Arising from. Death of a child whilst detained under The Mental Health Act 1983 (S3) The Final Overview Report. Pip. August 2017

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1 A Serious Case Review commissioned by Stockport Safeguarding Children Board under Regulation 5(1) (e) and (2) of the Local Safeguarding Children Boards Regulations 2006 Arising from Death of a child whilst detained under The Mental Health Act 1983 (S3) The Final Overview Report Pip August 2017 Page 1 of 99

2 Index 1 Introduction and context Purpose and circumstances of the serious case review Understanding about eating disorders and anorexia nervosa in particular General context Rationale for conducting the serious case review The scope of the review Agencies who provided information to the serious case review Family contribution to the serious case review Summary of contact and significant events between January 2013 and December First reporting of eating difficulties December First hospital admission February Parents first request for specialist inpatient treatment March Significant strain in working relationships between family and professionals in March Second hospital admission April Third hospital admission May First specialist inpatient treatment May Pip discharged from specialist inpatient treatment and returns home October Re-emergence of eating disorder February 2014 and stepping down of the CPA Fifth hospital admission August Pip s refusal to eat in hospital and discussion of tube feeding August Pip detained for treatment under section 3 of the Mental Health Act 1983 and admission to Tier 4 specialist hospital Mother finds suicide letters and a noose in Pip s bag in February Transfer of care coordination of community CAMHS to Trafford is discussed Pip s parents express worries about her threats of attempting suicide in response to boundaries Plan for hospital discharge raised in August The social work assessment initial analysis queries whether Pip is well enough to be discharged Mental health trust advise the Priory Hospital Altrincham that an AMHP will not be allocated or have undertaken an assessment by the date of the proposed discharge meeting Final risk assessment by the Priory Hospital Altrincham indicates no current suicidal ideation Pip leaves the Priory Hospital Altrincham on home leave Analysis of professional practice Voice of the child and understanding their perspective Response to concerns about self-harm including the eating disorder Therapeutic services and practice Assessment and care planning using parallel pathways and legislation Risk assessments whilst Pip was a detained inpatient under the Mental Health Act Advocacy and information provided to Pip and family Page 2 of 99

3 3.7 Key messages about systems, service and practice Findings for learning and improvement Cognitive influence and human bias in processing information and observation Reflection for learning Glossary Page 3 of 99

4 1 Introduction and context 1.1 Purpose and circumstances of the serious case review 1. The bereavement following 15 year old Pip s tragic death has been most acute for her family and friend. Pip died in December 2015 having been struck by a train. The heartfelt condolences of the serious case review panel and of the Stockport Safeguarding Children Board are extended towards all of them. Pip s death also had a profound impact on the people who worked with and cared for Pip. 2. This report describes the findings from a serious case review commissioned by the Stockport Safeguarding Children Board (SSCB). The main work of the review was completed in 2016 and the draft findings were provided to the SSCB and to the coroner s inquest. The overview report was not finalised until after the inquest in 2017, and after Pip s mother and father had felt able to meet with the independent reviewer who is the author of this report, together with the Business and Performance Manager for the Stockport Safeguarding Children Board, in July Thereafter a meeting was arranged for August 2017 with the Executive Nurse and the Designated Nurse at Stockport Clinical Commissioning Group, so that Pip s parents could also share their views about the care they received. A summary of that meeting was provided to the independent reviewer and Stockport Safeguarding Children Board. 3. The coroner s inquest concluded that Pip s death was suicide. The inquest identified possible contributing factors to be insufficient family therapy in supporting the management of boundaries, a failure to implement a care plan in a timely manner when Pip left hospital in December 2015 together with a lack of cohesiveness among agencies. The inquest also identified inadequate communication about heightened suicide risk, inadequate engagement with community services and no relationship with future care providers. The coroner issued a statutory letter under regulation 28 of the Coroners (Investigations) Regulations 2013 requiring the Priory Hospital to review its policy regarding family therapy and non-engagement and for the Priory Hospital together with NHS England, the Pennine Care NHS Foundation Trust and the local authority to liaise with each other and any other relevant body to review the discharge process from inpatient to community care to identify good practice and to formulate a standardised and safe discharge procedure with a clear lead organisation and person. 4. At the time of Pip s tragic death she was on home leave whilst being treated for anorexia nervosa as a detained patient under section 3 of the Mental Health Act 1983 at a specialist controlled access hospital, operated by the Priory Group, which has a specialist unit in Greater Manchester with a specialist remit in treating eating disorders including anorexia nervosa. It is Pip s status as a detained patient that triggered the statutory threshold for commissioning a serious case review as set out in the relevant regulation and national guidance 1. 1 Working together to safeguard children: a guide to inter-agency working to safeguard and promote the welfare of children Page 4 of 99

5 5. The term anorexia nervosa and anorexia are both used in this report. In both references it is anorexia nervosa that is being discussed. Anorexia is a general loss of appetite, or a loss of interest in food. Anorexia nervosa is a serious mental illness. Patients have not "lost" interest in food; they have intentionally restricted their food intake as discussed later in this report. 6. For the purpose of clarity the use of acronyms is kept as far as possible to a minimum. Family members are referred to by their relationship to Pip such as mother, father or sibling for example. Professionals are referred to by their roles such as consultant psychiatrist or CAMHS consultant, dietician, mental health practitioner, GP, teacher or social worker for example. 7. In addition to the footnotes provided in the report to explain the significance or meaning of particular terms or information there is an extensive glossary in the appendix at the rear of the report. 8. As a statutory procedure the serious case review examines, for the purpose of professional learning and the continuing improvement of services to safeguard children at risk from significant harm, the response of organisations and the appropriateness of professional support given to Pip between January 2013 and December In the spirit of candour, there is an expectation for the serious case review to consider whether Pip s tragic death was either predictable or preventable. 10. Pip had made threats of serious self-harm and her parents in particular had expressed their great anxiety about Pip s use of threats when boundaries were being applied in regard to meal plans or exercise. There were other protective and resilience factors which included Pip s stated concern about the impact on her family if she ever did seriously injure herself or worse. 11. This report provides an account of very significant levels of professional support and response to Pip s risk from harm which focussed primarily on her eating disorder and the associated compulsion to exercise to the level of causing significant physical harm to herself. 12. The particular circumstances of Pip s death could realistically only have been prevented by a professional decision or action if Pip had not been allowed home leave in December The matter of the community treatment order (CTO) that is discussed later in the report has no bearing given the responsible clinician for Pip retained legal authority to recall Pip back to the specialist hospital if necessary. 13. The fact that Pip had not made a complete recovery from her anorexia nervosa and associated behaviours and thoughts was recognised. The risk from extended hospitalisation was also taken into account. The limited progress in developing a strong enough therapeutic relationship between Pip, the family and the various clinicians in community and hospital settings was also a factor of significance. It is also a fact that a key relationship with the local CAMHS had broken down during 2014 although a good working relationship had been established with children s social care during their assessment in late Page 5 of 99

6 14. Although the review identifies areas of learning in what is some of the most complex professional work in regard to risk assessment and treatment, the review has not identified any single organisation, individual or act that could have prevented the tragic death of Pip. This is not to say that if the relationship with local CAMHS had been different there would not have been different and improved opportunities for therapeutic and practical support. 15. The clinical team and parents were all working with a common objective of helping Pip maintain a regime of eating and exercise that minimised harm to Pip. 16. Pip s parents are critical about how some services were provided. Significant issues for them is the limited knowledge and understanding that some professionals have about anorexia and particularly in its most severe condition, a lack of understanding about the support needs of families, the absence of a consistent professional in whom they felt they had enough confidence about the professional s knowledge of anorexia and their capacity to offer the required levels of practical and emotional help. 17. Stronger engagement in the therapy would have created improved opportunity for helping develop clearer insight regarding how the condition of anorexia had such a damaging impact on Pip s own cognitive processing and the wider impact it has also for the family; it could have created a different context for what was a very distressing set of circumstances for everybody concerned. 18. As will become clear in reading the report, the engagement of children and their families in the care and treatment for anorexia, and self-harm generally, is integral to achieving effective help and intervention. Understanding what promotes good engagement and conversely what inhibits it, is a critical aspect of the learning and about which the review wants to have the fullest possible level of information. Pip s parents feel that they prevented from being able to use services such as family therapy to talk about issues that were a concern for them as a family and that the timing of sessions was also an issue given the parents were trying to continue working and be available for Pip and to respond to emergencies. 19. Action was taken to address the very serious risk to Pip s health and is described in this report along with the frameworks of guidance, legislation and understanding about best practice informed by relevant research. Professional action involved using legal powers to control and constrain the potential for harm to Pip. It is also a fact that living in a specialist hospital had its own potential deficits in regard to the long-term health and recovery of a young person such as Pip. This dilemma forms the context within professionals were making decisions with Pip and the family and which the review explores in regard to the opportunities for learning. 1.2 Understanding about eating disorders and anorexia nervosa in particular 20. Anorexia nervosa has the highest death rate among all psychiatric disorders and is increasing. Nationally, the numbers of young people being admitted to hospital in the UK with an eating disorder has risen from 1,910 in to 2,703 in Although there Page 6 of 99

7 is a grave shortage of inpatient eating disorder beds across the UK with some parts of the country having little or no provision, Pip was able to access a specialist service close to home and without undue delay once the decision was made to use such a resource. 21. The parents asked for an admission to specialist inpatient treatment as early as March This was within weeks of the anorexia being initially diagnosed. It was discussed with the family on a number of subsequent occasions. The effort initially was to engage Pip and the family in community treatment services in association with specialist paediatric resources including inpatient hospital care. Pip s parents are critical that when she became very unwell and had lost a great deal of weight, Pip was admitted to general paediatric services rather than being treated in a specialist unit earlier; they felt the paediatric staff did not understand anorexia. 22. Anorexia nervosa is a serious and as shown in this tragic case, a potentially very dangerous eating disorder that usually develops in adolescence and has a profound impact on the child and also upon those who are close to them. It can be a very distressing, powerful and overwhelming condition for the child and for families providing care and this was certainly the case for Pip and family. The level of severity is not uniform; it is a condition that children and young people can make a recovery from, whereas for some others the condition can be much more long-term. 23. There are many factors that both create the latent conditions for anorexia to develop as well as for having an impact on the effectiveness of treatment and support. Eating problems such as anorexia are not just down to food; they are as much about feelings and it is those feelings and how they influence the child s relationship to food, themselves and to other people that are fundamental to making a recovery. 24. The exact causes of anorexia remain unclear although most specialists believe that it is likely to be the result of a combination of different factors that include psychological, environmental, biological and genetic factors. Unsurprisingly therefore, the development of appropriate treatment is complex for even the most experienced and specially trained professionals and certainly for the families and children concerned. 25. Anorexia nervosa may develop because of a wish to be in control of something at a stressful time or it might be because of dieting and not being able to stop because of a poor selfimage of the body. It may also be because of wanting to be popular or linking being slim with success and wanting to look like models or celebrities for example. Depression, low selfesteem or anorexia can be in response to something that has happened. The anorexia can be a reflection of more than just one element. Young people with anorexia often feel that things will be better if they are thinner. 26. Anorexia is about ten times more prevalent for girls than for boys with about one in every 150 girls experiencing some form of anorexia nervosa although for the majority, the symptoms will not be anything as severe as they were for Pip and will not require any inpatient treatment. Page 7 of 99

8 27. Anorexia represents a risk of self-harm and for a minority the self-harm can become suicidal. The approach to this review has been within the context of looking at what implications there are arising from Pip s tragic death in regard to preventing death and serious injury arising from self-harm represented by an illness such as anorexia. 1.3 General context 28. The treatment and care of young people at risk of significant harm from self-harm inevitably involves many different professional disciplines, legislation, codes of practice and even ethical frameworks which are described in the glossary and in the relevant footnotes throughout the report. 29. Inevitably there is a high degree of complexity for children, their families and the various professionals in navigating the best pathways to recovery for a child with a significant level of self-harming behaviour such as anorexia nervosa. 30. Although the use of medication and of skilled physical, psychological and therapeutic health care is important in helping treat anorexia nervosa, it is by no means the total remedy, primarily offering some amelioration of the symptoms and physical consequences rather than causal factors. Research and experienced professionals working in this very complex and difficult area understand all too well that it is dealing with the underlying factors through talking therapies that are fundamental to achieving effective outcomes. 31. This is not easy for children already going through great distress and making the transition through adolescence or for their families who can be baffled, confused and disorientated by an illness that seems so counterintuitive in the self-denial of sustenance and can initially be out of character from their child when they were younger. 32. In developing the most appropriate treatment, it requires an understanding about the capacity, insight and competency of the young person to understand and make sense of their circumstances. Capacity, insight and competency have particular meaning and significance to different professionals working in the arena of mental health and safeguarding and are examined later It also requires the whole family having the capacity to be engaged in what can be a very difficult process that tests the emotional, physical and psychological limits of their resilience and understanding. 2 The concept of capacity as defined by The Mental Capacity Act 2005 (MCA) at present only applies to an individual aged 16 and over, the principles have relevance and are designed to protect and empower individuals who may lack the mental capacity to make their own decisions about their care and treatment. If a child under 16 is not under a formal care order, his/her parents can authorise deprivation of liberty in the exercise of parental responsibility, for instance, in a hospital, or NHS facility or day care regardless of the child s personal mental capacity taking account of the child s competence. Page 8 of 99

9 34. The delivery of CAMHS in local areas is through four tiers of provision and the report refers, for example, to community CAMHS or tier 4 or inpatient CAMHS as well the more generic references to CAMHS. In Stockport the CAMHS is now known as Healthy Young Minds, although for the purpose of the report the generic term community CAMHS is used. 35. Tier 1 describes universal services found in education and primary health settings for example; tier 2 is targeted support for children with milder levels of difficulty or to specific groups at increased risk of developing mental health problems; tier 3 are specialist multidisciplinary services. Because of the pace and escalation of Pip s anorexia it is the higher level CAMHS in conjunction with other resources such as specialist paediatrics that worked with Pip and the family. 36. The three levels of community CAMHS are commissioned in local areas with varying combinations of input from clinical commissioning groups and local authorities across England. Tier 4 is the specialist day and inpatient services commissioned and case managed by NHS England that does not involve local statutory organisations such as the local authority or health commissioners and is operated by different and often independent providers across England as in this case. At the time of death Pip was being treated as an inpatient at the Priory Hospital Altrincham (a tier 4 hospital with a specialist unit for children and young people with an eating disorder). 1.4 Rationale for conducting the serious case review 37. Regulation 5 of the Local Safeguarding Children Board Regulations 2006 requires local safeguarding children boards to undertake a review in accordance with the criteria and procedures that are set out in chapter four of Working together to safeguard children (2015). 38. A local safeguarding children board should always undertake a serious case review when a child dies or has been seriously harmed and abuse or neglect is either known or is suspected and there is cause for concern as to the way the authority, the local safeguarding children board or other relevant persons have worked together. 39. Even if one of the criteria is not met, a serious case review should always be carried out when a child dies in custody, in police custody, on remand or following sentencing, in a Young Offender Institution, in a secure training centre or secure children s home. The same applies where a child dies who was detained under the Mental Health Act 1983 or where a child aged 16 or 17 was the subject of a deprivation of liberty order under the Mental Capacity Act It is this last criteria that met the threshold for a statutory review. 40. The circumstances of Pip s death were discussed at a meeting of the serious case review consideration panel who agreed that a serious case review should be commissioned. Pip was a detained patient under section 3 of the Mental Health Act and died during home leave from the tier 4 inpatient service. Pip had a history of self-harm and had presented with suicidal ideation. The care and treatment of Pip had involved several different services. The recommendation was ratified by the independent chair of the Stockport Safeguarding Page 9 of 99

10 Children Board (SSCB) and the Department for Education, Ofsted and the National Panel of Independent Experts were notified of the decision. 41. There is an expectation that a serious case review should be completed within six months of being commissioned. This is intended to ensure any learning is identified and acted upon to promote the protection of children from harm as quickly as possible and to also minimise any avoidable distress to families waiting to know about the outcome of the review. 42. There was a delay in convening the initial panel and collating evidence after the initial scoping. This arose because of workload associated with other serious case reviews and the implications that had for services providing the quality of input required and the capacity of the local safeguarding board to manage the process. The board also wanted to ensure that they had secured the involvement of an independent reviewer with the required level of knowledge and experience associated with the circumstances of Pip s care to facilitate and complete the serious case review and report. 1.5 The scope of the review 43. The timeline for the review from January 2013 until December 2015 includes the initial diagnosis of an eating disorder and the use of the Mental Health Act 1983 to provide treatment to Pip, the arrangements for inpatient care and for home support, including assessments by mental health and children s social care services. This includes how risk assessments were conducted and the process for managing the risks and the needs that Pip presented. It also examines the arrangements for Pip to be at home in December 2015 when the fatal collision occurred. 1.6 Agencies who provided information to the serious case review 44. The following agencies provided information and have participated in the serious case review: a) Adult Mental Health Service Stockport Council and Pennine Care NHS Foundation Trust regarding the assessment for treatment by an approved mental health practitioner and referral to undertake an assessment in relation to a community treatment order (CTO); b) Central Manchester University Hospitals NHS Foundation Trust regarding the provision of paediatric care and emergency treatment including Galaxy House, Royal Manchester Children s Hospital, clinical psychology, dietetics, endocrinologist and family therapy services; c) Pennine Care NHS Foundation Trust regarding the provision of child and adolescent mental health services (CAMHS) in Stockport and Trafford; the same foundation also has mental health staff seconded from the local authority to provide mental health services including approved mental health approved professionals (AMHP); d) Stockport Children s Services regarding the integrated children s services, children s social care and safeguarding and services for young people; this covers referrals via the Page 10 of 99

11 multi-agency safeguarding hub (MASSH), notifications of a child placed at a hospital for 3 months or more, request for a specialist fostering placement, assessments and support planning; e) School based professionals provided information about arrangements and Pip s participation in education including a placement in a pupil referral unit (PRU); f) Stockport Clinical Commissioning Group provided information about general practitioner medical services (GP); g) Stockport NHS Foundation Trust regarding dietetic, paediatric and emergency treatment including Stepping Hill Hospital and school nursing. h) The Priory Hospital Altrincham regarding inpatient care provided at the tier 4 CAMHS under the Mental Health Act The Greater Manchester Police provided information regarding one contact that they had with Pip when she collapsed at a supermarket in August Other than that contact and following the tragic death of Pip there has been no other contact with the police. 46. The Care Quality Commission (CQC) who inspect and regulate the provision of tier 4 CAMHS in hospital settings were notified of the serious case review. 1.7 Family contribution to the serious case review 47. Pip was the youngest of four siblings. At the time of Pip s admission to the tier 4 hospital in September 2014, then aged 14, the siblings were aged 24, 17 and 16 years old respectively. 48. Mother and father were informed of the serious case review at the outset and met with the chair of the serious case review panel and the performance and development manager for the SSCB. They accepted an invitation to meet with the independent reviewer and the performance and development manager which was scheduled to take place in June The meeting was intended to discuss the terms of reference for the review along with its purpose and to provide an opportunity for Pip s parents to tell their story and to highlight any particular issues they wanted the review to be aware of or to consider as began its work. 49. The parents felt unable to meet on the scheduled date and the meeting was postponed. The independent reviewer wrote a letter to the parents and asking to meet with them as and when they were able to do this. They were also encouraged to provide any information they wanted to make available to the review. 50. Understandably, the parents felt unable to have any involvement with the review until July 2017 and after the review had done its substantive work. During a three hour meeting in July 2017 Pip s parents provided a clear account of how they felt, with some individual exceptions, that the majority of people had not sufficiently understood how severe Pip s Page 11 of 99

12 anorexia was or about how it had such an overwhelming impact on Pip and upon the family in general. 51. The parents feel that some health professionals treated them as trouble makers and bad parents when they tried to raise concerns about Pip s health. They felt at times as if they were being blamed for Pip s illness. They are critical about decisions to treat Pip in a general paediatric hospital when she became so physically unwell. They also feel that community CAMHs are not sufficiently knowledgeable about anorexia and need to be improve how they relate to families and the quality and applicability of advice being provided. Issues highlighted were different staff dealing with them, a need to constantly retell their story as well practical issues such as staff not arriving at scheduled times to undertake particular tasks. 52. The parents described how the illness appeared to arrive very suddenly; Pip s father described it being like a rush of leaves being blown on a gust of wind through a door. In hindsight they say that the behaviour that Pip initially displayed such as increasing her exercise regime and being careful about her diet seemed a good thing but over months this had morphed into the anorexia that became so damaging. 53. The parents feel that none of the professionals had a good enough understanding about how devastated and exhausted families become when dealing with anorexia nervosa or about the practical issues that families have to deal with such as balancing a need to earn an income and to deal with the unpredictability associated with an anorexic child with severe symptoms. 54. They felt that some professionals provided unrealistic advice or failed to keep to arrangements such as supervising meal times when they would arrive late. They described some examples of poor care such as bed pans not being emptied or staff eating snacks and drinking soft drinks when supervising Pip on a hospital ward. Some of these staff had no training in regard to anorexia and for example the use of soft drinks as a laxative to help purge weight. They described how some health staff were unable to recognise signs and symptoms of fluid loading by Pip to disguise her declining weight. 55. Advice on managing issues such as keeping to an eating plan were also problematic. Often Pip would be unwilling to eat the meal prepared at home that had been agreed with the clinical team and Pip s parents were told that they should just not offer any food at all and if she became unwell she would be readmitted to hospital. The family found this very difficult and indeed impossible to accept and was an example of where relationships with the professionals came under very great strain. 56. They felt that they had to do a lot of research themselves and were always several steps behind with Pip in regard to her anorexic behaviour and illness. Page 12 of 99

13 2 Summary of contact and significant events between January 2013 and December First reporting of eating difficulties December It is recorded that Pip s parents felt the eating disorder had initially emerged in 2012 just after the transition to secondary school, where Pip was reportedly competing with a popular pupil at the school and who had an eating disorder. It was in December 2012 that Pip s parents began to realise that Pip was eating very little and had lost a great deal of weight. They sought advice and help from the GP on the 28 th January 2013 where mother raised her concerns about 13 year old Pip s eating and the high level of exercise by Pip. No concerns were raised about body image. Pip was referred to the practice nurse with a view to making a referral to a dietician for support if necessary. 58. In early February 2013 Pip s mother telephoned the pastoral care coordinator at Pip s school to express her concern about Pip not eating her lunch at school and had found half-eaten food in Pip s bedroom. 59. A follow up consultation with a second GP lasted 90 minutes (far longer than the usual patient allocation) on the 21 st February 2013 with their mother and Pip s sibling (although Pip was also seen by the GP on her own as well). The GP advised Pip that there was a possibility she would require medical admission due to concerns about her medical health. The GP consulted with the paediatric registrar and with the CAMHS duty worker and was advised firstly by the paediatric registrar that an urgent and immediate admission to hospital from a medical perspective was not required at that stage. Subsequent contact with CAMHS was made and they advised that admission for medical assessment would need to take place as a priority and that CAMHS would assess Pip following this. The GP followed this up with an urgent referral by fax to CAMHS as directed by the duty worker the same day. 2.2 First hospital admission February On the 22 nd February 2013 Pip was admitted to the paediatric ward at Stepping Hill Hospital having refused to eat. A first time eating disorder was diagnosed; Pip was very poorly, had low blood glucose, weighed 32.4 kgs and had a BMI (body mass index) of and was below the 0.4 th centile 4. Pip s care was delivered in accordance with the CAMHS Eating Disorder Pathway. The CAMHS team were working with Pip who had seen a psychiatrist saying that she didn t want to live. Mother informed the school about the admission the 3 Body mass index (BMI) is a measure of body fat based on height and weight that applies to male and females. The BMI categories are: Underweight = <18.5 Normal weight = Overweight = Obesity = BMI of 30 or greater 4 Centile charts show the position of a measured parameter within a statistical distribution. They do not show if that parameter is normal or abnormal. They merely show how it compares with that measurement in other individuals. They are called centiles and not per centiles. If a parameter such as height is on the 3rd centile, this means that for every 100 children of that age, three per cent would be expected to be shorter and 97 taller. On the 97th centile, 97 would be shorter and three taller. Page 13 of 99

14 same day and was very distressed. Tuition on the ward was provided by a specialist pupil referral unit (PRU) from the day of admission. 61. A CAMHS mental health practitioner visited Pip on the ward on Sunday the 24 th February 2013 and completed a Trust Approved Risk Assessment (TARA) and a patient assessment document (PAD). Pip was referred to the In-Reach Out-reach service (IROR) 5. A referral was also made to the dietetic service the same day. 62. A dietician reviewed Pip s meal plan on the 25 th February 2013 noting that Pip was very cross and unhappy and that parents felt frustrated and want something doing. Pip s parents told the reviewer that they were very worried about Pip s health and felt more specialist help was needed. Pip s weight was 32kgs compared to the 43.5kgs that Pip should have been in proportion to their height and was therefore very underweight. According to the dietician s history taking Pip had been reducing her meal portions for six months and increasing her level of exercise at the same time. Pip s intake of food over the weekend had been inadequate and there was an urgent need to begin a daily intake of 800cals per day which was described as life saving treatment. The choice of food supplements and the method of administration were discussed with the consultant; it was agreed that tube feeding might become an option if the food or supplement could not be managed by Pip. 63. On the 25 th February 2013 mother reported that Pip had expressed a wish to kill herself. This is the first record from the family of an expressed wish by Pip to harm herself. The assessment confirmed that Pip had never acted upon any thought to kill herself and during the assessment she denied having any suicidal ideation. 64. On the 26 th February 2013 Pip provided a four page hand written letter to the dietician. The letter reflected the extent to which the anorexia was taking control of Pip s cognitive processing of information; the letter essentially was an effort to influence decision making and Pip not wanting to be fed. The letter had been prompted by a decision to use tube feeding if Pip could not manage an intake of 800kcals per day. The level of Pip s malnourishment was also having an impact on Pip s mental functioning as well as having serious physical risk. Pip s diet was the subject of detailed reviews by the dietician lasting minutes on almost a daily basis until discharge on the 15 th March The same CAMHS practitioner who had already seen Pip on the ward saw her on the 27 th February 2013 with the CAMHS consultant. The contact with the CAMHS had been allocated to the CAMHS service rather than through the weekend general duty cover arrangements. The family expressed confusion about the meal plan that had been developed. Pip was also frustrated with having a nasogastric (NG) tube inserted as well as being given food. During the meeting Pip began exercising vigorously. 5 The IROR service supports young people in the community and works closely with both community Healthy Young Minds teams and inpatient CAMHS service providing intensive home support to young people to avoid hospital admission where possible. Where young people are admitted to hospital, it provides extra support to ensure they avoid lengthy hospital stays. The team works with a range of mental health difficulties, including depression, self-harm, psychosis and anorexia nervosa or other eating disorders. A nurse is assigned to a young person and is responsible for planning, delivering and evaluating their care. Page 14 of 99

15 66. Pip appeared to make progress to increasing the intake of solid food. On the 1 st March 2013 the dietician noted a significant improvement in oral intake and that Pip was more cheerful and motivated to return home. Pip reported having an understanding about how ill she had become, and had spoken with her father and appeared to acknowledge a previous lack of insight. 67. A meeting with parents, Pip and the CAMHS consultant with the mental health practitioner on the 4 th March 2013 noted that father expressed being pleased with progress and that Pip was managing to eat three meals per day. Although Pip still had a reduced pulse rate it had improved. Advice was given on the parameters around the BMI that was required, along with pulse rate to be maintained to remove the NG tube and to reintroduce mobility. Daily leave with parents to have three meals a day was granted. Pip was not subject of any legal order; the treatment was administered with the consent of Pip s parents and apparently with Pip s as well (given her age and the need to consider her competence to consent or refuse treatment). 68. Two days later on the 6 th March 2013 Pip was noted to have a low pulse rate and parents expressed concerns about managing Pip at home due her excessive exercise and intake of fluids. Home leave was cancelled. Pip was less engaged with staff, was swinging her legs constantly and doing push-ups in the bathroom for example, all of which were contributing to a loss of weight. Pip stated that she no longer had anorexia as she was now eating and the NG tube had been removed. 69. Pip developed a gastro intestinal disturbance that caused some further loss of weight and Pip described feeling homesick. Psychoeducation around the impact of restricted food intake and excessively exercising and introducing distraction techniques were provided. 70. On the 11 th March 2013 a review with the consultant and Pip s parents acknowledged that there had been some deterioration. Pip s parents were described by the CAMHS consultant as frazzled and they were exploring in-patient treatment at the Priory Hospital Altrincham. It was agreed that Pip would be referred for admission after the next scheduled review on the 15 th March 2013 if there had been no improvement. 2.3 Parents first request for specialist inpatient treatment March Pip s mother made contact with the GP practice on the 11 th March 2013 to ask about the possibility of seeking funding for Pip to move to the Priory Hospital Altrincham. Pip was not keeping to the meal plan and was constantly exercising. Two days later on the 13 th March 2013 it was judged that Pip was just about coping with increased quantities of food and was not exercising and had gained weight although no specific weight is included in that dietetic record but is included in the record on the 15 th March. 72. At that follow up review Pip s weight had dropped since admission and was 31.8 kgs but was more physically stable. Parents and Pip requested an attempt to provide treatment at home which was agreed and Pip was discharged from Stepping Hill Hospital on the 15 th March 2013 Page 15 of 99

16 with a commitment to return if Pip s health deteriorated. The CAMHS consultant was concerned that Pip s heart rate and blood pressure were lower than was ideal. Pip s parents were in agreement with the plans for discharge which included face-to-face support from IROR every other day with telephone contact in between, a weekly CAMHS review, a weekly review of the diet and for psychological therapy to begin. Pip was also discharged from the Pendlebury Centre back to mainstream school. 73. Pip remained at home with the intensive home support from the 15 th March until the 23 rd April 2013 when Pip required a second admission to the paediatric ward. There were 22 contacts with CAMHS, dietician and/or the IROR although within the first week that mother was reporting anorexic behaviours. 74. On the 19 th March 2013 mother shared her concerns with the IROR practitioner that Pip was eating less than when they had been in hospital; Pip was hiding food and both parents were struggling to motivate Pip to eat. 2.4 Significant strain in working relationships between family and professionals March On the 21 st March 2013 Pip and her parents attended for an outpatient review with CAMHS consultant and the mental health practitioner where they expressed their unhappiness with the dietary advice they were being given; they felt that the various food groups were open to interpretation by Pip on issues such as insisting on low fat yoghurts and milk for example. The parents felt that they were being condemned by professionals. Mother also felt that she and father were not being consistent enough in their respective approaches. Father felt let down and had lost faith in the support available. 76. The parents were offered a session with the CAMHS consultant. They felt able to support Pip at home although engaged in a discussion about a potential admission to a tier 4 service. They wanted to reduce the level of IROR contact. A referral was made for family therapy and four appointments of individual CBT (cognitive behavioural therapy) 6 were made for Pip. 77. On the 22 nd March 2013 the dietician s review of Pip noted that weight was 32.6kgs. A new meal plan was agreed with Pip. 78. On the 25 th March 2013 Pip and parents were advised that readmission was being considered due to the ongoing concerns about Pip s restricted diet, hr excessive intake of fluid and exercise. The parents again raised the issue of what they perceived to be contradictory advice about food groups. 79. On the 28 th March 2013 Pip was weighed and had lost 1.4 kgs (weight of 31.4 kgs). At this time mother was expressing disappointment at having allowed Pip to negotiate so much and 6 Cognitive behavioural therapy (CBT) is a talking therapy that can help manage problems by changing the way a person thinks and behaves. Its most commonly used to treat anxiety and depression, but can be useful for other mental and physical health problems. Page 16 of 99

17 was very worried about Pip s physical health. It was agreed that there would be daily contact from the IROR at pre-meal times. 80. On the same day (28 th March 2013) a consultation took place between the mental health practitioner, inpatient consultant psychiatrist for eating disorders and the inpatient family therapist at the eating disorder case discussion group. This monthly group is open to CAMHS practitioners working with young people who have an eating disorder and require advice and guidance. The mental health practitioner was advised to consider seeking an admission to Galaxy House 7, to introduce medication and to encourage Pip to complete two mood and feeling questionnaires. 81. On the 29 th March 2013 the IROR worker found Pip in an angry mood at home and who was upset about the meal plan. Pip felt that mother was deliberately choosing foods Pip did not like in order to engineer a readmission to hospital thinking mother did not want Pip at home any longer. Mother was very upset about this and was feeling herself to blame for Pip s condition. Pip refused to complete the mood and feeling questionnaires believing this was just a trick to get her back into hospital, and was reporting no issues with their mood. This was an example of the splitting that is described in the final chapter. 82. Over the next week Pip struggled with the meal plan and in particular restricting dairy products and protein. 83. On the 2 nd April 2013, in a meeting with the CAMHS consultant, the parents expressed their concern and shock at Pip s weight loss although mother reported improvements in Pip s mood and sleep and that Pip was exercising less. If there was further deterioration then an admission to hospital was to be considered. 84. The family cancelled the following scheduled review on the 4 th April Over a course of several days Pip increased the level of negotiation with her parents over the meal plan; this again is symptomatic of the anorexic behaviour. The parents expressed concern about strict adherence to the plan feeling it was more effective to offer an alternative if Pip did not like the meal that was being offered. The parents were advised that this might lead to even further restrictions being sought by Pip in the future and was a reflection of anorexic thinking and behaviour rather than being an expression of preference about particular food. 86. Several discussions took place in regard to the parameters for readmission to hospital with both parents expressing their worry if Pip was readmitted. They were encouraged to attend the eating disorder parent support group. 87. On the 10 th April 2013 during a meeting with the CAMHS practitioner the parents again described feeling condemned and judged by professionals. They were not happy for Pip to 7 Galaxy House is a 12 bedded in-patient unit that provides mental health care for children up to the age of 13 years and also specialising in pervasive refusal syndrome and eating disorder Page 17 of 99

18 be readmitted to Stepping Hill Hospital if readmission became necessary and asked for a specialist eating disorder in-patient service for Pip if a hospital admission was required. 88. The sense of Pip s parents feeling criticised was discussed the following day at a CAMHS review. Pip s weight was dropping and her parents felt that they would be criticised by professionals. Pip s parents wanted an admission to a specialist unit rather than to a paediatric ward. 89. On 16 th April 2013 the CAMHS consultant in liaison with parents discussed and considered options of care for Pip. At this time Pip was at risk of significant physical health deterioration which would have warranted an admission on physical health grounds; this is not the remit of a specialist Eating Disorder Unit. At this time parents had also requested a reduction in IROR visits to 3 times per week. It was the IROR service that the parents described as sending different people and some of whom arrived late for scheduled sessions such as supervising a meal. 90. On the 19 th April 2013 at the CBT session Pip reported a number of physical symptoms including fatigue and cramps. Although Pip s weight was being maintained, her potassium levels had become low 8 and Pip was restricting her intake of protein by not eating meat, but continued to eat fish and was regularly refusing protein in the meal. The consultant psychiatrist consulted the on-call paediatrician who recommended a blood test and a full paediatric review but did not consider that an urgent admission was indicated. 91. During supervision on the 22 nd April 2013 the mental health practitioner agreed to place Pip on the care programme approach (CPA) 9 and to consider convening a professional meeting due to lack of sustained change and improvement in Pip s presentation. 92. On the 23 rd April 2013 the CAMHS consultant reviewed Pip s physical health and weight loss and the decision was made to readmit Pip to the paediatric ward. 2.5 Second hospital admission April Pip was re-admitted to Stepping Hill Hospital via the CAMHS out-patient service on the 24 th April Pip had not been complying with the eating plan and had lost weight (31.2 kgs). Pip s parents were unhappy about the admission to a general paediatric service and asked 8 A potassium level that is too high or too low can be serious. Abnormal potassium levels may cause symptoms such as muscle cramps or weakness, nausea, diarrhoea, frequent urination, dehydration, low blood pressure, confusion, irritability, paralysis, and changes in heart rhythm. 9 The Care Programme Approach commonly known as CPA is the framework for providing care to people with mental health problems and people with learning disabilities who also have mental health problems. It is the way of assessing their needs and planning with them the best way for health and social services to ensure that needs are met. The CPA should provide an assessment of the patient s health and social care needs, a written care plan detailing the help and support that the patient will receive; regular review meetings to discuss how the care plan is working and agree together with the patient and other relevant people any changes that may be needed. A named care co-ordinator will work specifically with the patient and it should provide the confidence of knowing who to contact and what to do in times of crisis. Carers should be offered an assessment of their own needs, which should be reviewed every year. Page 18 of 99