Death of a 13-year-old boy from complications arising from his medical condition. Child Z complained of headaches in the days leading up to his death and instead of following a previously agreed pathway to go straight to the emergency department, his father, who is a GP, made a scheduled appointment at the hospital for a few days' time. On the way to this appointment, Child Z's condition worsened and he died later that day. Child Z was born with a disability that resulted in complex needs and restricted mobility. There was a history of disagreement between parents and professionals over Child Z's care and treatment including putting in place mobility adaptations. There were concerns about Child Z's lack of formal education, the adversarial stance of the parents and the mother's mental health. Issues identified include: the importance of a multi-agency approach and Child in Need status for children with disabilities; the neglect of children with complex needs; keeping the focus on the child whilst dealing with challenging parents; dealing with child protection concerns with professionals who are also colleagues; the need for decision making panels to have a safeguarding focus. Makes recommendations to: oversee an audit of cases of children with complex needs to ensure each child has a multi-agency plan in place; ensure all children with plans have regular reviews; identify the lead professional for children with complex needs; provide training for staff where parents present a challenge to engage; conduct a review of home educated children; provide appropriate support available for parents of disabled children to help them come to terms with their child's condition or disability.
      
    Serious Case Review No:  2018/C7068  Published by the NSPCC On behalf of an unnamed local safeguarding children board      This report was written by an independent author and is owned by the commissioning LSCB.  This report is published by the NSPCC with the agreement of the National Panel of Independent Experts.  Publication of this report by the NSPCC does not constitute endorsement of the contents. Copyright of this report remains with the commissioning LSCB.     Child Z SUMMARY OF FINDINGS FROM SERIOUS CASE REVIEW   Jane Doherty, Independent Social Work Consultant      2 1. Introduction   1.1. This Serious Case Review (SCR) was commissioned by a Local Safeguarding Children Board (LSCB) to examine the practice of the multi-agency network surrounding Child Z and his family. The circumstances leading to his death are as follows.   1.2. Child Z was born with a disability resulting in him having very complex health needs for which he required on going, lifelong treatment. His mobility was very restricted due to his condition.   1.3. Over the course of his life Child’s Z’s parents had many disagreements with the professionals involved with him including health professionals, education and the Local Authority. The difficulties agencies’ experienced in the relationship with his parents led to Child Z being made the subject of a Child Protection Plan (CPP), shortly before his death, as they believed that he was at risk of social isolation and medical neglect.      1.4. In the days leading up to his death Child Z had complained of headaches – a symptom that in the past had been connected with complications arising from his medical condition. Child Z’s parents however did not follow the recommended pathway by taking him straight to the Emergency Department (ED); instead his father (who is a GP) made a scheduled appointment for a few days time at the hospital responsible for his ongoing care. On his way to this appointment Child Z’s condition worsened and his father took him to the nearest ED.  1.5. On arrival at the hospital Child Z was already unconscious and despite the best efforts of the medical team he died later that day.  2. Arrangements for the Serious Case Review   2.1. After the death of Child Z, LSCB took the view that the criteria for an SCR had been met which are entirely consistent with the guidance in ‘Working Together’1 (WT) 2013. In this case the following criteria is met;   abuse of a child is either known or suspected and the child died; and   there are concerns about how organisations or professionals worked together to safeguard the child.                                                           1Working Together to Safeguard Children (Working Together) is the government’s overarching guidance on safeguarding. The guidance was revised in 2015 but in the period under review for Child Z the 2013 version would have been the relevant guidance.    3  2.2.  Working Together (2013) 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.  2.4. Arrangements were made to appoint the independent people who are required to contribute to the conduct of SCRs. An Independent Chair and Overview Author independent from the LSCB were appointed.   2.5. The LSCB appointed a Review Panel to manage and oversee the review and met a number of times. The panel members were made up of senior representatives from those agencies that had worked closely with the family. These agencies also provided information to the review in the form of a detailed chronology and reports. The panel also included a lay member who provided further independent scrutiny and challenge.   2.6. The LSCB held a series of SCR Panel meetings, chaired by the Independent Chair, where all the agencies and the overview author contributed to the process of gathering and analysing the material provided.    4 2.7. Consultation and learning events were held during the course of the review to enable those practitioners who worked with the family to contribute to the overall findings and lessons from the review.  3. Family Contribution  3.1. In line with expectations laid down in WT consideration was given to involving the family in the review process and family members were advised that the review was underway.  3.2. The child’s father (Mr B) was consulted as part of the review and his views are included. It was not however possible to consult with the child’s mother (Ms A) as the panel considered to have done so would cause her further unnecessary distress. This decision was taken after much deliberation by the panel and members of the LSCB, and following receipt of advice from the appropriate professionals.    4.  Summary of Professional involvement   4.1. The decision to publish only an anonymised summary was taken to prevent further distress to the family and extended family members. As such the following is a very brief account of agencies contact with the family and Child Z. This summary covers a period of ten years and is intended to be thematic rather than a chronological account of agency contacts.   4.2. Child Z was born with a disability that resulted in him having complex needs and meant his mobility was severely restricted.  Very early indications from professionals’ records available show that Child Z had positive family relationships and his parents seemed to be coping well with his additional needs. As his mobility was so restricted his parents were very hands on in terms of his personal care and throughout his life he needed assistance with everyday tasks such as washing, toileting and moving around his house.  4.3. Child Z was treated and assessed by many doctors and consultants who were responsible for various aspects of his ongoing care. In addition Child Z 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 LA.    5 4.4. Child Z would occasionally suffer from headaches and there is a history of these being caused by his complex medical condition. On at least one occasion he was hospitalised in order to have a medical procedure to relieve the cause of the headaches. This was a potentially life threatening situation and the agreed pathway was for him to be presented to an Emergency Department (ED) if such headaches persisted.    4.5. Records provided by professionals for the review indicate that Child Z’s parents struggled to accept his condition from a very early stage in his development.  4.6. In the history provided there are two episodes when professionals recognised that Ms A’s mental health seemed to be deteriorating and became acute. There are also other times particularly during health appointments regarding child Z where professionals questioned her mental stability and ability to be rational.   4.7. Throughout the review period the parents raised queries with health staff about the management of Child Z’s condition. The parents were concerned that not enough was being done about strengthening child Z’s muscles. This was an issue that the parents raised frequently throughout Child Z’s life.  4.8. In addition the parents’ disputed the consultant’s view that surgery would not help Child Z and his condition. The consultant and the physiotherapists working with the family considered that a more beneficial approach would be to concentrate on the stronger parts of Child Z’s body and help him to adjust to using adaptations. This would have the effect of making him as mobile as possible and increase his independence as he got older. Despite this advice, the parents were reluctant to give up specialist equipment that the health professionals considered Child Z did not need and could be harmful to him in the long run.  4.9. Children’s Social Care (CSC) identified the need for adaptations to the family’s property at an early stage but many of the recommendations did not come into fruition and caused a great amount of conflict between the family and professionals.           4.10. As Child Z got older an Occupational Therapist (OT) based within CSC assessed the family’s property and made several recommendations for improving access for Child Z. These adaptations did not progress.     6 4.11. In the meantime, Child Z had adjusted to using his own adaptations and had a number of sporting interests and hobbies that were good for him socially and physically. As he got older he grew in confidence and was able to articulate his thoughts and feelings with those who came into contact with him.  4.12. The issue of adaptations however, became a major source of contention between the LA and the parents. Child Z’s parents continued to provide him a significant amount of physical support (moving and handling) and this was becoming increasingly difficult, as he got older and heavier. Various assessments were carried out and the OT made some firm recommendations. The parents were not happy with these and suggested some alternatives. Their main concern was that any adaptations should not isolate Child Z from the rest of the family, as he was too young and his condition made him too vulnerable to be on his own at night. The parents’ suggestions were more expensive but they were prepared to contribute to the overall cost.  4.13. Agreement could not be reached and the case was closed to the department responsible without agreement on how the adaptations should be made. The parents made a complaint about the OT department that went through the 3 stages of complaint in line with the council’s policy. This eventually went to the Ombudsman to resolve and although he sided with the LA, he also said that both parties should work together in the interests of the child. 4.14. The parents continued to request adaptations (supported by various professionals) in the house to improve Child Z’s access within the home. They also requested respite care due to limited family support.  4.15. CSC stepped up their involvement with the family and an initial plan was created in relation to respite. Child Z was to receive some respite but not overnight which was their original request.  The family expressed a preference for direct payments for 4 hours respite per week.  4.16. The parents did not however comply with the regulations around direct payments e.g. they were slow in setting up a separate bank account and spent the money on equipment rather than care and this became a further bone of contention between the parents and the LA.      4.17. The parents persisted in raising the issue of Child Z’s medical care with many professionals they came into contact with. On each occasion they were advised about the most appropriate options but this issue continued to cause conflict between the parents and professionals.   7 4.18. In addition to this, when the time came to consider Child Z’s transfer to secondary school the parents did not agree with the options presented by the LA and entered into dispute with them resulting in a tribunal.  The parents had some suggested alternatives but these were not thought to be suitable. Child Z was withdrawn from school and educated at home for the academic year prior to his death. The tribunal found in the LA’s favour.     4.19. As Child Z became older he began to play a more active part in his health appointments and during many of these Child Z’s mother in particular was described as angry, emotional and aggressive. She was not accepting of the rationale for the advice being given about various aspects of Child Z’s health.  All professionals involved with the family were growing increasingly concerned at Child Z’s exposure to angry and confrontational appointments with the parents and expressed concerns about Ms A’s ability to remain calm and rational.  4.20. The situation was exacerbated by the number of disputes and complaints the family had lodged which are as follows:   A complaint under the Disability Discrimination Act (DDA) to the school as the parents claimed Child Z did not have the right specialist equipment when changing for PE,   the parents were in dispute with the LA about Child Z’s school place and had made a complaint that his Statement Educational Needs (SEN) was overdue,    a complaint to NHS England that Child Z was being denied a Continuing Care Assessment   a formal complaint had been sent to Patient Advice and Liaison Service (PALS) about his current physiotherapy package, and   Mother had lodged a disagreement with the social worker about the care package.   The issue of the adaptations to the house had still not progressed.    8 4.21 These concerns were mounting and professionals working with the family found it increasingly difficult to work together with the parents for Child Z’s benefit. Concerns were raised amongst professionals about:     The parents’ apparent disregard for medical advice   Child Z’s lack of formal education and the unsuitable choices of school his parents were pursuing  The dangers associated with the lack of adaptations in the family home   Parents’ lack of co-operation for hospital appointments   The adversarial stance the parents were now taking in making complaints rather than working with professionals for the benefit of Child Z.   Concerns about Mother’s poor mental health 4.22 As a result of the growing concerns a multi-agency meeting was held and s47  (child protection) enquiries were commenced. The parents were informed of the decision to commence child protection enquiries but were uncooperative with workers trying to conduct the assessment. Child Z and his sibling were seen but limited assessment took place. At the meeting they discussed the fact that Mr B was the safeguarding lead at his GP practice and was therefore known as a colleague. A referral was made to the Local Authority Designated Officer (LADO).  4.23 CSC received a written complaint from parents about the s47 enquiries and process.  4.24 A legal planning meeting was held, the outcome of which was that the threshold for proceedings was met. The parents were issued with a ‘Letter before Proceedings’ and at a meeting with their legal representation and the LA, agreed to co-operate with the s47 enquiries.  4.25 The s47 enquiries concluded and the parents were informed that the decision to progress to an Initial Child Protection Conference (ICPC) had been made. This was on the basis that the situation had not improved for Z during this time.  4.26 Child Z’s name was removed from the Elective Home Education   (EHE) list as the parents agreed they were not in a position to provide him with appropriate education.    9 4.27 Just prior to Child Z’s death an ICPC was held and a Child Protection Plan was made for him under the categories of neglect and emotional abuse. No plan was made in regards to Child Z’s sibling.  4.28 At a meeting soon after the ICPC the parents informed the social worker of their intention to move out of the area. They refused to sign the written agreement saying that they wanted to consider its contents first.  4.29 A few days after the ICPC the events surrounding this SCR unfolded and Child Z became unwell on his way to a hospital appointment to discuss his headaches. His father took him to the nearest ED. It was unfortunately too late to save his life and he died the following day.     5. Parental/family contribution  5.1. The author and the Independent Chair of the Panel met with Mr B in January 2017.  5.2. In general terms Mr B said that the partnership working didn’t work in this case. Child Z’s mother attended the majority of the appointments and he was not present during many of the difficult conversations that were taking place (though he was there at some).  He would have liked to have had more of a frank conversation with those professionals who were expressing concerns about safeguarding long before it got to the point of s47 enquiries.  He was however unaware of the seriousness of the situation and was then unable to retrieve it. That said he also felt that there were no grounds for s47 enquiries and that is why he had made the complaint to CSC. He disagreed with the need for a Child Protection Plan. 5.3. Mr B felt that his wife treated information she was given by professionals with suspicion and assumed that Child Z was not given particular things because of resource issues. As he was a GP he would try and explain things to her but she did extensive research into entitlements, benefits and rights and talked passionately about why she felt that Child Z should have certain things rather that what was on offer. She was very upset by the all the ‘battling’ with authorities and this is why he feels that she became mentally unwell just prior to Child Z’s death.  5.4. When talking about the many complaints made by the family in relation to various aspects of his son’s life, Mr B gave the following information.              10  Adaptations  5.5. Mr B acknowledged with hindsight that it would have been better to move sooner than they did. He felt that Child Z had adapted to his surroundings and therefore within the family this was not a major issue. As Child Z got older however he was more difficult to carry and through the lack of adaptations they realised as a family that they needed to move to enable him to move around the house more easily.  5.6. The disagreement over the adaptations went on for some time and Mr B said that there were times when they did not keep appointments but equally the LA were slow to respond to their requests. They ultimately made the complaint because they did not agree with the proposals. Apart from his medical needs at this time Child Z was afraid to sleep on his own and as they were prepared to contribute financially to their preferred proposals, they thought this would better meet Child Z’s needs.  5.7. The complaint went to the Ombudsman and although he sided with the LA his recommendation was that the LA should work with the family for Child Z’s benefit. They however did not do this and the matter did not progress any further. Mr B also stated that at the time they were offered an option that was more in line with what they had asked for. According to Mr B this offer was then withdrawn.         Choice of school  5.8. In relation to Child Z’s education Mr B said that they disagreed with the LA’s recommendation for the school that Child Z should attend. It was becoming more difficult for them to care for Child Z at home and they thought a residential school was a good solution. Their preferred school had a good teacher – pupil ratio and they were expecting a grant to be able to make adaptations.  5.9. Mr B did not believe that the school allocated was the best for his son. He also mentioned that the dispute over the school place and the resulting tribunal had made his wife ill and that is how she came to be so unwell around the time of the ICPC.    11 5.10.  Mr B said that his son was educated in the library every day and although it would have been better for him to be in school he did receive an education during that time. He also talked about the importance of the family’s community, their extended family and the church. In this respect because they have a lot of family and church events Child Z was not isolated in the way that professionals were expressing concern about. He had friends and other children within the family that he regularly mixed with.  His sporting activities stopped he believed as result of his wife distrusting those running the group as things were starting to be said that she did not like. This coincided with the other challenges to Child Z’s care and it all came to a head.         Medical treatments  5.11.  There were many disagreements over medical options for Child Z.  Again Mr B said that as his wife’s understanding of what was on offer and what could be done was different to his. His view about the medical interventions was that surgery was not necessary and would not benefit Child Z but he saw ‘no harm’ in the use of some of the other equipment provided.  6. Lessons   Importance of a Multi-agency approach and CIN status for children  with disabilities        6.1.   Child Z’s status as a Child in Need ostensibly due to his complex needs and then later as a safeguarding matter was never acknowledged by those working with him. This meant that there was no formal multi-agency plan in place, no Lead Professional and no regular TAC/TAF meetings to support the work with the family and promote partnership working. It is important that all children with complex needs have a plan commensurate with their assessed needs and that these are reviewed and evaluated on a regular basis. The LSCB will need to satisfy itself that this is the case.  6.2.   Various professionals assessed the family on a number of occasions but there is no evidence that any of these resulted in a clear package of care or clarity about what services Child Z was entitled to or should receive. In view of this when professionals had concerns about Child Z there was no natural forum in which to raise them. As a consequence there was no one professional with an overview of what was happening for Child Z.      12          Neglect of Children with complex needs  6.3.   Assessments of Child Z’s needs were haphazard and did not follow an established pattern e.g. his care needs were not reviewed annually and were often in response to requests for support for the family. These assessments concluded with recommendations that the family challenged and because of this often reached a further stalemate that led to them being ‘lost in the system’ and not resolved. The question of adaptations and respite care are significant examples of these.  6.4. The review highlighted the neglect of Children with disabilities and their various needs. This includes the important issue of the lack of adaptations that over time placed him at risk and should have been the subject of a multi-agency response much earlier in his life.  Children who are home educated   6.5.  Much has been written in SCRs about the needs of children who are home educated and how their education is often neglected. It can also have the effect of isolating the child from peers and from professionals. This was a very difficult situation as Child Z was home educated with a statement that (because of his complex needs) could not be fulfilled by his parents. Little negotiation happened between the LA and the parents to try and advance Child Z’s educational needs.  The LA found themselves in a situation where they could not legally fulfil the obligations of his statement but were unable to insist on monitoring the work provided.   6.6.   To this end it would have been helpful for the LA to take a more authoritarian stance and challenge the parents’ ability to educate Child Z to the letter of his statement given the lack of resources they had to offer. His lack of education ultimately became one of the reasons for the initiation of the CP processes but it was not resolved while he was still alive       Keeping a focus on the child whilst dealing with challenging parents    13 6.7.  There is a lack of documented evidence of recorded views expressed by Child Z and limited evidence of systems and processes to support practitioners in keeping the child in focus. For example reflective supervision is crucial when addressing safeguarding issues. Practitioners received little support about their unease and tensions in dealing with the family and were not challenged to keep child Z at the centre of their work. Being in the thick of it, practitioners were unable to see how the parents were influencing their practice. The lack of a coherent multi-agency plan was another missing link.   6.8. The role of the manager is to provide an opportunity for reflective thinking and to challenge the worker to consider whether assessment processes have been sufficiently broad and robust. This is a challenge faced by health, social care and other professionals working in the field of safeguarding. Supervision in this case was not robust in any agency and did not assist workers in either dealing with challenging parents or helping to keep the worker child focused while facing these issues. A wide range of professionals were involved and the LSCB may want to consider alternative supervision models to aid practitioners who work in this field.   6.9. Child Z was described by those who knew him as a lively child, who was mischievous and full of character. He had a great sense of fun and those around him found him to be engaging and intelligent. He rarely complained about his lot and his family life was observed to be warm and loving. He had a good relationship with his all members of his family.  6.10. What has been gleaned from information gathered throughout the review that he had done very well in his primary school education and was looking forward to a transition to secondary school. He was able to communicate well so it is surprising that there is little documented about his views.  Where they have been recorded they added weight to a complex situation. In some information provided he is said to have led some discussions about his medical needs and what he felt would be best for him. This is however recorded all too infrequently but more importantly his lived experience was not understood by professionals    Dealing with child protection concerns with professionals who are also colleagues  6.11. Both parents were professionals and there was consideration in the review of whether their status influenced how practitioners dealt with them. While there is no evidence of this in respect of Ms A, Mr B is a GP who was working in the borough and was the safeguarding lead in his practice.    14 6.12. Mr B was regarded as a colleague by many of the professionals dealing with the family.  Advice was given in circumstances that was in danger of being compromised by those giving it. Furthermore the advice given did not result in moving the situation forward. These situations need to be dealt with very sensitively and a lesson from this review has been that health staff in particular were unaware of the need to seek more independent advice when the Child Protection concerns arose.       The need for business processes and decision making panels to     have a safeguarding focus.  6.13. The issue of adaptations for the family home was a major bone of contention for this family and was a necessity in terms of basic human rights for Child Z. To be able to achieve his potential and develop independently Child Z needed to be able to move about freely in his own home.  The business process and the panels dealing with the administration of these failed to take into account the child at the centre of the wrangling between the LA and the parents. The LSCB needs to assure itself that this situation could not be repeated. 7. Recommendations 1. The LSCB to oversee an audit of cases for children with complex needs to ensure that each child has a multi-agency plan in place commensurate to their assessed need e.g. CP, CIN, CLA, EH or EHC.  2. In line with the above recommendation the LSCB to ensure that all children with plans in the categories above have regular evaluation and review of their plans in line with statutory expectations. 3. LSCB to ensure that a system for identifying Lead Professionals for children with complex needs is in place.  4. The LSCB’s training programme to include (or review if it already does so) training for staff on dealing with situations where parents present a challenge to engage. This to also include how professionals challenge each other and how to escalate concerns when necessary.  5. The Head of Targeted Services and Joint Commissioning to give assurances to the LSCB that all panels and decision making forums;  Have an audit trail and minutes of how decisions regarding specialist equipment and/or adaptations are made  In cases where adaptations are not made or equipment is not provided, a record of how this may affect the child is available including any safeguarding concerns that may arise because of it   15  Minutes of panels demonstrate that safeguarding concerns have been considered and mitigated against if necessary   Are transparent about what the appeal process is for parents and how the LA will work with the parents in the best interests of the child and reach a satisfactory conclusion before closing the case.   6. The LSCB to conduct a review of all children who are home educated who also have a SEN or EHC plan to ensure that the obligations with the plan are being fulfilled. The Protocol for EHE and the annual report on EHE to be presented to the LSCB Main Board.  7. The LSCB to reassure itself that practitioners and managers are aware of when to refer to the LADO.  8. In line with the above the LSCB needs to add to its existing LADO guidance where practitioners should seek support when there are safeguarding concerns about their colleagues including when they are subject to CP procedures 9. In line with the above, for the LSCB to receive assurances from the SEN team that each child who is EHE and who has a Statement of SEN or an EHCP is reviewed on at least an annual basis with colleagues from across the multi-agency network. 10. As part of the Section 11 audit programme the LSCB to ensure that the Disability Service has appropriate supervision for its practitioners including consideration of alternative models of supervision i.e. group supervision for those staff working in multi-agency teams.  11. The LSCB to assure itself that there is appropriate support available to parents of disabled children to help them come to terms with their child’s condition or disability.   Advocacy should also be available for children and young people.  12. The LSCB to review its training programme to ensure that practitioners have access to cultural competence training. This to provide practitioners with an understanding of the differing meanings of disability across different cultures and communities and how these are assessed in the best interests of the child.   Jane Doherty Independent Social Work Consultant  January 2018          16              Appendix 1  Explanation of health roles involved with the family and Child Z   7.1. As there were so many health professionals involved in the care of Child Z the differing roles and responsibilities are outlined here for ease of reference for the reader. During his lifetime Child Z saw several different specialists who had expertise in different areas.  7.2. In Community Paediatrics Child Z had a named consultant who was the lead clinician ensuring that he was receiving all appropriate health, education and social care services that he needed and also monitored his development.   There were several (at least five) consultants that held this post and saw Child Z.   7.3. At Hospital 1 Child Z saw a neurosurgeon who provided necessary surgical intervention when he was very young and monitored him throughout his life. Two other doctors monitored other aspects of his condition.  7.4. The two doctors treating Child Z at Hospital 2 were both neurologists. They were involved in running the multidisciplinary clinic and had an overview of his medical condition. In addition they made sure he saw all the specialists he needed to. Another doctor saw Child Z to oversee other symptoms caused by his condition.  7.5. Child Z also saw 3 different orthopaedic consultants    17 7.6. Supporting the medical teams Child Z 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 LA. Whilst the consultant paediatrician acted as the Lead Professional (LP) for health there was no such equivalent role allocated to those professionals working in other agencies.  