Source · Prevention of Future Deaths

Asher Sinclair

Ref: 2022-0272 Date: 4 Sep 2022 Coroner: Lydia Brown Area: West London 2 responses identified · 2 indexed addressees View PDF

AI-generated concerns summaryThe coroner identified that a highly vulnerable ventilator-dependent child did not consistently receive prescribed 2:1 care, and the complex care package lacked appropriate review, quality checks, and escalation of parents' concerns.

Date 4 Sep 2022
56-day deadline 31 Oct 2022 stated in the report
Responses identified 2 of 2
Child Death (from 2015) Community health care and emergency services related deaths

Coroner's concerns

AI summary
The coroner identified that a highly vulnerable ventilator-dependent child did not consistently receive prescribed 2:1 care, and the complex care package lacked appropriate review, quality checks, and escalation of parents' concerns.
View full coroner's concerns
Asher was entirely dependent upon a complex package of care as a highly vulnerable ventilator dependent child. Evidence at inquest was that on numerous occasions he was not provided with the prescribed 2:1 care.

The care package, despite being described as one of the most complex and most expensive was not appropriately reviewed and there was no mandatory system of quality checks or formal review when there was a significant change in family circumstances. Quarterly reviews were not carried out without explanation.

The primary responsibility fell upon the family members, namely Asher’s parents, who were also responsible for other children in the family and employed as teachers. Concerns raised by the parents were not taken for discussion to case conference or professional’s meetings and essentially not followed up at all, leaving the situation in the house dangerous with an ultimately calamitous outcome.

There was a lack of scrutiny or reconciliation of Asher’s care package, which could have identified gaps that needed to be addressed.

Training for the staff involved was unclear to the court and seemingly not in place or inadequate. A high turnover of staff was cited as one of the reasons, but this should have highlighted a need for increased training and scrutiny.

The court was advised that new structures would be in place by July 2022. The production of this report therefore has been delayed to give the opportunity for those systems to be in place and reported to the court.

Responses

2 respondents

NHS NorthWest London

Integrated Care Board
Letter dated 27 Oct 2022 PDF
AI-classified response stance Action Taken
AI-generated response summary

• NHS North West London has established a single children’s continuing care team and implemented a standard operating procedure for consistent service delivery. • Reviews of care packages are now undertaken with families and multidisciplinary teams, recorded formally, and monitored by senior managers. • New contractual requirements for care providers include specific key performance indicators for quality checks and staff competencies, and families are informed of processes for raising concerns.

View full response
Dear Ms Brown,

Re. Response to regulation 28 report to prevent future deaths, following your investigation into the death of Asher William Robert Sinclair.

NHS North West London have reviewed your findings in relation to the sad death of Asher William Robert Sinclair on 8 October 2019. We are committed to ensure that we learn from Asher’s death, to prevent future deaths under these circumstances.

At the time of Asher’s death, the children’s continuing care service was delivered by borough based teams, covering North West London’s eight local authorities. Each team had developed its own local processes for managing children’s continuing care. This led to varying levels of service delivery being in place. Since Asher’s death, the national dissolution of clinical commissioning groups (CCGs) into integrated care boards (ICBs) has resulted in a number of changes being made in the way previous commissioning responsibilities are delivered.

There is now one North West London children’s continuing care team in place that is responsible for providing a consistent, safe, effective and equitable service.

The Team comprises of registered nurses, experienced in the management of children’s continuing care, including assessment and on-going case management. Each case manager has a designated caseload and is overseen by a senior experienced manager. All members of the team receive monthly supervision and regular caseload review.

The Team continue to work within the national children’s continuing care framework (2016). A standard operating procedure has been put in place and a clear process for referral, assessment and delivery of a package of care has been developed.

In accordance with the national framework, reviews are undertaken of all children’s packages of care, initially at three months from a new package of care commencing and then on an annual basis or more frequently where there is a need/change of circumstance identified by the family, care provider or health/social care professional. All reviews are now undertaken with the family and the multidisciplinary team involved in the child’s care. Reviews are now recorded and discussed formally

- 2 - within a multi-disciplinary panel. The responsibility for the performance monitoring of reviews is undertaken by senior managers within the team.

The children’s continuing care case managers now meet at quarterly intervals with the clinical leads for the provider commissioned to provide a children’s care package, within this meeting, the appropriate lead professional for the child is also involved, to identify any clinical concerns and monitor the provision of the package of care, as well as identifying and ensuring that the child’s clinical needs are being safely and appropriately met.

When commencing a package of care, an NHS standard contract is issued to all providers commissioned by NHS North West London which sets out specific key performance indicators, including;

 quality checks required  the requirement to return monthly reports on provision of care  staff competencies assurance required to safely meet the health needs of the child  risk assessments, associated with the provision of the care package

Senior Managers responsible for children’s continuing care and our care brokerage officer meet with commissioned care providers on a quarterly basis to monitor the care packages.

In addition, an individual care contract is issued for each separate children’s package of care, setting out individual requirements, for example:

 the need for 2:1 support and who provides this  what elements of care are delivered as support to the family as opposed to respite periods?

Benchmarking of care is now undertaken to identify hours of support to meet assessed children’s clinical needs. This is also peer reviewed, to ensure safe, fair and consistent packages of care are provided.

A parental agreement has been developed which sets out expectations and responsibilities in regard to parental responsibility. Where parents feel that they are unable to maintain parental responsibility for the care of their child, parents can escalate their concerns initially via their names case manager, continuing healthcare senior manager or via NHS North West London’s complaints team. During the initial continuing care assessment and planning stage, all families are now informed of this process for raising concerns, in addition to further information provided both in a paper based information leaflet, as well as within NHS North West London’s website.

In my new role as the Chief Nursing Officer for NHS North West London, I am currently meeting along with our Director of Nursing, responsible for all age continuing care, with the local Borough Directors of Children’s services. One of the outcomes of these meetings is to ensure that joint care is seamless between the NHS and local authority. NHS North West London acknowledge that this is essential for children with complex health needs, where families have siblings that require support from local authority partners, to facilitate parental responsibility for their child’s health needs.

The NHS procures care packages for children with increasingly challenging complex clinical care needs. Supporting children and families to allow care to be provided outside of the hospital setting, continues to present risks for care providers and the NHS. The ability to reduce these risks will continue to be the responsibility of NHS North West London and I hope that the steps that we have taken since Asha Sinclair’s death will assure you of our commitment to provide children and their families with safe, effective and consistent care.

- 3 -

Response form NHS England

NHS / Health Body
Letter dated 2 Dec 2022 PDF
AI-classified response stance Noted
AI-generated response summary

• NHS England noted the existence of the National Tracheostomy Safety Project (NTSP), which provides resources for paediatric tracheostomy care. • NHS England delivered the 2020 Safer Tracheostomy Care program via a Safety Improvement Programme. • NHS England stated that all Regulation 28 reports are discussed by a working group to share learnings and identify trends across the NHS.

View full response
Dear Ms Brown

Re: Regulation 28 Report to Prevent Future Deaths – Asher William Robert Sinclair who died on 08 October 2019

Thank you for your Report to Prevent Future Deaths (hereafter “Report”) dated 29 July 2022 concerning the death of Asher Sinclair on 8 October 2019. In advance of responding to the specific concerns raised in your Report, I would like to express my deepest condolences to Asher’s family and loved ones and I am very sorry to hear about the tragic circumstances of Asher’s death. NHS England are keen to assure the family and the Coroner that the concerns raised about Asher’s care have been listened to and reflected upon, in the hope that an incident such as this one never occurs again.

I am grateful for the further time granted to respond to your Report, and I apologise to the family for the delay, as I appreciate this will have been an incredibly difficult time for them.

Following the inquest, you raised concerns in your Report regarding:

1) The care package was not appropriately reviewed and there was no mandatory system of quality checks or formal review when there was a significant change in family circumstances. Quarterly reviews were not carried out, without explanation.
2) Concerns raised by the parents were not taken for discussion to case conference or professional’s meetings and were not followed up at all, leaving the situation in the house dangerous.
3) There was a lack of scrutiny or reconciliation of Asher’s care package, which could have identified gaps that needed to be addressed.
4) Training for the staff involved was unclear and seemingly not in place or inadequate. The high turnover of staff reported should have highlighted a need for increased training and scrutiny.

The National Tracheostomy Safety Project (NTSP) exists to provide a wide range of resources and materials to support those providing care to these patients, both in hospital and in the community. This also extends to children with permanent/long term tracheostomies where it is recognised that care requires significant skill, knowledge and training. The NTSP has a bespoke and comprehensive paediatric section relevant to this. National Medical Director NHS England Wellington House 133-155 Waterloo Road London SE1 8UG

02 December 2022

I understand that the incident described in your Report occurred in October 2019. Additional work has been done since then to further improve tracheostomy care, including the 2020 Safer Tracheostomy Care program, which was delivered via a Safety Improvement Programme through NHS England (NHSE). As well as this, the child health outcome programme, commissioned by the Healthcare Quality Improvement Partnership (HQIP), on behalf of NHSE, looked at long-term ventilation in children and young people aged 0-25 years and published their findings in February 2020:

ventilation/#.Yys6bnbMKUk. The recommendations in the report included the need for emergency healthcare plans and planning/commissioning integrated care.

I have had sight of NHS North West London’s (NWL’s) response dated 27 October 2022, which addresses training and supervision, as well as the planning and oversight of care packages. I understand that the NWL children’s continuing care team still work within the Department of Health’s National Framework for Children and Young People’s Continuing Care, published in January 2016. In addition, NWL confirm that a parental agreement has been developed which sets out expectations and responsibilities in respect of parental responsibility, and how parents can escalate concerns regarding the care of their child.

NWL’s response also explains the position regarding the dissolution of clinical commissioning groups (CCGs) into new structures called integrated care boards (ICBs), which took place in July 2022, and how commissioning responsibilities are now delivered. I have therefore not addressed this further in NHSE’s response.

I would like to provide further assurances on the national NHSE work taking place around the Reports to Prevent Future Deaths. All reports received are discussed by the Regulation 28 Working Group, comprising Regional Medical Directors and other clinical and quality colleagues from across the regions. This ensures that key learnings and insights around events, such as the sad death of Asher, are shared across the NHS at both a national and regional level, and helps us to pay close attention to any emerging trends that may require further review and action.

Thank you for bringing these important patient safety issues to my attention and please do not hesitate to contact me should you need any further information.

Report sections

Investigation and inquest
On 24 October 2019 I commenced an investigation into the death of Asher William Robert Sinclair, age 3. The investigation concluded at the end of the inquest on 24 January 2022. The conclusion of the inquest was

Medical cause of death - 1a Hypoxic Ischaemic Brain Injury 1b Out of Hospital Cardiac Arrest 1c Displaced Tracheal Tube (Trachael tube dependant) II Neonatal enterviral myocarditis and encephalitis (trachael ventilator dependant and cardiac pacemaker)

Asher died on 8th October 2019 in Great Ormond Street hospital when his life support mechanisms were withdrawn.

Asher Sinclair was entirely dependent on artificial ventilation due to a neonatal brain stem injury and required 24 hour care at a ratio of 2:1 at all times. The parents provided much of this care, but a complex community package was also commissioned and should have been operated to meet his clinical needs. There were deficiencies in the training, planning and oversight of the package of care by both the care agency and the commissioning body. Near misses and warning signs were not escalated appropriately or at all, and the clear problems were not addressed, leaving Asher, his parents and those directly responsible for providing the care in a repeatedly dangerous situation. Reviews at all levels were inadequate, perfunctory and not fit for purpose. On 3rd October 2019 Asher was left in the care of a sole nurse. His tracheostomy tube became dislodged and the nurse failed to follow the emergency procedure or use the full kit that was readily available in the same room. The first aid she did provide was ineffective as she did not secure his airway first. He was deprived of oxygen until the paramedic crews arrived over 9 minutes later and only then was the airway secured. He sustained a hypoxic injury from which he did not recover. Asher's death was a direct and foreseeable consequence of the failings in delivery of his care package. Neglect by the agency, commissioners and nurse on duty contributed to this tragic outcome.
Circumstances of the death
See above
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Report details

Reference
2022-0272
Date of report
4 September 2022
Coroner
Lydia Brown
Coroner area
West London

Responses identified

Responses identified 2 of 2
All listed responses identified

Organisations named in PFD reports are normally expected to respond within 56 days. Deadline: 31 Oct 2022 (stated in the report).

Sent to

Clinical Commissioning Group
NHS England

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