Death of an 11-year-old child with complex medical needs requiring a high level of input from a variety of practitioners and putting a high level of demand on those caring for the child, making it difficult to define the threshold for neglect. Alex was the eldest of four children, diagnosed with cystic fibrosis (CF) at a year old. The parents separated when Alex was 5; there was evidence that the mother had been subjected to domestic abuse, coercion and control which continued with another partner who became Alex's stepfather. The stepfather had considerable influence in decision making and gave the impression of having parental responsibility. Alex's health deteriorated from age 6 and hospital admissions increased due to CF; clinical staff were concerned about carers' capability to deliver the care needed. Lessons learned: the importance of the child's wishes and feelings to influence his/her care; practitioners had varying levels of knowledge in relation to the child's clinical needs; the cumulative nature and clinical implications of his illness were not fully understood by those working with the child; the formal escalation procedure in place at the time was not used. Recommendations include: the importance of ensuring that children's views are listened to, heard and acted upon; the LSCB should raise awareness of the importance of supervision; the need for formal processes and procedures to be in place to share information about children who meet the LSCB threshold level 3 criteria; decision making in practice should include the history of the family dating back at least one year.
      
    Serious Case Review No:  2017/C6864  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.    Page 1 of 47       Anonymous LOCAL SAFEGUARDING CHILDREN BOARD  SERIOUS CASE REVIEW 3  OVERVIEW REPORT  In respect of the death of Alex  DOD: 13/07/2014                   Page 2 of 47   Serious Case Review SCR3: EXECUTIVE SUMMARY Introduction: This is a summary of learning from a serious case review carried out by the LSCB. It has been produced to ensure learning is disseminated widely to practitioners working with children and their families. The full overview report, including terms of reference, panel membership and analysis, is available to practitioners by request to their LSCB representative. A summary of learning and recommendations are provided using the key lines of enquiry used by the review. The overview report established key lines of enquiry (KLOE) in relation to the sad death of a child with a life limiting condition. The review found that when a child has complex medical needs requiring a high level of input from a variety of practitioners, and a high level of demand made on those caring for the child, it can be difficult to define the threshold for neglect. This summary highlights the relevant key learning points for practitioners, managers and leaders to take forward. Individual management reviews carried out by partner agencies produced recommendations and these are being implemented within these agencies. Progress made will be monitored by the LSCB. A multi-agency LSCB action plan has also been created to monitor recommendations and has been included in the LSCB improvement plan. It is monitored by the LSCB executive group. KLOE 1: Was the child spoken to alone, listened to, and heard and did the child’s voice influence care planning? Learning:  The child’s wishes and feelings are important and should influence his/her care but adults have the responsibility to ensure that the care given is optimised and not compromised by the child’s views. A child expresses their views through language other than verbal, including behaviours and drawings. These should be acted on. Recommendation: All safeguarding training, including LSCB and single agency should include the importance of ensuring that children’s views, however expressed, are listened to, heard and acted upon.   Page 3 of 47   KLOE (2): Was the clinical care pathway appropriately communicated to and clearly understood and applied by the parents and carers and professionals who worked with the family? The review addressed this question by addressing the following areas; KLOE 2 (a): Were all the professionals working with the family aware of the child’s clinical needs and the risks posed by any deficits in the provision of care to meet those needs? Learning:  The review found varying levels of knowledge by practitioners in relation to the child’s clinical needs and there is a need to raise awareness about the National Framework for Children and Young People’s Continuing Care programme to ensure local understanding of how it can apply to children with complex medical needs. There is also a need for all partners to be clear about the provisions of the Children and Families Act 2014.  There is a need for formal processes for practitioners to follow where there are concerns about neglect. Multi-agency plans should provide information about the risks of non-compliance; both immediate and long term, including the impact and agreed action if the pattern of non-compliance continues. Recommendation: The health and wellbeing board should ensure that all agencies are aware of continuing care specialist commissioning and the local arrangements for assessment and delivery. LSCB training should include safeguarding children with disabilities, including those with complex needs. KLOE 2 (b): Were professionals provided with information, guidance and/or training to help meet the child’s changing needs?  Learning The review found that practitioners need help to understand what care everyone is providing and why, when a child has a complex condition. They also need to understand life expectancy in relation to the condition. This helps them understand their contribution to overall care and so they will be able to identify any gaps in care. Specialist voluntary organisations dedicated to inform and support those affected by specific conditions, including carers, and practitioners working with them can be an excellent resource for information.  Page 4 of 47  KLOE 2 (c): Did the additional demands of the siblings provide additional challenge in the support provided? Learning:   The review found that practitioners were supporting carers who had extraordinary demands made upon them which were at times overwhelming. This can make decisions about thresholds for neglect difficult to see clearly.  The review found that practitioners worked with determination and provided extraordinary effort to support the family and thinking the unthinkable in these circumstances is very challenging. Sound supervision and support should enable practitioners to work these issues through. Using case learning meetings as described in the LSCB procedures would help practitioners explore these issues together in a safe environment. Recommendation; The LSCB should raise awareness, and members should support and promote in their own agencies, the importance of: • Case learning meetings as described in the LSCB child protection procedures • Supervision, as an instrument to express concerns, accept challenge and explore options. KLOE 2 (d): Were deviations from care pathways recognised? Learning The review found that while deviations were recognised, their cumulative nature and clinical implications were not fully understood by all those working with the child.  A pattern of neglect and non-compliance resulted in sub-optimal care. Compliance was inconsistent and improved when there were mounting child protection concerns. The improvements were temporary and were not sustained. The prevailing view of social care that this family was in need of support and not child protection procedures was not informed by the serious implications of non-compliance with the child’s treatment regime and should have been. KLOE 3: Were all incidents of domestic violence known to all professionals working with the family? And were those incidents responded to appropriately?  Learning:  The tensions between the adults resulted in domestic violence incidents and unsubstantiated allegations made by carers in relation to the care of the children. There is a need to ensure that when a referral is made in such a climate, attention should be paid to reflecting on the frequency and number of such allegations occurring over time to establish what it might be like for a child living with these issues and essentially work  Page 5 of 47  out whether these behaviours are negatively impacting on the child’s welfare because of their repeated nature and what they might be telling us about carers’ ability to prioritise their child’s needs.  Recommendation: Children who meet the LSCB threshold level 3 criteria where there are concerns about neglect should have formal processes and procedures to share information. This should be achieved through partner consensus and formally approved by the LSCB policy and procedures sub-group and promoted by all members of the LSCB in their own agencies. In order to deliver this, each partner agency needs to be explicit about their offer to children where there are concerns about neglect and partners need to work together to design a formal solution to collaborate under Section 11 of the Children Act 2004 and Section 27 of the Children Act 1989 signing up to assessment processes, procedures and meetings to ensure effective collaboration. KLOE (4): Were there missed opportunities? The review addressed this question by addressing the following areas; KLOE 4 (a): Upon reflection of the evidence, were there gaps in information sharing, which, if identified and managed at the time, might have improved outcomes for the child? Learning:  The review suggests that practitioners need to be supported to enable them to understand and ask questions about the meetings they attend. They need to establish what procedures a meeting is delivering and make sure they are clear about the status, who chairs, takes minutes and who will deliver on each of the actions agreed. Practitioners should always take comprehensive records of their understanding of the commitments they made at the meeting.  Recommendation:  The LSCB should provide specific communications to clarify the importance of understanding the structures provided to share information and the importance of consistent language, terminology and record keeping. KLOE (b): Were the LSCB’s Threshold procedures understood and applied? Learning:  The review refers to a shift in presenting features over time as the family worked with multiple practitioners and the condition progressed making evaluation and judgement about threshold difficult.  The threshold document was understood but applying it was challenging in these circumstances. The carers’ compliance also varied. The review suggests that patterns might best be seen if a retrospective view is taken over time.  Page 6 of 47  Reviewing a case over the last year helps make sound professional judgements. Judgements should not be made based only on recent events.  Recommendation: Decision making in practice should include the history of the family, using chronologies and dating back at least one year in order to determine if recent change is sustained. KLOE (c): If there were professional disagreements about the case, was the escalation procedure used? Learning:  The review found that the formal escalation procedure in place at the time was not used. The language used and narrative around professional challenge and disagreement was unclear. “Escalation” should be a term used to describe the raising of concerns through the management hierarchy and not to describe the view that the status of a case should change from child in need to child protection. Practitioners appear resistant to using the available processes that might help them when they feel their concerns are not being heard. The review refers to a suggestion that they may not always get the support from managers that they need in order to use these processes. Recommendation: The new LSCB dispute resolution procedure should be actively promoted and supported by leaders and managers in partner agencies and a new language used to ensure professionals are supported and confident to challenge skilfully. Case learning meetings should be promoted to enable practitioners to explore their concerns together and come up with viable solutions. Monitoring impact: LSCB partners accepted the serious case review overview report and are actively engaged in making systems improvements against the learning. The LSCB action plan is monitored by the LSCB executive group.        Page 7 of 47  INTRODUCTION  This serious case review is about a child (Alex) who sadly died at the age of 11 years. The child had cystic fibrosis. Medical colleagues advise us that Alex had a common form of the disease, but complications set in early.  All child deaths are a tragedy and so the LSCB has a responsibility to review every death. This is done at the child death overview panel. When information about Alex was presented to the panel, they asked the LSCB Chair to consider a serious case review because they considered that neglect was a contributory factor in the death. The LSCB chair and partners agreed that a serious case review should be done to find out if we can improve how we work together to provide the best care for children like Alex and the right support for their parents and siblings. The LSCB Chair considered that the Designated Nurse for Safeguarding would be suitably qualified to chair the serious case review panel and write this overview report. Independent scrutiny of the LSCB was provided through the appointment of a Professor in Child Protection, based at a local university and a small editorial group, including the LSCB Chair, LSCB Business Manager, the Professor in Child Protection and author worked on final editorial drafts. What is serious case review? Local Safeguarding Children Boards are required to carry out serious case reviews where;  (a) Abuse or neglect of a child is known or suspected; and  (b) Either- (i) the child has died; or (ii) the child has been seriously harmed and there is cause for concern as to the way in which the Local Authority, the Board partners or other relevant persons have worked together to safeguard the child.  The purpose of the SCR is to: • Establish what lessons are to be learned from the case about the way in which local professionals and organisations work individually and together to safeguard and promote the welfare of children • Clearly identify what those lessons are both within and between agencies, how they will be acted upon and why they occurred • Improve multi-agency working by ensuring lessons learned impact positively on practice because we understand the root cause of the problems • A SCR is not a disciplinary enquiry or a criminal investigation although these elements can run concurrently • A SCR does not establish the cause of death, nor does it make a judgement about whether the child’s lifespan was shortened by any deficit in care. This is not the role of serious case review. Instead it will focus on ensuring we continue to improve how we work together to care for children and their families living with complex needs. (Working together to Safeguard Children, HM Government, 2015)  Page 8 of 47   Editorial issues  As the family’s circumstances are so rare, there is a risk that they can be identified if the geographical references were included. For this reason, the LSCB has not included geographical references or the gender of the children in this review report in an effort to safeguard them from any unnecessary intrusion and to protect their privacy. The LSCB has published this report on the NSPCC repository so that all LSCB’s can learn from this review. The key lines of enquiry of this review are: KLOE (1). Was Alex spoken to alone, listened to, and heard and did the child’s voice influence care planning?   KLOE (2). Was the clinical care pathway appropriately communicated to and clearly understood and applied by the parents and carers and professionals who worked with the family? • Were all professionals working with the family aware of Alex’s care and the risks of any deficit in that care? • Were professionals provided with information, guidance and/or training to help meet Alex’s changing needs?  • Was the additional challenge of supporting a sibling, who also had cystic fibrosis, a factor in the support provided to Alex’s parents? • Where deviations from the clinical care pathway recognised, is there evidence that partners worked together, and shared information in order to correct and/or minimise the impact of the deviation? KLOE (3). Were all incidents of domestic violence known to all professionals working with Alex’s family? And were those incidents responded to appropriately? • Were practitioners sensitive to the needs of children living in an environment where domestic abuse is a feature of family life? KLOE (4). Were there missed opportunities? • Upon reflection of the evidence, are there gaps in information sharing, which, if identified and managed at the time, might have improved outcomes for Alex? • Did professionals share information effectively? • Were LSCB’s Threshold procedures understood and applied? • If there were professional disagreements about the case, was the escalation procedures used?    Page 9 of 47  Methodology: Efforts were made to engage Alex’s parents and stepfather in the review. The child’s natural father and stepfather declined. Alex’s mother initially agreed, but was unable to take part due to family demands. The review is therefore limited as it does not include their perspectives. However, the panel chair consulted with the Cystic Fibrosis Foundation Trust who has been very helpful in providing insight into the day to day experiences of families living with this condition. The review gathered information from a range of sources and included the views of practitioners who worked with Alex. Two events provided practitioners with opportunities to share their perspective and experience of working with Alex, and brought to life the evidence gathered, providing helpful insight into how things were for them and their views on how we can make improvements. Eight serious case review panel meetings considered the information, informing the analysis in this report. Each member of the panel representing the organisations who provided services to Alex carried out individual management reviews and chronologies.  • The local Women’s and children’s NHS Foundation Trust  • The local Children’s Hospital • The local NHS provider Foundation Trust • Local Police • The local Clinical Commissioning Group on behalf of NHS England who commission primary care services (GP Practices)  • The local mental health foundation trust  • The local authority Children’s Social Work Services (CSWS) • The children’s school contribution was provided by the local Education Improvement Service  • Information reports were also provided by a local housing provider  Further discussion and correspondence was received between the Chair & Author and these include: • The Head of Safeguarding, NHS England. • The Department of Health Section Head – Disabled and Ill Child Services Team, Maternity and Children’s Health, Social Care, Local Government and Care Partnership Directorate who is also the children continuing care lead. • The Chief Nurse and Deputy Chief Nurse for the local Clinical Commissioning Group. • The Chief Nurse and Continuing Health Care Children and Young People’s Nurse Specialist for NHS Commissioning Support Unit  • The local Children’s Hospital NHS Foundation Trust in respect of the Regional Cystic Fibrosis Commissioning arrangements.    Chronologies were then merged to show one continuous chain of events. A literature search reviewed the available clinical evidence.  Page 10 of 47  This overview report provides an account of the key lines of enquiry by bringing together this information, and analysing it, producing key learning points as conclusions and making recommendations.  SCOPE The review will focus only on the key lines of enquiry above. The review covers the period from 13th July 2009 until 3rd October 2014.  Chair The SCR Panel Chair was the Head of Safeguarding/Designated Nurse - Safeguarding Children and Adults for the local NHS Clinical Commissioning Group.  Timeframe The SCR processes began in May 2015 and the report was approved by the LSCB in May 2017. Limitations of the review • The parents and stepfather have not engaged in this review for reasons outlined above.   • Due to numerous organisational changes in the GP practice setting, there has been no ability to interview employees or partners in the practice as part of this review process to understand the episodes of care delivered during that time.   About Alex:   Alex was a White British child born in May 2003 and Jessica’s first baby. Alex was a lively child and enjoyed playing in the school playground whenever possible and loved  Page 11 of 47  playing with siblings. His Art and the popular children’s iconic characters “Minions” were also a favourite. Alex had a dream to take Mum to Paris one day. Alex wanted to be involved and engaged in all aspects of the care provided and was not happy when not allowed to be involved. Alex was diagnosed with Cystic Fibrosis (CF) at the aged of one year. By the time Alex started school in September 2007, there were 3 siblings, Sam, Bobbie and Stevie. Bobbie had the same condition as Alex.  It appears that Jessica and Alex’s natural father, Martin, separated acrimoniously between October and November 2008. Jessica and the four children left the family home and moved into a flat within the same area. There is evidence to suggest domestic abuse and the natural father’s alcohol problems may have been a factor in this separation. Throughout the period for review, evidence also suggests that Jessica was a victim of domestic abuse, coercion and control. Jessica then found accommodation in August 2009 under the choice based housing scheme with the local housing provider.  During 2009, Jessica developed a relationship with Alex’s stepfather, Aiden. This review could not establish when he first became involved.  Alex’s surname changed to Aiden’s as Martin did not have parental responsibility. Aiden became a key figure in Alex’s care and had considerable influence in decision making, engaging with staff in hospital and schools settings and providing the impression of a parent with parental responsibility for the children. The evidence in this review suggests that Jessica’s decision making is likely to have been adversely affected by him. There was contact with Martin, who lived with his mother, Alex’s paternal grandmother, arranged through the courts. Alex’s health condition began to deteriorate in 2012 when complications associated with cystic fibrosis increased hospital admissions.  Living with cystic fibrosis In order to understand the issues affecting this family, it is important to understand their day to day experience. Cystic fibrosis is a multi-system, progressive, debilitating and life-limiting disease that necessitates a heavy burden of care which progressively increases as the child’s health deteriorates. A summary of the day to day demands are provided below;  Physiotherapy: Most children need at least two sessions of physiotherapy each day and more if unwell. In some cases, depending on the level of exercise, time spent on physiotherapy may amount to several hours a day. Parents/carers are taught how to do this at home. Sometimes other people working with the family can be trained to do this as well. Medication: A child may need to take dozens of tablets every day and can be very reluctant to comply with this. Some medication has to be taken with each meal. Time and effort is needed by carers to persuade the child to take the medication. A nebuliser is used to dispense some medication and this can take up to 30 minutes to deliver.   Page 12 of 47  Eating and maintaining nutritional status: The condition results in food not being absorbed very well. The child burns more energy at rest and when breathing. The child therefore needs more calories in order to achieve a good nutritional status. They often have poor appetites. Supplements are often given via a tube that is either placed through the nose into the stomach (nasogastric feeding) or directly into the stomach (gastrostomy feeding).  Diabetes: Some, but not all children with cystic fibrosis will develop diabetes. This requires a strict daily feeding routine and insulin injections in order to prevent the blood sugar from swinging from high to low, either extreme can result in coma. This needs careful attention throughout the day. Travelling to and from appointments: This takes time, careful planning to fit in with the medical, physiotherapy and diabetes management routine. It also incurs expense. Focus on the ill child: It is very challenging for parents to provide the attention needed by siblings as they have to focus on the complex needs of the ill child. In this case, parents and step father were caring for four children, two with cystic fibrosis, and one with behavioural problems. Depression and anxiety are common features associated with complex medical conditions as arising from the emotional pressure on families. Vascuport:  This is an implanted venous access device. It ensures reliable vascular access in patients that require regular drug administration, and/or those with poor venous access who need regular treatment. Nebuliser:  A nebuliser is a device that helps the child to take their medication. It changes liquid medicine into a fine mist. The child breathes in the mist through a mouthpiece or a mask.  Alex’s mother had two children with Cystic Fibrosis. Alex was diagnosed with cystic fibrosis as a one year old and was doing well until aged 6 years. Sadly there were many complications. The above indicates a heavy burden of care. Carers need considerable energy and sustained effort and a very carefully worked out plan of support from professionals as well as a regimented routine which is demanding on the child and the carers. As an indicator of the level of input required, there was over 800 contacts recorded on the Local Children’s Hospital IT system for Alex, ranging from 19/03/2010 until 11/07/2014. In total he had fourteen admissions to that hospital, eleven of which were planned and three were emergency admissions via the Emergency Department.   Professionals involved include Physiotherapists, Psychologists, Respiratory Medicine clinicians, Endocrinologists, Dieticians, Diabetic Nurses, Specialist Play and Youth Services workers and Cystic Fibrosis Nurses.  Some of these contacts are care planning, assessment and treatment whilst some are for parental advice and visits to the ward whilst he was in hospital. There were also numerous contacts with the GP  Page 13 of 47  (largely in relation to repeat prescriptions); Social workers and the children received their statutory education in a local school. Care arrangements for children with Cystic Fibrosis Local NHS provider Foundation Trust IMR describes this as follows: “Shared care arrangements are put in place for the treatment of CF patients as no one professional or agency can manage all the care. The local Childrens Hospital was the central lead organisation and the local NHS Foundation Trust was the local care provider. Standards for the Clinical Care of Cystic Fibrosis in Children and Adults are described by the Cystic Fibrosis trust (2011) consensus documents and are very clear that: ‘All patients with CF must have their care delivered under the direct supervision of a recognised Specialist CF Centre for treatment throughout their lives’. Local providers will have the majority of contact with families but can draw on the expertise of the specialist provider that will oversee care and provide a minimum number of contacts each year (twice per year). Standards for the Clinical Care of Cystic Fibrosis in Children and Adults (2011) state that: ‘If under the care of a Network CF Clinic, patients must be seen at the Specialist Centre for annual review (unless the Network CF Clinic can provide all recommended clinical reviews and investigations, in which case it may be done jointly by both teams in the local centre). Patients must be seen at least twice a year (including annual review) by the full Specialist Centre multidisciplinary team (MDT), which may take place at either the Network or Specialist hospital. It may be appropriate for the patient to be seen more often at the Specialist Centre, depending on the level of expertise at the Network CF Clinic, and the severity of their disease. Shared care must be delivered as part of an agreed designated Network with a Service Level Agreement and Standard Operating Procedures as laid down by the Specialist CF Centre’. Alex’s clinical care was led by the local Children’s Hospital working with the local foundation trust Hospital and there were a number of clinical specialists who visited at home and at school to work with school staff and the parents and stepfather to provide care. In the child’s last year, the school provided some elements of clinical care, including physiotherapy and diabetic care in school. The local foundation trust IMR also points out:  Page 14 of 47  “For all children these mainstays of CF management are heavily dependent on the full cooperation and organisation of their caregivers and to a large degree their parenting style and ability to help children overcome objections and contain their negative emotions”. Alex also had other complications – Alex was colonised with some forms of bacteria which were difficult to treat and a fungus (“ABPA”) which has a severe impact on lung function; Alex developed CF liver disease and CF related diabetes which required additional blood tests and injections. Alex had allergic reactions to two drugs which limited treatment options. Reduced oxygen in the blood with CF leads to a characteristic rounding and enlargement of the nail bed in the fingers and toes, called ‘clubbing’. Those with the disease may also develop a barrel-shaped, hyper-expanded chest as a result of their increased work to breathe. Both of these characteristics were noted during Alex’s examinations.” There is now a general Shared Agreement 2014-15 (updated in May 2015) between the Designated Cystic Fibrosis Centre at the local Children’s Hospital and other NHS providers providing shared care arrangements with Paediatric Cystic Fibrosis across the region but this was not put into place until 2014, the year Alex died. Prior to this it appears formal arrangements were not in place and therefore not fully compliant with the Cystic Fibrosis Trust standards (2011). What happened to Alex? 2009 (“Child in need 03/12/2008-20/10/2009” CSWS IMR) Alex was diagnosed with cystic fibrosis at the age of one year and was well until aged six years, when respiratory problems began to require interventions. This also involved increasing attendance at outpatient and, later on, frequent in patient stays at the local foundation trust and Children’s Hospitals. From that point on, there was increasing involvement by partner agencies and increasing concerns about the overall quality of the care given by Jessica and Aiden.  In 2009 clinical staff became concerned about carers’ capability to deliver the care needed. There was a general lack of engagement and alertness to the child’s needs. During one admission Alex was brought in very late, after midnight, for treatment. The Paediatrician was concerned about lack of weight gain and a failure by Jessica and stepfather to prioritise and deliver the care needed. During this time the stepfather, Aiden, assumed an influential role, and was consulted about Alex’s care in hospital almost on equal terms to Jessica. He did not have parental responsibility.  At home, there were episodes of domestic abuse during this time which involved harassment by Alex’s natural father, Martin, resulting in a restraining order. There was  Page 15 of 47  regular conflict in the home. Evidence suggests that physical violence and verbal abuse was a manifestation of coercion and control.  Concerns began to escalate around this time as follows; Alex’s natural father phoned the hospital ward on 9th September asking for the Mother’s new address which was refused.  The local NHS provider Foundation Trust IMR notes that on 6th August 2009, there was a domestic abuse incident and the police IMR noted “poor home conditions”.  In September, the school nurse contacted the respiratory nurse to express concern that Jessica had submitted a holiday request form to the school. She was worried that Alex was very poorly, life limited and was currently hospitalised, receiving intra-venous therapy. The respiratory nurse provided some reassurance suggesting that Alex was “very much a well cystic fibrosis sufferer”. The school nurse also shared her concerns with social care. Children’s Social Work Services, as yet unaware of the concerns of the clinicians in the hospital, focussed on support that could be offered to the family and Alex was a Child in Need from 03/12/2008 – 20/10/2009. Alex’s mother was experiencing domestic abuse and harassment from her ex-partner. The local NHS provider Foundation Trust IMR notes that on  3rd September 2009,  the school nurse records illustrate that there was information shared from MARAC (Multi-Agency Risk Assessment Conference) indicating police call outs to the family on: 06/07/09, 12/07/09 (two separate call-outs), and 05/08/09. (This was looked into and it was not from MARAC it was from the existing Domestic Abuse triage arrangements in place at the time.) Children’s Social Work Services provided financial support and also supported day care for Bobbie and Stevie. The Childrens Social Work Services IMR refers to a lack of clarity from the records as to whether the Triage process placed these incidents in the context of the previous recent domestic abuse incidents. It also refers to a lack of reference in the records about whether a child protection investigation had been considered for one particular incident in July 2009 which was scaled by the Domestic Violence (DV) triage as at level four of the LSCB threshold guidance. Assumptions were made at this point that the mother was able to safeguard the children. This was based on the fact that she reported all incidents to the police and knew she could take legal action if necessary. This thinking does not take into account the multi-dimensional nature of the family’s life, including the new stepfather’s impact on the children and mother’s general lack of attention to Alex’s complex needs seen by clinicians in the hospital but not yet shared with the social worker. The Children’s Social Work Services IMR also suggests that the repeated nature of the DA incidents was not considered. A pattern of non-co-operation, domestic abuse and neglect is seen here and there is also an emerging pattern of concern about Alex’s medical needs. There  Page 16 of 47  is very little emphasis on Jessica as a victim of domestic violence, coercion and control and how this was impacting on her parenting. This pattern continues throughout this review. 2010 (“Case closed to Alex, but open children in need re siblings 20/10/2009-01/10/2010, case closed, then 29/11/2010-02/03/2011, Initial assessment, Core assessment and S37 report”-CSWS IMR) The local NHS provider Foundation Trust IMR indicates that, in January 2010, the Paediatric Respiratory Nurse informed the school nurse that Alex’s mother had said that the school did not understand Alex’s condition and that she felt harassed by them (the school). Arrangements were made for both nurses to jointly visit the school to provide education to support staff in that setting with meeting Alex’s health needs.  Alex’s mother moved twice in 2009 and 2010 and did not want the children’s natural father to know of the new address. Alex attended the ward for a routine follow up on 9th February 2010 and the hospital staff found that the mother had run out of steroids three days previously.  Mother approached Children’s Social Work Services for help with the siblings while Alex had a planned hospital admission in March 2010. Help was provided in the form of support for funding for nursery placements, but there was no contact made between the social worker and the clinicians. The Childrens Social Work Services IMR highlights that such contact with clinicians would have been good practice.  During this admission, Alex’s mother and stepfather indicated that three monthly admissions would be a struggle for them. They took Alex to the ward at 11pm and became demanding as the treatment took some time to set up. The paediatrician explained to them about the importance of sleep, structure for the day, the need to get to the ward in good time to ensure Alex gets treatment on time and the need for attention to detail about prescriptions and medication. It is clear from the individual management reviews that Alex’s mother and step-father were made aware of the implications of non-compliance with care. The specialist CF nurse communicated with the school who were also concerned about Alex’s care. They had observed that the medication regime was disrupted due to mother not renewing prescriptions and about the growing needs of the family as the condition deteriorated.  The school initiated a Common Assessment Framework in an effort to co-ordinate a visible plan. While on the ward, physiotherapy was difficult as Alex was resistant but this worsened over time. Staff observed that Alex’s mother was reluctant to encourage or to provide the necessary discipline to persuade Alex to have physiotherapy and this is a recurring feature.  The information available raises a question as to whether physiotherapy at home was carried out at the frequency and rate required, if at all. This amounts to sub-optimal, compromised care. Alex was a strong willed young child and assertive and may have been difficult to persuade.  However, with considerable  Page 17 of 47  perseverance, hospital staff were able to do this. So while this is demanding and challenging, it was possible. It is also possible that Jessica was undermined by the pressure and tensions from her partner and ex partner, limiting her capability to deliver on this highly demanding challenge. Later, Alex’s school carried out physiotherapy when at school. At one point, an x-ray was refused by Jessica mother as she was picking up the children and could not wait. An admission in April 2010 occurred a day late and Jessica arrived with no dietary supplement, essential for care and not always immediately available on the ward. In May 2010 Alex needed IV steroids. Upon arrival on the ward Jessica refused cannulation. Later, she took Alex from the ward.  Reviewing the Hospital and school IMR’s it appears that Alex’s medical care was not prioritised by Jessica. This review has established that she was under pressure from her new partner and was likely to have been a victim of coercion and control and that she was also managing tensions between her ex and current partners. Clinicians on the ward observed a detachment by her in relation to Alex’s needs, while paying attention to her new partner. It is very difficult to be categorical about the impact of coercion and control on her behaviour but research and practice experience suggests that this played a major role influencing her actions and impacting on her parenting. In July 2010 Alex’s natural father told police that Alex’s sibling, Stevie, had been assaulted by a step sibling, (Adult 4 “Harry”) and had marks on the child’s neck and that this had been identified by the worker at the contact centre. Alex also said that the stepfather had hit Alex and that Alex was not having physiotherapy at home.  The information about the marks on Stevie’s neck was followed up by police and the social worker, but it appears that the information about Alex not having physiotherapy at home was not given attention. The police and Children’s Social Work Services IMR’S both suggest that the response ought to have generated a more formal child protection response. Childrens Social Work Services IMR suggests a strategy meeting held using the LSCB child protection procedures, would have enabled formal information sharing.  Alex and stepfather provided a plausible explanation at a home visit by the social worker, saying that the marks on Stevie’s neck were caused when Stevie fell off the trampoline. There were no marks visible then. The multi-dimensional nature of the families situation, including the impact of domestic abuse, coercion and control on Jessica’s parenting ability were not fully understood at this time but may have come to light if a formal child protection process had been followed as the concerns by clinicians may have been shared at this point. Alex is likely to have found the messages confusing. Very experienced and senior clinicians emphasised the importance of every aspect of care. It may have seemed to Alex that Jessica did not see this as of high importance. Jessica was  Page 18 of 47  frequently observed as acquiescing to Alex’s immediate needs and wants at the expense of the longer term welfare of the child.  Professionals witnessing this over the 2010 period were concerned but were unaware that the stepfather was suffering from mental health problems and the extent of domestic abuse, coercion and control. At this time, he, the stepfather, was experiencing suicidal ideations and was finding the children’s demands very difficult, and was being treated by the GP and Psychiatrist. He also spoke of an unhappy childhood.  Jessica’s parenting was affected by domestic abuse, hostility and coercion and control but this had not been fully understood by all those working with the family as not all professionals involved were aware of all of the information.  The local NHS provider Foundation Trust IMR points out the need for psychiatric clinicians to share information with safeguarding specialists and with Children’s Social Work Services and the multi-agency system and this is a valid criticism. This is more than simple information sharing as the social worker was aware that the child’s stepfather was getting interventions at a local mental health provision. This is about finding out about the implications of his mental health condition and essentially how his behaviours and attitudes were affecting his parenting capability and how his behaviours were affecting Jessica.  The Childrens Social Work Services IMR noted that although meetings were generally well attended by relevant professionals, it would have been valuable for a representative from the local mental health provision to have been invited to contribute. Concerns continued to mount towards the end of 2010 and a formal child protection referral was made by the Cystic Fibrosis consultant. Police informed Children’s Social Work Services about another call out for domestic abuse toward Alex’s mother from the natural father. On Thursday 9th December 2010 police received a 999 call from the child’s natural father who reported that his ex-wife’s new partner had been arrested previously for assaulting a minor and he stated that his children had told him that “Aiden had been beating mommy up and they had to stay at their nan’s house”.  He also told them that one of the children wanted to buy a cowboy outfit with gun and handcuffs and stated “the child wanted to protect mommy from nasty Aiden who keeps hitting her”. (Police IMR paragraph 9.2).  The Consultant Paediatricians referral described the family’s inability to balance Alex’s needs (i.e. in terms of the intensive medical treatment package) with the wider needs of the family.  At this time (late 2010) the prevailing view was of Aiden as a plausible and caring influence. The local NHS provider Foundation Trust contribution to the chronology describes the Cystic Fibrosis consultant’s reference to him as a “stabilising” figure in the family. However the evidence from this review demonstrates that his mental health was deteriorating.   Page 19 of 47  On 27th November 2010, Adrian had attended the A & E department having cut his wrists and this is referred to in the local NHS provider Foundation Trust IMR. On 30th he had a serious altercation with Jessica, pushing her against the wall, taking her mobile phone and cash. He had been tearful, telling the mental health nurse about his suicidal ideations. Very shortly afterwards, on the 2nd December, he was influencing important decisions made about Alex’s care on the ward, as he and Jessica were refusing consent for re-cannulation.  2011(“02/03/2011-20/12/2011 Child in need” CSWS IMR) In early February 2011 the private law matter of contact for the children with Alex’s natural father was before the courts. The courts had ordered a report from Children’s Social Work Services under Section 37 of the Children Act 1989 to establish if there were any safeguarding concerns. The report was completed at the end of February 2011. It did not identify significant safeguarding concerns that would require the local authority to apply for a Care Order or Supervision Order. It reflected that the local authority was currently involved on a Child In Need basis and confirmed a view that assistance via this route continued to be the most appropriate. Subsequently, meetings were held (on 30/03/2011; 16/06/2011; 23/11/2011) prior to case closure on 20/12/2011. Alex’s mother was reluctant to consent to a vascuport inserted which would have made the administration of medicines much less painful and difficult. Efforts were made to persuade the mother but it was not until March 2013 that the procedure was carried out.   Some of this was due to procedural difficulties and delays in the appointments system. This delay resulted in repeated difficult procedures and with the mother’s consent could have been carried out much sooner. The IMR from the local NHS provider Foundation Trust makes valid suggestions about how clinicians might improve their efforts on this, and get support with it in terms of advice from their safeguarding specialists and understanding the legal framework that is there to help them. While her reluctance to consent may not have resulted in significant harm when taken on its own, it formed part of a larger picture of overall non-compliance. If all practitioners had been aware of the tension in the family and Jessica’s experience of domestic violence and the pressure she was under from two abusive men, including Aiden’s controlling behaviours, they may have looked at this situation differently. Practitioners engaging in the practitioners event as part of this serious case review also suggest that understanding of the whole treatment package would help them better understand the implications of episodes of non-compliance suggesting the importance of evidence informed multi-agency care plans. There is evidence to suggest that Alex was living in a volatile environment. The stepfather was suffering from depression and mood fluctuation and talked to his clinician about the demands of the family and how he found it difficult to manage.   Page 20 of 47  In the confines of his confidential sessions with mental health clinicians, Aiden expressed some resentment of the children and their demands and his dismay at not being praised for his efforts. It is likely that Alex would have felt at least some of this at home even though the step father absented himself from the home at this point in order to deal with his anger. While this may appear to be a protective act, the underlying tensions and the distraction from Alex’s needs will have increased the propensity to compromised care, including missed appointments, failure to ensure medications were available, lack of physiotherapy and poor communications with the school. All 3 adults caring for Alex had serious difficulties. There was tension between mother and her partner and with Alex’s natural father who had a problem with alcohol. In addition there were rent arrears and financial problems. Jessica was struggling in a difficult environment with her partner and ex-partner repeatedly behaving badly towards her and this had to have impacted on her ability to care for and prioritise Alex’s needs. The referral by the paediatrician at the end of 2010 resulted in an initial assessment by Children’s Social Work Services and a meeting referred to as a Team Around the Family (TAF) being held in January 2011. (The local NHS provider foundation IMR notes that the respiratory nurse who attended recorded this as a child protection conference).  From the point of referral to that meeting, Alex’s mother began to co-operate. She did not accept the concerns raised and criticised the hospital for making the referral. She made attempts to explain her situation to the social worker in these terms.  Nevertheless in the weeks following the referral, Alex’s medication was provided on time and there were no observations made in relation to problems or deficits in the care provided. This was reflected in the social worker’s assessment and impacted on multi-agency decision making. Professionals working with the family noted these recent improvements and were encouraged by it and by the knowledge that the social worker was involved. These recent developments probably injected some optimism into collective thinking, inhibiting a full discussion of the pattern of sub-optimal care because the recent changes may have obscured the issues professionals had been worried about in the preceding two years. The panel also referred to another inter-agency feature which is seen in serious case reviews nationally. In an effort to pursue a supportive approach to the family and work in partnership with them the evidence provided by partners was not heard. This undermines the credibility of the partners’ views and may lead to a diminished confidence in the multi-agency system. This is further exacerbated by a collective empathy with the mother, given the significant nature of the family’s needs and the resultant demands placed on her. It appears that most professionals were unable to incorporate in to this the fact that her partner’s and ex partner’s behaviours were clearly impacting on her and her decision making. Added to this was the very real need to work continuously and diligently with her in order to nurture a fragile relationship and gain  Page 21 of 47  compliance. Professionals were very aware that compliance was very difficult to sustain.  The stakes were high. Professionals reflecting on this talked about how they were inhibited from expressing the full extent of their concerns at this and other meetings with the mother and stepfather present. At this point in time, they were unaware of the extent of the stepfather’s mental health condition and were also mindful of the recent evidence which showed positive improvements.  They were also unaware of the dynamics above impacting on their prevailing view at the time. The Children’s Social Work Services IMR suggests that the initial assessment, completed in December 2010, did not fully explore the expectations placed upon the mother and stepfather in terms of the treatment package.  The same IMR also reflected that a strategy discussion may have helped to unpick the level of concern prior to the assessment. Had this been incorporated, the outcome may have been a child protection conference. This would enable a multi-agency information sharing and consideration could have been given as to whether the recent changes were sustainable long term. This may have been an opportunity to consider whether the disguised compliance was a strategy to divert professionals from formal child protection concerns and also how much of this was as a result of her partner’s and ex partner’s behaviours towards her. This explains why professionals found themselves at that meeting reporting on positive compliance with treatment even though they may have left the room with residual concerns.  At subsequent events arranged to consult with practitioners, they reflected what they have learned from working with Alex; “Make sure not to over emphasise strengths. Ensure the voice of the child is heard at these meetings” and “More focus on the whole health plan.” The local NHS provider Foundation Trust IMR report refers to an admission to hospital March 2011.  “During this admission there was some delay in treatment administration due to (Alex’s) absences from the ward which were not agreed with the clinical staff and did not take into account the treatment regime.”  This indicates that the pattern of non-compliance had recommenced. In March 2011 Alex’s sibling, Sam, reported to their natural father, Martin, about inappropriate behaviour by a step brother, Harry, and Martin made a referral to the police. This was followed up and found to be inconclusive following police and Children’s Social Work Services (as it was the weekend Emergency Duty Team) interviews.   It was also discussed at a TAF meeting. However, also in March 2011, a Non-Emergency Call Handler at the Police received a telephone call from the Doctor at a  Page 22 of 47  local mental health provision reporting concerns that he had for Aiden as he had contacted the provision that morning threatening to self-harm.  The Doctor reported that there was previous history of self-harming. Officers were assigned to carry out a home visit but were diverted to a more immediate emergency situation. They phoned his daughter the next day who said that “he was fine”.  The police IMR refer to this incident as appropriately managed; however consideration of him as a carer for children was not referenced in the IMR. Then, on 27th April 2011, Ambulance Control contacted the local police Force Contact Centre requesting officers attend Aiden’s address as he had taken an overdose of diazepam and sleeping pills. He had a week old injury where he had “glassed himself”. The police IMR shows an appropriate response to an adult who is ill. However, there does not appear to be a reference to whether he had a caring role for children and whether further action on this may have helped those working with the family to comprehend what life may have been like for the children. The influences surrounding the family were not understood by those working with them and the incident around inappropriate behaviour did not acquire enough significance. Professionals are likely to have been more influenced by a backdrop of family tensions. Unaware of Aiden’s mental health issues, they may have found themselves investigating to dismiss or confirm a hypothesis which asks “Is this just a malicious referral?” as opposed to considering this within the context of the broader family issues at play at the time. It is clear in the local NHS provider Foundation Trust IMR that Aiden was in need of clinical support. He had left the family home and there was tension between him, Alex’s natural father, Martin and Jessica at this point. In June 2011 Jessica and Aiden attended a TAF meeting and suggested that Martin had taken photos of the children’s bottoms. This was followed up by Children’s Social Work Services. There were a number of unsuccessful attempts to contact Martin. It is not until 26/07/2011 that a strategy discussion is recorded as having taken place. The matter was followed up by Children’s Social Work Services as a single agency. The concerns were not substantiated. These incidents suggest that the children may have been the focus of tension between the 3 adults as the first incident accuses Alex’s step brother and the second, 3 months later, accuses Alex’s natural father. If so, it reflects a hostile environment that Alex was living in and suggests a lack of concern about the impact of these allegations on the children. This does not feature in the IMR’s as each incident is dealt with appropriately but they are not considered within the overall pattern of adults’ inability to prioritise the children’s needs. Decision making was not influenced at all by Aiden’s mental health issues as professionals working with Alex were unaware of it.  Page 23 of 47  There is evidence in the IMR from the local NHS provider Foundation Trust to show the efforts of clinicians to help Jessica to understand the implications of non-compliance with medical treatment. For example in September 2011, the Consultant Paediatrician saw Alex’s mother and stepfather and recorded a long discussion with them where she clarified the seriousness of the condition including treatments for infections and the importance of the medication to treat these effectively. At home, the Children’s Social Work Services IMR refers to a concern raised by the family support worker following concern by the school that Stevie had an injury. The explanation given was that this was a carpet burn caused by Sam pulling Stevie down the stairs. This was accepted at the time. Alex also indicated a fear of the natural father, because he “says nasty things about the mother”. Offers of support were avoided by Jessica at that time.  During this period the children’s behaviour was deteriorating at school and the school were increasingly concerned about their welfare. Jessica was accompanying her husband to his session with the mental health clinicians. There were repeated failures to bring Alex to appointments at the respiratory clinic. 2012 (“Case closed-no involvement” CSWS IMR) 2012 began with a planned admission in January. Alex’s mother did not bring essential medications. This would have resulted in delays to administering them and so was disruptive of clinical care. The consultant explained to Jessica and Aiden that Alex’s liver may be deteriorating. They responded by saying that “they were tired of getting bad news”.  This suggests that they were finding updates from professionals difficult to hear. They found Alex’s care very challenging in terms of the demands on them and that they were finding it difficult to consider it from Alex’s point of view. The mother complained of “treatment overload” in terms of how overwhelming and complex Alex’s needs felt to her. The consultant made efforts to introduce the care elements in manageable chunks.  Clinicians advise that a certain detachment by parents/carers is not unusual and so, this observation when taken on its own can be open to interpretation. However, taken within the context of concerns by a range of professionals in relation to a pattern of compromised care, it acquires significance. On 03/02/2012 the family support worker at Alex’s school informed the social worker that he was concerned that Jessica and Aiden may be uncooperative in hospital and could discharge Alex early. He also was concerned that Alex had presented as physically shaken; “trembling from head to foot” in the hospital school. The Children’s Social Work Services IMR notes an attempt made by the social worker to contact the family support worker at Alex school to clarify details as the school had referred the concern earlier that day. The IMR author found no details as to the outcome of this contact or of any management decision as to next steps. The case remained closed. This IMR also suggest that given the history of this case  Page 24 of 47  and the implications known about non-compliance the issue should have been clarified and a management decision confirming next steps placed on the child case record. This pattern of non-compliance continued throughout 2012 and the impact on the children became more visible as Sam’s behaviour deteriorated further. There were repeated failures to attend appointments at various clinics.  Alex’s father made repeated attempts to contact the ward for information and was frustrated by the limitations imposed on the information shared. Alex did not want contact with the natural father. This may be related to a fear of the father described earlier or due to the father’s alcohol problem. This review has found no real evidence of anyone asking Alex about this. Between 4th April 2012 and 22nd May 2012, there were four incidents of re-glazing requests to the side front door (dated 4th and 24th April and 4th and 22nd May 2012). These all had crime numbers and the Housing IMR reports that “there were problems in the locality with children throwing stones…there were no concerns at the time about the property or these repeat incidents”. The Local Police IMR correlates the incident on Wednesday 4th April 2012, but does not comment on the other 3. While this may not have immediate safeguarding relevance, it helps inform this review about what life must have been like for Alex.  The vascuport was finally inserted in April 2013. In an unusual move, the mother asked that a letter be provided to show that she was not culpable should there be any complications of the procedure. This unusual behaviour is open to interpretation and may indicate that Alex’s mother was fearful of being blamed in the event of complications. In July 2012 Alex’s stepfather told his GP that he had taken an overdose of Temazepam the day before in an attempt to commit suicide. Throughout August and September, there was a persistent pattern of failure to comply with the management of Alex’s diabetes.  In December 2012 the respiratory nurse was concerned about the overall family situation and sought supervision about this, describing reluctance by Jessica and Aiden to engage with all the professionals involved. The family refused psychology support for themselves. The respiratory nurse picked up that the stepfather was controlling and she suspected domestic violence. It is reasonable to suggest from the evidence in the IMR’s that the stepfather used coercion and control and that the nurse’s suspicion about domestic violence was correct. The respiratory nurse agreed to instigate a Common Assessment Framework (CAF). At this point in time, all those working with Alex were worried about the family.  Page 25 of 47  This review finds, that at that point, there was sufficient information available to make a child protection referral but it was not all in one place and visible.  Alex was not brought in for a planned admission on December 18th. The consultant re-arranged for January. This is revealing a pattern of overall sub-optimal care, perceived by each individual professional working with Alex. The overall impact on Alex is obscured by the mother’s ability to avoid circumstances which may amount to her being confronted by the issues. Professionals working with Alex suggest that they were unable to bring all the information together in one place as there is no one central agreed process to share information and no central figure co-ordinating it and/or leading it. 2013 (“05/06/2013-04/09/2013 Initial assessment, Core assessment 04/09/2013 -13/07/2014 Child in need”; CSWS IMR) A significant deterioration in Alex’s condition was noted by clinicians on admission to hospital in January 2013. The diabetes management was changed and Jessica and Aiden informed about management on discharge. The school IMR refers to the fact that they were not informed by the mother or stepfather about this. Alex told the school.  The local NHS provider Foundation Trust IMR reports that on 26.2.13; “There was a meeting with the CF Team and parents (actually, the mother and the stepfather), the CF Consultant, the respiratory nurse and the Psychologist were in attendance.  Parents (the mother and step-father) reported finding the treatment very difficult and noted that Alex’s behaviour was also extremely difficult. The child  was oppositional (refusing to get washed, dressed, eat, do physiotherapy) and they thought Alex was low in mood, scratching  arms, leaving marks and inducing vomiting when distressed. Alex was not interacting with the family. They described the child as ‘closed down’ and was ‘shut off’. The child was noted to use ‘vile language’ to siblings and was increasingly short of breath at this time due to deterioration in physical condition. The stepfather asked if insulin could be stopped as he viewed it as a trigger for negative behaviour however it was explained that this was not possible but they could help Alex to see that the blood sugars indicated that insulin was necessary.” The school were also concerned when, on 13th February 2013 Alex was absent, a sibling, Sam, said that the stepfather was keeping Alex home as the child was naughty and had scratched the child’s face. This was translated by mother who said that Alex had had a tantrum and had scratched the child’s own face during it.  The DMS (Designated Member of Staff for Safeguarding in the school) was informed.  In April, consultants began to weigh up the feasibility of lung transplant surgery. The (local NHS provider Foundation Trust) IMR suggests that they were of the view that if they considered that transplant surgery was not viable because of the risk associated with poor compliance by the mother, then this would be a safeguarding concern. However the decision not to proceed was a clinical one, based on the fact that the child’s health had deteriorated, and safeguarding concerns were not a factor in the  Page 26 of 47  decision. Alex went to Great Ormond Street Hospital (GOSH) for assessment and there followed a series of actions for the Local Children’s Hospital to carry out over the next year. At this point, (April 2013) the CF nurse pointed out that both Alex and Bobbie told the school that they were not having physiotherapy at home.  The Childrens Social Work Services IMR notes an Initial Assessment (IA) was started following a referral made on 5th June from the family support worker at Alex’s school. The family support worker was concerned that Alex appeared to have lost weight and seemed more withdrawn from peers. Alex also informed the social worker that the local Foundation Trust Hospital had expressed concern about missed appointments and queried how often Alex had been having physiotherapy at home. Sam’s behaviour was also a concern as aggressive behaviour had been noted. The family support worker also said that the children sometimes came to school in uniforms that appeared dirty and at times a smell of urine was noted. The initial assessment was carried out by a social worker in Training.  The Children’s Social Work Services IMR points out that the allocation of this work to a social worker in training is not in itself a concern providing there is appropriate support and oversight from a more experience qualified colleague, and, supervision from the supervising manager but, there was no evidence on the case file of a supervision discussion with the social worker in training. Although the assessment references appropriate history and places the concerns about Alex in the context of the additional needs of the other children, there is no evidence of robust challenge of the parental denial of the concerns raised in respect of missed appointments and Alex’s health package. This could have been achieved by more forensic approach based upon detailed enquiries with the responsible Paediatric Consultant, treatment team and school nurse. It would also have assisted to have obtained the child’s views and consider whether these supported the account of the mother and stepfather in terms of the administering the treatment package.  The subsequent core assessment records suggest that the thresholds for child protection were not met but that there should be on-going social work involvement as Alex was a Child in Need. The Children Social Work Services IMR suggests that while appropriate enquiries were made, contingencies to consider child protection if progress was not met or if there is non-compliance issues could have been explored at this time. Alex was seen as a child in need from 4th September 2013 until death in July 2014. A series of meetings, referred to as Team Around the Family meetings were held.  While in the first half of 2013, Alex’s behaviour was considered to be challenging, a note of a meeting held in July referred to him as being happier after the Easter Holidays.  Page 27 of 47  The local Children’s Hospital IMR refers to a meeting held in September at the school attended by Jessica and Aiden. The meeting was concerned about Alex’s attitude to physiotherapy, the management of diabetes and compliance issues. It was noted that Aiden was drowsy, slurred his speech and was sometimes asleep. He was taking opiates for his back injury and was using crutches. When the subject of hygiene was raised, Jessica became defensive and the meeting agreed to share concerns directly with her in future. The meeting resulted in advice to the school around diabetes management. The local children’s hospital IMR describes the Mothers defensiveness appearing again at a multi-disciplinary meeting in November when she and Aiden were both adamant that they did not want help with the other children. Alex attended this meeting and talked about CF and expressed a fear of not waking up. This appeared to be connected to the discussions around heart and lung transplant surgery. Financial pressure continued. Jessica contacted housing in August 2013 as she could not afford bedroom tax. In addition, on 21st November 2013, a letter was sent to her warning of court action for rent arrears. On 2nd December 2013, Jessica called twice in the same day and informed housing of her multiple debts including credit cards and water rates and her distress was noted. She declined Money Advice as Alex was about to be admitted into hospital for a fortnight. On the same day, 2nd December 2013, an engineer attended the property and noted human excrement on the bathroom floor. As the case was open to children’s social work services, the housing officer attempted to call the social worker to share this information. The local NHS provider Foundation Trust IMR notes that on 04.12.13 the school nurse recorded that Alex had been admitted by ambulance to the High Dependency Unit at the local Children’s Hospital. A meeting was held on 05 December 2013, attended by the local Children’s Hospital and local Foundation Trust staff. It was attend by the Psychologist, Cystic Fibrosis Respiratory Nurse, Cystic Fibrosis Physiotherapist, Inclusion Manager/ Area SEN Co-ordinators, Primary School, Youth Worker, Learning Mentor/ Play Therapist, Children’s Community Nurses (2), Diabetes Specialist Nurse, (local children’s hospital), and 2 social workers. This meeting had concerns that Alex was at risk because the significant health needs were not being met by the family despite “them trying hard”.  The paediatrician was concerned about how much support the family will require if Alex were to spend more time at home and whether the family would welcome that support. The school also expressed concerns about child protection issues for all the children and felt that they need a child protection plan under the category of physical and emotional neglect.  The school told the meeting that their relationship with Alex’s mother and stepfather was poor and they were both very defensive, negative and felt they were being victimised. The school also said that Aiden did not want the school to get involved in  Page 28 of 47  diabetes care. The school reported that the children “were always dirty and smelly” and they were concerned about the mother’s lack of interaction with the other children.  Practitioners attending this meeting came away with different understanding of the outcomes as follows; (taken from the IMR’s) • The local Children’s Hospital clinicians “did not record any child protection actions”. (local women’s and children NHS Foundation Trust IMR) • The social workers understood that “the meeting had agreed that escalation to child protection would be considered at the next TAF meeting in the New Year.” • The school noted that: “The social worker felt that child protection would damage the relationship between professionals and the mother and step-father.”  • The respiratory nurse recorded that the local Children’s Hospital team would discuss hospital/hospice care with parents (mother and step-father). On 11/12/2013 the school advised the social worker that Sam would not be allowed to go on a school trip to a pantomime due to continued behavioural problems. The school also advised that Stevie had said to member of staff that Sam has hit Stevie over the head with a bag, kicked Stevie in the leg and punched Stevie on the back. As the housing officer had not yet spoken to the social worker, this meeting was uninformed by the concerns of the housing officer about human excrement in the family home. Various attempts were made by the housing officer and social worker to contact each other but this contact finally took place on 13th December 2013 when the housing officer sent a fax to the social worker. The social worker attempted a home visit but was unsuccessful. (Alex was admitted between 9th December 2013 and 18th December 2013) so the Emergency Duty Team attempted a home visit on the same day, but there was no reply.  The social worker made a home visit on 16th December 2013. It is interesting to note that, by coincidence the housing officer had made an appointment for the same day and Jessica cancelled it saying that she had to take her son to hospital.  The social worker noted that the home was clean but there was an odour. The home was cluttered and it would appear that they did not open the window to allow the circulation of air. The social worker discussed this in terms of the children’s' personal hygiene, and Bobbie’s medical care needs.  Jessica said that she was doing her best.  She said she was giving the children showers every day, and providing perfumes and deodorant. Sam was still bed wetting and she said that she changes the bedding every day and she was attending the appointments for advice. She is not sure what else she can do. The social worker suggested support in the morning but both Jessica and Aiden refused. The social worker felt that Aiden, in particular, was against the idea of extra support. He stated that he used to be a carer and he knew how embarrassing it could be. He would not feel comfortable having carers in the home particularly if he wants to walk around in boxer  Page 29 of 47  shorts. He said he would accept nursing care for Alex if it meant that the child could remain at home. The social worker agreed the following actions with Jessica and Aiden:  1. A set of school uniform to be provided at school. Jessica stated she would include a wash bag.  2. Bobbie to have physiotherapy and nebuliser at school. 3. Jessica to provide the school with Alex’s blood sugar levels recorded in a note book. Alex’s stepfather is the only person who can give Alex the insulin.  4. To attend a follow up appointment with the Enuresis clinic for Sam, and to ascertain whether they could support the family with equipment and replacing the mattress. 5. Follow up the Child and Adolescent Mental Health Service referral for Bobbie from the school. On the same day, the 16th December,  the social worker contacted the local Childrens’ Hospital for an update in advance of meeting with Jessica and was informed about a meeting the local Children’s Hospital had had with the family on 13th December to explain the next step in the clinical care, nocturnal non-invasive ventilation.  The family were willing to accept medical and nursing support at home if it meant that Alex could remain at home longer. The family were also planning a holiday to Butlin’s Skegness 19th December 2013 to 23rd December 2013 and the hospital was to provide the family with oxygen and a clear plan in case Alex was to fall ill. The CF nurse indicated that she had observed no concern with the home environment saying that it is usually clean and tidy but she had only been in the living room, bathroom and toilet. There is no evidence to suggest that the referral from housing in relation to human excrement was shared by the social worker with the hospital staff at this point. Had this been done, the clinical implications would have been made known to the social worker.  The Children’s Social Work Services IMR indicates that there was no record of the information of 11/12/2013 and 13/12/2013 being considered in the light of the existing concerns and the plan confirmed to keep the threshold of involvement under review. This review finds that there was also no evidence to suggest that the concerns expressed at the multi-disciplinary meeting on 5th December 2013 at the hospital were incorporated into the social worker’s response.  The Children’s Social Work Services IMR also suggests that “a strategy discussion would have been appropriate to agree actions and consideration of the child protection threshold. Notwithstanding the significant number of demands arising from the children’s needs, the responses from Alex suggest significant concern about her capacity to consistently meet the children’s care needs. The rationale from Alex’s stepfather in refusing additional support does not suggest an ability to prioritise the needs of the children/family above his own.” His behaviour is replicated in the hospital and at school and was a consistent feature throughout the period of this review.  Concerns by the hospital and the school expressed on 5th December were significant and should have been incorporated into decision making.  A  Page 30 of 47  pattern of sub-optimal care and non-compliance would have been clearly visible at this point had child protection procedures been instigated. During the subsequent months and until death Alex had frequent admissions into hospital as the child was unable to remain well at home. The burden of care was very high. More support was needed at home but Jessica did not accept this. There was concern that the transplant team may not accept the referral. For the operation to be successful, the family would need to be able to work very closely with the medical team and to offer the high level of co-operation and support. There was concern that the parent’s reluctance to have help at home and their general non-compliance would affect the transplant team’s assessment. In fact the decision was clinical. The transplant did not go ahead as Alex’s condition had deteriorated. 2014 until Alex’s death: (“Core assessment 04/09/2013 -13/07/2014 Child in need”; CSWS IMR)    Following the mounting concerns raised in December of 2013, the social worker carried out a home visit on 2nd January. Alex was at the hospital having diabetes management reviewed. The social worker noted that the home environment was clean and this included the children’s bedroom. Sam, Bobbie and Stevie were seen and spoken to as part of the visit and their views obtained. Sam going to the natural father and Stevie did not. Bobbie made no comment. On 16/01/2014 a “TAF” meeting was held. It was attended by Alex and Aiden, a Youth Worker (who had been working with him to encourage him to comply with treatment), the Diabetes Nurse, the  Respiratory Nurse, the Community Nurse), the family support worker from the School, the SENCO, the Physiotherapist, and two social workers. Community Nurses described services available to provide support for the family at home. Alex and Aiden said they did not want care support in the mornings. The Community Nurse clarified that the support about medical need rather than care need. The nurse agreed to discuss further with them both. The SENCO confirmed that Bobbie had been having physiotherapy in school and it was going excellently.  Training had taken place at school with regard to physiotherapy and also with regard to the diabetes pump. There had been no new reported concern regarding the children’s presentation or hygiene. Referrals for CAMHS and assessment regarding possible ADHD for Bobbie were to be followed up. The Children’s Social Work Services IMR notes: “There was no specific consideration of the need to escalate into child protection – despite this being agreed at the professionals meeting 05/12/2013”. The pattern of raised concerns followed by recent improvements continued. While there was consensus about considering raising this to children protection procedures, there was confusion about how this was to take place and who was to action it. The social worker, having developed a hypothesis about the family’s situation as a family in need, tried to sustain an increasingly fragile relationship with the family and was  Page 31 of 47  unable to incorporate the new information presented by the TAF meeting on 5th December to challenge the original hypothesis.  Over the previous year, there was a pattern of non-compliance manifested by false compliance and aggressive behaviours in the adults caring for Alex. Following formal child protection referrals improvements in compliance are seen and recent improvements tend to influence professional judgment more than the history. The result is sub-optimal care of the children and helps us understand their increasingly challenging behaviours at that time. The professionals working with the family cannot have comprehended this overall feature, but there was sufficient information to make a formal child protection referral in the first two weeks of December, following the multi-agency TAF meeting. While the housing officer did the right thing in sharing the information about human excrement on 2nd, this was delayed by practical communication problems. The urgency of this situation, and the inability to contact the social worker on that day warranted a formal child protection referral to children’s social work services. The information available at the TAF meeting on 5th December also amounted to a formal child protection referral. Social workers were present at that meeting and an assumption may have been made that they would take this up, but the decision making about this was too vague and unclear as the information sharing system they were in was unstructured.  National experience and recent serious case reviews in the LSCB area and the region can help in understanding some common recurring phenomenon in practice in this case. Understanding non-compliance involves an awareness of the impact of non-compliance on the child, and in this case there were serious clinical implications for Alex.  Non-compliance is subtle and long term.  It was sustained by rigid adherence to a fixed idea of the position of the family and an inability to incorporate new information and alter this fixed view.  Non-compliance is also sustained by an inability to look back on a series of incidents over at least a year, to establish patterns. Non-compliance was also sustained by the complexity of Alex’s clinical condition and the very powerful and important need for professionals to have a helpful and supportive relationship with the child. Information sharing in December of 2013 and January 2014 demonstrates these issues well, but they feature throughout the period of this review. On 7th January, Alex was keen to talk about the biological father, Martin. Alex was frustrated that Martin keeps contacting the ward to speak to Alex. Alex was adamant about not wanting any contact with the natural father. This entry does not refer to why the child felt this way, but it is likely that the environment at home was not conducive to Alex having a positive relationship with Alex’s father and the father’s drinking may have affected Alex’s desire to see him.  Page 32 of 47  The following month, Alex asked the CF nurse to see the clinical Psychologist to talk about the natural father and wanted to write a letter to him. There is no evidence that this letter was written. Further enquiry of the local NHS provider Foundation Trust IMR author suggests that the letter was not written. At this time, Alex was also worried about the proposed transplant. On 17th February the social worker made an unplanned home visit. No one answered the door but the social worker heard the children running about inside. The social worker maintains that she sought advice from a manager on her return to the office – but there is no record of this on the case file.  The Children’s Social Work Services IMR suggests that swift action to ensure the children were safe should have been taken – potentially contacting the police to assist with effecting entry to the property if needed. At the very least an urgent phone call from the doorstep to the manager should have been made. Jessica and Aiden then requested another social worker because they said they could not work with the current one.  A further visit was undertaken on 24th February by another social worker. At this contact Aiden alleged that Stevie had been slapped by Martin. There was no mark shown on the purported photograph. A Section 47 was considered but a decision made that it was not required given the “context of acrimonious contact”. A further contact was organised to explore issues with Martin.  On 24th February, Martin reported that on the previous evening, after contact he had an altercation with Aiden.  He had asked him why a social worker came to see him. Aiden told him that Bobbie had stated that Martin had hit him and Sam had witnessed it. Martin said that was not the case. Aiden was angry and drove off with the car door open. Sam did not have a seatbelt on. Martin reported the incident to the police. The pattern of frequent altercations and allegations continued. Each event is considered individually, measured against a hypothesis which asks: is this just a malicious allegation or is it a genuine CP issue?  It does not ask about the impact of these frequent disputes and allegations on the welfare of the children long term and does not incorporate the concerns expressed above at the end of December 2013 and the beginning of January 2014. A more retrospective analysis, for example, using chronologies and looking at the pattern of these events and how they collectively impact on the children overall would give a more realistic view of their experience. A Team Around the Family meeting was held in February. It was reported this meeting was heated as Jessica and Aiden did not want Martin to attend. This meeting was to discuss support needed if Alex were to be a suitable candidate for a lung transplant. By 19th March 2014 the Community Nurse confirmed that Alex had not been put forward on the lung transplant list. The SCR representative from the local children’s hospital has confirmed that this was not due to safeguarding concerns, but due to rapidly deteriorating health.  Page 33 of 47  30th April 2014 a Team Around the Family meeting was held. The main focus was around Sam’s increasing challenging behaviour and that the child did not meet the criteria for mental health services. The school was to receive training for the use of and change of oxygen cylinders, delivery of insulin and a family conference was to be arranged by the social worker.  On 12th May 2014 Stevie told a member of staff “ was sad because mom and dad are always shouting at Bobbie and Sam” and it upsets him and gives him a headache. He goes to the bedroom and puts a pillow over the ears.  This happens almost daily.” This was recorded for the DMS (Designated Member of Staff for Safeguarding in the school) but there does not appear to be any further enquiry with Stevie about this and the school IMR does not refer to this.  13th May 2014 a meeting took place and it was noted that Jessica and Aiden were attending to Alex’s health needs in line with the treatment plan.  Alex’s care was reported to be more controlled as a result of higher levels of care and interventions.  23rd June 2014 the social worker visited the family home. All children were seen in the presence of Jessica and Aiden. Alex was unable to talk due to being unwell and using the oxygen mask. The social worker checked the property. She noted there was still an odour and the rooms remained cluttered with toys and clothes that needed putting away. She did not note any new issues.   On 13th July 2014, Alex was admitted to hospital and died peacefully.  1 KEY LINES OF ENQUIRY: ANALYSIS OF FINDINGS  KLOE 1: Was Alex spoken to alone, listened to, and heard and did the child’s voice influence care planning?   Yes. There is evidence that Alex’s voice was heard and was respected and that it influenced care. One IMR suggested that “some professionals questioned whether the child was being allowed too much of a say in relation to compliance with the care package by parents”, (mother and stepfather) (Children’s Social Work Services IMR, page 21).  The local children’s hospital IMR reflected “that whilst it is best practice to involve a child in decisions on care which were important decisions, Alex was not actually fully capable to make those choices about care and treatment at this age and developmental stage (as the child may not understand the full impact of non-compliance)”.  The medical profession “acknowledged that Alex was probably allowed to have too much say and choice and instead of parents (mother and/or stepfather) making decisions on behalf of Alex, the child was allowed to make a lot of choices relating to care”. At one point, (June 2013) Alex drew images of the impending death, drawing a  Page 34 of 47  heart with mist around it and images of the grim reaper, indicating a fear of the child’s own mortality. It is not clear in the IMR on how practitioners responded to this. Attempts were made to engage a psychologist to support Alex and the child did see one on eight occasions, always with the stepfather. Due to the overall deterioration in physical health it was difficult to sustain interventions. Alex saw a psychologist from the local foundation trust on 2 occasions and at the local children’s hospital on 6 occasions. This review finds that professionals listened to Alex and respected the child’s views. There were 3 key areas where Alex’s voice may have helped the child to articulate feelings and also inform professionals concerns. • Why did Alex not want to see the child’s natural father, as indicated in September 2013? • Why was Alex trembling from head to foot in December 2012? • What was Alex trying to express when drawing the images described above? The answer to these questions might have helped Alex and might have shed light on what life was like at home. Learning:  The child’s wishes and feelings are important and should influence his/her care but adults have the responsibility to ensure that the care given is optimised and not compromised by the child’s views. A child expresses their views through language other than verbal, including behaviours and drawings. These should be acted on. Recommendation: All safeguarding training, including LSCB and single agency should include the importance of ensuring that children’s views, however expressed, are listened to, heard and acted upon. KLOE 2: Was the clinical care pathway appropriately communicated to and clearly understood and applied by the parents (mother and stepfather) and carers and professionals who worked with the family?  Were all the professionals working with the family aware of Alex’s care and risks of any deficits in the provision of care? No. Practitioners informed this review that they found the complexity of the care difficult to grasp and while they were aware of their role in delivering aspects of care it was  Page 35 of 47  difficult to understand the implications on Alex of non-compliance in the various elements of the care needed.  Specialist clinicians were not aware of what was going on at home much of the time and cannot have comprehended the safeguarding issues. To non-clinicians, missing medications and/or physiotherapy for example, may not have had immediate implications, but not all professionals understood the long term impact on Alex’s well-being. Most professionals therefore knew there were risks in a general sense but were not aware of the specific risks of non-compliance with specific elements of care. Professionals expressed a view that knowledge of the whole package would help them understand the implications of non-compliance. It is particularly important to understand that sometimes non-compliance does not have immediate impact but it can have a cumulative overall negative effect on the child. Children with this condition need compliance with all aspects of the plan in order to maximise the quality of their short lives.  Professionals informed this review that it would have helped to agree together on a defining point where the threshold for child protection is set (“Set a marker for CP threshold”). They also spoke about the need to escalate concerns clearly, using the LSCB procedure with confidence and about a structured process to share information and the importance of supervision.  This review also looked at the awareness and accessibility of the National Framework for Children and Young People’s Continuing Care programme to see if Alex’s specific circumstances could have been applied in this case. Continuing care is an option when the primary care need is a medical need that cannot be met by universal services and/or specialist services. In these circumstances funding and care packages, along with annual review is provided through the NHS Continuing Care team, commissioned by Clinical Commissioning Groups. One of the problems in this case related to what would have been expected from a NHS commissioners perspective at the time.  Unfortunately, the review had already highlighted that provision of services were not fully compliant with Cystic Fibrosis Trust Standards. Whilst this has been remedied now, around key episodes of care in June 2010, November 2010 and April 2011 Alex’s primary care needs appeared to need additional help at home. Based on the available information and following further discussions with a children’s continuing health care lead and considering Alex circumstances during those periods, the child may well have been eligible for continuing care at home.  If Alex had been continuing care eligible, the specialised cystic fibrosis team and respiratory nurse could have trained up care workers to help deliver Alex’s treatment regime within the family home, potentially avoiding hospital admissions and supporting carers to deliver care. The SCR panel agreed that this may have facilitated the much needed structure, but found that the pattern of sub-optimal care and non-compliance would have made this provision highly challenging to deliver in this case.   Page 36 of 47  This review has given rise to a concern to ensure that partners are aware of the criteria related to continuing care, and local arrangements to access and challenge decisions made.  The review also gives rise to the need to understand the implications of the Children and Families Act 2014. While this would not have helped Alex as it was phased in during a two year period, it is important that partners are aware of the provisions to support children, young people and their families from birth to 25. For example, Children and Families Act 2014 provides a legal framework for this work and includes; • Education and Health Care plans to support children, young people and their families from birth to 25. • The commissioning and planning of services for children, young people and families jointly run by health services and local authorities. • Extended rights to a personal budget for the support to children, young people and families • Local services available to children and families must be made available in a clear, easy to read manner. • Local authorities must involve families and children in discussions and decisions relating to their care and education; and provide impartial advice, support and mediation services. The Children and Families Act 2014 is also designed to work in tandem with other legislative frameworks, including the Children Act 1989 (as amended) and Care Act 2014.  The SCR panel was most concerned, however, to ensure that multi-agency coordination and structured planning where there are concerns about neglect are delivered effectively and in a timely manner. Learning: There is a need to raise awareness about the National Framework for Children and Young People’s Continuing Care programme and ensure local understanding of how it can apply to children with complex medical needs. There is also a need for all partners to be clear about the provisions of the Children and Families Act which was phased in since Alex’s death.  There is a need for formal structured collaboration for children where there are concerns about neglect. Plans need to provide information about the risks of non-compliance both immediate and long term, including the impact and agreed multiagency action if the pattern continues. Recommendation: The health and wellbeing board should ensure that all agencies are aware of continuing care specialist commissioning and the local arrangements for assessment and delivery.  Page 37 of 47  LSCB training should include training on safeguarding children with disabilities, including those with complex needs. Was the additional challenge of supporting Bobbie a factor in the support provided to Alex’s parents (mother and stepfather)? Yes. The professionals meetings held as part of this review and the views of the panel agree that extra demands placed on the mother of having two children with cystic fibrosis was a factor in the support provided. This is because it contributed to the overwhelming demands of all four children, not just those of Bobbie and Alex combined. Sam had escalating behaviour problems and the school felt that this was due to emotional trauma experienced at home. In these circumstances, these complexities make reasonable standards of care and expectations difficult for professionals to define, and for carers to achieve and sustain. Sustained consensus about thresholds become obscured by the need to focus on the children’s welfare while at the same time demonstrating empathy with the day to day demands on carers.  Practitioners talked about the importance of trying to articulate together what they consider would be the impact on the child of non-compliance within the context of a highly complex situation like this as well as the critical matter of good record keeping . Professionals also identified that these issues are particularly important when working with aggressive parents and carers as this is another form of non-compliance. They referred to the importance of support from peers and supervisors. Supervision can be instrumental in helping professionals to explore their concerns and clarify them. Learning:  Complexity can serve to obscure sound decision making. Sound supervision and support enables practitioners to think clearly. Using case learning meetings as described in the LSCB procedures would help practitioners explore these issues together in a safe environment. Recommendation: The LSCB should raise awareness, and members should support and promote in their own agencies, the importance of; • Case learning meetings as described in the LSCB child protection procedures • Supervision, as an instrument to express concerns, accept challenge and explore options. Were professionals provided with information, guidance and/or training to help meet Alex changing needs? Yes. Professionals expressed their lack of awareness about Cystic Fibrosis and expressed a sense of feeling overwhelmed by the complexity of the clinical care Alex needed. Staff in school were trained to deliver physiotherapy and oxygen therapy as  Page 38 of 47  well as diabetic care, giving the necessary knowledge and skill they need to deliver these elements of care. The hospital led on multi-disciplinary meetings which were not always attended by all practitioners involved. Learning: An overall learning programme to help practitioners to understand what care everyone else was providing and why and perhaps including life expectancy would have helped them to understand their contribution to overall care and so identify the impact of gaps in care. The Cystic Fibrosis Trust is an excellent resource for information on this condition.  Were deviations from care pathways recognised?  Largely, deviations were recognised but how professionals worked together to act upon them needs attention. The issues influencing decision making are described throughout this review and can be summarised as; • The overwhelming nature of the demands of the children on their mother • A lack of awareness and/or understanding about the impact of Alex’s stepfather’s mental health issues and his behaviour on the welfare of the children in particular his aggression, coercion and control. • Coercion and control, frequent altercations between the 3 adults and allegations made by them about abuse of the children.  • Mother’s non-compliance, sometimes manifested by false compliance and aggressive behaviour and whether this is a result of coercion and control. • Mother’s acquiescence to Alex’s immediate demands at the expense of the child’s long term welfare. These factors were exaggerated by confusion about the status of the processes, procedures and plans put in place which is described further below. Learning: While deviations were recognised, their cumulative nature and clinical implications were not understood by all those working with Alex. The pattern of neglect and non-compliance resulted in sub-optimal care. Compliance was inconsistent and improved when there were collective efforts to consider child protection procedures. The improvements were temporary and were not sustained. The prevailing view of social care that this family was in need of support and not child protection procedures was not informed by the serious implications of non-compliance with Alex’s treatment regime and should have been.  KLOE (3)                   Were all incidents of domestic violence known to all professionals working with Alex’s family? And were those incidents responded to appropriately?   Page 39 of 47  Over the period of this review, some, but not all professionals were aware of domestic violence by both the natural father and stepfather. The impact on the children of the acrimony between them as well as their abuse of Alex’s mother does not appear to have been fully understood in practice. Throughout the period of this review, Alex’s natural father and stepfather were continually in conflict, regularly abusive towards the mother and regularly involving the police.  Alex entirely relied on these 3 adults to provide the necessary and complex care needed while the child was living and to help with end of life care. Sadly, these tensions pervaded up until the time of death even extending beyond death as the 3 had an altercation over the child’s grave. The resounding noise of this tension and hostility appears to have drowned out the priority of Alex’s needs and life for this child can only have been difficult, confusing and at times frightening. It would appear that the school and the hospital might have provided some positive respite from the tension and emotional and physical clutter that was home. Outside of the child protection procedures, the multi-agency system was not structured in a way that enables these patterns to be clearly seen by those working with Alex. For example, clinicians in hospital settings will not have had access to the information about the family tensions and so may not have been aware of them. Some professionals had some of the information but no one professional had all of the information and there was no central reference point. Early help interventions, where there are concerns about neglect should include the completion of early help assessments and plans and arrangements for these are underdeveloped.   There are likely to have been more incidents of domestic violence than reported to the police. The police communicate with social care when they are called out to an incident and this information is triaged, primarily to ascertain if there are any immediate child protection needs. Information sharing on these incidents was therefore in line with the custom and practice at the time.  Learning: It is important for all professionals working with children with complex needs to have all the available information, specifically around domestic violence. The tension between adults in a child’s life can give rise to domestic violence as well as child abuse allegations. There is a need to ensure that when a referral is made in such a climate, attention should be paid to reflecting on the frequency and number of such allegations occurring over time to establish what it might be like for a child living with these issues and essentially work out whether these behaviours are negatively impacting on the child’s welfare because of their repeated nature and what they might be telling about carers’ ability to prioritise their child’s needs.  A formal structured multi-agency information sharing process should be developed so that there is one central point of information sharing for professionals working with  Page 40 of 47  children like Alex, i.e. children with complex needs; children who meet LSCB threshold level 3 needing sound multi-agency assessments and plans. Recommendation: Children who meet the LSCB threshold level 3 criteria where there are concerns about neglect should have formal processes and procedures to share information.  This should be achieved through partner consensus and formally approved by the LSCB policy and procedures sub-group and promoted by all members of the LSCB in their own agencies. In order to deliver this, each partner agency needs to be explicit about their offer to children where there are concerns about neglect and partners need to work together to design a formal solution to collaborate under Section 11 of the Children Act 2004 and Section 27 of the Children Act 1989 to help children like Alex, signing up to assessment processes, procedures and meetings to ensure effective collaboration. KLOE (4) Were there missed opportunities? Upon reflection of the evidence, are there gaps in information sharing, which, if identified and managed at the time, might have improved outcomes for Alex? A significant gap in information sharing was in relation to Alex’s stepfather’s mental health problems and the serious impact of this on his ability to care for Alex.  He was quite influential in Alex’s care, and presented as a caring parent. The Local Mental Health provider trust IMR refers to the need for clinicians to ensure they take appropriate action when a client has children in their care. However professionals were aware that he was getting a service from a local mental health provision but there do not seem to be attempts to engage professionals working with him to find out about his presentation and so there was not an understanding of the impact of his behaviours on the welfare of the children. Not all professionals were aware of all incidents of domestic violence and the allegations made by the adults about harm to the children while in the other’s care. There are some good examples of information sharing in practice between the hospital clinical specialist nurses and the school, providing essential information and training around physiotherapy, diabetes care and medication. Plans were shared as were concerns about safeguarding with agreements on how to move forward, e.g. at one point there were plans to create a Common Assessment Framework (CAF). Frameworks instigated and utilised during the timeframe to enable inter-agency communication and formalise links between health, education and social care were:  • Team Around the Family meeting - these were either school led or social work led.   Page 41 of 47  • The Common Assessment Framework (CAF), known as ‘LINCs’ in the local authority area during the time frame.   • The implementation of the supporting pupils at school with medical conditions guidance.  • Individual schools’ Special Educational Needs information reports.  • The legal requirements to make reasonable adjustments under the Equality Act (Education IMR).  • Children in Need plans (3rd December 2008 – 20th October 2009). Case closed to Alex but remained open under child in need regarding younger siblings (20th October 2009 to 1st October 2010). • 29th November 2010 – 2nd March 2011 Initial assessment by the Duty Assessment and Referral Team. The case was then transferred to the Children’s Social Work Team in another part of the local authority area to undertake a Core Assessment. The case remained with this team until closure on 20th December 2011. • 22nd February 2011 Section 37 report – private law related to contact between children and Martin.  • 2nd March 2011 – 4th September 2013 – Initial assessment and Core assessment.  The subsequent referral on 5th June 2013 was referred to Children’s Social Work Team, Disabled Children. An Initial Assessment and Core assessment was undertaken and the case remained open until the end of the relevant period to this team on a Child in Need basis.   • 4th September 2013 – 13th July 2014 – Child in Need (Section 17 under the Children Act 1989 as amended). There was a series of meetings referred to as ‘TAF’, multi-disciplinary, professional and ‘CAF’ meetings and the language used to describe them was used interchangeably. While every effort was made to share information by individuals, there was no central point, or lead to co-ordinate. Added to the confusion about the status of meetings, this meant that not all professionals were receiving or sharing information with all the other professionals involved. Learning: This suggests that practitioners need to be supported to enable them to understand and ask questions about the meetings they attend. They need to establish what procedures a meeting is delivering and make sure they are clear about the status, who chairs, takes minutes and who will deliver on each of the actions agreed. Practitioners should always take comprehensive records of their understanding of the commitments they made at the meeting.  Recommendation: the LSCB should provide specific communications about note taking and to clarify the importance of understanding the structures provided to share information and the importance of consistent language and terminology.   Page 42 of 47  Were the LSCB’s Threshold procedures understood and applied? The document in place at the time may have been understood. The application of it was challenging due to the fluctuating nature of the presentation of the family, the difficulties described above in information sharing and the prevailing concern to address Alex’s needs while sustaining a positive relationship with Jessica and her non and false compliance described in this review. There is a good example of this seen towards the end of 2011 when a formal child protection referral was made by the consultant paediatrician who, along with other colleagues believed that the threshold for formal child protection intervention was met based on the mother’s non-compliance with treatment. Compliance swiftly followed resulting in a more positive view of the family and agreement that Alex is a Child in Need and not a child in need of protection. These shifting sands are a recurring feature making it difficult for professionals to apply specific thresholds at any point in time. Learning: This suggests that children like Alex should have a clear multi-agency assessment of needs, informing a concise multi-agency plan which shows the implications of non-compliance and contingencies. Deviations from the plan are then clear and the contingency plans invoked promptly, enabling swift visibility of escalating concerns and safe practical application of the threshold guidance. All professionals working with children with complex needs should be engaged with the same process. Understanding the shifting natures of parental compliance can be seen if a retrospective view is taken over, for example the last year and not just based in recent events.  Recommendation: Decision making in practice should include the history of the family, using chronologies and dating back at least one year in order to determine if recent change is sustained. If there were professional disagreements about the case, was the escalation procedure used? No. This review has identified opportunities where child protection concerns should have generated child protection procedures. This review has also identified that social care’s prevailing view dominated the assessment of the family’s circumstances and new information was not absorbed into that prevailing view. Efforts were made by the school and clinicians to suggest that concerns were serious and warrant child protection procedures, so challenge was provided at operational level but does not appear to have been robustly followed through.  In reviewing IMR’s, the term “escalation” appears to be used to describe efforts made by partners to change the status of the case from, for example, Child in Need to Child protection.  The term is not used to describe raising the concerns with senior management.   Page 43 of 47  There are implicit suggestions in the IMR’s about raised concerns, but there is no evidence to suggest that any professional formally used the professional disagreement procedure in place at the time to provide challenge.  There are references in the school IMR’s to the term “escalation” procedures which upon close scrutiny are not borne out by the available evidence.  There were occasions, such as at meetings when professionals agreed together that they had child protection concerns but this did not carry forward into subsequent meetings.  Practitioners working with the family made extraordinary efforts to continue to provide support in these difficult circumstances but did not avail of mechanisms they have to provide formal challenge. The LSCB procedures provide 2 key facilities that might have helped them: • The professional disagreement procedure (revised and renamed as the “professional dispute resolution procedure” in 2016), and  • Case learning meetings.  The former helps address operational disagreements and the latter an opportunity to explore challenging cases in a safe environment. Practitioners were largely affected by the following key obstacles to their views being heard: • Confusion about the status of information sharing and misunderstandings about processes, including TAF, CAF and CIN processes.  • An inability to listen to each other so that the information can be clarified processed, absorbed and clearly understood. A case learning meeting may have helped them with this. • A persistent attachment to the notion that repeated sharing of concerns will eventually result in appropriate action and an associated resistance to raise the concern with senior managers. • A prevailing view of the family as one in need of support and an inability to incorporate new information to change that view. During the period of this review, professionals worked tirelessly with this family to try to make Alex’s life as comfortable as it could be and they were continually concerned about neglect but, with the exception of the formal referrals were unable to articulate it effectively or to provide challenge to the prevailing assumptions and so their voice was not heard. Availing of the existing processes, including policies and procedures around challenge and escalation, as well as management support, would have helped them to move their concerns forward.  Learning:  In practice, neglect can be obscured by the complexity of a child’s needs and by the important need to sustain positive support to the child’s parents/carers.  Page 44 of 47  There is a need to provide a formal structured information sharing facility where there are concerns about neglect. The language used and narrative around professional challenge and disagreement needs to be clear and explicit. “Escalation” should be a term used to describe the raising of concerns to senior management and not to describe the view that the status of a case should change from child in need to child protection. Practitioners appear resistant to using the available processes that might help them when they feel their concerns are not being heard. There is a suggestion that they may not always get the support from senior managers that they need in order to use these processes. Recommendation: The new LSCB dispute resolution procedure should be actively promoted and supported by leaders and managers in partner agencies and a new language used to ensure professionals are supported and confident to challenge skilfully. Case learning meetings should be promoted to enable practitioners to explore their concerns together and come up with viable solutions.    Page 45 of 47   References and bibliography   ACT (2011):  (Association for Children’s Palliative Care), Valuing Short Lives  Children’s palliative care Handbook for GPs, First edition, March 2011 Anderson DH:  Cystic Fibrosis of the pancreas and its relation to celiac disease. A clinical and pathological study; Arch Dis Child 1938; 56: 244-99.  Barr HL, Britton J, Smyth AR, Fogarty (2011) : Association between socioeconomic status, sex, and age at death from cystic fibrosis; BMJ. 2011 Aug 23; 343  Badlan, K. (2006): Young people living with cystic fibrosis: an insight into their subjective experience; Health Social Care Community 14(3): 264-270. Besier, T., et al. (2011):  Anxiety, depression, and life satisfaction in parents caring for children with cystic fibrosis; Pediatr Pulmonol 46(7): 672-682. Berge, J. M. and J. M. Patterson (2004): Cystic fibrosis and the family: A review and critique of the literature; Families, Systems and Health 22(1): 74-100. Bluebond-Langer, M.,et al. (2013): “ Preferred place of death for children and young people with life-limiting and life-threatening conditions: A systematic review of the literature and recommendations for future inquiry and policy; Palliative Medicine 27 (8) 705-713.  Boling, W. (2005): The health of chronically ill children: lessons learned from assessing family caregiver quality of life; Fam Community Health 28(2): 176-183. Butchart, A., Harvey, A., Mian, M and Kahane, T (2006):  Preventing child maltreatment, A guide to taking action and generating evidence; Geneva: World Health Organisation.  Casier, A., et al. (2011): Acceptance and well-being in adolescents and young adults with cystic fibrosis, a prospective study; Journal Pediatr Psychol 36(4) 476-487. Connell-Carrick K (2003): A critical review of the empirical literature: Identifying correlates of child neglect; Child and Adolescent Social Work Journal 20 (5), 389 – 425.  Cramm, J. M., et al. (2013): The importance of general self-efficacy for the quality of life of adolescents with chronic conditions;  Social Indicators Research 113(1): 551-561.  Cystic Fibrosis trust (2011) consensus documents. https://www.cysticfibrosis.org.uk/the-work-we-do/clinical-care/consensus-documents Daniel, B., Taylor, J and Scott, J (2012): Recognition of neglect and early response,  Overview of a systematic review of the literature;. Child & Family Social Work 15 (2), 248-257.    Page 46 of 47  Donahue, S.M., et al., (2010): Trends in birth weight and gestational length among singleton term births in the United States 1990-2005; Obstect  Gynecol, 2010. 115 (2 Pt 1): p 357-64.  Driscoll, K. A., et al. (2009): Relations between depressive and anxious symptoms and quality of life in caregivers of children with cystic fibrosis; Pediatr Pulmonol 44(8): 784-792. Editorial (2014): Standards of Care for Cystic Fibrosis ten years later;  Journal of Cystic Fibrosis 13  S1-S2.  Havermans, T., et al. (2011): Siblings of children with cystic fibrosis: quality of life and the impact of illness; Child Care Health Dev 37(2): 252-260 (subscription may apply). Hegarty, M., et al. (2009):  Quality of life in young people with cystic fibrosis: effects of hospitalization, age and gender, and differences in parent/child perceptions; Child Care Health Dev 35(4): 462-468. Hershkowitz, I., M.E. Horowitz, D (2007):  Victimization of children with disabilities; American Journal of Orthopsychiatry, 77 (4): 629-635.  Herzer, M., et al. (2009):  Interactions with parents and friends among chronically ill children: examining social networks; J Dev Behav Pediatr 30(6) 499-508. Hildyard, K and Wolfe, D. (2002): Child neglect: Development issues and outcomes; Child Abuse and Neglect 26 (6), 679 – 695.  HM Government (2015) Working together to safeguard children: A guide to inter-agency working to safeguard and promote the welfare of children; London: Department for Education.  Jones, L., Bellis, M,A., Wood, S., Hughes, K., McCoy, E., Bates, G., Mikton, C., Shakespearem T., and Officer, A. (2012): Prevalence and risk of violence against children with disabilities, a systematic review and meta-analysis of observational studies; The Lancet 380 (9845), 899-907 July 2012.  Manly, J., Kim, J., Rogosc, F and Cicchetti D (2001): Dimensions of child maltreatment and children’s adjustment, Contributions of developmental timing and subtype; development and Psychopathology 13 (4), 759-782.  McClellan, C. B. and L. L. Cohen (2007): Family functioning in children with chronic illness compared with healthy controls, a critical review; J Pediatr 150(3): 221-223, 223.e221-222. MacKenzie, T.,et al.,(2014): Longevity of patients with cystic fibrosis in 2000 to 2010 and beyond; survival analysis of the cystic fibrosis foundations patients registry; Ann Intern Med, 2014. 16 (14): p. 233 -41.    Page 47 of 47  McDougall, R. J., et al. (2014): Overriding parents’ medical decisions for their children: a systematic review of normative literature; Journal Medical Ethics 40: 448-452.  Meltzer, L. J. and J. A. Mindell (2006): Impact of a child's chronic illness on maternal sleep and daytime functioning; Arch Intern Med 166(16): 1749-1755. Moola, F. J., et al. (2012): No time to play": perceptions toward physical activity in youth with cystic fibrosis;  Adapt Phys Activ Q 29(1): 44-62. Moussavi, S., Chatterji S., Verdes E., tendon, A., Patel, V., and Ustun, B.(2007): Depression, chronic disease, and decrements in health, results from the world surveys; Lancet 2007: 370:851-8.   Ofsted (7 July 2016): “Local Autority” Inspection of services for children in need of help and protection, children looked after and care leavers and Review of the effectiveness of the Local Safeguarding Children Board.   Oliver, M. (1990): The individual and social care models of disability. Workshop on the Living Options Group and the Research Unit of the Royal College of Physicians. Oliver, M and Barnes, C. (2012): The New Politics of Disablement; Tavistock: Plagrave/ Macmillan (in press).   Petrenko, C., Friend A., Garrido, E., Taussing H and Culhane., (2012): Does subtype matter? Assessing the effects of maltreatment of functioning in preadolescent youth in out-of-home-care; Child Abuse & Neglect 36 (9), 633 – 644.  Pinquart M, Shen Y. (2011): Depressive symptoms in children and adolsecents with chronic physical illness, an updated meta-analysis; J Pediatr Pschol 2011; 36:375-84.  UK Cystic Fibrosis Registry 2014: Annual Data Report, Published August 2015 ©; Cystic Fibrosis Trust 2015 at page 10.  