket, brought a cup out, more fiddling under blanket. She wrote her note very shortly after incident and after told S.N.ELB who told her to write it down (c15.30). Although she described the actions as 'purposeful' in her statement, she accepted that might be speculation, otherwise she did not try to go further than what she had witnessed. It was an understandable assumption of purpose in the circumstances of seeing movements, then a cup removed, then movements resumed. She gave consistent and emphatic answers that the hand movements she saw were in front of A under the blanket and the blanket covered A's PEGJ button, and that she had definitely seen M lift a cup out from under the blanket. 11.68. I have already touched on the evidence of S.S.N.ZS. She was clearly the most obviously opinionated member of the nursing staff from whom I heard. I do not consider that her frank acknowledgement of having a negative view of M necessarily means that her evidence is unreliable. I note that many of her observations align with similar observations of her colleagues, albeit with their own particular individual timings, details and nuances. She set out her observations in a contemporaneous e-note, but also gave detailed and convincing accounts of what she had witnessed during her oral evidence. One such was of behaviour that had also been seen at the time by Ward Sister AS on 9.12.19, of witnessing M unscrewing and detaching the drainage bag: ‘At nurses desk … there is a guard but I could see over it and had a clear view … just after 2pm drainage bag emptied … within 10 mins (saw her unscrew and disconnect) … drainage bag lying on the bed. Next to child on her right … when [S.N.ELB] was away from the bed I would make sure I was within the bay and even closer view … [demonstrated how to unscrew on the equipment] M was able to do it with one hand … Then reconnected … just a few moments … [Q: any reason why a parent would do this?] no … extraordinary’
‘I could not make out the shape’
“I left that consultation and walked straight to our safeguarding team and said I had never seen a child like that in 21st century Britain. I have worked in Nigeria. She looked skinny and like what I had sometimes seen in Nigeria”
‘with frequent episodes at least 3 x 1 day and for most nights lasting hours.’
‘I don't think this needs to be complicated. The family have been through Court and I think we should consider the rulings thereof. I do not see that undue presumptions should be made about this child in this instance. The family have a right to seek a second opinion. [H3] has a responsibility to procure any previous correspondence prior to consulting on a complex child (as I'm sure they do with other patients with complex medical histories). I am therefore happy for you to contact my secretary if you would like copies of her clinic letter. But that is as far as I am willing to engage in this line of action/correspondence. Of course, if any additional safeguarding concerns arise, please reinstigate safeguarding proceedings and contact our Childrens Safeguarding Team for any specifics.’
‘the chance of the transition happening is generally months for a child with A’s disability. In the majority of cases it would not happen at all. Chances of happening is low and when it does, transition is slow’. 12.27. Dr V was the first witness heard during this hearing, and as a result of the later development of certain aspects of the evidence, he was not asked about his decision in late July 2019 that led to the reinstatement of the drainage bag after it had been successfully removed during her H1 admission. However, he did confirm that in his view clamping the gastric output would be unrelated to the jejunal input and would therefore have nothing to do with weight gain. 12.28. While it is arguable that he made the wrong call at that point in July and A should not have had her drainage bag reattached, I can make no finding on that decision of his. This episode is referred to in the chronology at paragraphs 8.31-8.34 above, and in my consideration of the family members’ evidence earlier in this judgment. Given: the inconsistencies in M’s evidence and with the GP email and PGM’s text; the clear and widely preferable accounts of F and PGM generally and whom here neither shared M’s assertions as to A’s degree of illness or the levels of their involvement; the lack of observations of signs of aggravated gut dysmotility by other professionals who saw A that week – I conclude that A showed some distension as seen in the video clip but the accounts given now by M of extensive vomiting are not substantiated, and A’s symptoms in the days following her discharge were exaggerated by M. She agreed in her oral evidence that she had wanted the drainage bag to be put back on, and it is clear that she pursued that via the GP, A&E and the Ellenor nurse. 12.29. Dietitian DM is a community children’s dietitian, qualified in 2004 and specialises in enterally fed children. She had visited A’s home 24 times (with each visit being 1-1.5 hours), saw A with M at least 10 times in clinic, spoke to M 57 times, and attended more than 10 Child Protection or Child In Need meetings. She provided a witness statement in August 2020. Her contemporaneous notes are extremely detailed, containing references to visits, clinics, telephone conversations, emails and observations. She was an impressive witness. She was fair, familiar with A’s history, matter of fact and clearly highly experienced in her field. She gave clear, cogent and consistent answers. 12.30. I have set out some key aspects of her involvement in the history above. She had extensive experience of A. Certain of her detailed observations will be referred to in further analysis of particular issues later in this judgment and below. However, her evidence contained some particularly noteworthy elements. 12.31. She is still involved in A’s care and described her as doing amazingly well now, with all her nutrition now orally, but her gastric tube is used for fluids as she finds swallowing liquid hard but is building up her skills with SpeH2 And Language Therapy input. In describing the difference with A’s presentation in 2019 she said: ‘The most noticeable thing was the level of interaction. When you went over to her, she was smiling and interacting. She wanted to know what was going on. There was a huge difference in her personality. She was smiling, laughing. She was bigger, had a nicer colour to her. Her personality and level of interaction was different’
‘the calories that were going in, she should have been gaining, so no explanation.’
‘Advised will review weight in another month. Prior to problems with feed tolerance, required 800kcals to gain weight so may need further increase if still not gaining.’ - On 21.11.18, in response to an email query from Dr Q regarding weight gain, DM replies: ‘A was 7.93kg on Monday, so she has lost the weight she previously gained. I have spoken with Mum about increasing her feed.’ - At a home consultation on 18.12.18 DM records: ‘Is the current feeding regime meeting requirements?: Current feed should be meeting requirements but still no weight gain. …Advised to give a 2 week trial on Neocate. To then review if any improvement has been seen and to look at increasing kcals.’
‘Mum wanted me to raise her weight loss. This is something I am addressing, we are increasing the concentration of her feed to aim to promote weight gain. do not know why she is losing weight, she is currently on 140% of requirements, at least and will be re-weighed next week.’ - The February 2019 hospital admission looking at all A’s presenting issues could find no reason for her failure to gain weight. - In DM’s note of a home visit on 28.3.19 she wrote: ‘Discussed poor weight gain. Mum felt A was doing better and has had a hospital admission. Agreed to review in another 4 weeks and can amend feed then if no weight gain ? to reduce rate of Dioralyte and increase rate of feed.’’ - And on 18.4.19 she wrote: ‘Has gained 200g in the last month. ? starting to track below 0.4th. Appeared slim, some loose skin on arms’, - Andon 31.5.19 she wrote: ‘Weight tracking below 0.4th centile but height static and falling across the centiles’. - The consultation on 28.6.19 with Dr V was a referral due directly to A’s ‘faltering growth’ and it was noted that: ‘Referred in view of faltering growth … Feeding regimen of Neocate Junior which is concentrated to 1.26 Kcals per ml for the last 7 months- 750ml per day via pump at 37ml an hour for 20 to 22 hours (that would amount to 120 Kcal/Kg per day) Plan: 1. Discuss with parents that her calorific intake looks sufficient generally for growth. However, since there is ongoing faltering growth, we would aim to Increase the calorie content of her diet further (I asked the dietitian to discuss further concentration of feeds). 2. Reassured parents that the symptoms are not suggestive of any calorific loss (no vomiting or diarrhoea) …7. May need an inpatient admission in view of the faltering growth…I have discussed with her mum that given that she continues to falter growth, we have increased the calorific intake and that we can do this by increasing the rate of feeding or by increasing the concentration and hence l have asked the dietitian to have a chat with mum’. - On 1.7.19 The H2 dietitian emails DM: ‘A was seen by Dr V today in clinic. He would like her calories to be increased and asked me to talk to mum. He wants to see her again in 1 month with some weight gain… chatted to mum and she explained how you have been working hard to increase rate and calories.’. - DM replied that she is worried about her gastric losses and that she is ‘already on 145% of her requirements and that's without allowing for her low mobility’. - I have already referred above to the 9.8.19 consultation that Dr V had with M and A where he recommended an in-patient admission to address these issues, and increased her feed to 24 hours and 177-230% of requirements at 1150 kcals per day. - Dr U’s vivid comment that she was well aware that they had ‘maxed out’ their options in terms of A’s feeding regime. 12.42. So while it is true that M was raising the issue of A’s weight, alongside her many other problems, it is inconceivable that she was unaware of the professionals’ concerns and plans in this respect, and to attempt to characterise it otherwise is wrong and misleading. 12.43. Dr F. I now turn to Dr F. He is a leading consultant in paediatric neuro-disability, head of paediatric neurosciences and sleep at H2, an advisor to NHS England and contributing consultant for NICE guidelines within his speciality. His witness statement is dated 13.10.20. He had far fewer interactions with A and M, seeing her on three occasions between August 2018 and September 2019. He conducted a video appointment in August 2020. I have summarised them in the history set out above. 12.44. There were two particularly striking features of Dr F’s evidence. Firstly, he is clearly an extremely sincere, conscientious, knowledgeable, earnest, thorough professional, with an unfortunate tendency towards verbosity. Secondly, with regard to M’s numerous assertions that she had made about Dr F’s involvement and her apparent reliance on his position on various issues, he manifestly disagreed with her. This was all the more telling given his championing of and respect for carers of disabled children, which shone out from his evidence. 12.45. He also emphasised the reliance of paediatricians on the history given by carers: ‘… with any consultation, it is dependent on the history given by the parent …’, and ‘You [as a doctor] are so reliant on the history … [in the majority of clinics] 95% is history, 4% is observation, 1% is examination … You believe what you are told ... [Q: is that a fundamental tenet of being a paediatrician?] A: Yes. The parents are the world expert on that child. [Q: As long as they are giving an accurate history?] A: Yes’. 12.46. Examples he gave included that both the prescription for drooling and for Buscopan were based entirely on the history given by M. 12.47. M and PGM attended his lectures on the topic of dystonia. In his August 2018 consultation he concluded there was a ‘developing degree of dystonia’, and suggested in his oral evidence that he observed some dystonic symptoms during that examination, but was otherwise reliant on the history given to him. There was a similar picture at a January 2019 consultation, where he observed A’s right arm tightness and from the history diagnosed a ‘mixed motor abnormality with fluctuating tone – dystonia’
‘I cannot see any time I would recommend [its] use’
‘As a first principle, it is very important to trust implicitly what is said by the parents. But then when there are repeated episodes of features that do not match or what I see is not what I hear or what I am being told is not credible, then you have to think about the problem being what I am told rather than a medical problem with the child’. 13.29. I also take into consideration the following: - He was a thoughtful and respectful witness who attempted to be as helpful as possible in terms of exploring points, and was open to the reconsideration of certain issues in terms of being asked to look afresh at data sources or addressing errors or corrections; - His opinion was not challenged on the basis of contrary published research or alternative expert opinion; - Where there was overlap, his opinions accorded with that of Dr Knight-Jones, and with the observations of the relevant clinicians; - His discipline did permit him, particularly when interpreting biochemical data concerning A, to provide certain definitive opinions. - Notwithstanding A’s complex presentation, I found his opinions in relation to all the matters that he addressed were straightforward to grasp from his explanations, save for one particularly complex area which is that of certain aspects relating to A’s gastric losses. - He made several errors in his initial report as follows: a) – There were 3 date errors that required correction; none appeared to be of significance to his overall analysis save that it suggested some inaccurate attention to or transmission of the data to his report, b) – A reference to zero gastric loss on a particular date, to reflect the wide range of amounts lost, was incorrect; the least amount measured at H2 was 2ml on 23.12.19 and was corrected in his second addendum in the attached chart showing gastric losses. c) – He wrongly thought that M had been excluded from the hospital on 18.12.19 and not from 12.12.19, and made an assertion as to her responsibility for dilution of the gastric losses from the later date and so did not properly consider the amount of losses from 12.12.19 in his initial analysis. 13.30. PUMP, TUBES & OCCLUSIONS – Dr Campbell provided explanations of the PEG-J, pump, connectors etc. He confirmed he was familiar with the equipment, and described the tubing as tough but soft so that it could become occluded in an active child and if it was folded a kink would show. In his report he wrote: ‘Simple kinking of the tubing running from the feed pump will cause recurrent alarming of the pump due to occlusion pressures being exceeded. The tubing may show signs of kinking (page 1121 of H2 nursing records, more than 9 episodes within minutes are documented). Though the tubing is resistant to fracture, it can easily be occluded if the tube is kinked. Recurrent kinking, of the level observed in the nursing notes above, is not common in a child simply being active. Often a child lying on the tubing will not occlude the pump, the pump simply raises the infusion pressure (within the preset limits) to compensate.’ 13.31. Dr Campbell explained that fluid could be introduced into the drainage bag either by injecting it through gastrostomy into the stomach or directly into the bag. He stated that it was easy to unclamp the bag, put fluid in by either means and reconnect, especially for someone who has been trained to use these devices. 13.32. He was clear that dystonia would require severe visible spasms in the child to be responsible for blocking the jej tube (which was not the case here), and he did not accept that dystonia/spasms could occur that would do so without any outward sign of spasms or pain. 13.33. In relation to that last suggestion he said it was ‘not a main stream view’ that bowel dystonia would be a reason for a pump to block, and added ‘Dystonia of the whole body is and could be. But we are talking the type of dystonia which is so severe and so distressing, that a child’s hip could be dislocated. We are not observing that level of dystonia on any occasion [in A]’
‘A long history of apparent feed intolerance due to gastroparesis and or foregut dysmotility appeared to be fabricated as well, as all the evidence of gastric hypersecretion disappeared and A tolerated gastric feeds with the exclusion of the mother from A’s bedside’
‘The drainage would vary considerably on a day to day basis, this could go from being at 1000 ml or more for a period of say three days, and then without reason decrease to a 100 ml or less. Following prescribing Domperidone the average was approximately 600 ml, but this was an average and it could still change quite rapidly.’ 13.54. Dr Campbell’s clear evidence was that the amounts reported prior to the November admission were pathologically high, at a level where you would expect to see significant underlying disease. He is criticised on this point on behalf of M in that no other clinician treating her described A’s gastric losses in these terms through 2019. However, it is quite clear that they were all deeply concerned by it and were trying to address it in terms of immediate fluid replacement therapy, and two admissions in February and June 2019 where attempts were made to clamp the gastric tube and to remove the drainage bag. It is also clear that A was not showing the signs of significant underlying disease that might be associated with such high losses, such as various types of anatomical problems, obstructions or gastropathies, as set out in his August report. This therefore posed a perplexing picture to the doctors, who were trying to work their way through the thick of it. Dr Campbell has had the advantage of providing the overview with the benefit of the knowledge gained from having an oversight into a wide range of information and not being caught up in events with an incomplete picture, and even bearing in mind the reflex responses that I explain below, this led him to firmly conclude that the pattern of losses reported was not one seen in nature and could not be explained by any credible medical issue. 13.55. He explained that gut dysmotility which prompts excess gastric secretions is of an intermittent but frequent nature, so that the amounts drained in 24 hour periods would be largely similar and would not have shown the massive differences being reported by M. Importantly, he also explained that gastric secretions can also be increased by respiratory or viral infections, or by diarrhoea. 13.56. In terms of the timescale for losses to move from the stomach to the drainage bag he accepted that the speed might depend on the position of the child and the possible movement of some fluid into the small intestine. Initially he gave a range of ‘a few seconds or minutes up to about an hour or two’
‘Initially, PEG drainage volumes were approximately 750mls over a 24 hour period. This was reported as typical for A. The gastroenterology team, led by Dr V, initially suggested replacing gastric losses ml per ml with Dioralyte via the JEJ. This was reduced to replacing losses above 30mis/kg/day, which significantly reduced gastric losses to approximately 150mls over 24 hours. However, following a further review Dr V suggested going back to ml for ml replacement of gastric losses. On the day of discharge, the gastric losses had increased to approximately 1000ml…We started clamping the PEG for 2 hours for every 5 hours of free drainage. A tolerated this well.’ 13.62. I note at this point that it is not possible to arrive at any firm findings in relation to the February 2019 admission in terms of the question of the large gastric losses that were drained at the beginning and end of that admission and whether or not they are indicative of an interference by M or simply due to A’s conditions. I simply do not have sufficient evidence to do so. For example, I have not heard from witnesses that could assist as to the detail and types and timings of arrangements and treatments that took place. I do consider, however, in the light of Dr Campbell’s analysis and explanation of the reflex responses, that it is right and possible to glean a useful element of information from the clamping exercise and reduction in Dioralyte replacement therapy undertaken during that admission which led to a significant decrease in gastric losses. 13.63. Taking this forward logically, this explains the gastric losses seen even when M was not on the ward in November and December 2019. A was a child who clearly was producing gastric losses whether due to the vicious cycle of the reflex responses to drainage and replacement fluids alone or in combination with an element of foregut dysmotility. 13.64. Additionally, if that replacement therapy was further increased to reflect artificially increased amounts drained due to insertion of fluid into the system by M, then there would also have been a consequent further increased reflex response and thus even more gastric fluid would have been produced 13.65. This would therefore explain those figures set out in the fluid balance charts, where gastric losses were drained either during or at the end of the night or in the morning when only PGM was present and M had not been present on ward for some or many hours. Principal examples are: 2.12.19 – 24.00-171ml 3.12.19 – 09.00-100ml 4.12.19 – 06.00-84ml 5.12.19 – 23.00-87ml 6.12.19 – 10.00-94ml 7.12.19 – 20.00-103ml Althoughit is unclear when M left the ward it is likely she was not present by then as the only date she stayed late into the evening was 3.12.19. 8.12.19 – 09.00-80ml 9.12.19 – 20.00-82ml 10.12.19 – 06.00-72ml and 18.00-81ml. Even so, these figures are significantly less than the amounts drained during the periods when M was on the ward. 13.66. It is also the case that these reflex responses, in combination with A’s gut dysmotility, would have been in play prior to her admission and while at home. This may explain the larger losses seen by the family members and at earlier hospital admissions. It does not appear to explain the irregularity of the larger losses as reported by M. It is not possible for me to firmly infer, from the findings in the rest of this judgment, that M was diluting or adding to those losses or whether she was reporting them in exaggerated terms. I note that findings are not sought in relation to gastric losses measured prior to the H2 admission. 13.67. GASTRIC LOSSES – DILUTION – There were a number of factors which led Dr Campbell to confidently conclude that M must have been diluting the gastric losses by some means. 13.68. He explained that the following factors were important in looking at gastric losses: appearance; volume; timing; chemistry. 13.69. In terms of appearance, he explained that naturally produced gastric losses would be cloudy and not clear but could be colourless. There would be some colour, although that could range from pale yellowish through to deep dark green. The deeper the colour the more bile had entered the stomach from the jejunum. He also confirmed that he would not expect a gastric aspirate to appear fizzy, and A was not receiving any effervescent medication. Gastric aspirate would not be cold. Normal body temperature is 37-38C, and he added ‘there is nothing cold in hospital’. 13.70. In terms of volume and timing, he expanded on his general observations when asked to consider particular drainage losses noted at H2. When considering particular examples, he explained that they would have been physiologically impossible, and producing so much fluid loss per kilogram of body weight A would have presented as a very unwell child due to the rapid and drastic loss of fluid from the body. One such example was the aggregated losses of about 800ml over a 4 hour period on 11.12.19, which would represent more than 100ml per kg. 13.71. Another such example was on 7.12.19, where aspirates were being checked each hour, and produced three small volumes at 3am/40ml, 7am/35ml and 11am/ml, and zero aspirates at 12 noon and 1pm. M arrived soon after noon. S.N.ST then noted that at 2pm she measured a gastric loss of 310ml, then recorded that at 2.10pm she aspirated the PEG-J gastric port (that is to say, she used the suction from a syringe to withdraw any stomach contents) and obtained only 2mls of fluid – the significance of this being that in doing so the nurse evacuated the contents of A’s stomach. About ten minutes later at 2.20pm, after she had returned from drawing up medications in the drug room, the bag contained a fresh gastric loss of 365ml The loss of 365ml is set out at 3pm in the fluids chart where there are pre-printed hours in the ‘time’ column, but is recorded as being taken at 2.20pm in S.N.ST’s hand-writing next to the entry and in the e-note which was logged on the electronic filing system at 14.44. I accept that S.N.ST’s timing of 2.20pm is accurately recorded. . This represented an aggregated total between about 1pm and 2.20pm of 675ml, and Dr Campbell stated that it was not possible for A to produce a loss of 365ml in about 20 minutes, nor a loss of 675ml over 1.5-2 hours. He explained that it represented so much water donated from her bloodstream in such a short period of time that it would become a biochemical issue and would lead to shock and unconsciousness and a cardiac arrest situation. He considered that the most likely explanation was someone adding fluid to the bag in some way so that it was being measured as gastric drainage. 13.72. In terms of chemistry, there were two sets of samples tested that provided Dr Campbell with powerful arguments to support his analysis: firstly, urinary sodium levels, and secondly, gastric fluid biochemistry. 13.73. Urinary Sodium – In his report he wrote: ‘I note the urinary sodium is 133 on 17"(sic) [4th] December 2019. This shows that the body’s sodium balance is high. The urine output is documented to always be high (7th December 2019 ) i.e. 6mls per kg per hour. The blood urea remained low. Poor nutrition can lead the blood urea to be low, but taken together with high urine output and high urinary sodium levels, suggests excess fluid administration. If the gastric fluid replacement volumes are in fact not from the stomach, but have fluid added to the drainage bag, then this is the pattern of biochemistry that I would expect. If the gastric fluid volumes, replaced as Dioralyte in to the jejunal tube or IV saline, were truly drained from the stomach, those losses would be high in sodium [but were not] and not lead to a urinary sodium of 133 (more likely to be in the region of 40-60mmols/1). If the fluid volumes were not all gastric, but the fluid were replaced as if the losses were all gastric, then the urinary sodium would rise to these levels, as excess sodium is being inadvertently given. … the results available in the [H2] files are strongly suggestive that A was given excess water containing sodium because gastric volume replacements were over estimated. ’ 13.74. Despite rigorous cross-examination on this point, Dr Campbell’s analysis remained consistent and well-reasoned. He was challenged on a range of issues including whether or not he had included the impact of the IV saline, glucose and Dioralyte treatments that A had been receiving in the period up to 4.12.19, as they were part of her replacement fluids regime of which he was aware. He also considered and discounted the impact of her operation and high urinary volume. He was able to confirm his awareness and inclusion of the relevant issues, and indeed although concise they are touched on in the paragraph quoted above. 13.75. In his oral evidence he confirmed it as follows: ‘the glucose, Dioralyte and sodium provided through the saline drip at both H1 and H2 did not cause the problems seen in respect of urinary sodium. He explained that the chosen rate of installation of Dioralyte and IV sodium was dependent on amount of fluid measured from gastric losses. If we postulate that the losses from PEG were all due to a dysmotile gut, then the sodium losses would approximate to the amount of fluid distilled into the child. Therefore, the urinary sodium levels would be within normal levels. But they were high. So if they were high, the only possibility is that some of that volume was added to the bag and had not gone through child’s system, so the true losses from the child’s gut were over-estimated and were then replaced with a sodium-rich replacement fluid. This caused urinary sodium levels to rise, as A’s body struggled to get rid of sodium and urine. The urine output was high as well, suggesting fluid measured was probably higher than was a true gastric loss. In other words, high urinary sodium and high urine output rates are indicative of the child getting more fluid and more sodium rich fluid than the child was losing.’ 13.76. He also noted, in his final addendum report, that urinary output up to 11.12.19 was high at a range of 3.7-6.0 ml/kg/day, that it then fell in the ten days following and from 22.12.19 had an average of 2.75 ml/kg/day. This led him to conclude:‘There is evidence of high urine output, but on analysis this is a normal response to high fluid intake, above what was required, due to over estimation of fluid losses due to PEG drainage. From 22nd December onwards, urine output is normal for a tube fed child.’
‘There are normal ranges published … The 3 time points when samples were sent for analysis of the 3 major electrolytes (sodium, potassium and chloride). … Time point I shows chloride in the lower limit of normal, but sodium and potassium abnormally low. Time point 2 shows all electrolytes to be low. Time point 3 is a normal chloride and sodium with potassium just below the lower limit of normal. Time points I and 2 are strongly suggestive of dilution with water. Time point 3 is probably normal. Dilution of gastric fluid with small intestinal fluid would be detected with high, not low potassium, as well as bile being present in the fluid. Time point 1 and 2 are unlikely to be due to another biological fluid contaminating the PEG drainage bag.’ 13.79. Again he was carefully questioned and maintained a reasoned and firm analysis. He confirmed that A had no kidney problems that could lead to these results, and nor could the Dioralyte or other medications that were detected in the gastric fluid. 13.80. He confirmed that if water was introduced into the stomach, because of the PEG-J and the free drainage via the gastric tube, the vast majority of it would drain into the bag and would not therefore enter into A’s system (save for a very small amount, he estimated about 20ml). 13.81. He therefore concluded, and I consider he did so on a soundly reasoned scientific basis: ‘Taking all these findings together [urinary sodium and gastric aspirate biochemistry], there is a very high likelihood that the intermittently high gastric fluid losses, are due to the intermittent, external administration of water to the gastrostomy drainage bag.’ 13.82. When he was asked to consider the overall picture: the chemistry, the volumes, the pattern set out in the fluid charts - where there was a consistent picture of very much smaller volumes of gastric losses drained during all periods when only PGM was there, compared to significantly larger amounts beginning shortly after M arrived on the ward in the afternoons - he considered that the picture appeared consistent with fluid being added and not generated by A. This appraisal was well-supported by his well-reasoned analysis. 13.83. GASTRIC LOSSES – CONUNDRUM PERIOD & 20.12.19 – Following M’s exclusion from the ward after the events of 11.12.19, a conundrum appears to be posed by ongoing gastric losses until 22.12.19, and in particular the allegation sought by the LA in relation to the loss of 153ml on the afternoon of 20.12.19 following M’s contact. 13.84. I reproduce here the figures from the table attached to Dr Campbell’s second addendum report (with added figures for the dates 2-5.12.19 for completeness): 2.12.19 – 801ml 3.12.19 – 655 4.12.19 – 953 5.12.19 – 1039 6.12.19 - 791 7.12.19 - 948 8.12.19 - 693 9.12.19 - 690 10.12.19 - 565 11.12.19 - 839 (M’s last day on the ward) 12.12.19 - 30 13.12.19 - 100 14.12.19 - 368 15.12.19 - 330 16.12.19 - 363 (Start of reduction in fluid replacement with Dioralyte?) 17.12.19 - 279 (M had supervised contact) 18.12.19 - 219 (Clamping began) 19.12.19 - 239 20.12.19 - 404 (M had supervised contact) 21.12.19 - 48 22.12.19 - 3 23.12.19 - 2 24.12.19 - 9. 13.85. I note briefly here that in an e-note dated 16.12.19, there is a figure of 423ml given for the previous day 15.12.19. On the fluids chart it shows the figure of 330ml. It is unknown where the figure of 423ml comes from, and I consider that the fluids chart, as it is completed at the time by the nurse measuring and recording the amounts, is more likely to be accurate than another nurse in a separate note the next day where she is more likely to have made an error or mistyped. 13.86. Dr Campbell’s initial analysis based on an erroneous understanding of the date when M was last on the ward was as follows (and in his report where he was not acknowledging the presence of gut dysmotility): ‘The observation that the high gastric fluid volumes settled after mum was excluded on 18th(sic) December 2019 suggests the mother was at least involved with diluting the gastric fluids.’
‘The daily average PEG fluid loss from 6th December to 11" December was 754.3mls. The daily average over the subsequent 3 days fell to 166mls per day. The fall was abrupt and did not taper. It should be noted that from 14th December the volumes of PEG losses did seem to rise from the daily average of 166mls to around 300mls, but fell consistently day by day since that time. It is common knowledge that after a prolonged period of gastric drainage, the stomach needs some time to recover its normal peristaltic capacity over a number of days (a week or sometimes more). It is not a surprise that the gastric losses rose from 3ml to 100mis to 368 mis on 130, 14" and 15th December respectively. It would be expected in the absence of an underlying motility or obstructive problem, for the volume of PEG fluid drained to fall across several days. That is what in fact happened. Occasional days of increased losses can be recorded in the normal situations. I am concerned that the trend of day on day reduction of PEG fluid drained reversed on 20" December and the following day showed a ten-fold reduction. This is not the normal pattern of variance where I would accept a single day of one off 20% increased fluid increase, and a steady decrease thereafter. This of course happened between 18 and 19th December (more like a 10% increase rather than a 28% increase). On the one hand a daily variance rising to 28% on the previous day could be overlooked as innocent, given the trend is so strongly down ward I would be concerned that the trend was strongly reversed on the day when the mother visited would suggest that possible interference with gastric drainage may have occurred. No such trend was observed on 17" December when a similar supervised contact occurred. I would want to consider any further factors that come to light and change my opinion in the light of those factors, but on balance I am concerned that supervised contact with the mother on 20th (but not 17th) December led to a change in the volume of fluid lost via the PEG.’
‘I said up to 2 hours – that’s probably right but there’s a bit of uncertainty about it’
‘M would like everything else tried before using PEG [as M had expressed her concerns at the pattern of gastric feeding leading to aspiration problems] and wondering if can continue as it is [i.e. PEG-J] including IV supplementation [partial TPN]. M prefers IV supplementation.Explained TPN would need close monitoring which isn’t available’, then later at the end of the same note: ‘M revisited TPN option – explained will leave this with gastro team to decide’
‘M asked about the TPN again, saying that she doesn't want A to start it but if she doesn’t gain weight she would need it. We explained that it is still early to discuss TPN as we are not sure what the main problem is. M understands.’ 14.60. On 7.12.19 M is recorded by S.N.ST in her e-note as follows: ‘mum has been asking lots of questions around TPN and saying how she thinks that’s the best option for A’
‘mum mentioned about TPN having been suggested by a nurse on Mountain ward, and wondered if this might be an option to help A.’