Death of an 11-year-old boy in May 2017. Parents called an ambulance because Child X was suffering with a chest infection. Paramedics attempted to take him to the nearest hospital but parents refused and he was taken to a hospital further away. Child X suffered cardiac arrest en route and died. Child X had complex health needs since birth including cerebral palsy and epilepsy. His parents cared for him full time. He was admitted to hospital twice in May 2015 and Father questioned treatment. A Section 17 assessment was triggered in July 2015. Section 47 enquiries were initiated in January 2016 which led to Child X being made subject of a Child Protection Plan for neglect, later stepped down to a Child in Need plan. Several professionals reported aggressive behaviour by Father and parents were difficult to contact and displayed challenging behaviour. Family are Black/African Caribbean and Jehovah's Witnesses. Lessons learned include: the threshold for intervention due to neglect was too high; emergency contingency planning should be given more attention when working with families with children with life limiting conditions; and professionals would have benefited from a unified approach to working with a family they found hard to engage. Makes recommendations including: there should be clear guidance for staff where parents are reluctant to engage; ensure a system for identifying a Lead Professional for all children with complex needs is in place; and the ambulance service should review guidance on how police assistance can be used to ensure the welfare of patients.
      
 Title:  Serious case review: Child X. LSCB: Lewisham Safeguarding Children Partnership Author: Jane Doherty Date of publication: 2019  This case review report was deposited by the publishing LSCB(s) with the national SCR repository, a partnership between the Association of Independent LSCB Chairs and the NSPCC.  This report is available online via the NSPCC Library Catalogue. Copyright of this report remains with the publishing LSCB(s) listed above.                             1             Safeguarding Children Partnership  Serious Case Review  Child X                           Author: Jane Doherty 4th July 2019   2  TABLE OF CONTENTS   Page 1 INTRODUCTION 1 2 ARRANGEMENTS FOR THE SERIOUS CASE REVIEW 3 3 FAMILY INVOLVEMENT  6 4 METHODOLOGY USED TO DRAW UP THIS REPORT 6 5 COMMENTS ON LIMITATIONS OF THE REVIEW  7 6 SUMMARY OF PROFESSIONAL INVOLVEMENT  8 7 ANALYSIS OF PRACTICE 20 8 FAMILY CONTRIBUTION  34 9 LESSONS FROM PRACTITIONERS AND MANAGERS 35 10 LESSONS LEARNED  36 11 RECOMMENDATIONS 37                   3 1 Introduction 1.1 This Serious Case Review was commissioned by Lewisham Safeguarding Children Board to examine the practice of the multi-agency network surrounding Child X and his family.  1.2 Child X died in May 2017 aged 11. The following is a brief summary of the circumstances that led to his death.    1.3 Child X had complex health and medical needs which included cerebral palsy, epilepsy and visual impairment. He required full time care as he had no mobility, no speech and was fed via Percutaneous Endoscopic Gastrostomy (PEG) feed. His parents were Child X’s full time carers with some support from his grandmother.  1.4 In 2015 there were on going professional concerns about lack of parental engagement in his health care with inconsistent attendance at a number of health appointments. Child X’s father was reported by a number of professionals to be ‘obstructive’ and could appear as challenging to professionals. These concerns contributed to Child X being subject to a Child Protection Plan that lasted for nine months. 1.5 As a consequence of his medical needs, Child X suffered with frequent respiratory problems. In the days leading up to his death, he had had a chest infection for 5 days and his parents were treating him with antibiotics. His condition worsened and his parents called London Ambulance Service. At the scene, London Ambulance Service crew reported that they believed Child X to be gravely ill and in need of immediate medical treatment which they impressed upon the parents several times. Despite this, Child X’s parents refused to allow the crew to take him to the nearest hospital (University Hospital Lewisham). This was understood to be for historical reasons relating to Child X’s early care.  1.6 The ambulance crew reluctantly agreed to take him to The Evelina Hospital (part of Guy’s and St. Thomas’s Trust) where he was well known, but departure from the home was further delayed.   En route, the crew tried to persuade the father to allow them to take Child X to University Hospital Lewisham and then as the ambulance passed Kings College Hospital, they tried to get agreement to take Child X there. Father continued to insist that they take him to The Evelina. Child X suffered a cardiac arrest one and a half miles before arrival at the hospital (one hour after London Ambulance Service first arrived at the home address). Despite resuscitation by both the ambulance crew and hospital staff, Child X sadly died.    4  2 Arrangements for the Serious Case Review  2.1 After the death of Child X, Lewisham Safeguarding Children Board took the view that the criteria for a Serious Case Review had been met which is entirely consistent with the guidance in ‘Working Together to Safeguard Children’1 (referred to in this document as Working Together) 2015. In this case the following applies as abuse of a child is either known or suspected and the child died (5(2) (b)(i) and there are concerns about how organisations or professionals worked together to safeguard the child.   2.2 Working Together (2015) Chapter 4 Para 11 states a Serious Case Review should be conducted in a way which:  recognises the complex circumstances in which professionals work together to safeguard children;   seeks to understand precisely who did what and the underlying reasons that led individuals and organisations to act as they did;   seeks to understand practice from the viewpoint of the individuals and organisations involved at the time rather than using hindsight;   is transparent about the way data is collected and analysed; and   makes use of relevant research and case evidence to inform the findings 2.3 The purpose of the review is to;   look at what happened in the case and why and what action will be taken to learn from the review findings  Identify actions that result in lasting improvements to those services working to safeguard and promote the welfare of children.  Provide a useful insight into the way organisations are working together to safeguard and protect the welfare of children.                                                             1Working Together to Safeguard Children (Working Together) is the government’s overarching guidance on safeguarding.    5 2.4 Malcolm Ward was appointed to chair the Independent Panel. Malcolm is an Independent Social Work Consultant. He is an experienced Serious Case Review Chair and overview author with significant expertise in safeguarding, quality assurance and child protection.    Jane Doherty was appointed to produce this overview report. Jane is an Independent Social Work Consultant with a considerable background in Child Protection and Quality Assurance. As an independent Consultant she now specialises in multi-agency learning reviews including partnership reviews and SCRs. Jane is accredited as a reviewer using the Social Care Institute of Excellence (SCIE) Learning Together model. 2.5 Lewisham Safeguarding Children Board appointed an Independent Review Panel to oversee the review. None of the panel members had any direct involvement in the management of Child X’s care.  Membership is in the table below:   Agency  Representative Independent Chair of the Panel  Malcolm Ward  Independent Overview Report Author  Jane Doherty Lewisham Council Children's Social Care  Service Manager, Quality Assurance, Children’s Social Care, CYP London Borough Lewisham Local Authority Education  Service Manager Access, Inclusion and Participation, Education Standards and Inclusion Lewisham and Greenwich NHS Trust Trust Lead Named Nurse Safeguarding Children and Young People Lewisham Safeguarding Children Board  Business Manager Metropolitan Police Service,  Lead Officer, Specialist Crime Review Group Lewisham Clinical Commissioning Group Consultant Community Paediatrician & Designated Doctor London Ambulance Service  Quality, Governance and Assurance Manager/ Sector Engagement Manager/Safeguarding Children’s Specialist Lewisham Safeguarding Children Board  Lay Member    6  2.6 It was determined through the emerging facts in the case that the following agencies should contribute to the review. These agencies submitted Independent Management Reviews (IMR) and contributed through practitioner events and providing further documents to the reviewers.     Agency  Contribution  School IMR and chronology  Guys and St Thomas’s Trust (Evelina Children’s Hospital)  IMR and chronology  General Practitioner (GP) IMR and chronology  Lewisham and Greenwich NHS Trust  IMR and chronology  Children's Social Care  IMR and chronology  Children and Young People – Access, Inclusion and Participation Lewisham  IMR and chronology  London Metropolitan Police  IMR and chronology  London Ambulance Service  IMR and chronology   2.7 The Terms of Reference agreed by the Independent Chair of Lewisham Safeguarding Children Board were that the period under detailed review would be from 1st May 2015 and 27th May 2017 (the date of Child X’s death). Agencies were asked to summarise any other relevant information pre-dating this period, to add context and background to their report.  2.8 The methodology used by Lewisham Safeguarding Children Board in this review is a hybrid model comprising of panel meetings and consultations with staff.  Each agency was asked to complete a chronology, and undertake an Independent Management Report. The reports are an opportunity for individual agencies to describe and analyse their contact with the family and consult practitioners involved for their views. Their analysis forms the basis of this report.    2.9 Lewisham Safeguarding Children Board held a series of panel meetings, led by the Independent Reviewers, where all the agencies contributed to the process of gathering and analysing the material provided. The panel considered at all stages how early learning could be shared with relevant agencies and staff. The recommendations and action plans will be shared with staff and implemented immediately where possible.    7 2.10  Statutory guidance on the conduct of learning and improvement activities to safeguard and protect children, including serious case reviews states that:   ‘Reviews are not ends in themselves. The purpose of these reviews is to identify improvements which are needed and to consolidate good practice. LSCBs and their partner organisations should translate the findings from reviews into programmes of action which lead to sustainable improvements and the prevention of death, serious injury or harm to children”. (Working Together to Safeguard Children 2015, 4:7)’ 2.11 Consultation and learning events were held in April and October 2018 to enable those practitioners who worked with the family to contribute to the overall findings and lessons from the review. The latter event was held prior to the final publication of the report to feedback findings from the review and to ensure views from the practitioners had been captured. Where relevant their views have been incorporated throughout the report.  3 Family Involvement  3.1 In line with expectations laid down in Working Together, the parents were advised that the review was underway. They were invited to take part by meeting the Independent Reviewers both by letters and phone. A number of options were provided as to how the parents could contribute their views but they chose not to take part when the review was taking place. The Business Manager for Lewisham Safeguarding Children Board spoke to Child X’s mother on several occasions where she was clear that she did not want to take part. During the calls she expressed anger and disappointment at ‘Lewisham staff’. However in the final stages as the report was being finalised, Mother attended two meetings with representatives from the review. Her views are captured in section 8.  The Business Manager was unable to establish any contact with Child X’s father 4 Methodology used to produce this Overview Report  4.1 This report is informed by;   The agency chronologies, Independent Management Reviews and other reports   Background information from agencies involved in the review  Panel discussions and analysis  Dialogue with Independent Management Reviews authors   Input from practitioners via the ‘Learning and Consultation’ events     8 4.2 The report consists of   A factual context  Analysis of how the agencies worked together from the information provided in their Independent Management Reviews   Commentary on the family situation   Analysis of practice and lessons learned  Recommendations 4.3 The review has been conducted and written with the benefit of hindsight, which often distorts the reader’s view of the predictability of events, which may not have been evident at the time.    It is important to be aware as Munro (2011) states just how much hindsight distorts our judgement about the predictability of an adverse outcome. Once an outcome is known we can look back and believe we can see where practice, actions or assessments were critical in leading to that outcome. This is not necessarily the case, and information often becomes much clearer after an event has occurred. The review therefore tried to avoid this hindsight bias.  4.4 With the above in mind the review is also sensitive to pressures on agencies and the demands of the work that are sometimes overwhelming for even the most capable of workers.  It is therefore important to disseminate the learning and reflect on how the lessons from this review can help support better practice, rather than apportion blame to agencies or individuals.   5 Comment about limitations in the review process   5.1  There are a number of gaps in the information contained in the review which are  highlighted in this section. For example practitioners from The Evelina were not  present at the practitioner events, meaning that their perspective on the family  and working arrangements is missing. As there were several lengthy hospital  admissions this is a significant omission in the information.  The Safeguarding  Nurse from The Evelina did attend the later feedback event, which the Lead  Reviewers found useful.  5.2 Also missing from this event were practitioners from London Ambulance Service due to operational issues. The panel and the report author therefore, were not able to benefit from first-hand accounts from those present the night Child X died. The safeguarding lead from London Ambulance Service attended the later feedback event and provided helpful context in explaining current working practices.       9 5.3 During the period where Child X was subject to a Child Protection Plan in Lewisham, the Targeted Family Support Service worked with the family for a period of about six months. At the point of the start of the review the service had been de-commissioned and the records pertaining to the family had been destroyed. The Targeted Family Support worker was significant for the family and it is recorded a number of times that they (the family) appreciated the work that the worker had done and the support they had offered. These records being unavailable represents a significant loss in terms of understanding why this was, as this appeared to be one of the services the family had a positive relationship with.  The worker had left the department some months prior to the review and so was not able to participate. 5.4 The panel were advised that ordinarily there should have been a summary of the work completed by the service on the child’s social care records, but this was not the case here.   The panel were unable to establish whether this was a systemic issue or unique to this case and as such it is subject to a recommendation at the conclusion of the report for partner agencies to review their commissioning arrangements in regard to retention of records.   5.5 As stated in section 3 another significant omission from the report are the family’s views.  6 Summary of professional involvement   Family members   Names Age at the time of the incident  Gender Relationship Ethnicity Child X 11 M Subject  Black/African Caribbean  Child 1 8 M Sibling  Black/African Caribbean Child 2  2 F Sibling   Black/African Caribbean Mother  29 M Mother  Black/African Caribbean  Father   35 F Father  Black/African Caribbean Maternal Grandmother  N/k  F Grandmother (provided respite care for child X) Black/African Caribbean    10 6.1 Each of the agencies involved in this review submitted a detailed chronology of their involvement with Child X and other family members in the period under review. Those submissions have been combined to make one multi agency chronology, which is summarised here. Further factual information is provided in some subsequent sections where relevant.  6.2 A wealth of information was submitted covering the review period. It is usual that a child with such complex needs would have a myriad of appointments with a range of professionals.  In view of this, the information submitted was comprehensive and this account is not intended to be an exhaustive or day to day list of professional involvement, but a summary of the most significant events.  This provides a framework to the work carried out with the family and offers some context to the challenges faced by both the family and professionals. To assist the reader, the following section provides an explanation of the number of health professionals involved in Child X’s care.   Explanation of health roles involved with the family and Child X  6.3  During his lifetime Child X saw several different specialists who had expertise in different aspects of medical care. These are summarised below. There is an inherent acknowledgement that Child X’s complex health needs were so great that it would have been an extremely demanding task to care for him. This review acknowledges that X’s parents cared for him day in, day out. It is an unfortunate fact that for the family, that Child X’s wider support care was fragmented because of the design of the National Health Service and the way services are offered. The amount of input Child X needed from a variety of clinicians in different settings would have tested any parent trying to manage in these circumstances. This was further complicated by the parents feeling that they could not use the local hospital services.       6.4 A Consultant Community Paediatrician oversaw Child X’s care throughout the period under review. This Paediatrician was also the doctor at his school and also the Trust community doctor with an interest in epilepsy. Originally she was responsible for Child X’s epilepsy care but this transferred to the Consultant Paediatrician at Evelina Children’s Hospital in December 2016 at the parents’ request. The Consultant Community Paediatrician continued to be responsible for his overall health care.  6.5 Another Consultant Community Paediatrician saw Child X in the multi-disciplinary feeding clinic at Kaleidoscope2.                                                             2 Kaleidoscope is multi agency centre in Lewisham, providing services for local children and young people with special health, education, mental health or social needs.    11 6.6 Child X saw a Consultant Respiratory Paediatrician who monitored his respiratory function. This had been compromised by his gastro oesophageal reflux that could (and did) lead to aspiration of his stomach contents into his lungs that caused respiratory symptoms. He was seriously ill several times before his death with resulting chest infections. Child X saw two separate consultants in this clinic. 6.7  A Consultant Paediatric Gastroenterologist helped monitor the gastro oesophageal reflux to try and help prevent it. 6.8 A Consultant Paediatric Surgeon advised on whether or not surgery would help prevent the reflux and protect the respiratory system. This consultant also supervised his gastrostomy. 6.9 Another Consultant Paediatrician in Neuro-disability, who was an expert on tone management, managed this aspect of his care.  6.10 A Consultant Paediatric Neurologist regarding his tone and dystonic movement    issues also saw Child X. 6.11 Two further Consultant Paediatric Neurologists saw Child X in relation to his  epilepsy management 6.12 A Consultant Paediatric Orthopaedic Surgeon oversaw Child X’s hip  management.  6.13 Supporting the medical teams, Child X also saw a number of physiotherapists,  occupational therapists and social workers, some attached to the community  paediatricians and some who worked in the multi-disciplinary setting and  employed by the Local Authority. He was also on role at a local special school.  The role of the Lead Professional and its importance for children who have  complex needs is discussed further in section 7.     12 Background History   6.14  Child X had a complex medical history with multiple diagnoses at the time of his  death, which he had had from his birth. After an uneventful pregnancy he  suffered meconium aspiration syndrome, which led to cerebral palsy and  complex neurodisability as well as severe epilepsy and congenital  hypothyroidism. He suffered from severe gastro oesophageal reflux with a  significant risk of aspiration. He was fed via a PEG tube. The severity of his  reflux meant he was prone to  recurrent lower respiratory tract infections.  6.15 Child X’s parents were his full-time carers; they received direct payments for his  care and had 9 hours of respite care weekly that was provided by his Maternal  Grandmother. He was dependent on his carers for all his activities of daily living  e.g. bathing, transferring, dressing, toileting, continence, stimulation and feeding.  Child X was able to vocalise sounds and smile but he could not communicate  verbally. His parents were dedicated to him and cared for him tirelessly around  the clock.   6.16 Prior to the period under review the Multi Agency Pathway Planning team  (known throughout the report as MAPP) were involved in the co-ordination of  services to the family. In 2013, however the parents withdrew their consent for  this service (this is discussed later in the report in section 7).  6.17 It would appear that Child X’s parents harboured long-standing anger towards  staff at University Hospital Lewisham, thought to be due to the circumstances  surrounding Child X’s birth. In view of this they preferred his treatment and  management of his condition to be carried out at the Evelina Children’s Hospital.   The mistrust extended to Child X’s parents refusing treatment at University  Hospital Lewisham in emergency situations, despite this being the closest  Emergency Department to the family’s address. This led to difficulties with many  staff working in Greenwich and Lewisham Community Trust.  Practice Summary from the review period – Key Events 2015 (Child X admitted to hospital) 6.18 Child X had two hospital admissions in May 2015 both of which required  emergency treatment. In the first incident Child X suffered a seizure and was  admitted to The Evelina for observation. It is recorded that Child X’s father  became anxious as he felt that the seizure was as a result of reduced  medication. Father questioned the treatment regime. The hospital records state  Father went on to tell medical staff that he was the ‘decision maker’ and that  he  would take responsibility for the medication. He added that if Child X died  because of that then that would be ‘on him’. An agreement was made in terms of  medication administration. On this occasion Child X’s Father was ‘too agitated’ to  wait for the porter to take Child X to the ward, so he took off X’s monitoring   13  equipment and  walked to the ward with him. Child X’s medication was  completed and he was discharged.  6.19 Later that month London Ambulance Service were called by the GP as Child X  was suffering from a chest infection that had worsened over 3 days. The  ambulance crew assessed that due to Child X’s respiratory problems he should  be conveyed to University Hospital Lewisham as that was the closest and this is  in line with London Ambulance Service policy. Father insisted that X be taken to  The Evelina and stated if Child X was not taken there he would take him there  himself. In view of this, the crew conveyed the child to The Evelina where he was  admitted.  6.20 Child X was very unwell and transferred to the Paediatric Intensive Care Unit.  Father was said to be very unhappy about particular aspects of the proposed  medication, as he believed it had caused Child X pain on a previous occasion.  This was resolved by using alternatives. Child X remained in hospital for  approximately two weeks before being discharged home. Child X however did  not return to school after this hospital admission and was out of school until  June the  following year.  6.21 In June, a Community Paediatrician led multi-disciplinary meeting was held. The  therapists had planned to introduce Child X to some specialist equipment to  assist his speech and language therapy and thereby aid his overall  communication. This proved impossible to implement as Child X was not in  school. His continued absence from school was cause for concern for  professionals at this time and continued to be. His parents did not return him to  school because they did not think that he had adequate 1:1 support.  6.22 During July, professionals, including the Dietician, the Speech and Language  Therapist (SALT) and Continuing Care Nursing Team called the parents for  routine updates and discussions. All but one of the calls went unanswered and  were not returned. There was a repeated pattern of the parents being hard to  contact.  6.23 In the same month Father went to the GP surgery to request antibiotics as he  believed Child X had a chest infection. The GP on call tried to contact Father but  the call went unanswered. Father went back to the surgery five days later without  an appointment and requested that he be seen. The GP prescribed the  requested antibiotics without seeing Child X.       14 Practice Learning Point The family had antibiotics on repeat prescription due to Child X’s recurring chest infections. This arrangement was put in place by the consultant at the Evelina in liaison with the GP Practice  On this occasion there was a long gap of five days between the initial request for antibiotics and father attending for a prescription. The GP gave antibiotics but there was an over reliance on Child X’s parents to assess his health as there was no plan for a follow up and Child X was not seen by the GP. This is discussed in more detail in section 7 (paragraphs 7.33 -7.36) 6.24 Later that month, Child X attended with his parents at the Out Patients  Department in The Evelina with the Respiratory Consultant. Parents discussed  their concerns which were:    Child X was refluxing despite the medication to reduce it and that the refluxing had contributed to his recent respiratory tract infection.  Child X was still having significant pain from his hips and required further follow-up with the Orthopaedic Surgeon.   Child X was said to be stiff and dystonic and parents wanted a medicines review either with the Community Paediatrician or his Neurologist.    Parents were said to not be ‘keen’ on the antibiotics prescribed for Child X after the last admission.  6.25 It is not clear what the basis for the parents’ concerns were but the Consultant  explained that the medication was acting not only as an antibiotic but also as an  anti-inflammatory that would help reduce respiratory infections. At the  appointment it was confirmed that Child X had severe gastro oesophageal reflux  causing a severe risk of aspiration. In view of this it was discussed that he may  need an operation to treat it.  6.26 Various appointments were made in the latter half of July and August in relation  to trying to get Child X’s seating right for him. The Occupational Therapists had  not been able to assess this properly due to the amount of time Child X had  been absent from school and this was causing concern.  6.27 At the same time concerns were building among professionals involved in his  care, not just about the fact that he had not returned to school but also about his  weight loss, his general positioning when they visited and the parents’ apparent  reluctance to follow advice.    15 6.28 Professional concern for Child X came to a head at the end of August when  there was a Multi-Disciplinary Team medical review led by the Community  Pediatrician. Child X’s parents attended but were late and did not bring Child X  with them. At the meeting the parents were concerned about Child X’s weight  loss but appeared unwilling to consider changing the feeding regime. Child X  was still in pain due to his hip.  Father reported that he was not planning to send  him back to school in September as the one to one support he had requested  was not in place. Further, his education ‘statement’ was not yet complete due to  it  needing to be adapted into the Education Health and Care Plan.  6.29 The concerns raised prompted a home visit by the Community Paediatrician, as  she had not seen Child X for his review. Following this the Paediatrician  completed an assessment under the Common Assessment Framework and sent  it to Children’s Social Care and other professionals, outlining her concerns. The  report was detailed and this triggered a Child and Family Assessment under s17  of the Children Act 1989. As a result of this the parents met with the social  worker (albeit some 3 weeks after the referral) and said that they were accepting  of Children’s Social Care involvement.  6.30 Health professionals however, continued to raise concerns about the care of  Child X and just prior to the completion of the assessment in November 2015  there was communication between several professionals which detailed the  following concerns:    The parents’ lack of co-operation to assess and modify Child X’s seating arrangements and the subsequent impact of this on his safety and pain in his hips. The issue with his chair had been long standing (at least two years at this point)    The lack of toys and other stimulation for Child X   The parents stopping or altering feeds and medication without medical advice stating that Child X did not cope well with change and that they ‘know their son best’   The number of missed medical appointments  Child X had still not returned to school     16 6.31 The outcome of the s17 assessment (completed well after the target date) was  to offer to work with the family on a Child in Need plan (CIN) and to work in  partnership on the areas of concern. The school agreed to 1:1 support on a  temporary basis to try and facilitate Child X’s return to school. The parents  agreed but did not send Child X to school, citing the lack of a suitable chair as  the reason. Professionals advised that whilst the chair was not ideal, it was still  suitable in the interim and that the chair was not a reason for Child X’s continued  absence. The parents however, continued to resist sending him to school and  Mother reported to professionals that as Child X got older, the less important  they felt school to be for him. She believed instead, that his need for care  overrode the stimulation and peer interaction school offered.    Practice Learning Point In relation to repeated non-attendance at appointments, signs of disengagement and inconsistent attendance need to be recognised early so that potential risk can be assessed, particularly in vulnerable children.   The term ‘Did not Attend’ is still widely used in Lewisham. Switching the terminology to ‘Was not Brought’ places the onus on the parents to take the child to the appointment and so is a better indicator by which to recognise neglect.  This is discussed further in s7 (paragraph 7.3)    Events leading to Initial Child Protection Conference, 2016  6.32  In January 2016 a Child In Need meeting was held with a number of  professionals. The parents attended and Father had what was described as a  verbal outburst about Child X’s equipment.  He was said to be physically  intimidating and verbally abusive towards the Occupational Therapists and other  professionals. Mother tried to ‘restrain’ him but the couple left the meeting after  40 minutes.  The Social Worker was tasked with sharing this event with her  manager to consider escalating the concerns to Child Protection.  6.33 In consultation with her manager, the Social Worker initiated s47 (Child  Protection) enquiries, which ultimately led to an Initial Child Protection  Conference, held in March 2016. Child X was made subject to a Child Protection  Plan under the category of neglect on the grounds that his needs were not being  adequately met. His siblings were made subject to Child In Need plans.   6.34 In early April, Child X had a medical review with the Community Paediatrician  and other professionals. During the appointment Child X was very distressed  with pain in his hips. His overall weight loss was a concern as he had  gone from   17 the  9th centile to the 2nd Centile. During this appointment a lack of communication between the community health teams and the Evelina was noted.  6.35 The parents favoured advice from the latter but were not willing to give  information about the hospital-based treatment or advice to staff in the  community. As a result, the Paediatrician made an urgent referral to the  Neurologist at the Evelina.   A meeting was requested as professionals  continued to express serious concerns about the parents’ engagement with  Lewisham professionals.  Also as there was very little communication between  the Evelina and Lewisham and vice a versa.  6.36 It was unknown therefore what Child X’s health needs were and what the plan  from the team at Evelina was.  It was thought that a better communication  channel between the Lewisham Care Team and his Care Team at the Evelina  would help to ensure that Child X was safeguarded effectively.  The meeting  took place at the Evelina in May and concerns between professionals were  shared. The family however continued to request services from Evelina rather  than Lewisham.  6.37 In late May the Review Child Protection Conference was held in line with  procedure and Child X continued to be subject to a Child Protection Plan. In the  summary of the conference some positives were noted but Child X was still not  back in school and professionals at the conference were not confident that the changes had been made or would be sustained.   Practice Learning Point The parents were seen to be very problematic by some professionals and some (but not all) found them challenging when trying to establish a positive working relationship with them. This was a key feature throughout the time that professionals were involved with Child X.  There was no formal multi agency collaboration about this issue and using guidance from the London Child Protection Procedures may have helped in this situation. This is analysed further in section 7 (7.15 -7.21)  Child X returned to school  6.38 In June 2016 plans were made for Child X to return to school. On the day he  arrived it was intended that the physiotherapy programme would be in place and  would start immediately. This did not happen, as the physiotherapy team were  unaware that Child X had returned to school. Child X’s parents (particularly  father) were very angry about this. Professionals’ experienced Father as  intimidating and verbally aggressive. The parents said they would take Child X   18 out of school again if these were not set up as agreed. As a result the handover and programme was arranged in mid-July.  6.39 The physiotherapist was concerned about what she perceived as aggression  from Father and completed two staff health and safety risk assessments and two  incident forms. These assessments documented the level of perceived risk to  professionals working with the family and laid down some expectations in terms  of staff safety.   6.40 The following day the social worker visited as part of the Child Protection Plan.  Child X was said to look comfortable with sensory lights and music playing.  Mother was resistant to assessments by the physiotherapist and said she felt let  down by health professionals as there had been delays with the sleep system. In  addition they still did not have a standing frame, or, what they considered to be  suitable seating. 6.41 At a core group later in July, the parents attended 45 minutes late due to another  meeting. Both parents were said to be challenging, questioning the need for s47  enquiries and other professional assessments.   The parents did not feel that  they had been aggressive and stated that they were just asking questions. They  requested an advocate at future meetings to help them get their views across.  This request was not followed up.  6.42 In August further arrangements were made to try and resolve the issue of Child  X’s seating. The parents were advised of the most suitable chair but they  disagreed, as they believed a different chair had been previously suggested.  Parents were described as ‘argumentative’ and ‘not wanting to listen’ to  professional advice. 6.43 In September Child X’s health was said to have improved. At an appointment  with the respiratory consultant at the Evelina his chest was clear and he had  been free of infections for the last six months. Feeding was however still a  difficult issue and in view of this on the advice of the Consultant Paediatrician the  parents agreed a trial of a gastrojejunostomy tube to try and make feeding more  comfortable. Plans were made for this to be done at the end of October. This  was combined with some dental work to avoid the need for two lots of  anaesthetic.  6.44 Tensions however continued with other parts of the network and at a meeting at  the school the parents reportedly refused to speak to the Occupational Therapist  and would not make eye contact with her.  In a planned Multi-Disciplinary Team  meeting the parents again indicated that they would prefer Child X’s medical and  surgical management to be followed up at the Evelina, indicating dissatisfaction  with local services in Lewisham.  They were frustrated that Lewisham  professionals were not receiving information from Evelina Children’s Hospital but  they were not prepared to share the information themselves.    19  Practice Learning Point After a particularly difficult meeting the parents requested an advocate to attend future meetings with them. This would be good practice but this was never followed up.  This is discussed further in s7 (paragraphs 7.37 – 7.39) November 2016 (Step Down from the Child Protection Plan) 6.45 In November at the Review Child Protection Conference, Child X was stepped  down to a Child In Need Plan. Concern remained around the working  relationship and communication between Lewisham health professionals and the  parents. Most professionals thought in general that the parents were co- operating and Child X was well cared for. Child X had gained weight and was  attending school.  No concerns had been raised during visits made as part of the  Child Protection Plan. This was not, however, a unanimous decision and at least  two professionals wanted the Child Protection Plan to continue, with an early  review if possible, to ensure that the changes were sustained.  6.46 A week after the conference Child X was admitted to hospital (Paediatric  Intensive Care Unit) due to having problems feeding. His feeding tube was  blocked and his symptoms were acute and distressing. It has been difficult to  determine how long the tube had been blocked, but at the point of admission  large amounts of bile had been emitting from the tube into his mouth. He had lost  more weight, had a chest infection and was having seizures. Child X was  extremely unwell during this period and received intensive treatment, including a  blood transfusion. This was against father’s wishes as the family informed the  medical staff that they were Jehovah’s Witnesses. No agency had been aware of  this prior to this event. Father raised questions about HIV and hepatitis due to  the blood transfusion. Medical staff reassured him.  6.47 Child X remained in hospital for a period of 3 weeks and was discharged home  towards the end of December. He had been extremely unwell and had been  intubated for a period of two weeks.  On discharge he was bedridden and unable  to tolerate the use of any equipment.  He had lost more weight and his parents  were unhappy that the Targeted Family Support Worker had now ceased (this  was a time limited service) meaning the loss of support for them.   A new referral  would have to be made for the service to resume.        20 Practice Learning Point The Father’s religious views (Jehovah’s Witnesses) were not known about until the acute hospital admission in December 2016 when Child X’s father raised an objection to an emergency blood transfusion. A family’s religious beliefs should always be included in any health or social care assessment but was particularly important for Child X given his medical needs.  It is not clear at this stage why this information was not known but it is a significant omission. More is said about this in section 7 (paragraphs 7.40-7.42)  2017 (Child X had a further hospital admission) 6.48 In January 2017, Child X became extremely unwell and was again admitted to  hospital following further problems with his leaking gastric feeding tube. His  parents outlined to the doctors treating him that they did not want Child X to have  a blood transfusion under any circumstances. The Safeguarding Nurse advised  a discussion with the Social Worker but also outlined that the medical team could  potentially override consent if Child X’s life was threatened. Father refused a  platelet transfusion but did understand that it would be given if the doctors felt it  was necessary to keep Child X alive. Information about the legal basis for this  was kept at Child X’s bedside. Child X’s parents continued to visit daily. This was  another lengthy stay in hospital (approximately 3  weeks) and Child X was  discharged home at the beginning of February.  6.49 It is not clear how long Child X had had feeding difficulties but it was noted that  he was extremely underweight at the point of this second admission.  Professionals did discuss a discharge meeting before Child X went home that  did not happen. During his hospital admission the Social Worker, having  consulted with his manager was advised by to set up a professionals’ meeting  and convene a Legal Planning Meeting. Neither of these two things happened.  6.50 Whilst in hospital a concern was raised about a cut on Child X’s leg that the  parents reported happened with a ‘nail’ on his bed. This was thought to be  suspicious as his bed was electric. This was not resolved until the Social Worker  visited in early February (after Child X had been discharged home) when the  parents offered an explanation that it was a not a nail but a screw. The bed was  too small for Child X and he had cut himself on it when he moved. 6.51 Throughout February there continued to be concerns about Child X’s weight and  his feeding regime. The parents requested an alternative feeding regime but  were advised that this was not clinically appropriate. In the event the feed was  changed and the Social Worker sent out multi agency communication so that  everyone was aware of the new plan. Child X began to gain weight but there  remained concern on behalf of the parents about whether this was the right  regime and whether he was tolerating it sufficiently.    21   Practice Learning Point  There were concerns about the extent of possible neglect Child X had suffered through much of his life, including being made subject to a Child Protection Plan under that category. In view of this it is surprising that his acute hospital admissions and his presentation (considerable loss of weight) at the point of admission were not investigated more formally. More is said about this in section 7 (paragraphs 7.1 -7.6)  6.52 In March Child X’s parents refused a routine physiotherapy review because the  standing frame they had requested had not been ordered. It had not been  ordered because there was a question mark about whether or not Child X’s  needs had changed in respect of this and full assessment had not been carried  out. Funding was however agreed once the parents made their request again.  6.53 Child X however remained unwell and sadly, in May 2017 Child X’s health  deteriorated significantly again and the events that led to this Serious Case  Review unfolded.   Practice Learning Points At the point at which Child X died this was his third acute episode within a few months. The lack of an overall plan that detailed the family’s wishes in relation to his end of life care is an important factor.    Similarly the absence of an emergency plan may have contributed to his death as the delay in taking him to the hospital meant that vital medical treatment was delayed.  Further, the delay in the ambulance crew in transporting him to the nearest hospital has been the subject of much debate.  There is a learning point for the ambulance service in deploying assistance from the police at an earlier stage in situations where a child’s life is in danger.  These issues are discussed in more detail in section 7 (paragraphs 7.24-7.32)      22 7 Analysis of practice  Recognition of neglect in children with complex needs 7.1 There is a plethora of research available that concludes that children with disabilities and complex needs are more susceptible to abuse and neglect than their able-bodied counterparts largely due to their dependence on adults for their personal care. They are also at greater risk of becoming isolated due to reduced mobility, inaccessible surroundings and difficulties in communication, all of which may make them vulnerable. Neglect of medical needs is often a particular problem.3  7.2 This case resonates strongly with a previous Serious Case Review undertaken in Lewisham in its lack of recognition of possible neglect and its accumulative effects on the child and family. Child X’s medical and developmental needs were, at times, neglected throughout the period under review. The parents did not always take Child X to routine appointments in Lewisham. These appointments were not challenged sufficiently by the professional network. This, coupled with a lack of understanding of the parents’ challenging behaviour towards Lewisham staff meant that Child X’s health needs were not always met. Attendance at appointments did improve during the time of the Child Protection Plan but it is impossible to say whether this would have been sustained in the long term. The circumstances in which Child X died demonstrated that the apparent resentment towards Lewisham staff had been maintained.  7.3 In relation to the number of medical appointments missed by the family, practitioners at the consultation events (for this learning review) acknowledged that in Children’s Services across the piece, Lewisham have not yet moved to a model of ‘Was Not Brought’ rather than ‘Did Not Attend’.  It would be beneficial to make that transition to place the emphasis on the parents’ responsibility to take the child to an appointment.    7.4 There was also neglect of Child X’s education and he missed a significant proportion of his time there. A question arises as to whether attempts to get Child X back into school earlier should have been stepped up given the length of the gap and the perceived benefits of him being there? There were a number of meetings about his attendance at school and it was thought that the intervention of the Social Worker under the auspices of the Child Protection Plan was the best way to reintegrate him into school. This was a successful strategy but only in the short term and it is more likely that the allocation of a one to one worker in school was the catalyst for his return. It is noted though that Child X did then become too                                                            3 Sources:  Marchant and Page, ‘Bridging the Gap’ Child Protection Work with Children with Multiple Disabilities, 1992 NSPCC;  Rotzein, Pembroke College 2003, Safeguarding Disabled Children, Children’s Society 2009    23 ill to attend school in his last few months of life. Practitioners thought that his quality of life at the times that he was able to attend school was notably better, as he enjoyed the interaction and stimulation there.  7.5 Towards the end of Child X’s life he had two prolonged and acute hospital admissions with significant and life threatening weight loss being a feature of both. He had significant issues with feeding tubes at this time and was acutely unwell so some weight loss would be expected during this period, as his normal feeding regime had to be ceased. This was seen by staff as explainable at the time and the parents noted to be doing their best in very difficult circumstances.  7.6 With the benefit of hindsight both practitioners and the panel have questioned why this weight loss was not investigated as safeguarding concerns. This is particularly surprising given that Child X was a Child in Need at that time and had recently been stepped down from a more formal Child Protection Plan. Discharge meetings, professionals meetings and a Legal Planning Meeting were all discussed but not followed through indicating perhaps that professionals struggled to get to grips with this complex situation.  It has not been possible from the existing records to gain an exact account of who did what so the panel do not have an understanding of the thinking at that time.  It would appear that these actions should have been followed through and his weight loss been given more time and attention as a safeguarding concern.  7.7 Given that the recognition and response to issues of possible neglect were a feature in the previous Serious Case Review, the Lewisham Safeguarding Children Board will want to seek reassurance that the learning is being embedded across the network. Policies and procedures in Lewisham need to include relevant guidance about children with complex needs. The lack of co-ordination across the many aspects of X’s care are discussed in the next section.  NB the other case subject to Serious Case Review referred to in this section would have been open to these professionals at the same time. It is therefore unsurprising that the systemic issues arising from these cases are similar.  Co-ordination of care across GP, Community, hospital & London Ambulance Service  7.8 Under the Children Act 1989 Child X’s complex needs would automatically afford him Child in Need (CIN) status and entitle him to a package of care subject to annual review. Although there were assessments conducted under the auspices of the Children Act 1989 there did not appear to be a co-ordinated multi agency overview or plan for this child between 2013 (when the Multi Agency Pathway Planning team ended their involvement) and 2016 when the Child Protection Plan was made. This is a serious omission given his complex needs and the number of professionals involved in the various aspects of his care.    24 7.9 During the period under review the Multi-Disciplinary Team, which was co-ordinated by the community paediatrician, did meet regularly but there was no clear multi agency plan that came out of those meetings. Co-ordination seemed to be better once a social worker was involved though the consistency suffered from changes in staff. There were three different allocated social workers during this period.  Outside of these times it was less co-ordinated. At the practitioner learning event for this review, practitioners were unclear who the Lead Professional (or Lead Clinician) had been and which team was responsible for the role. Some practitioners also felt that there was an over reliance on email as a way of communicating and this was not as effective as meeting face to face with or without the family.  7.10 At times when there were particular difficulties in communication between the Evelina and the community staff in Lewisham they did hold a joint meeting. Written information was shared but staff at Evelina generally did not experience the parents as difficult and so were not previously aware and or had not appreciated the struggles staff in the community setting found. The meeting that took place was a one off meeting rather than the beginning of a more strategic and ongoing way of working together and would have benefitted from being the latter. Difficulties were exacerbated by practitioners not being able to view each other’s electronic records and despite written information being shared, the lack of shared technology was seen as a barrier to working more effectively.  7.11 The lead professional role is defined in government guidance4  (first issued in 2006) as 'a set of functions to be carried out as part of the delivery of effective integrated support'. These functions are to:   Act as a single point of contact for the child, young person or family    Co-ordinate the delivery of the actions agreed by the practitioners involved in the multi-agency Team Around the Child (TAC) to ensure that children, young people and families receive an effective integrated service which is regularly reviewed: these actions will be based on the outcome of the common assessment and recorded in the Common Assessment Framework (CAF) delivery plan     Reduce overlap and inconsistency in the services received by children, young people and their families                                                             4 The Team around the child (TAC) and the lead professional, Children's Workforce Development Council 2006   25 7.12 The guidance makes it explicit that children with complex needs should have a named person in place to co-ordinate services to them. In such circumstances this role is often fulfilled by a health practitioner but could also be a professional from another discipline such as social care. It would appear that this role was allocated to a number of professionals for Child X but the many changes of personnel made the role ineffective in reality. The co-ordination was better at times when there was an allocated social worker but it is not clear if this was an assumed role, which came about due to the safeguarding concerns, or there was a handover from the previous worker.  MAPP also provided a co-ordinated service prior to the scope of this review (see paragraphs 7.13 -7.15).   7.13 Prior to social work intervention MAPP also provided services to the family. MAPP is a care co-ordination service available in Lewisham. Its purpose is to create a Team Around the Family through bringing together the family, the child and relevant professionals at co-ordinated meetings. A multi-agency action plan of support is developed to meet the needs of the child with complex health, learning, therapy or transition needs and family.  7.14 The panel had a number of discussions about why MAPP was not used as an intervention for this family, especially outside of the times when there was an allocated social worker. The answer appears to be that historically MAPP were involved between 2007 and 2013 (albeit the model evolved during that time).  The parents withdrew their consent in 2013 as they did not think that it had brought about any change. MAPP works on a consent model and therefore the service withdrew.  Practitioners’ perception was that the parents were not comfortable being challenged about Child X’s continued non-school attendance and that contributed to them saying that they did not want the service any longer. The model however is one that can be effective in working with children with complex needs and the co-ordination that service had provided was lost.  7.15 Although outside of the scope of the Terms of Reference for this review the information provided by Children’s Social Care suggests that refusal to co-operate with the MAPP process and the implications of that for the family and (more importantly) the service that Child X subsequently received, may have been overlooked. It would appear that it was at this point that the family noticeably disengaged from the professional network and relationships became very strained.  This might have been a suitable point for more robust intervention as in reality the family did not then receive a co-ordinated service between 2013 (when the MAPP ended their involvement) and January 2016 when the S17 assessment was completed. At that stage it was escalated to child protection and the resolve of the family to work in partnership under s17 was never tested.         26 Managing work with Families where there are obstacles and resistance  7.16 From the information provided and from consultation with practitioners, there is no doubt that practitioners found the family difficult to engage. As a consequence, they were anxious about Child X and were not reassured by the parents that they were caring for his health needs.  There is also however, strong evidence that the parents thought the world of Child X and cared for him relentlessly in sometimes very challenging circumstances. As both of these issues are true and feature heavily in the narrative, it is necessary to examine how the professional relationship became so strained and what can be learnt from this.    7.17 Most professionals who came into contact with the family experienced what they described as ‘aggression’ from both parents, but particularly from the father of Child X. It would appear that the anger was generally borne out of the family’s frustration about equipment or treatment programmes for Child X not being right (as they perceived it). The parents’ behaviour created barriers in how professionals felt able to work with them. Their perceived lack of co-operation caused genuine concern from practitioners and caused them anxiety when dealing with the family. Indeed it would appear that it was father’s behaviour towards practitioners at the Child In Need meeting in January 2016 that tipped the balance for the social worker and her manager finding it necessary to undertake Child Protection enquiries. This was however the latest in a long list of mounting concerns about the welfare of Child X.   7.18 One of the most striking issues in agencies’ dealings with the family is how differently it was dealt with. Some agencies met with the parents and drew up a ‘behaviour agreement’, others wrote to the parents, whilst others did nothing. There did not appear to be joined up approach and there is a case to suggest that following processes in the London Child Protection Procedures may have helped.  Section 7 of the procedures deals with Managing work with Families where there are obstacles and resistance and gives a helpful guide to dealing with these issues from a multi-agency perspective.  7.19 The procedure sets out how agencies can support each other whilst continuing to work with the family in question. It gives examples of strategies that can be used to ensure a co-ordinated approach such as holding professionals meetings without the family present in order to keep the child in mind.  In respect of this family, there were many multi agency meetings but none specifically addressed the perceived threatening behaviour. This is particularly pertinent because during the course of the review it is apparent that not all staff experienced difficulties with the family. Support from those who had more positive relationships would have been beneficial.      27 7.20 Action was taken by individual agencies e.g. risk assessments were made and visiting arrangements to ensure safety were put in place. Whilst all of this was necessary in terms of staff welfare and safety, it would have been beneficial to do this as a multi-agency network to establish shared goals and expectations and this did not happen. Some agencies visited in twos as a result of their own internal risk assessments, but other agencies (social workers for example) continued to visit alone.  7.21 It was the case that the parents’ behaviour was challenged by some professionals but on behalf of their own agency. The child protection process had the effect of making the parents more co-operative on the face of it e.g. they attended meetings but practitioners felt that they were largely disengaged and their goal was to complete the tasks cited in the plan rather than engage meaningfully. After letters had been issued in regards to his behaviour, Father would often come to meetings but not contribute, stating that he was ‘there to listen’ and this was interpreted by practitioners as another form of aggression.  7.22 The information was however brought together at the Child Protection Conference and the contribution that the parents’ uncooperative behaviour had made to the threshold criteria for neglect and a Child Protection Plan was clear. This could have been built upon further for the network.  7.23 The source of the parents’ unwillingness to co-operate with certain professionals was unclear. Staff at practitioners’ events stated that they thought that they related to the parents’ historic unhappiness with ‘Lewisham staff’ after Child X’s birth, the details of which have never been clarified. Practitioners were uncertain as to exactly who and which departments the parents were not happy with e.g. hospital and/or community based staff. At times the parents refused to share information from other professionals such as the Evelina and withheld details of Child X’s Education, Health and Care Plan which made making decisions for Child X harder.  7.24 The parents’ challenging behaviour towards ‘Lewisham staff’ was an overwhelming factor for them as it had been so longstanding (the whole of Child X’s – 11 years). In that time, medical staff and practices changed considerably and it may have been that the parents could have been helped to change their view with explanations of these factors. Some staff working with the family found it hard to gain the family’s trust to be able to have more frank conversations such as this. Within a multi-agency context consideration needed to be given as to who may have been able to facilitate this conversation. This may also have resulted in staff having a better understanding of the parents mistrust and therefore being better equipped to work with them.     28 7.25 The latter point is worthy of further comment in that it would appear that for the parents’ the circumstances surrounding their son’s birth has never been resolved for them. There was no investigation at the time and the parents (as far as the author is aware) did not request it. The impact of this has been very significant and the parents (father in particular), has been criticised for what is described as his confrontational approach to some medical professionals. This has almost certainly been influenced by the view they took at the time of Child X’s birth which is undoubtedly still extremely painful and raw for them.  7.26 Parents of disabled children experience an array of emotions such as grief and anger on hearing of a child’s diagnosis. They may also feel the loss of the kind of life that they had imagined their child having and it takes time to come to terms with the diagnosis and understand the quality of their child's life. The review highlights the importance of how parents are helped to deal with this loss.  7.27 As it is, there is no evidence that this very significant issue was included in assessments undertaken, nor was it discussed with the parents to try and gain an understanding of their anger and therefore to try and resolve it.  It was not challenged as part of the child protection process or at the points at which Child X needed to be hospitalised. There is no indication that a stand-alone ‘Carers Assessment’ was carried out and this may have been a good place to try and explore and try to address some of these issues.   7.28 The matter of emergency situations and where Child X would be treated caused concern on at least one occasion prior to his death. As this is the issue that ultimately caused the delay to his admission to hospital on the night that he died, the subject of forward planning for such events is dealt with in the following sections.  Emergency and End of Life Care Planning for children with life limiting illnesses.  7.29 It is not clear from the information provided whether professionals who knew the family considered that Child X had a life limiting illness. Mother mentioned this in a visit with the Social Worker in 2015 and she (the Social Worker) subsequently checked with the GP, who had no record of life expectancy. As part of the information shared within this review the senior manager in charge of the Children with Complex Needs Service in Lewisham, confirmed that it was considered (by their team at least) that Child X did have a life limiting condition.    29 7.30 Thus it would appear that there was no clarity in relation to this among the professional network. As such, Child X was not considered to be terminally ill but his needs were so complex and his symptoms so unpredictable that he did at various times come close to dying. He was particularly ill in his last few months of his life resulting in two hospital admissions (November 2016 and January 2017). Given that these were critical times for him it is surprising that a care plan was not in place to address the parents’ (and Child X’s) wishes in the event that he was again in a critical condition and unlikely to survive.  7.31 This is a hard subject to broach with any family who have children with complex needs and this topic is likely to have been even more difficult to raise with this family, given the problematic relationships involved.  7.32 A plan of this kind would ordinarily make provision for thinking (with the family) about where (if possible), the child would prefer to die, management of any symptoms and pain relief, issues of resuscitation in case of sudden deterioration and aftercare. Support for members of the family could also be included as well as issues arising from any spiritual or religious needs. For Child X the issue of where the family preferred his treatment to take place was particularly key as their preference for The Evelina rather than the local (more immediate) provision was stated on many occasions. A firm plan about where Child X should be treated in an emergency may have helped to broker some discussion of these complex issues.  A key feature of this type of plan is its transparency and shared understanding among professionals and family to try and secure a positive outcome for the child.  7.33 One way this may have been resolved was by referring to the Palliative Care Team at the Evelina. Their remit is to support children and young people with life limiting and life threatening conditions. They can provide specialist symptom management, discuss advanced care planning and support end of life care. This would seem to be a particularly relevant service after Child X’s two acute admissions to hospital in late 2016 and early 2017. This service is also provided by a resource well known to and trusted by Child X’s family.  7.34 Conversations in relation to whether or not the parents wanted Child X to be resuscitated did happen during the acute episodes. The parents expressed a very clear view that they would want everything to be done to preserve his life in those circumstances. There was no ongoing conversation with them in relation to end of life care.    30 7.35 That said, given how challenging some practitioners found them to engage, it seems unlikely that these parents would have accepted a plan (even in an emergency) that involved taking Child X to their nearest hospital. A Patient Specific Protocol as part of an overall plan may have given the professionals involved (mainly London Ambulance Service) the confidence to override the parents’ instructions and seek police assistance in order to take the child to the nearest hospital within a more reasonable timeframe. With this in place it would have been clearer that the child had had repeated acute episodes and swift treatment was crucial.     Emergency treatment for children in life threatening situations  7.36 On the night Child X died the ambulance crew found themselves in a very difficult situation which by its nature required quick decision making, most of which was met with obstacles from the parents, particularly, Child X’s father.  For the ambulance crew Trust guidance exists in the form of Operational Policy 014 Managing Conveyance of Patients, which provides guidance to clinicians around the challenging task of deciding an appropriate destination hospital. The guidance is however clear that in an emergency the patient should be conveyed to the nearest Emergency Department. Child X presented in such a way and so the crew’s desire to convey the patient to the nearest hospital was entirely appropriate and in line with Trust guidance. The difficulty lay in the fact that Child X was not able to give consent and the parents had specific requests about a particular hospital that the crew correctly felt was detrimental to the patient. It was noted by operational staff from London Ambulance Service that in emergency situations involving children, current practice would be to negotiate with the parents on the scene.  In view of this, it may be that policies need to give more emphasis to dealing with situations where there is a dispute, which is threatening the life of a patient.  7.37 Guidance on consent is outlined in Operational Policy 031 Policy for Consent to Examination or Treatment and stipulates that "doubt should be resolved in favour of the preservation of life" and "urgent decisions should be made and immediate action taken in the patient’s best interests". Following the policy would have led the crew to remove Child X to the nearest hospital against the will of the parents. This, however, was a challenging decision to make and had multiple elements to consider. Staff on the scene were balancing the length of time to discuss risks of prolonged transfer; request for police assistance to prevent breach of the peace; and the potential that the parents would convey Child X in their own car with no medical intervention; versus complying with the parents’ request and ultimately having a longer journey time but saving time on the scene.    31 7.38 Given the severity of the situation it is not clear why paramedics at the scene did not consider more robust action such as calling for police assistance (e.g. through Police Powers of Protection) to ensure that Child X received prompt treatment. The crew attempted to get advice from senior staff but were unable to get through due to a poor mobile phone signal.  In response to this LAS are in the process of drafting guidance and the learning from this SCR is being included in training that is currently being rolled out within LAS. The purpose of this will be to skill staff up in dealing with such situations. An article will also be included in the LAS’ learning magazine in addition.   The use of prophylactic and repeat prescription antibiotics  7.39 As discussed in the narrative summary, Child X’s parents had access to antibiotics on repeat prescription. This was because of Child X’s predisposition to recurrent chest infections and his parents often gave him antibiotics as a matter of course.  The information provided on behalf of the GP surgery refers to the fact that there was an over-reliance on the parents to gauge the seriousness of Child X’s medical condition without being assessed independently by a GP. On at least three occasions the GP was involved late in the day and Child X had to be taken to hospital.   7.40 Practitioners involved in the review thought this was very unusual practice, however, the panel were advised that it is a common practice that is still carried out in certain cases. In relation to this set of circumstances the panel concluded that the GP surgery should have been more proactive in assessing Child X’s health when antibiotics were requested by the parents. Ultimately the Consultant Paediatrician and the GP should have reviewed the arrangements.  It is unreasonable and unrealistic to rely on parents’ assessment of their child’s health rather than conduct an examination, especially when the child has such complex medical needs. It is not clear how the parents were (if at all) supported to understand Child X’s needs re his chest health when managing the prophylactic antibiotics. There are parallel clinical processes which should have been in place to monitor his chest health in relation to his breathing and congestion which again would reduce the over reliance on parents to assess his health.    32 7.41 Child X had very complex medical needs and took several medications prescribed by several specialists. At times there appeared to be significant reliance on the parents (especially father) to provide information on medication doses. It would have been more appropriate to contact the specialist who prescribed the medication. Some GPs did make considerable efforts to contact health professionals to confirm medication doses and this is good practice but this was not always the case. Multiple GPs were involved in the care of child X in the last two years of his life. This meant that there was a lack of continuity that contributed to issues around prescribing specialist medications and a lack of oversight concerning issues such as non-compliance with routine care. 7.42 Given the parents’ lack of compliance in other areas of Child X’s treatment, it would have been beneficial to have a named GP responsible for overseeing all of Child X’s care. The Independent Management Report completed on behalf of the GP surgery makes a recommendation to that effect.   The use of advocacy for disabled children and their families.  7.43 The challenges faced by Child X’s parents in caring for him round the clock were many and varied. As we have seen they often had very strong, differing views from professionals about the right treatment or equipment. In at least one meeting which was difficult for both the parents and professionals, Father requested an advocate be present in future. This request was never followed up and was not part of any formal plan to support the family.  7.44 The Targeted Family Support Service did provide a service to the family and the parents appreciated their support. Practitioners consulted during this process were of the view that the Targeted Family Support service helped the parents negotiate their way around the various systems and that the support worker was proactive in making the parents’ views known. In fact, although this was not referred to as advocacy, it was in the Child Protection Plan that professionals should ‘liaise with TFS when necessary on ensuring that the parents’ understand what is being communicated to them’. This service however was relatively short lived for this family (about 6 months) and ended when the Child Protection Plan ended in November 2016, despite the parents’ objection to it coming to an end.    33 7.45 Practitioners also questioned whether this was an appropriate role for this  service given that they were a commissioned service and were working on  behalf of Children’s Social Care.  The service (at least for this family) appeared  to be very parent led and no such ‘advocacy’ was afforded to Child X. It has not  been possible to analyse the role that this service played within the context of  the family, as the records are not available (discussed in section 5). In view of  this, the review has concluded that an appropriate advocacy service or mediation  would have been beneficial. It is noteworthy however that there was confusion  among practitioners about what advocacy services were available, how to  access them and whether there was a cost implication. It may also be necessary  to consider separate advocacy for parents and children.  Issues of equality and diversity  7.46 In line with the above it is significant to note that the father had strong religious  views that may also have impacted on Child X and any preparations for ‘End of  Life Care’. Throughout the chronology Child X had many medical appointments,  hospital admissions and contact with Children’s Social Care and a variety of  other services.  In view of this it is surprising that information about their religious  beliefs (father was Jehovah’s Witness) only became apparent later on towards  the end of Child X’s life when he was very ill and needed a blood transfusion.  7.47 Some practitioners who knew the family very well were unaware of this  information. The impact of religious beliefs for the medical treatment Child X  needed is significant, but does not seem to have been discussed with them in  assessments. It would appear that hospital staff were also unaware of this until  after they had given Child X a blood transfusion and his father raised his  objections to it. It is difficult to ascertain how this information was overlooked  given the well established importance of considering issues arising from diversity  within health and social care. Some staff at the practitioners’ events were honest  in saying that their assessments did not always contain information about a  family’s religious beliefs.   7.48 It has not been possible to check with all the family how much they shared with  professionals about this matter or made their views known, particularly in relation  to medical care. It was raised with mother in interview and she made it clear that  it was not her religion. That said, when the issue did come to light, this was dealt  with very swiftly with both the child in mind and any safeguarding issues that  may have arisen from it. Hospital staff were clear that they would give Child X a  transfusion if his life were threatened and his parents were given information  about this which was kept by his bedside.      34 Child X’s lived experience  7.49 The three children in this family had many contacts with professionals over the  review period and their voice does not stand out strongly in the information  provided. This review has been about Child X so will concentrate on him but  suffice to say the impact of the strain on the family on the younger two siblings is  not conveyed in the information gathered.  7.50 Those who knew him described Child X as ‘a delightful child’. He was very  engaging with familiar adults and liked the interaction and stimulation of his time  in the classroom. He communicated through facial expressions such as smiling  and was able to respond to coloured lights that would grab his attention.  He  would become distressed or very quiet if uncomfortable and his parents and  others who knew him well knew this as a sign that he was not happy.  7.51 Child X’s cognitive ability would have made it difficult to consult him directly but  the expectation would be that any assessment undertaken would have the child  at its centre. Assessments and plans should include the child’s voice and  information about the impact of the parents’ lifestyles e.g. the child’s lived  experience. Most of the information from agencies provided to this review is  silent on this issue suggesting it was not heavily present in the records.  7.52 Ensuring that the voice of the child is assessed and analysed becomes trickier  when the child is non-verbal as was the case with Child X.  In situations where  children are not verbal professionals rely on other cues such as observations,  eye contact, physical contact between parent and child and the level of care  given. It is significant to note that school reported a marked improvement in Child  X's demeanour and alertness when at school, stating that he loved the school  environment and the interaction with the other children. In view of this it is  unfortunate that he was denied this for so long and the review questions his  quality of life when not at school regularly.     7.53 One important way that children with disabilities can have their voice heard is  through an advocate. Advocacy was not provided and practitioners were  unaware if this could be provided by any service specifically to children within  Lewisham.   8 Family Contribution  8.1 As noted earlier in the report, Mother agreed to come and meet with the reviewers towards the end of the process. She attended two meetings, one with her sisters who came to support her and another meeting she attended on her own. She found the meetings very difficult and it was a matter of deep distress to her that professionals might think that she would have neglected or abused Child X. That   35 said, she was measured in her contribution and was open and honest despite how painful she found it.  8.2 Mother told us that she thought there was a lack of understanding about how difficult it was to care for Child X. She acknowledged that they sometimes missed appointments or were late but this was due to Child X being extremely time consuming to care for. He often needed care and attention (sometimes en route to appointments) that could not wait and he was her priority. She also reported that as a family they had repeatedly asked for help and when they were eventually allocated a social worker, they (parents) ended up being accused of abuse and neglect.     8.3 There were many issues with equipment for Child X, e.g. ordering the right equipment, sending the exact measurements (which was very important) and attending the fitting assessments and appointments were enormously difficult to organise and get to at times. It was important to make him comfortable and to be able to comfort him and equipment was the key to this.  8.4 Mother was at pains to emphasise that nothing about looking after a child with such complex needs is easy. Your own life has to be put on hold because the demands of looking after them are so great that there is no room for anything else and this is a huge sacrifice. She put Child X first because she loved him so much but that did mean that she didn’t get to fulfil some of her own aspirations.  8.5 Mother said that she would like to have felt like she was working as part of a team with professionals but she never felt part of it in that way. She found some practitioners collusive. She felt that this may have been to do with her race and colour and if you are in a minority you are not always treated well. She said sometimes she was made to feel like a bad person and she was afraid to speak to professionals because of this.   Sometimes her and Child X’s Father had ideas that they wanted to try but these were not always met with approval and this caused a strain.   8.6 In relation to Child X’s death she said that the night the ambulance came was a familiar scenario in that the crew always wanted to take him to Lewisham. It was therefore not unusual that there was a long conversation about where to take him.  She did not realise that his life was in danger anymore than on those other occasions. She bitterly regrets that she wasn’t there when Child X died as she had not travelled in the ambulance with him.  8.7 Prior to his death she would have appreciated a chance to talk in a support group about his life limiting condition and how to deal with issues surrounding his possible premature death. This would have been too hard to do in a one to one session as that would have been hard to listen to so a group have been more beneficial.      36 9 Lessons learned from Practitioners and Managers  9.1 The methodology used to undertake this Serious Case Review included two consultation events with first line managers and practitioners who knew the family. The view of those who knew the family and worked with them forms an important part of any learning review as it gives practitioners an opportunity to reflect on the issues in the case together as a network. Some learning may be case specific but practitioners were also able to think more widely about any systemic issues that apply more broadly to their safeguarding system as a whole. Those practitioners that were present contributed in an open and honest way and their views are captured here.  9.2 Some practitioners (particularly health staff) recalled that it was very difficult to work with the parents and all too often they felt that they did not have access to Child X in a way that reassured them that he was ok.   Many of them felt that the school had the best relationship and they in particular saw Father more regularly, especially when he was transporting Child X to school. School often reported very positive things about the Father and they had provided a 1:1 tutor for Child X even though this was very unusual and difficult for the school to provide at that time.  9.3 As a network they were genuinely concerned about Child X’s weight, his medication, his seating arrangements whilst at home and the fact that he was missing so much school. They were clear that Child X had been managed under the correct framework e.g. Child Protection.  Practitioners reported that they struggled to find a way to work with the parents, as they seemed suspicious of offers of help. Others had a more positive relationship and felt that the parents were open to work in partnership. There were mixed views amongst practitioners about why the parents were reluctant to take advice from Lewisham staff but none knew the exact detail of what had happened.  9.4 Whilst subject to the Child Protection Plan the parents’ engagement did get better, although practitioners felt that they were ‘complying’ rather than truly understanding what professionals were concerned about. During this time, they were better at attending appointments with Child X and were more communicative at times when they could not make the appointments. Those things ultimately benefitted him. The home environment was made more welcoming for Child X and he had increased sensory stimulation that was good for him, particularly in the periods when he was not in school.   Father however did not always contribute at meetings so it was not always easy for professionals to decipher exactly what he felt.    37 9.5 There was some dissonance between health colleagues and Children’s Social Care as although when workers visited as part of the Child Protection Plan there were no visible concerns, health colleagues thought that it was the bigger picture that had been overlooked e.g. whether he was receiving the correct medication, his seating and lying arrangements and his attendance at school.  Some practitioners felt that this was also an issue in other cases they worked on.  When the Child Protection Plan ended the social worker and the Community Paediatrician recommended that the plan continue but this was not the decision of the Chair of the Child Protection Conference. These were not however, raised as formal dissents.  9.6 At the second practitioners’ learning event there was a strong view expressed by practitioners in Children’s Social Care that Father’s cultural identity had not been considered sufficiently. They described him as a very private African-Caribbean man who may have struggled to work in partnership with some professionals. There was further supposition from practitioners that Father was able to relate more easily to black male professionals and a more positive outcome was achieved if this was the case.    9.7 In hindsight some practitioners felt that the hospital admission in January 2017 was indicative of a ‘late presentation’ and that this should have been subject to more in depth scrutiny and safeguarding procedures as possible neglect.  10 Lessons learned from the review 10.1 The review has highlighted the neglect of Child X’s various needs including his    health and education needs. The panel have concluded that the threshold for  neglect leading to robust intervention was too high in this case. The Board need  to be reassured that staff working with children with complex needs have a  sound knowledge and understanding of thresholds for intervention in cases  where neglect is suspected. 10.2 The review has highlighted the importance of a co-ordinated approach for  children with complex needs. This resonates with other Serious Case Reviews  both locally and nationally. The panel accepted that there is more work to do in  this area to make it more effective and as such is subject to a recommendation  for The Board to oversee.  10.3 The network in this case would have benefitted from a more unified approach to  working with a family they found hard to engage. The Board do provide training  in this area and it is important that professionals support each other to try and  keep the focus of the work on the child. A helpful chapter on this subject exists  within the London Child Protection Procedures and practitioners need to be  mindful to use these in future cases.    38 10.4 The report outlined that contingency planning for Child X, considering he had  such complex needs was poor and the lack of this may have contributed to the  delay in him accessing treatment on the night he died.  The difficult relationship  with Child X’s parents was a barrier but it is important that emergency  contingency planning is given attention and priority when working with families  where there are children with life limiting conditions. Involvement from the  Palliative Care Team was necessary here.  10.5 The family’s religion and assessment of the impact of this was not strong in this  case, which is surprising given the established importance of issues of diversity  in health and social care.  The reasons for this remain unclear and The Board  may want to satisfy itself that this is unique to this case and not a systemic, more  common omission in assessments and on-going work with families. Practitioners  have also questioned in retrospect whether there was a cultural dynamic, and  possibly a gender dynamic, in the way in which the parents, especially the father  behaved and that this may not have been fully considered in responding to him.  10.6 Advocacy and mediation for this family was absent, both for the parents and  Child X. Given the difficult relationship with the parents that professionals  experienced this option should have been considered as a way of moving the  relationship on. The author is mindful that this was raised as an issue in previous  Serious Case Review in Lewisham and has not yet been resolved.     10.7 There are lessons to learn for London Ambulance Service about what options  are available to them when faced with life threatening situations for children.  Police assistance in terms of Police Powers of Protection should always be  considered.  11 Recommendations  11.1 Lewisham Safeguarding Children Board should assure itself that the learning,  actions and recommendations arising from the Serious Case Review in relation to Child Z have been acted upon and are embedded in practice.  11.2 Lewisham Safeguarding Children Board should review its Neglect Strategy to  ensure that;   there is clear guidance on thresholds for intervention for children with complex needs  clear guidance for staff where parents are reluctant to engage, and    a clear escalation process where there are interagency disagreements about thresholds for intervention     39 11.3 Lewisham Safeguarding Children Board to implement a change in culture across  the partnership in relation to missed medical appointments for children. The  phrase ‘Did not Attend’ should be replaced with ‘Was not Brought’ to ensure that  the onus is on the parents to present the child at appointments.   11.4 To ensure care is co-ordinated Lewisham Safeguarding Children Board to  ensure that a system for identifying a Key Worker/Lead Professional for all  Children With Complex Needs is in place i.e. this should be the case for all  children not just those with an allocated social worker.  11.5 In line with the above recommendation the role of the Key Worker/Lead  Professional and MAPP (regarding care coordination) needs to be reviewed and  strengthened.  11.6 Lewisham Safeguarding Children Board should oversee a multi-agency audit  across agencies where professionals are concerned about the relationship with  families who have children with disabilities. The audit should first consider those  children with disabilities that are currently subject to a child protection plan. The  audit should further consider how routinely ‘Carers Assessments’ are carried out  with the parents of children with complex needs.  11.7 Families of children with life limiting conditions should have support in planning  end of life care including provision for care in emergency situations. This should  include the involvement of the palliative care team at an early stage.   11.8 Lewisham Safeguarding Children Board should be assured that advocacy  services should be available for disabled children, young people and their  parents. (This a repeat of the recommendation from Child Z and is green on the  action plan but the narrative is not reassuring that this is in place)   Recommendations for other agencies  11.9 The Lewisham Attendance Service should review School Attendance processes,  between Education, Special Education Needs Teams and Lewisham schools,  regarding staged intervention for children with complex needs and whose  attendance has reached the 'Persistent Absence' (below 90 per cent) trigger; to  ensure that there is timely support and escalation of attendance proceedings  where appropriate 11.10 The prescribing of ‘standby’ antibiotics in children with complex conditions,  should be reviewed by the CCG and guidelines developed to ensure usage is  appropriate and effective   11.11 All partner agencies should review their commissioned services so that work  completed with families on behalf of their services should be subject to the  same record retention policy operated by the relevant statutory body.    40 11.12 The London Ambulance Service to review guidance in relation to treating  children in an emergency, to include advice on and when and how police  assistance (in particular Police Powers of Protection) can be used to ensure the  welfare of patients. The guidance should be rolled out to London Ambulance  Service staff as part of their mandatory training.    Jane Doherty, Independent Social Work Consultant  June 2019   