Death of an 8-year-old boy in October 2014 as a result of a normally treatable kidney infection. LN15 was known to paediatric services from the age of 14 months for developmental delay, chronic constipation and floppiness. Attendance at physiotherapy, neurology and occupational therapy appointments was sporadic and he was not registered with a GP for two years before his death. In September 2014 his school attendance decreased due to ill health. Issues identified include: correspondence not received due to frequent house moves; not seen by paediatric services for three and a half years prior to his death; safeguarding issues when a child is not registered with a doctor especially those with long term conditions; evidence of the mother making decisions about treatment and medication; the child's needs and global development not recorded by staff caring for him. Lessons learned include: changes to practices at the Trust including an end to the partial booking system for children and provision of a key worker to link between services; the need to record address, telephone number and GP details at every appointment; updating interagency cross authority procedures to provide more detail of medical neglect. Makes recommendations to strengthen cooperation between hospital-based services and general practitioners; to have policies in place to change Did Not Attend records to Was Not Brought to emphasise the child's vulnerability; for NHS England to review Royal College of Paediatrics and Child Care standards for the care of children with long term health conditions.
      
 Title:  SCR LN15: overview report. LSCB: Nottinghamshire Safeguarding Children Board Author: Hayley Frame Date of publication: 2017  This case review report was deposited by the publishing LSCB(s) with the national SCR repository, a partnership between the Association of Independent LSCB Chairs and the NSPCC.  This report is available online via the NSPCC Library Catalogue. Copyright of this report remains with the publishing LSCB(s) listed above.                           1     SCR LN15 Overview Report     A serious case review under Regulation 5(1) (e) and (2) of the  Local Safeguarding Children Boards Regulations 2006     Author Hayley Frame    2  Contents  1. Decision to hold a Serious Case Review      3 2. Parallel Processes        3  3. Scoping period           4 4. Lead Reviewer          4 5. Organisations involved in the review      4 6. Methodology         6 7. Terms of Reference        7 8. Involvement of family members        7 9. Perceptions of the family         8 10. Background Information        8 11. Case Narrative (scoping period)       12 2011: the last involvement of the paediatric outpatient clinic   2012 - 2013: Including de-registration from the GP practice    2014: LN15 becomes acutely unwell  12. Information that has become available subsequent to LN15’s death 19 13. Family Perspectives       20 14. Practitioner perspectives       23  15. Analysis         25 16. Changes to Practice       33 17. Conclusion and recommendations     34    3  1. Decision to hold a Serious Case Review  1.1. Regulation 5 of the Local Safeguarding Children Boards Regulations 2006 sets out the functions of LSCBs. This includes the requirement for LSCBs to undertake reviews of serious cases in specified circumstances. A serious case is one 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 authority, their Board partners or other relevant persons have worked together to safeguard the child.    1.2.  This review has been initiated following a referral to the Nottinghamshire Safeguarding Children Board on 24th July 2015 following the death of LN15 on 28th October 2014. LN15 died as a result of pyelonephritis (kidney infection), which is normally a treatable condition, and there were concerns regarding abuse or neglect. The delay in the referral to the LSCB was as a result of waiting for the post mortem results to become available. 1.3. On 9th September 2015, the NSCB Serious Incident Review (SIR) sub group recommended that a Serious Case Review be completed in respect of LN15 and the decision to complete a Serious Case Review was made by the Independent Chair of the Nottinghamshire Safeguarding Children Board on 14th September 2015. 2. Parallel Processes 2.1. Following the unexpected death of LN15, a rapid response child death review process was instigated in accordance with Working Together to Safeguard Children 2015. This process included 4 multi agency meetings being held to review the factors related to his death.  2.2. In addition, Sherwood Forest Hospitals NHS Foundation Trust completed a Serious Incident Investigation following LN15’s death.  2.3. In the autumn of 2015 an inquest took place in respect of the death of LN15. The findings and conclusions were 16 pages in length. The conclusion was that he died of natural causes. The Coroner stated that she did not make any findings of neglect in relation to the sudden onset of pyelonephritis which led to LN15’s death. However a Regulation 28 Preventing Further Deaths Report was made by the Coroner in respect of the system for registering children with GPs.  4  2.4. The decision to conduct a serious case review was reviewed in light of the findings and conclusion of the inquest. The Independent Chair of the Nottinghamshire Safeguarding Children Board concluded that the criteria for a SCR were still met in that neglect was at least suspected to be a factor in LN15’s death and that if medical attention had been sought he was unlikely to have died. Given the volume of information available as a result of the robust investigative processes that had already been undertaken, it was decided that the review would adopt a proportionate and streamlined methodology (as outlined below). The review would focus upon agency learning to ensure that all lessons arising from LN15’s death were learned and lead to achievable actions for change.  3. Scoping period  3.1. The focus for the review is from the date of LN15’s last consultation with a paediatrician, 10th March 2011 until his death on 28th October 2014.  4. Lead Reviewer   4.1. Hayley Frame, Independent Safeguarding Consultant, has been commissioned as the lead reviewer in this case.   5. Organisations involved in the review  5.1. The following organisations have been involved in the review. The relevant services that each organisation provided are described below:   Sherwood Forest Hospitals NHS Foundation Trust Consultant Paediatric service providing inpatient and outpatient neonatal care as well as an Emergency Department which LN15 attended on one occasion within the scoping period prior to his death   Primary School Provision of state education to LN15   Nottinghamshire County Council Children’s Social Care Responsible for Children’s Social Care Services, Children’s Disability Services and Occupational Therapy Services (to provide support within the home)    Nottinghamshire County Council Education 5  Provision of Physical Disabilities Support Services which provide support to LN15’s school.    GP Practice Provision of general practice services to LN15.  LN15 had very little contact with his GP. He was not registered with a GP after 29th November 2012, following a move to a different area. LN15 was not registered with a dentist.   Nottinghamshire Healthcare NHS Foundation Trust School Health offer a service to all children aged 5-19 years, including children and young people who do not attend school. The team review health at key stages and provide information, advice and support about health issues. Where a child has complex needs and support is in place from other services, then often no school nursing intervention is required.     Specialist School nurse (continence) - a specialist service.   Paediatric Physiotherapy and Paediatric Occupational Therapy service - provides physiotherapy and occupational therapy assessment and treatment for children who have a disability or long term condition affecting their movement or mobility. (Occupational Therapy focuses on fine motor skills and not equipment like the Occupational Therapy Services which are part of Children’s Social Care).   Speech and Language Therapy Services    NHS England Commissioners of health services including co-commissioner of GP services with Clinical Commissioning Groups (CCGs) and oversight of CCGs.   Mansfield and Ashfield Clinical Commissioning Group  Co-commissioner of GP services    Nottingham University Hospitals NHS Trust (prior to scoping period) Provision of outpatient neurology services   6  6. Methodology  6.1. Working Together to Safeguard Children 2015 (WT2015) allows Local Safeguarding Children Boards flexibility around the methodology to be adopted for serious case reviews.  This review will adhere to the principles laid out in WT2015 and the NSCB local procedures.    6.2. In view of the significant investigations and the inquest which have already been completed a proportionate methodology was adopted for this review. The Lead Reviewer had sight of and considered the following documentation:   Child death review documentation including minutes of relevant meetings held as part of the rapid response into unexpected deaths;   Summaries of agency information submitted to the SIR sub group and additional information provided directly to the Lead Reviewer;   Sherwood Forest Hospitals NHS Foundation Trust Incident Investigation Report;  Coroner’s Findings and conclusions, including the Regulation 28 Report 6.3. In addition, the Lead Reviewer interviewed key practitioners who worked closely with LN15 and his family.  6.4. This overview report was considered by a Serious Case Review Panel consisting of the lead reviewer and agency representatives and was also circulated to the practitioners for their comments.           7   7. Terms of Reference  The following terms of reference/ key issues were agreed for the Serious Case Review (SCR):   7.1. Examine the circumstances which allowed LN15 to remain open to paediatric services despite not being seen between March 2011 and the date of his death. Give consideration to the ongoing safeguarding risks identified in the SFHFT Serious Incident Investigation Report.  7.2. Examine the circumstances which led to LN15 not being registered with a GP between 29th November 2012 and the date of his death despite having long term health needs.   a) Consider this in relation to the matters of concern identified in the Regulation 28 Report to Prevent Future Deaths issued by the Coroner. b) Consider if agencies had the opportunity to identify and address this gap in his care.  7.3. Were there indicators of neglect that should have been reasonably identifiable to services throughout their contact with LN15 and if so were the responses of agencies appropriate?  7.4. Was LN15’s deteriorating health in the weeks leading up to his death identified by agencies and responded to appropriately?   7.5. Did agencies hear the voice of the child and was it acted upon by agencies working with the family?  If not, what were the barriers to them doing so?  7.6. Were agencies sufficiently responsive to LN15’s needs, in particular, those arising from his disability?  8. Involvement of family members   8.1. Both mother and father of LN15 have contributed to the SCR and have met with the Lead Reviewer.     8  9. Perceptions of the family   9.1. The physiotherapist described LN15 as a very confident and noisy little boy who knew his own mind. She described him as having very good communication skills and very good play skills. He was cheeky and appeared to be a happy little boy who did not cry or moan. He was well presented and appeared to have a good relationship with his mother. The physiotherapist described LN15’s mother as vey engaged with her son; sometimes she appeared to be coping and other times she would be tearful.   9.2. School staff who knew LN15 well, described him as a force to be reckoned with, a big personality who was confident and had a good sense of humour. He could be challenging, stubborn and outspoken but he was popular and appeared to be a happy little boy. He enjoyed maths but did not like writing. Physically he was described as lacking muscle tone, having a dainty face and being quite ethereal looking with red curls framing his face. He was described as a character within the school and that his classmates missed him. School staff described LN15’s mother as very friendly and chatty who would talk about how things at home were difficult. She presented herself well and was supportive of the school.   9.3. The school described how there were a high level of demands within the family and how the mother was very supportive of the school in their management of her children.   10. Background Information  10.1 On 6th February 2007, LN15 was seen in Sherwood Forest Hospitals NHS Foundation Trust paediatric clinic with concerns in respect of developmental delay which included him making no attempts to shuffle, crawl or roll to the sides. LN15 was by now 14 months old. His past history identified a wheeze and constipation alongside developmental delay.   10.2 There then followed a long history of health involvement in connection with his history of gross motor delay; hypotonia (floppiness) and chronic constipation and frequent faecal impaction. Referrals were made for physiotherapy and Speech and Language Therapy in 2008. LN15 was fitted with gaiters and given a standing frame.  9  10.3 Between 2007 and 2009, LN15 was subject of substantial investigations including muscle biopsy and MRI scans but these failed to identify the cause of his floppiness.  10.4 LN15’s parents separated in 2009 and LN15 lived with his older sibling and mother.  10.5 LN15 attended primary school and his attendance was generally very good. Over the years absences were in relation to influenza; sickness; stomach bugs; constipation and bowel problems. LN15 received support in class from a Teaching Assistant and had help with personal care, with PE and swimming. LN15 also had sessions of ‘Fun Fit’ in school with exercises to help with coordination and confidence.  Referrals to Children’s Social Care   10.6 The agency information indicates that two referrals were made to Children’s Social Care between 2009 and 2010, prior to the scoping period of this review.  10.7 In September 2009, the physiotherapist referred LN15 to Children’s Social Care to request practical and emotional support for his mother, including respite care. This followed concern regarding LN15’s mother’s stress levels as she felt tired and unsupported, was feeling low, struggling to cope with LN15’s sibling’s behaviour whilst having to work full time. As a result, a number of physiotherapy appointments had not been attended. It is recorded that Children’s Social Care left several messages for LN15’s mother but received no response and so the case was closed. A letter was sent to LN15’s mother stating that there was no role for the department and as such they would not be offering a social care service to the family. The letter identified a number of services that might be helpful, and included written information about them:  A Place To Call Our Own   Inclusion Support   Local Health Visitor   Children's Information Service   Welfare Rights Service   Short Breaks Service   10  10.8 LN15’s mother told the physiotherapist in December 2009 that the request had been declined as he did not meet the criteria.   10.9 On 1st December 2009, the physiotherapist had clinical supervision where it was agreed that due to the nonattendance of appointments that LN15 would be seen in school by the physiotherapist to ensure his needs were met in the short term.   10.10 On 16th March 2010, the physiotherapist wrote to LN15’s mother, copied to Child Health, neurologist and consultant paediatrician stating that LN15 had not attended physiotherapy since 12th October 2009 (6 months prior). The letter stated that they had tried unsuccessfully to contact LN15’s mother by telephone and letter and that if the physiotherapy service had not heard from her within two weeks, LN15 would be discharged from the service.  [Author comments: In interview the physiotherapist explained that it is very unlikely that a child would ever be discharged from their service but they will write to state this as an attempt to get parents to respond and re-engage. The physiotherapist also contacted LN15’s school and his GP to ensure that she had the right address. It is evident that although the letter sent by the physiotherapist was well intentioned, it would not be in line with relevant DNA policy. The Healthcare Trust DNA policy advises that if a child misses a follow up appointment then consideration should be given to initiation of a Common Assessment Framework (CAF). The DNA policy is under review.]  10.11 On 23rd March 2010, a referral was made by the consultant paediatrician to Children’s Social Care for respite and support with aids. The letter stated that LN15’s mother was struggling to get him in and out of the bath and keeping the boys entertained. It also stated that she would benefit from support and respite.  10.12 As a result of the referral, a letter was sent to LN15’s mother asking her to make contact with a duty social worker within the disabled children’s team.   10.13 On 1st April 2010, the physiotherapist wrote a detailed letter to the consultant paediatrician. The letter described how LN15 had made progress over the years with his mother’s help and had been a pleasure to treat. It described how attendance had deteriorated and that his mother had discussed feeling tired and low since LN15’s father had left the family home and she was caring for both children alone. The 11  physiotherapist wrote that she had referred the family to children social care but that LN15 did not meet their criteria as he was too young. The consultant paediatrician was asked to give additional support with the referral. The physiotherapist also explained how despite numerous phone calls and appointments, LN15 had not attended since 29th September 2009 and as a result she had been meeting LN15’s physiotherapy needs by visiting him in school and setting up a school therapy programme there.   10.14 The consultant paediatrician wrote again to Children’s Social Care on 19th April 2010 requesting a sitting and befriending service. As a result the children’s disability team sent information to the referrer and the LN15’s mother regarding the 100 hours scheme, a sitting/befriending service for disabled children and parents.   [The letter from the consultant paediatrician is brief and does not contain any of the detailed information provided to her by the physiotherapist.]   10.15 LN15’s mother re-engaged with physiotherapy services on 21st June 2010 following an appointment letter being sent via the school which was an example of good practice.  LN15’s mother stated that things were really difficult as the sibling continued to display problematic behaviour and they were having to move house. On 22nd June 2010, the physiotherapist spoke with the consultant paediatrician who stated that she had spoken with social care and they had said the family did not meet the criteria for intervention or support, but had agreed to pass onto mother a phone number for support. In addition the physiotherapist arranged for additional physiotherapy input to be delivered within school.   10.16 On 22nd August 2010 LN15 was seen at home by a school health community practitioner for a transfer-in visit as the family had moved home. Mother, both siblings and mother’s boyfriend were present. Mother reported she felt that all services were in place for LN15 but stated that he was doubly incontinent and was querying whether she could be assessed for help with nappies.  10.17 LN15 progressed well with the support put in place within school and was mobile by October 2010. He continued to require only slight assistance and supervision from staff as he could be unsteady on his feet.  12  10.18 LN15 attended a physiotherapy appointment on 7th January 2011. The plan was to contact the consultant paediatrician regarding jerky movements and to contact the health visitor regarding nappies.  11. Case Narrative (scoping period)   2011: the last involvement of the paediatric outpatient clinic  11.1. On 10th March 2011, aged 5 years and 3 months, LN15 was seen in the paediatric outpatient clinic. The muscle biopsy results were normal and it was discussed that LN15 should be seen by a Consultant Neurologist for consideration of an EEG (electroencephalogram), a test used to find problems related to electrical activity of the brain.   11.2. A referral was made to the Local Authority Occupational Therapy Team which was part of the Council Children’s Disability Service in March 2011. The purpose of the referral was for a bathing and toileting assessment.  LN15’s mother did not respond to requests for contact. LN15 was discharged from the Healthcare Trust Occupational Therapy Team on 8th April 2011.  [The reason for the discharge is not recorded.]   11.3. On 26th May 2011, LN15 was not brought to his neurology clinic appointment.  11.4. On 22nd June and 11th July 2011, LN15 was not brought to planned physiotherapy appointments and a letter was sent stating that he had been discharged from the Rebound list.  [Rebound is physiotherapy using a trampoline.]  11.5 On 15th August 2011, the physiotherapist attempted to contact LN15’s mother by telephone to arrange a joint Healthcare Trust Occupational Therapy and physiotherapy review. [It is unclear why Occupational Therapy are again involved when the records indicate that he was discharged in April.]  11.6 On 2nd September 2011, he was not brought to his paediatric outpatient appointment. A letter was set to the GP regarding poor clinic attendance. The GP replied and identified the new address for the family. [The hospital records were updated but in actual fact this too was an incorrect address.]  13  11.7 From June 2011 until October 2011, LN15 was not brought to his 4 planned physiotherapy appointments. He was seen however on 13th September 2011 by the Healthcare Trust Occupational Therapy service. 11.8 On 17th October 2011 the physiotherapist wrote to LN15’s mother about the missed appointments and the next day the physiotherapist visited LN15 in school.  11.9 On 20th October 2011, LN15 was not brought to a second appointment at the neurology clinic and as a result the Consultant Paediatrician wrote to the mother on 27th October 2011 outlining her concerns regarding poor attendance and requesting an updated address. The mother was informed that if they failed to attend the next appointment in December 2011 then a referral would be made to Children’s Social Care. The paediatrician was also aware that LN15 had been discharged from the Local Authority Children’s Disability Service Occupational Therapy service due to the mother’s failure to make contact.  [This letter was an appropriate response however it was unfortunately sent to an incorrect address and never received by LN15’s mother.]  11.10 On 25th October 2011, the Healthcare Trust Occupational Therapist sent an appointment to LN15’s mother for LN15. [It was noted that the Occupational Therapist had three addresses for LN15 and a letter was sent to all three; this poses questions with regard to information governance and data protection.]  11.11 On 31st October 2011, LN15 was seen by both the Healthcare Trust Occupational Therapist and physiotherapist. LN15 had made good progress, no longer needed his standing frame and was in Piedro boots and managing to walk. LN15’s mother reported being under significant stress, her mother had died, she had split from her current partner, had lost her job and was struggling to manage LN15’s sibling’s behaviour. It was noted that during the session that LN15 and his brother were arguing resulting in the brother attempting to push and kick his mother.  When asked if she was ‘ok’, LN15’s mother started to cry, and was asked if she required support with both children’s behaviour to which she said she did. The Occupational Therapist sought permission to refer to CAMHS which mother gave.  [It is noted that LN15’s mother gave permission to refer the ‘family’ to CAMHS. Part of the noted plan was for the Healthcare Trust Occupational Therapist to complete a referral to CAMHS for help with behavioural strategies for both brothers at home and possibly within school.] 14  11.12 LN15’s continence remained of concern and this was expressed to the Healthcare Trust Occupational Therapist and Physiotherapist who arranged for LN15 to be assessed by a specialist continence nurse at home that same day. LN15 was provided with continence products on 2nd November 2011. This continued until July 2012.  [LN15’s mother asked to be assessed for support with nappies on 22nd August 2010. It was over a year later, and two further requests, that this was actioned.]  11.13 On 3rd November 2011, the Healthcare Trust Occupational Therapist spoke to LN15’s mother on the telephone and informed her that a referral to CAMHS had been made and that a re-referral had been made to the Local Authority Occupational Therapy Team which was part of the Children’s Disability Service.  11.14 As a result of this referral, on 16th November 2011 a home visit was completed following which it was agreed to provide a shower stool and a specialist toilet seat. Telephone calls were made to LN15’s mother and 2 letters sent, with no response and as such it was agreed to put a hold on the equipment and close the case to the Children’s Disability Service.  11.15 It was recorded on 14th November 2011 that a referral to Emotional Health and Well-being (CAMHS Tier 2 services) had been received.  11.16 LN15’s mother left a message for the Healthcare Trust Occupational Therapist who had made the CAMHS referral on 22nd November 2011. The message was in respect of an update regarding the CAMHS referral. The Occupational Therapist tried to call her back without success.  11.17 Also on 22nd November 2011, LN15’s mother contacted CAMHS stating that she did not experience any behavioural, social or emotional issues with LN15 and she thought the referral was going to be made in relation to her other son. She stated that she had contacted the referrer to request another referral be made for her other son and cancelled the initial assessment appointment for LN15 scheduled for 28th November. 11.18 In October, November and December 2011, LN15 did attend appointments in the Orthotic clinic (for his splints).  He had made massive improvements and was walking independently and with only limited mobility aids. One appointment, 5th December, was a joint appointment with the physiotherapist. 11.19 LN15 was due to attend a paediatric outpatient appointment on 15th December 2011, which was 10 days after his last attended Orthotic/ physiotherapy appointment. However a partial booking system was introduced by the hospital meaning that the 15th 15  December appointment was cancelled and mother was sent a letter asking to contact the hospital to make another appointment. [LN15’s mother would not have been aware of the 15th December appointment as the letter had gone to an old address. This letter also made reference to a referral being made to Children’s Social Care but was not followed up due to the appointment being cancelled. The letter informing of the cancelled appointment also went to the wrong address. LN15 was not seen again in the paediatric outpatient clinic but continued to be seen by Physiotherapy and Orthotics.]   2012 - 2013: Including de-registration from the GP practice  11.20 The CAMHS notes indicate that LN15 was discharged on 6th January 2012 due to an inappropriate referral. The reason for this is not recorded but a further update notes that LN15 is now on the waiting list for the CAMHS community learning disability team.  [The review has established that the referral is in LN15’s name but makes reference to his brother and mother’s need for support in relation to both of their behaviours.] 11.21 On 23rd January 2012, when he was 6 years of age, LN15 was seen in school for a routine school entry review.  His weight and height were noted to be at the lower end of normal limits.  11.22 In January 2012, LN15 was not brought to an Orthotic clinic appointment but he did attend two Orthotic appointments in October 2012. 11.23 LN15 was not brought for 3 physiotherapy appointments in April, May and July 2012. 11.24 On 20th July 2012, the continence nurse stopped the prescription for nappies, pending a further continence assessment, due to allegations that they were being sold for financial gain. This assessment did not occur. The school reported that LN15 was still wearing nappies. It was also noted LN15 had moved house.  [It is unclear why it was felt appropriate to stop the supply of nappies based on a piece of unsubstantiated information, especially given the school’s confirmation that LN15 was still attending wearing nappies.  From this point on, LN15’s mother had no further support from continence services regarding nappy provision and purchased nappies for LN15.  The review has established that it is expected practice that a continence assessment be completed prior to 16  a prescription for nappies being stopped. Individual practice issues have been addressed.]  11.25 LN15 attended a physiotherapy appointment on 22nd October 2012. During the appointment LN15’s mother stated that he had been discharged from the neurology and neuromuscular clinic and remained under the care of the paediatrician. She stated that LN15 still had no formal diagnosis. The physiotherapist noted that LN15’s compliance with the session became an issue on a number of occasions.  [It is not recorded whether the physiotherapist asked when was the next appointment with the consultant paediatrician.]  11.26 On 29th October 2012, LN15 was seen by orthotics and the physiotherapist jointly. 11.27 In November 2012, LN15’s mother de-registered LN15 from the GP practice saying that she was moving out of the area. The practice held the records for the required 28 days following de-registration then forwarded them to NHS England. 11.28 In December 2012, a six monthly review was completed by the Physical Disability Support Service in school. There continued to be no requirements for manual handling, LN15 remained independently mobile and was no longer requiring the use of a standing frame.  11.29 On 17th January 2013, LN15’s mother went to collect the monthly supply of continence products. She was given two packs as the receptionist was unaware that the order had been cancelled.  11.30 LN15 was seen in school on 19th April 2013 by the Healthcare Trust Occupational Therapist to review his chair. A new one was ordered which was subsequently delivered and assessed in June 2013. 11.31 LN15 was not brought to two physiotherapy appointments in July and August 2013.  An appointment letter for 13th August 2013 was returned by Royal Mail.  11.32 In September and October 2013, LN15 attended two Orthotic appointments, one of which was joint with the physiotherapist. At this appointment, LN15’s mother reported that the situation at home had improved and that she was coping better.  [It is good practice that joint appointments were made.] 11.33 On 6th December 2013, the school informed the Occupational Therapist that LN15’s special chair was no longer being used. LN15 was therefore discharged from the Healthcare Trust Occupational Therapy services. 17  2014: LN15 becomes acutely unwell  11.34 LN15 attended one out of two scheduled physiotherapy appointments in January 2014, and attended two out of three in February 2014. A block of rebound therapy was arranged for the summer.  [This was LN15’s last contact with his allocated physiotherapist.]  11.35 On 27th March 2014, when LN15 was 8 years of age, an annual physiotherapy review was held at school. Toileting was mentioned and LN15’s mother agreed to go to the GP to get a referral to the paediatrician regarding this and discussed using pads rather than going straight to pants. It was also suggested that LN15’s medication may need to be adjusted to allow faecal control to be improved.   [The reason for a request to be referred to a paediatrician when LN15 was already under the care of a paediatrician is unclear however it was not LN15’s usual physiotherapist who completed the annual review. Given that a colleague was already visiting school that day it was agreed that she would complete the review. She met with LN15 in advance on 4th February 2014 and was provided with a handover by his allocated physiotherapist. In interview the physiotherapist explained that their service has minimal direct contact with GPs but that this is normal practice.]  11.36 LN15 was due to have a block of hydrotherapy over the summer of 2014 but this was cancelled due to the unavailability of the pool.  Rebound physiotherapy sessions were arranged for September, the first of which being 3rd September which was attended. 11.37 On 7th September 2014, LN15 attended Emergency Department (ED) having trapped his foot in a car door. He had a minor fracture and was discharged with antibiotics and advice. ED records have missing data with regard to GP details; LN15’s mother had indicated that following a house move she was in the process of registering with a GP.  [This should have prompted a referral to the paediatric liaison health visitor but this did not occur. LN15 had not been registered with a GP since November 2012 although ED would not have been aware of this.] 11.38 On 8th September 2014, LN15’s mother cancelled rebound physiotherapy sessions scheduled for 10th, 17th and 24th September due to LN15 having fractured his toe.  11.39 From 15th September 2014, LN15’s attendance at school decreased. In the weeks commencing 15th, 22nd and 29th September 2014, he attended for two days only each week. His absence was due to stomach pains.  18  11.40 On 1st October 2014, LN15 attended a rebound physiotherapy appointment and his mother reported that he had been constipated for three weeks, was not feeling well and had a solid tummy. The rebound physiotherapist recorded that LN15 looked unwell but was talkative and active throughout the session. It was recorded that he showed moderate compliance but sometimes refused to follow instructions.  [There is no record of advice being given to the mother to seek medical attention for LN15. Again as this was a rebound session, the session was not held with his allocated physiotherapist as it usual practice as it would not be an expectation that the allocated physiotherapist would offer all therapies.]  11.41 In the week commencing Monday 6th October 2014, LN15 only attended school on the Tuesday. On that day the Head Teacher advised LN15’s mother to take him to the GP. LN15’s mother stated that he was not due to see a paediatrician for another six months.  11.42 LN15 was not brought to his rebound physiotherapy appointment on 8th October 2014 due to being unwell.  11.43 On 9th October 2014, the school Special Educational Needs Coordinator (SENCO) telephoned LN15’s mother with regard to his ongoing stomach/ bowel issues and advised her to go to the GP or contact the consultant paediatrician. LN15’s mother stated that she had sought medical advice and had been told to give him medication to help his constipation and to give him pain relief. [It is now known that LN15’s mother misled the school and did not seek medical advice. The school does not have an allocated School Nurse and in their experience it takes a great deal of effort to engage the school nursing service. Under new commissioning arrangements, all schools will have a named school nurse.  In interview the Teaching Assistant (TA) explained that she had advised LN15’s mother to go to the drop-in centre when his mother gave the impression that it took time to get a GP appointment. The TA recalled telling LN15’s mother that she was worried about him and thought that he had lost a bit of weight as his legs looked thinner when she changed him.]  11.44 LN15 attended school on Monday 13th October 2014 but did not attend for the next three days. On 15th October, LN15’s mother rang the school and left a message to say that she had taken LN15 to the GP and that he had been prescribed strong medication for his stomach and might be back in school that Friday. 19  [It is now known that LN15 had not been seen by a GP. In interview, school staff explained that LN15’s mother was coming in at lunch times to give him medication which they believed to be pain relief.] 11.45 In week commencing 20th October, LN15 attended school on Tuesday only, due to a stomach ache and temperature. He was not brought to a physiotherapy appointment on 22nd October. The half term holidays commenced on 27th October. [In two months, LN15’s school attendance plummeted from 96.3% in the preceding academic year to approximately 50%. There had been no previous patterns of absence that were of concern.]  11.46 LN15’s mother had obtained employment and the half term week was her first week in work. She arranged for LN15 and his brother to be cared for by a childminder. The first day at the childminders was on 27th October 2014 and was reportedly uneventful.  11.47 On 28th October 2014, LN15 was admitted to the Emergency Department in cardiac arrest and died. He was 8 years of age. 12.   Information that has become available subsequent to LN15’s death  12.1 LN15’s mother reported that LN15 had been ill for the last 3 -4 weeks which she attributed to an episode of chronic constipation and was treating with diluted adult Movicol which she had purchased over the internet as it seemed easier and quicker than registering with a new GP and attending an appointment to obtain a new prescription. When purchasing adult Movicol on line it is stated that this should not be given to children under the age of 12 years. LN15 had been prescribed paediatric Movicol previously and being given adult Movicol was not a factor in his subsequent death. 12.2 LN15’s mother admitted during the inquest to having misled the school with regard to recent attendances at the GP.  12.3 LN15’s mother recalled that he had become somewhat down and withdrawn in the 5 days prior to his death and had lost his appetite.   12.4 The evening prior to his death LN15 had complained intermittently that his stomach hurt. He went into his mother’s bed at around 11.00pm. He awoke at 1.00 am and vomited. He had a drink, woke again at 5.00 am and vomited again. He was given pain relief and settled. On waking LN15 had another drink, and asked to go to McDonald’s for breakfast on the way to the childminder, although he only ate a small amount of his meal.  20  12.5 At the childminders, LN15’s mother informed her that LN15 had been vomiting. The plan was to go out for the day however LN15 vomited three times in the child minder’s car. She returned home and LN15 asked for some water. The childminder contacted LN15’s mother by text message asking for her to collect him. When the child minder returned, she found LN15 unconscious and unresponsive. An ambulance was called and all attempts to revive him by the paramedics and later in ED were unsuccessful.  13. Family Perspectives 13.1 The paragraphs below reflect views and perspectives of LN15’s parents. It would appear that after the parent’s separation, LN15 had limited contact with his father.  13.2 LN15’s mother described him as a funny, outgoing and bright little boy who was very sensitive.   13.3 When asked to describe LN15’s health needs, his mother stated that his condition was undiagnosed but that he displayed hypotonia and hypermobility, suffered constipation and faecal impaction and poor bladder control. She described how he was unable to dress himself, and needed help to get in and out of the bath and up and down the stairs. Physiotherapy meant that he made huge progress and was able to walk unaided, although he wore splints for stability as his ankles rolled inwards.  LN15’s mother spoke of the intrusive tests that he underwent, which were distressing for him, with no outcome with regard to a diagnosis. She stated that she was told at first that he might not ever talk or walk but with hard work significant improvements were made. She spoke of the stress of not knowing what the future held, what the prognosis was for LN15, and that the impact of not knowing led her to lose faith in health agencies and for her to come to the conclusion that she would do things ‘her way’.   13.4 When asked to consider the help that would have been of benefit to the family, LN15’s mother spoke of the referral to Children’s Social Care for respite but that LN15 did not meet the criteria. She said she also requested help with bathing aids but this took a long time to arrange and by the time it was resolved they had moved house and didn’t need them in the new property. LN15’s mother also spoke of the referral to CAMHS that was for LN15’s sibling given some of his behaviours but was not progressed as the referral as made in LN15’s name. She spoke of ringing CAMHS and being told to go back to her GP which she said felt like going back to ‘square one’.  21   13.5 LN15 had speech therapy from the age of 3 years but progressed well within nursery. With regard to constipation and faecal impaction, this improved with diet. He was prescribed Movicol and lactulose but over the years his bowel condition improved and mother said she did not give LN15 Movicol. She spoke of having LN15’s nappies cancelled without warning and no response given when she enquired why this had happened. She stated that the continence nurse never returned her calls so she began purchasing nappies for LN15. She spoke of de-registering LN15 from the GP when she moved house and got forms for registration with a local GP but did not fill them in.  13.6 LN15’s mother described a positive relationship with school, and that LN15 had wonderful TAs and a very supportive SENCO team. The Healthcare Trust Occupational Therapy Services provided input with fine motor skills and strengthening muscles and worked in conjunction with the school. LN15’s mothers spoke of the special chairs that LN15 had in school, his standing frame and how he engaged in the Fun Fit programme run by schools to help with balance, control and coordination. LN15’s physiotherapist was described by mother as a wonderful woman who had a very special bond with LN15 even though he was sometimes resistant to physiotherapy. Mother spoke of now being aware that positive improvements made by LN15 were not fed back to the consultant paediatrician and as such there was no trigger for renewed contact with the paediatrician. She said that she assumed this feedback was happening and therefore that LN15 did not need to be seen by the consultant paediatrician.   13.7 LN15’s mother described 2011 as a time of significant stress for the family as she was working full-time, her mother was terminally ill and she received little family support in her care of the children. Neighbours had complained about the noise that the children made and she was referred to neighbourhood wardens. She said she took voluntary redundancy to look after her mother and then accrued rent arrears and had to move.  13.8 LN15’s mother spoke of the house moves that the family had often due to circumstances beyond her control – being unable to financially meet the rent on properties and the landlord selling the property that she was renting. She found the property where she is currently living towards the end of October 2014 when LN15 was unwell. She also secured a part-time job but for the first two weeks was full-time. She found a childminder to complete the school runs and have the children over half term.  22  13.9 LN15’s mother spoke of how LN15 did not like change and every time they moved house he would get upset. He was aware she was starting a new job and that there would be a childminder; this upset him too. She described LN15 as becoming withdrawn, very clingy to her, and off his food. She had seen him present in the same way many times previously and did not think that there was anything to be concerned about. She increased his fluids and felt that she knew how to deal with his ill-health as she had managed it before without issue. She spoke of her guilt and the tragedy of her son’s death.  13.10 Despite sporadic contact with his son, LN15’s father described him as a bundle of joy, a brave boy who never gave up, who was soft, gentle, loving and intelligent.   13.11 LN15’s father was concerned that letters from health agencies were not sent to him to alert of appointments not being attended. With regard to the letter stating that consideration might be given to a referral to Children’s Social Care due to non-attendance, LN15’s father felt that this should have been sent to all with parental responsibility. His view was that had he known, he would have intervened. LN15’s father confirmed that he did not seek information or updates from agencies working with LN15.  13.12 LN15’s father stated that LN15 could not manage without Movicol and queried why there was not a flag about a child not being issued with a repeat prescription. It has been established as part of this review that although Movicol was on repeat prescription, when patients leave a GP practice all repeats are removed automatically as part of the patient deduction.  13.13 LN15’s father queried why ED staff had not had sight of all of LN15’s missed paediatric appointments (in 2011) when he had presented at ED in 2014.  The review has established that it would not be realistic to expect ED practitioners to do this even if technically they could. There would have to be a specific reason/ concern for looking at past medical history and previous attendance at appointments.   13.14 LN15’s father was also concerned to have never had contact from the school when there were concerns about absence due to ill-health, particularly in the last weeks of his life. He felt that due to a lack of information he was unable to exercise his parental responsibility although he did not independently make contact with the school.  23  13.15 As a result of the concerns raised by LN15’s father, enquiries were made with agencies in respect of their policies regarding contacting/ alerting/ keeping informed non-resident parents who have parental responsibility.   13.16 In education settings, if separated parents with parental responsibility are not in amicable contact with each other, for whatever reason, then one parent will normally be responsible for care and decisions and receive information/ involvement from schools. Statutory Department for Education guidance (2016) states that every parent, whether resident or not has a right to participate and receive information. When non-resident parents request from schools to be kept informed of their child’s affairs, then schools and agencies comply with this although human error will occasionally mean that a parent may be left out of the loop.   13.17 When a child accesses a health service for the first time, the attending parent/s will be asked to clarify parental responsibility and an address for correspondence. Any requests to send correspondence to separate parents would be respected but would rely on parents making these requests.  13.18 In summary, the principle of parental responsibility places a duty on parents to promote their child welfare.    14. Practitioner perspectives  14.1 In interview, the physiotherapist explained that LN15 was first referred to her when he was 23 months old. She described him as having very poor muscle bulk and that bone could be felt around his shoulder and pelvic girdle. Although he looked undernourished the physiotherapist explained that it was not about weight, it was in respect of muscle bulk which was always poor. At first LN15 had very poor strength, was very floppy and delayed physically. At 23 months he was unable to crawl or get on to all fours.   14.2 At first LN15 had weekly appointments and between treatments the parents were expected to complete the exercises at home on a daily basis.  The physiotherapist described LN15’s mother as very committed and that LN15 made a lot of progress which would not have been possible without completion of the daily exercises. The physiotherapist stated that physiotherapy is about what a therapist can engage the parents to take on as physiotherapy sessions alone will not be effective.   24  14.3 The physiotherapist described his mother as being an active participant in the sessions, joining in and getting down on the floor with LN15. Due to progress made, appointments reduced to fortnightly. Once LN15 was mobile and on his feet, appointments reduced to monthly and then in the later stages he was seen for review every 3 to 4 months and if a need was identified he would be referred for a block of treatment. LN15 was referred for hydrotherapy and rebound therapy (therapeutic use of trampoline to develop core strength and stability). These would be in blocks and completed by different physiotherapists.   14.4 The physiotherapist explained how LN15’s mother yearned for a diagnosis for her son and it was very difficult for her to manage when no diagnosis was made and was a cause of significant stress. She described how demanding both children could be and in sessions and wondered how LN15’s mother coped at home alone.  14.5 The physiotherapist was unaware that LN15 did not have a GP. As is usual practice, there was no routine communication between the service and GP and although they are copied in to any reports written, none were written in respect of LN15.   14.6 With regard to communication with the Consultant Paediatrician, the physiotherapist explained that communication decreases as children improve, especially if they are just seen for review.   14.7 The physiotherapist reported that she will have 70/ 80 children on her caseload and does not have the capacity to write an ‘all is well’ letter after each appointment.   14.8 LN15’s physiotherapist had not seen LN15 since February 2014, when he was seen for review; his last block of rebound therapy was with a different therapist, as would be expected within the team approach of the service, each having different specialisms.   14.9 LN15’s head teacher, school TA and SENCO were also interviewed. They described how LN15 was not mobile when he started school but in the later years he was able to walk independently. The main area where he needed support was with his personal care. The SENCO explained how LN15 showed no interest in toilet training and that she met with his mother to develop toileting plans on several occasions but with no success. The SENCO stated that she also tried to engage the school nurse in this process but ultimately LN15 would not try and as such he stayed in nappies. The SENCO said she never understood why LN15 was still in nappies. 25   14.10 LN15 was assessed as having special educational needs, the main issue being his personal care.  Although the school received no funding for him, he had the support of a TA every morning. He did not require academic support. LN15’s mother didn’t always attend parent’s evenings or meetings held to review his progress. The SENCO felt that this was more so when mother was not concerned about his progress. If she had concerns she would be in frequent contact with the school. LN15’s mother kept the school up to date with changes of address.   14.11 School staff explained that LN15 did not have a network of professionals around him as his needs reduced and his mobility improved.  They had a good relationship with the physiotherapist but never had any communication with the consultant paediatrician which they did not feel to be unusual.  14.12 The school staff were not overly concerned about the family, and felt that LN15’s mother was coping in difficult circumstances.   15. Analysis  Examine the circumstances which allowed LN15 to remain open to paediatric services despite not being seen between March 2011 and the date of his death. Give consideration to the ongoing safeguarding risks identified in the SFHFT Serious Incident Investigation Report.  15.1 LN15 was not brought to a second appointment at the neurology clinic on 20th October 2011 and as a result the Consultant Paediatrician wrote to mother outlining concerns regarding poor attendance and requesting an updated address. Mother was informed that if they failed to attend the next appointment in December 2011 then a referral would be made to Children’s Social Care. This letter was sent to an address held on the records which was an incorrect address and was never received by LN15’s mother.   15.2 A partial booking system was introduced by the hospital meaning that the December 2011 appointment was cancelled and mother was sent a letter asking to contact the hospital to make another appointment. The partial booking system was introduced across the Trust, not just within paediatrics, to provide increased choice to patients and reduce the number of DNAs resulting from pre-made appointments. The Serious Incident Investigation Report (SIIR) completed by the hospital outlined that at the point 26  of going live onto the new system, all arranged appointments were cancelled and standard letters were issued to families explaining why this had happened and guiding them what to do next. The expectation was that patients would ‘opt in’ to arrange subsequent appointments, which clearly put full responsibility to arrange future appointments with the patient and in the case of a child, with the parent or carer. The partial booking system did not generate an alert where a patient did not make an appointment and as such there was no system to alert the named physician, in this case the consultant paediatrician, of non-engagement.   15.3 As LN15’s mother did not know that responsibility rested with her to arrange appointments, given that she had not received the letter advising her of such, plus the fact that she did not enquire whether he was due an appointment, LN15 attended no further appointments in the paediatric outpatient clinic. As no appointments were ever arranged, the hospitals Did Not Attend (DNA) processes were not triggered.  15.4 As a result, LN15 was not seen by paediatric services for three and a half years prior to his death, although he could have been re-referred into the service had he been registered with a GP.  15.5 The partial booking system has now been amended in light of the findings of the risk assessment undertaken as a result of SFHFT Serious Incident Investigation Report. The Elective Access, Booking and Choice policy has a specific pathway for children and young people under 18 years of age and states that: ‘The important aspect regarding children and young people’s appointment changes is that the consultant with overall responsibility for the patient MUST be kept up to date and consulted in the event of repeated appointment changes and/or appointment cancellations to make a decision on the correct course of action to be taken.  Example of appropriate decisions may be i.e. discharged to GP, reappointment agreed, referral to another service, safeguarding procedures followed, other professionals involved.  The child should not be discharged without this plan being agreed by the consultant.’  15.6 In the event where a patient is referred but an initial appointment is never made by the parent then the GP would be alerted in writing.  15.7 All clinical and administrative staff have had training in using the new pathway but it still needs to be embedded, after which the Trust will undertake an audit to monitor its effectiveness. 27   15.8 As part of this review, assurance was sought from SFHFT with regard to any other children that may have been adversely affected by the partial booking system and had not attended appointments. The Trust were asked to confirm that all children who were under a consultant paediatrician at the time of the changeover in the SFHFT appointment system; i) have been seen or assessed or ii) there is a plan for them to be seen. Unfortunately, available systems did not allow the Trust to identify other children whose carers had not responded to the letter inviting them to make an appointment. A risk therefore remains that other children may not have had medical oversight or intervention. SFHFT is aware of the risk which is being managed within their risk register process. With the passage of time, the review panel are hopeful that the risk is reduced as the expectation is that children would be re-referred.   Examine the circumstances which led to LN15 not being registered with a GP between 29th November 2012 and the date of his death despite having long term health needs. a) Consider this in relation to the matters of concern identified in the Regulation 28 Report to Prevent Future Deaths issued by the Coroner.  15.9 The matters of concern identified by the Coroner were as follows:   There is no legal requirement to register or re-register a child with a General Practitioner   There is no reliable system in place to identify when a child has been de-registered from a General Practice  There are potential safeguarding concerns if a General Practitioner can de-register a child, particularly a child with chronic health needs, before a new General Practitioner has been identified and notified of the proposed de-registration  The paediatric team and physiotherapy services were not directly informed that LN15 was going to be deregistered or had been deregistered.   15.10 All responses to the Regulation 28 report were received by the SCR review panel and their contents are incorporated within the analysis of this report. Public Health England responded by stating that they do not have a direct role in determining the process for registration of patients in general practice and referred the matter to NHS England, as commissioners of primary care services. NHS England’s current operational procedures do not include patient deregistration. 28   15.11 The General Medical Council helpfully set out the fact that there is no requirement upon a patient to inform a GP that they are leaving the practice and so a GP may be unaware that a patient has left the practice area.  They may also be unaware of a patient’s new location. Requests to transfer a patients records are triggered by registration with a new GP. It is standard practice for GPs to remove patients from their list should they become aware that they have left the practice area, which is known as ‘administrative removal’. GPs are expected to notify NHS England of administrative removals which did occur in LN15’s case. If a patient does not re-register within 28 days then the records are sent to NHS holding services.    15.12 The issues appear to centre on the fact that the responsibility to register a child with a GP lies with the parents. Existing systems with health services which should mitigate risks of children not being registered with a GP require healthcare services to check GP registration status at each attendance. Although implemented in this case when LN15 attended ED, these systems were not effective as the staff were reassured by LN15’s mother’s response that following a house move they were in the process of registering with a new GP and as a result a referral was not made to the liaison health visitor in line with expected policy.  15.13 There is nothing to prevent a parent deregistering their family with a GP practice and not registering again. It is not compulsory to be registered with a GP whether an adult or a child. To amend this there would need to be legislative change. Such legislation would encroach on areas of personal freedoms and patient and parental rights so may attract resistance.   15.14 The Royal College of General Practitioners have advised that there are potential safeguarding concerns if a GP can administratively de-register a child with chronic health needs before a new GP has been identified as taking over the care of that child. Work is ongoing to improve the clinical guidance available to GPs to support decision making in relation to children with long term conditions. The Royal College of Paediatrics and Child Health is working to produce standards for the care of children with long term health conditions. This is due for publication in 2017.     29  b) Consider if agencies had the opportunity to identify and address this gap in his care.  15.15 LN15 was without a GP for the 23 months prior to his death. There were a number of health professionals working with him during this time frame, including a Physiotherapist and the Orthotic department. There were no attendance or review letters which would have been sent to the GP, and therefore there was no recognition of the fact that LN15 was not registered with a GP by these health professionals.   15.16 Although it is not realistic for the physiotherapy service to write to the referring consultant paediatrician or the GP after every appointment if all is well, the outcome of annual physiotherapy reviews could be communicated to them. This may offer a trigger if a child has not been seen by the paediatrician or has no GP. The review has established that not all children have or need an annual physiotherapy review, as this is dependent upon the child’s needs, however all reports written by the physiotherapists are routinely copied to the consultant and GP.  15.17 The hospital has an agreed pathway in place for alerting cases of concern to the paediatric liaison health visitor. This pathway is triggered where no GP is known or recorded. When LN15 attended the Emergency Department he should have been referred to the paediatric liaison health visitor. The Serious Incident Investigation Report (SIIR) completed by the hospital was unable to establish why this did not happen but it was suggested that this may have been influenced by the mother stating that they were in the process of registering with a new GP following a house move. In addition the nurse who dealt with LN15 was new to the organisation.  15.18 A paediatric attendance letter was electronically generated following this attendance but as there was no GP recorded, it remained on hospital systems. The SIIR has deemed that this was an opportunity to raise the matter with a clinician or administrative personnel.  Reconceptualising ‘Did not attend’ to ‘Was not brought’  15.19 Appleton and Powell (2012) undertook a review of the evidence for practice in this area.  As part of their research, they examined the Ofsted Biennial reviews of serious case reviews, and relevant child death review literature (Why Children Die CEMACH 2008, Preventing Childhood Deaths, Sidebottom et al 2008). It was established that 30  missed health appointments were a prominent feature in the SCR/ child death literature.  15.20 The outcome of their research was that in order to encourage health professionals to take a proactive and child centred stance in ensuring the wellbeing and safety of children who miss appointments, ‘Did Not Attend’ should be reconceptualised to ‘Was Not Brought’. To do so would remind professionals to think about the child’s vulnerability and their daily lived experiences. It also clearly puts the focus of responsibility for attendance at appointments upon those with parental responsibility. To describe the missed appointments in these terms focuses the mind more upon parental responsibility, and questions the underlying reasons for why a child would not be brought to so many appointments.  15.21   In addition, it is clear within this case that there was a reliance upon the mother engaging with referral to support services, and that the impact of non-engagement was also upon the child.   Were there indicators of neglect that should have been reasonably identifiable to services throughout their contact with LN15 and if so were the responses of agencies appropriate?  15.22 The physiotherapist had significant involvement with LN15. A review of the notes has indicated that whilst LN15 was seen regularly, there is no record of his presentation or physical development. There is no comment of his general presentation or interaction with his mother. The entries by both the physiotherapist and Healthcare Trust Occupational Therapist focus upon the exercises completed rather than a full overview of his presentation. Having interviewed the physiotherapist it is clear that she had in depth knowledge of LN15 and worked very hard to engage his mother. It was an example of good practice that she sent a letter to the mother via the school.  15.23 It is not evident that professionals were aware of the lack of GP registration or paediatric overview. LN15’s Mother appeared engaged and responsive when she had contact with professionals and her presentation did not raise concerns to those in contact with her, in fact LN15’s mother would alleviate professional concern when raised.  31  15.24 As part of the inquest, LN15’s mother accepted that she had deceived the school in to thinking that she was seeking medical attention for LN15. The school could not have known any different.   15.25 It is evident that LN15’s mother was struggling to manage the demands upon her, as a single mother of two children with additional needs, who was working full time at the time of LN15’s death and had very little family support. She also dealt with house moves and the review has considered that a house that she could afford, local to the children’s school, might have alleviated some stress. Environmental settings and conditions are key to the development of all children and young people, and this clearly includes the impact of housing. One might suggest that some factors, including housing, are even more critical to the functioning of family life of those with a disability. The impact of house moves in this case meant that correspondence with LN15’s mother was sometimes not received, and attempts to provide support, such as the referral to Children’s Social Care, did not progress.  15.26 The review has highlighted that there is evidence of LN15’s mother making decisions about treatment and medication for LN15 without any medical/health professional oversight.  Professionals were unaware of this and there was no sense of professional concern with regard to neglect.   15.27 Improved communication and a multi-disciplinary meeting might have uncovered what was happening, although this would have been dependent upon LN15’s mother being honest with the professionals working with her and LN15. However it is unlikely that a multi-disciplinary meeting would have been held.   Was LN15’s deteriorating health in the weeks leading up to his death identified by agencies and responded to appropriately?  15.28 The chronology of events indicates that school staff and to a more limited extent the rebound physiotherapist were aware of LN15’s deteriorating health in the weeks before his death. The school urged LN15’s mother to seek medical attention and she gave reassurances that she had done so.  It is not evident from the records whether the rebound physiotherapist recommended that medical attention be sought although it is clear from the records that LN15 was not so unwell that he could not undertake the rebound therapy and asked for a free bounce at the end of the session.   32  15.29 LN15’s mother failed to seek medical advice and appropriate treatment during the last few weeks of LN15’s life although she led the school to believe that she had done so. Due to this no agency was aware of the seriousness of LN15’s condition and were therefore unable to influence the tragic outcome for this child.   Did agencies hear the voice of the child and was it acted upon by agencies working with the family? If not, what were the barriers to them doing so?  15.30 A review of the physiotherapy and Healthcare Trust Occupational Therapy notes has indicated that neither LN15’s needs nor global development were recorded by staff providing care to him. In interview the physiotherapist indicated that she was knowledgeable of LN15’s needs and knew him well. He was described as strong willed; would often take persuasion to comply with exercises and was vocal with his views.    15.31 The fact that LN15’s mother intermittently engaged with services was never explored in depth and the reason for this established. Professionals were aware that she was managing a number of stressors and felt sympathetic towards her. The physiotherapist went to significant efforts to engage the mother yet remained focused upon LN15’s needs, evidenced by her arranging to see him in school.   15.32 The impact of his mother’s intermittent engagement with health services upon LN15 was never explored or the problems relating to his incontinence and subsequent constipation considered in the wider context of his physical and emotional well-being. Efforts were made by the school to address toilet training but LN15 was resistant to this. A continence assessment was never completed after the prescription for nappies was stopped and as such management of his ongoing double incontinence was not reviewed. The reason for his incontinence is not known.   15.33 Within the records there is little sense of LN15 as a child, his feelings, his thoughts and how he was coping. This has been established via interviews with the practitioners that knew him and knew him well. Practitioners have described a happy and confident little boy, who was able to express his views. There was no sense of significant professional concern regarding LN15 and he made very good progress, which was felt to be attributable in part to the care provided by his mother.     33  Were agencies sufficiently responsive to LN15’s needs, in particular, those arising from  his disability?  15.34 The interviews with practitioners that knew LN15 indicate that they had a good understanding of his needs and were responsive to these needs.  The school worked well with Physical Disabilities Support Services (PDSS) and the Physiotherapist to meet LN15’s needs within school.  The Physiotherapist made significant efforts to engage his mother.   15.35 One area where there was a lack of focus upon LN15’s needs was when the continence nurse stopped his prescription for nappies based on an unsubstantiated allegation. Given that the school confirmed to her that he was still wearing nappies, her decision to stop the prescription clearly lacked child focus.   16. Changes to Practice  16.1 The partial booking system for children has now ceased at Sherwood Forest Hospitals NHS Foundation Trust. The DNA policy has been amended. The Trust had an action plan in place to manage the risks identified as a result of this case and all actions are now complete (see paragraph 15.2 and 15.8).  16.2 A child in similar circumstances to LN15 would now meet the criteria for the Integrated Community Children & Young People’s Health Programme which covers occupational therapy, physiotherapy, specialist nursing services and the provision of a key worker to be a link between services.  A key worker would have made an impact on the provision of services to LN15 as enhanced communication would have established a lack of paediatric overview and a failure to register with a GP.   16.3 The policy with regard to GP details has now changed within the physiotherapy service. Since LN15’s death, parents are asked at every appointment to confirm their current address, telephone number and GP details.   16.4   As a result of similar learning arising from a review undertaken by Nottingham City Safeguarding Children Board, the inter agency cross authority procedures have been updated to provide greater details with regard to indicators of medical neglect.    34  17. Conclusion and recommendations  17.1 It is evident that there have been improvements to systems and practices but these may not have impacted upon LN15’s death. The purpose of the SCR is to review agency responses given what was known at the time. It is clear that professionals were not concerned about the quality of care being provided to LN15 in the later years of his life. LN15’s mother was clearly trying to manage a number of stressors, as a single parent, and made decisions that she thought were best for her son. Tragically, LN15 was seriously unwell and medical attention was not sought for him which could have prevented his death.   17.2 The following recommendations are made:   i. Nottinghamshire Healthcare Trust  to ensure that annual Physiotherapy reviews are copied to the referring Consultant Paediatrician and the GP.  ii. Nottinghamshire Healthcare Trust and Sherwood Forest Hospitals Foundation Trust  to complete an audit to provide assurance that routine enquires are made with regard to GP registration.   iii. Nottinghamshire Safeguarding Children Board to seek assurance that all agencies have policies in place in respect of parents who disengage from services and have systems in place to monitor compliance with ‘DNA’ policies, which should be reconceptualised as a child not being brought to appointments.    iv. NHS England to review the Royal College of Paediatrics and Child Health standards for the care of children with long term health conditions, due for publication in 2017, and strengthen guidance for GPs on patient de-registration as appropriate.   v. The Independent Chair of NSCB to seek assurance that agencies give due regard to safeguarding children during organisational change and as part of equality impact assessments. This will be included in the NSCB annual section 11 audit. 