Independent Investigation Into the Care and of Thomas

Thomas July 2018 Acknowledgements This independent process would not have been possible without the support of: • NHS England • Thomas’s parents and his sisters • The district council • The mental health trust • An independent behavioural health provider • The care home • Thomas’s advocate • The advocate for Thomas’s family • Thomas’s independent consultant clinical psychologist • The local ambulance service • The teaching hospital • Thomas’s GP’s The independent team comprised: • Maria Dineen, Director, Consequence UK Ltd • Dr Ashok Roy, Consultant Psychiatrist, Coventry and Warwickshire Partnership NHS Trust • Judy McDonald, Interim Deputy Director of Nursing, Black Country Partnership NHS Foundation Trust • Miriam Silver, Independent Consultant Clinical Psychologist (Children and Parenting) • Sam Trigg, Associate, Consequence UK Ltd. Valuable insights and support was also provided by: • Maria Foster, Regional Coordinator, North & Cumbria Learning Disabilities Mortality Review (LeDeR) Programme, NHS England. 2 Contents Acknowledgements .................................................................................................... 2 Contents ..................................................................................................................... 3 Executive summary .................................................................................................... 5 1 Introduction by the author .................................................................................. 14 2 Introduction from Thomas’s Family .................................................................... 17 2.1 From Thomas’s mother and elder sister ................................................................... 17 3 Terms of reference ............................................................................................ 23 3.1 Key lines of enquiry .................................................................................................. 23 3.2 Specific safeguarding relevance ............................................................................... 28 4 Overview of Thomas’s life ................................................................................. 29 4.1 2008 to 2011 ............................................................................................................ 29 4.2 The Independent Hospital ......................................................................................... 29 4.3 The Linked Residential Care Facility......................................................................... 30 4.4 The Mental Health Trust – First admission ............................................................... 31 4.5 Period at home and events leading to second admission to the ATU ....................... 32 4.6 The Mental Health Trust – Second admission .......................................................... 33 4.7 Events leading up to Thomas’s admission to his second residential care home ....... 35 4.8 The New Care Home (referred to henceforth as the care home) .............................. 38 4.9 Arrival at the Teaching Hospital to time of Thomas’s death ...................................... 50 5 Analysis and findings ......................................................................................... 52 5.1 Terms of reference 1-4 ............................................................................................. 52 5.2 Term of reference 5: Thomas’s period of care with the Mental Health Trust ............. 54 5.3 Term of reference 6: Thomas’s time at the care home .............................................. 60 5.4 Terms of reference 7 and 8: the period 2 to 4 February 2015, including Thomas’s hospital care ................................................................................................................... 68 5.5 Specific safeguarding relevance ............................................................................... 69 6 What has changed since Thomas’s death ......................................................... 71 6.1 Children’s Services ................................................................................................... 71 6.2 The Independent Care Provider ................................................................................ 71 6.3 The Mental Health Trust ........................................................................................... 71 6.4 The Ambulance Service............................................................................................ 72 6.5 The Care Home Provider .......................................................................................... 72 7 Conclusions ....................................................................................................... 74 7.1 Author’s conclusions ................................................................................................. 74 7.2 Main conclusions ...................................................................................................... 75 8 Recommendations ............................................................................................. 79 9 Appendix A ........................................................................................................ 83 9.1 Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) ....................................................................................................................... 83 9.2 Learning Disabilities Mortality Review Programme (2015 to 2018) ........................... 84 10 Appendix B – Engagement with Thomas’s family during this independent process ..................................................................................................................... 85 10.1 Initial contact with Thomas’s family ......................................................................... 85 3 11 Appendix B - Investigative methods utilised for this independent process ........ 86 12 Appendix C – Thomas’s medications while under care with the Mental Health Trust ......................................................................................................................... 88 13 Appendix D – Chronology extract from the discharge planning for Thomas from the ATU and the handover from the ATU to the Care Home Provider in July 2014 . 89 14 Appendix E – Chronology extract from the circumstances leading to the Court of Protection order ........................................................................................................ 93 15 Appendix F – Core information provided to the care home by the Mental Health Trust ......................................................................................................................... 95 16 Appendix G – The Care Homes’ inpatient assessment of Thomas ................... 96 17 Appendix H – GP referrals ............................................................................... 100 4 Executive summary Purpose of the investigation At the time of Thomas’s death, his parents had a range of concerns about the care and management of their son throughout his life. They always felt that he did not receive a care package that met his or their needs. Focal points in Thomas’s life that caused heightened degrees of concern for his parents were: • they believed there was a lack of certainty about Thomas’s diagnosis of autism (this was in fact diagnosed by his Child and Adolescent Consultant, on 18 November 2010). • in the period between 2012 and 2013, when Thomas was in his first residential care placement, Norcott House, there were parental concerns about Thomas being abused by staff. • in the period between 2013 and 2014, during Thomas’s two admissions to the assessment and treatment unit, key issues were over medication, that Thomas seemed to deteriorate in this care facility rather than improve, and that he was no longer able to go out or eat the foods he liked. Concerns about ongoing abuse prevailed. • in the period between July 2014 and February 2015, during Thomas’s residence in a care home, Thomas’s parents again had concerns about abuse of their son and about his physical health management, specifically relating to the management of his chest infections. Because Thomas’s parents always believed that the death of their son was preventable, and that he could, and should, have had a better life, they canvassed NHS England for an independent review of the circumstances leading to the death of their son and his management in the preceding years. NHS England agreed to conduct an independent investigation and convened a multi-agency meeting on 2 September 2016. The first provider meeting occurred on 8 November 2016. In line with all level three independent investigations, the focus was to identify relevant learning opportunities that could inform improved care and management for the future. The initial scope of the investigation was not clear, so the independent reviewer met with Thomas’s mother and two of his sisters, and extensive terms of reference were agreed, along with a communication strategy. It was made clear to Thomas’s mother, at this time, that it may not be possible to deliver on every term of reference as thoroughly as the family wanted because of: • loss of memory • the providers of care during Thomas’s first admission, under section 2 of the Mental Health Act, and his first residential placement no longer being the providers of those services. Nevertheless, the lead independent reviewer made an undertaking to meet with

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