Dear Ms Hayes I am writing further to the inquest into the death of William Brian Kin Gray, which concluded on 22 November 2023. I understand that you heard evidence from a number of Trust witnesses during the inquest. Following this you made a Regulation 28 Preventing Future Death report on 8 December 2023 outlining your concerns and I have responded to these below: Learning and sharing lessons learned is a function of investigation. The Trust investigation report did not: (a) scrutinise the ambulance attendance to William on 27 October 2020 in comparison to the attendance on 29 May 2021 and missed an opportunity to understand:
i. the importance of the administration of adrenalin during a life-threatening asthma attack in accordance with the JRCALC guidelines and that there may be additional training needs. Two paramedics attended both on 27 October 2020 and 29 May 2021 but did not consider the administration of intramuscular adrenalin on the second occasion.
ii. Whilst life-threatening asthma in children is an extremely rare call , the same two paramedics attended on 27 October and 29 May and initial treatment given differed during a life-threatening asthma attack. It was clear from the evidence given at the inquest and from the crew's previous attendance to this patient that adrenaline could have been administered to William in accordance with the JRCALC guidelines. The crew were aware of the guidelines and this is not disputed. It was a challenging and busy scene and this contributed to the crew omitting to administer adrenaline. The Trust has completed work over the past year in relation to human factors and how these influence behaviour at work in a way which can affect safety. Posters have been disseminated across the region and pop-up banners are being used at engagement events across the Trust. The Patient Safety Team have also included information around human factors in the Safety Matters Newsletter, which is a monthly publication shared with all staff, and released a podcast last year on human factors. There are two training modules available to staff, which have been publicised as well. In order to raise further awareness, a case study will be included in the Safety Matters Newsletter and the Trust's pharmacist will include information around the benefits of IM adrenaline being administered to a patient with life-threatening asthma together with the appropriate point to administer this. The aim is to demonstrate to staff the physiological benefits of administering in this situation. Chief Executive:

Chair: Mrundal Sisodia

#WeAreEEAST

For adult patients, the Trust used to have access to pre-filled IM adrenaline syringes and a report will be taken to the Trust's Medicines Management Group for consideration. Paediatric patients are not administered with a set dose and the clinician needs to draw this up separately dependant on age/weight in line with JRCALC guidance.
iii. That the ambulance crew focused on the airway to exclusion of other treatment options and did not recognise the significant amount of inflation pressures that are required to manage the airway of an asthmatic child in respiratory arrest. Crew were misled in thinking that the airway adjunct equipment was not the correct size as a consequence and were swapping the adjuncts. Information pertaining to the difficulties securing airways for asthmatic patients will be shared in the Safety Matters newsletter as part of the case study. The Trust has also contacted the Asthma and Lungs UK charity to establish if we could undertake shared learning or work with them to produce further resources for our staff.
iv. that the same paramedic was left managing an airway throughout the arrest despite the arrival of more experienced colleagues that arrived as backup, including a Local Operations Manager until HEMS took over. Attendance to a paediatric asthma attack that leads to cardiac arrest is very rare for ambulance clinicians to experience. A handover should be undertaken when new clinicians are arriving on scene and this is the responsibility of both parties to engage in line with human factor training. A case study of our attendance to William will be included in the Safety Matters newsletter, which will include further inform_ation relating to the importance of handover communication when new clinicians arrive on scene. The Trust did not address the issues at 3 (a) i-iv above in their annual training following William's death and no alerts or learning notes have been circulated. (b) East of England Ambulance NHS Trust investigation did not identify a number of risks and omissions in its investigation of this child death:
i. inflation pressure being a potential cause of failure to secure a paediatric airway adjunct in life threatening asthma the consequence of this being increased ventilations pressure would be required
ii. Intramuscular adrenalin was not administered for life threatening asthma for a child in respiratory arrest in accordance with JRCALC
iii. Intravenous adrenalin was not given or attempted when the patient went into cardiac arrest in accordance with the resuscitation guidelines and lntraosseous access was not attempted for a child in cardiac arrest for at least 10 minutes and only when the patient was in the ambulance. The Trust has recently recruited six Resuscitation Officers across the region. Part of their role is to improve our response to critically unwell patients by designing a new cardiac arrest training programme and provide coaching to clinicians. The delay in administering IV adrenaline and gaining intraosseous access has been brought to their attention and will be included as part of this updated training. Chief Executive:

Chair: Mrundal Sisodia

#WeAreEEAST

In terms of i) and iii), I have set out the actions the Trust is taking above. (4) The Trust issued a Clinical Instruction on 17 September 2020 that paramedics must not insert endotracheal tubes as a safety measure to avoid adverse incidents as there was a difficulty in keeping paramedics skills up to a level of competency. Evidence was heard that the Trust has since revised its policy and reintroduced endotracheal intubation for a specialist cohort of paramedic crew:
i. The Trust treatment for those aged 12 and over permits endotracheal intubation by those ambulance crew with specialist qualifications however, they cannot intubate children under 12 who are entirely reliant on HEMS arriving in sufficient time if the airway cannot be sufficiently managed.
ii. Essex is a large county and there are very few paramedics trained on any one shift to provide endotracheal intubation
iii. there is a difference in provision of life-saving treatment in Essex between those over 12 and for children under 12 and HEMS is a charity with very limited resource across a very large county. There is strong scientific evidence that endotracheal intubation, like any skill, requires regular exposure and practice to ensure proficiency in those moments when it is needed and there is evidence of poor success rates without regular exposure and practice. On average, research has shown that the average paramedic may be required to intubate an adult patient between 1-3 times a year. It has also shown that the need to intubate a child is even less than that and is about once every three to four years. These numbers are not sufficient to maintain competency and the skill was removed for patient safety reasons. This is in line with other NHS Ambulance Services across the country. The majority of airways in both adults and children can be managed without intubation but by the use of a Supraglottic airway. Currently Specialist Paramedic/Advanced Paramedic/Consultant Paramedic roles in Critical Care and HEMS teams are authorised to intubate patients below the age of 12 in the East of England. There are plans to introduce Advanced Paramedics in Critical Care cars across the region, one per Integrated Care Board area, as part of the advanced practice program roll out. Your report also referred to the Serious Incident investigation and missed opportunities for learning. Since this investigation, the Trust has implemented the Patient Safety Improvement Response Framework, which was produced by NHS England and sets out the approach to developing effective patient safety systems and learning from these incidents. The approval process for identifying actions from patient safety incidents is now more robust in that an Action Setting Group meets fortnightly to review incident reports and set appropriate actions. I hope this provides you with assurance in relation to the actions the Trust is taking in relation to this sad event and I am happy to provide a further update on these actions in the coming months. Please do not hesitate to contact me should you require any further information.

Chief Executive Chief Executive:

Chair: Mrundal Sisodia

#WeAreEEAST

Dear Ms Hayes

Regulation 28 Report- Master William Gray I write further to your Regulation 28 Report to Prevent Future Deaths (PFDR) dated 8 December 2023. I have been appraised of the Inquest findings in relation to Master William Gray, and your concerns relevant to our Trust contained within the PFDR report as follows: “Mid and South Essex NHS Foundation Trust (1) Experienced hospital paediatric doctors all gave evidence that they were unaware that administration of intramuscular adrenaline by paramedics is part of the Joint Royal Colleges Ambulances Liaison Committee JRCALC protocol for life-threatening asthma. The beneficial effects of the administration adrenalin was not considered, William’s presentation on arrival at hospital was falsely reassuring.” The Inquest findings in this tragic case have highlighted the need for our training to specifically include the potential impact of pre-hospital resuscitation measures on our patients. Following the Inquest conclusion in November 2023, our clinicians immediately shared the learning with their teams to raise awareness of the JRCALC protocol on managing severe asthma in children, and since then, a plan has been devised for wider learning. Consultant Paediatrician, who you will be aware was a witness at the Inquest hearing for Master Gray, has been collaborating with colleagues to produce training materials and a robust plan to train medical and nursing staff. Attached to this letter is a copy of the slides that will be used to deliver the first training session to staff on 30 January 2024, ‘Understanding medicines in asthma’. Slide ten will focus specifically on the role of Adrenaline in treating acute asthma, both in-hospital and pre-hospital settings.

We recognise that this training must be repeated and refreshed to capture new staff joining/moving across specialties. We must also keep abreast of clinical developments and any changes to protocols/guidance. Therefore, this training will be reviewed and repeated at least on a quarterly basis, and the training attendance records will be kept monitoring compliance. In addition to this, a comprehensive email was sent to consultants and junior medical staff regarding the use of Adrenaline in pre-hospital asthma resuscitation by ambulance crew, and the potential impact it has when patients are assessed at the hospital. The email reminded the clinicians that where Adrenaline has been administered out of hospital, the patient should remain in hospital for detailed review and assessment for a minimum of 12- 24 hours to facilitate planning of further management. Please see attached email of 10 January 2024 for your reference. These actions together with our Serious Incident Investigation action plan will ensure that staff are fully aware of potential out of hospital use of Adrenaline for not only life- threatening Asthma, but also Cardiorespiratory arrest in both Asthma and Anaphylaxis. We appreciate this opportunity to demonstrate further learning, and I can personally assure you that we are absolutely committed to improving the safety of our patients. If you have any further concerns or you would like to discuss this case further, please do not hesitate to contact me.

Dear Ms Hayes

WILLIAM GRAY (DECEASED)

I am writing in response to the preventing future deaths report we received at the Association of Ambulance Chief Executives (AACE) dated 8th December 2023, and I respond as the Director of Operational Development and Quality Improvement on behalf of the AACE. On behalf of AACE, I would also like to extend our sincere condolences to the family of William.

It may be helpful for us to explain that AACE is a private company owned by the English and Welsh NHS ambulance services. Its purpose is to support its members, UK NHS ambulance services, in the implementation of national agreed policy and to act as an interface, where appropriate at a national level, between them and their stakeholders. It is a company owned by NHS organisations and possesses the intellectual property rights of the Joint Royal Colleges Ambulance Liaison Committee UK ambulance service clinical practice guidelines (the “JRCALC guidelines”). AACE is not constituted to mandate or instruct ambulance services however it has national influence via the regular meetings of ambulance chief executives and chairs along with a network of national specialist sub-groups.

With regard to your matter of concern relating to ambulance services:

Life threatening childhood asthma is a rare occurrence for ambulance paramedics and the Joint Royal Colleges Ambulances Liaison Committee (JRCALC) Guidelines sets out treatment for it, however as paramedics rarely attend:

a. Clarity is required on what should be categorised as a life-threatening asthma. With guidance to enter the algorithm immediately to administer intramuscular adrenalin the purpose being to avoid cardiac arrest. Paramedics are more familiar with administration of intravenous adrenalin during resuscitation once cardiac arrest has occurred.’

b .Does not contain clear guidance or advice on what to do when crew cannot ventilate, cannot oxygenate.

c. or when to abort repeated unsuccessful attempts to secure an airway and progress to hospital

d. Inflation pressure being a potential cause of failure to secure a paediatric airway adjunct in life threatening asthma the consequence of this being increased ventilations pressure would be required.

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Thank you for bringing these tragic circumstances to our attention and allowing us to consider how our own guidance might be improved. The JRCALC guidelines are advisory and have been developed to assist paramedics make decisions about the management of the patient’s condition , including treatments and to support clinical practice.

The advice is intended to support the clinician’s decision-making process and is not a substitute for sound clinical judgement. We recognise that the guidelines cannot always contain all the information necessary for determining appropriate care and cannot address all individual situations; therefore, we expect that paramedics using JRCALC guidelines ensure they have the appropriate knowledge and skills to enable suitable interpretation. JRCALC guidance is not intended to be a full medical textbook, and therefore underpinning knowledge around conditions such as asthma is expected, and this should include an understanding of the pathophysiology of asthma and how the condition affects the airways.

JRCALC provides specific guidance for asthma in adults and children. Many of the guidelines contain key points, and included in the key points in the asthma guidance are:

• Asthma is a common life-threatening condition.
• Its severity is often not recognised.
• A silent chest is a pre-terminal sign.
• Bronchodilators are the mainstay of treatment.
• Ipatropium bromide should be considered in severe cases.
• Clinical assessment should determine the severity of the asthma attack.
• Consider magnesium in life-threatening asthma not improving with continuous nebulised salbutamol.
• Consider adrenaline for life-threatening asthma continuing to deteriorate with continuous nebulised salbutamol.

The guideline highlights that that there should be a specific assessment of the severity of the asthma attack and contains a table describing the features of severity. It also contains an algorithm detailing how to manage an asthma attack depending on the severity. It does also detail when to consider administering adrenaline.

At the JRCALC committee meeting on 9th January 2024 we discussed this preventing future deaths report as an agenda item. A decision was made to undertake a review of the guideline and particularly the assessment and management algorithm and decide if it can be made clearer and have more detail and emphasis on the use of adrenaline.

With regard to airway management, the JRCALC guidelines provide guidance in the resuscitation sections on managing an airway and using a stepwise approach including considering when to progress from one airway technique to another. As you will be aware, airway management is a practical skill and needs regular training and practice which is beyond the scope of JRCALC to mandate. It is for the individual clinicians and the organisation that they work for to ensure the competency of airway skills and agree which advanced airway skills and airway adjuncts should be used. In managing a difficult airway such as in the case of life threatening or near fatal asthma, part of the training of a paramedic would be to understand the potential difficulties that may be encountered and the strategies that may need to be considered in each individual case. This includes decisions about calling for enhanced help and urgent transport to definitive care.

We are aware that most ambulance services do not support intubation by all paramedics. We know that it is a skill used by some paramedics, mainly where they have received additional training and are able to maintain their competency. Our guidance states in relation to tracheal intubation:

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The tracheal tube is a challenging airway device to insert successfully and requires both adequate initial training and ongoing practice. Paramedics must ensure that they have appropriate competence to undertake it safely and that this skill has been regularly updated and evidenced through maintaining an airway skills log. There is no evidence that patient outcome is any better following tracheal intubation compared with any other type of airway. Where, as a paramedic, the governance system you work within allows you to intubate, you should only do so if you have maintained your skills and have evidence of self-audit with a success rate of greater than 95% success rate within two attempts.

In the advanced life support (ALS) for children guidance it states:

During ALS, the priority remains the delivery of high-quality chest compressions and effective ventilations with high-flow oxygen. Particular focus should be to ensure reversal of any hypoxia.

Supraglottic airways (SGAs) may be considered if BVM (bag valve mask) ventilation is ineffective.

Intubation is rarely indicated and should only be undertaken by those with appropriate skills, according to local protocols and only when waveform capnography is available.

In summary, we have reviewed our JRCALC guidance in relation to the matters of concern you have raised and will now review the asthma guideline and make changes if these are deemed to be required. We will also share the details of your concerns with our national ambulance service medical directors’ group (NASMeD). They have regular meetings where learning from incidents and preventing future death reports are discussed. We will suggest that medical directors of the UK ambulance services consider if they believe any further education or awareness is needed for their clinicians, in relation to airway management and asthma and particularly in relation to considering administering adrenaline in asthma.

I hope this response has adequately addressed the concerns that you have raised. If you have any further questions, please do not hesitate to get in touch.

Dear Ms Hayes

Master William Brian Kin Gray (RIP)

I write to set out the Trust’s formal response to the report made under paragraph 7, Schedule 5, of the Coroners and Justice Act 2009 and regulations 28 and 29 of the Coroners (Investigations) Regulations 2013, dated 8th December 2023 in respect of the above, which was issued following the inquest into the death of William Gray (RIP) .

I would like to begin by extending my deepest condolences to William Gray’s family. The Trust sympathises with their very sad loss of their young child.

The matters of concern as noted within the Regulation 28 Report have been carefully reviewed and noted. I will now respond in full to these concerns in the hope that this provides both yourself and William Gray’s family with comprehensive assurance of changes that have been made at the Trust to address the concerns you have raised.

Concern a) The Asthma & Allergy Children’s and Young Persons Service (the Service), at the time of William’s initial referral to the Service in 2018 this consisted of one nurse for approximately 2000 children, and this increased to two nurses in November 2020. The evidence heard is that whilst the number of nurses has increased so has the geographical area that the Service covers, and that there are ongoing plans to increase this further. The Service remains under resourced whilst attempting to expand.

Response: We agree that there were demand and capacity challenges in the service which the Trust has raised with local commissioning bodies over time to try to resolve. This matter was first raised in 2018 and continues to be discussed with the local Integrated Care Board.

The Trust has noted the valid concerns raised by the family as well as the Court in terms of resource, and has again reflected on service need and the required resources in order to meet demand.

In line with the evidence presented as part of this Inquest, the Trust had a 1.0 whole time equivalent (wte) Band 6 in post at the time of the incident to deliver a community specialist asthma and allergy service. The role had a large caseload, however the remit was narrower

than it is currently. The role provided telephone review assessments, face to face initial patient assessments in local clinics, attendance at multi- disciplinary meetings and Asthma and Anaphylaxis training and education to local school nurses and health visitors, as well as in preschool nursery settings.

In 2018 EPUT co-hosted a South East Essex Children Asthma and Allergy system-wide workshop where the benefits realised by the limited service was widely recognised.

The Commissioners agreed to support the development of a business case for additional investment. The service reviewed the national models of good practice and with the support of the Commissioner, prepared a business case for additional investment into the existing service. Unfortunately due to the Covid pandemic, this was delayed as the Commissioners were redeployed to alternative roles. Subsequently, an opportunity arose to apply to NHS England for pilot monies to expand the integration into primary care networks and to promote the ‘Asthma Friendly Schools Initiative’. The business case prepared for the expansion of the existing team at the previously co-hosted workshop was submitted to NHS England requesting an additional 8.0 wte Band 6s to deliver an enhanced service in South East Essex. In 2021 the service was awarded an additional 3.0 wte Band 6s to deliver a pilot in local surgeries and to implement the Asthma Friendly Schools Initiative. Whilst the Trust was not awarded the full application of 8.0 wte, we were able to recruit to 3 further roles which has had a positive effect on service delivery.

The service continually endeavours to work hard to improve and deliver a responsive service to those who are referred to the Asthma and Allergy Service for support. Service provisions and compliance is monitored to ensure we continue to maintain a responsive service. Further, children are safety netted via signposting to GP’s and charities such as Asthma + Lung UK and Allergy UK.

Since 2018 the service has seen an increase in the complexity of need in the local population and observed challenges for patients and parents accessing timely support from both primary and secondary care. In collaboration with the Commissioner and Secondary Care, the service has responded to system pressures by upskilling our nurses in non-medical prescribing, Tier 4 Asthma training and Association for Respiratory Technology & Physiology (ARTP) accredited Spirometry training. This has afforded the service users the option of opting to access the service more frequently as it is more accessible- for example for prescriptions, preventative inhalers, and spirometry assessments and for support to progress secondary care referrals.

In light of the service increasing its levels of expertise, it was viewed as a one stop shop for all types of requests from minor to urgent, however, the service now has clearer communication pathways for responsibility of care according to clinical need.

Whilst the total patient caseload has remained similar to previous years the number of patient contacts (face to face and non-face to face contacts) has increased substantially -by 75.5% in 2023 compared to 2018. The service strives to remain accessible but to maintain a safe and efficient level of service provision, a review of the existing support issued by the ICB has been commenced.

The above detail is set out in an effort to demonstrate to the Court, the acknowledgment that greater support is required in relation to demand, and the plans in place to address this.

It is of note that the geographical boundaries of the area remains the same but the population has grown and the referral volume has increased by 75%.

Due to the close working relationship between the Service and the ICB and the ideas generated for service development, NHS England has awarded monies to develop and implement the following:

• The Asthma Friendly Schools training to educational staff to ensure safety of children and young people within school.
• To upskill the GP practice nurses and enhance the GP’s knowledge regarding evidenced based medicine management,
• Direct patient care will continue to be delivered and remain in South East Essex only.

The service developed an internal service development plan and a project group with the full engagement and support of the ICB Commissioner, who has also been advised of the content of this Regulation 28 Report.

The clinical lead nurses attend the bi-monthly Mid and South Essex Asthma and Allergy Network meetings (which includes attendance by the MSFT Specialist Consultant Clinical Lead and the Primary Care Networks Clinical Lead) to engage and collaboratively work together to deliver more joined up care and develop clarity and understanding of functions. The team participates in the East of England Asthma network comprising of a number of expert multidisciplinary professionals in the speciality of asthma who share best practice and ideas for further service development.

Prior to this Inquest, the service had already recognised improvements were required to effectively and safely improve the efficacy of clinical practice and continues to do so on a daily basis:

• Reviewing the service eligibility criteria
• Partnership working with the integrated care system to ensure the service remit is understood to be a supportive specialist service and not an urgent /emergency service. This remains the remit of primary and secondary care.
• Reviewing the SOP and Service Business Continuity Plan
• Reviewing the care pathway with partners
• Remodelling the community specialist asthma service offer – with engagement from system partners so there is greater clarity on roles and functions of all
• Review of the assessment templates and proforma documents to ensure equity and consistency of the assessments undertaken and the documentation recorded.
• Review care plans, symptom management plans, and letter templates
• Reviewing the eligibility of the respiratory caseload
• Review of the rag rating criteria of the Amber/Red/black critical caseloads to ensure the correct process of the next steps are identified i.e. once stable referral back to primary care (Amber). If remains uncontrolled, despite supportive management, onwards escalation and referral to secondary care (red) and tertiary care (black critical
• The Service holds clinical supervision once a month.
• The Service holds Difficult Asthma Meetings with the secondary care team every 3 months and a monthly Difficult Asthma Meeting within our team.
• Difficult Asthma Clinic held once a month at the hospital between the service and Secondary care team
• Continued good relationship with Secondary Care team who supports our service in caring for the patients
• Implemented the use of video conferencing (AccuRx) to visually perform remote assessment, although please note this does not afford the opportunity to perform chest auscultation which would indicate the presence of wheeze. This method of virtual assessment can demonstrate the teaching of peak flow and inhaler technique and enable

assessment.
• Timetable of clinics encompassing face to face assessments, AccruRx and telephone review assessments.
• Dedicated appointments times pre-booked in advance to ensure parent/carer/ patient response uptake
• We are working closely with our Commissioners at MSE ICB to continue to seek opportunities for additional resources whilst transforming the service within current staffing capacity.

Concern b) The Service continued to operate during the pandemic and did not introduce video calls when they could not make face-to-face attendances. There was no risk assessment of the impact on the Service, and no audit of whether this was sufficient to manage the Service. There is no contingency plan in place should this issue arise again

Response: The Children’s Asthma and Allergy Service have learnt many lessons from the practices undertaken during the pandemic and recognise video consultations could have benefitted patients at the time and may have helped improve the review assessments and important patient observations, and the service regrets that AccuRx (video consultation platform) was not deployed earlier.

Following a successful pilot of the AccuRx, the service has now implemented its use and blended this into the timetable of review assessments, offering service users an initial face to face clinic assessment, followed by a review assessment utilising AccuRx. With the option of an additional telephone review assessment. The app helps improve communication between the Service and service users. The patient image feature in AccuRx is designed to enable patients to attach images to provide clinicians with the additional information to inform their care. The Business Continuity Plan has been updated which now includes the use of video consultations and alongside new and additional aerosol generating safe venues for face to face assessments such as the bespoke Clinician at Rochford Hospital and specially identified clinic spaces in primary care settings risk assessed to be covid secure. The Standard Operating Procedure (SOP) and Business Continuity Plan now include clarity on when video consultations should be considered for use:

The service criteria for utilising AccuRx is the following;

• To be used as the preferred contact following the initial assessment.
• Any child/young person where there are concerns regarding inhaler or peak flow technique
• Any child/young person where there may be safeguarding concerns and face to face appointments are difficult to obtain.
• Any young person who are in their GCSE years or undertaking exams.
• A home where there is suspected damp/mould.

AccuRx does not replace the importance of seeing the patient in a face to face setting therefore if there are concerns regarding the patient, utilising face to face clinics/home visits will be a priority over AccuRx or telephone clinics.

Concern c) The Service relied on telephone contact, Nurses did not speak to William although he was old enough to be involved in his care

Response: Current practice is to ensure all nurses request to speak with the child, if they are old enough, at all consultations - whether this is via telephone or video. During face to face clinic

appointments and home visit consultations, the Child / Young Person (CYP)’s view of their asthma is recorded within the voice of the child section of the electronic patient record to ensure all relevant parties including the GP and acute care clinicians are able to view this.

The service model provides pre-booked appointments determined by clinical triage and acuity of clinical presentation, which affords service users the opportunity and dedicated time to seek supportive management; however this provision is flexible according to patient clinical need. Record keeping is undertaken at each consultation to ensure contemporaneous and accurate documentation, to include potential referral and escalation to secondary care.

The outcome of all clinic consultations are documented within the patient record. Annual record keeping audits are undertaken monitor the consistency of assessments. This practice is further monitored during clinical supervisions sessions, caseload reviews and random spot checks.

Lessons learnt

In order to continue to learn lessons from this unfortunate tragic event, the service has undertaken a review of the existing capacity and demand, to identify the maximum effectiveness and efficiency of the current resource for the service user. Resulting in a refined service model with a robust patient journey either returning to primary care once stabilised or transition onwards to either secondary or tertiary care. As a way in which to manage risk, asthma care is shared amongst the multidisciplinary team, which includes primary care, secondary care and tertiary care.

Whilst being mindful of not repeating the evidence provided to your Court during this Inquest, we respectfully re-iterate the assurances set out in the learning statement submitted during the inquest and the subsequently developed Action Plan to monitor compliance for the service which highlighted the following:

a) To ensure evidenced-based education and training for all MSE paediatric staff regarding medical devices involved in the management of Asthma. This was completed accordingly with the ward staff at Southend Hospital and then the subsequent employment of the acute clinical nurse specialist for asthma has continued with this for all acute paediatric staff.

b) All CYP to receive a written Asthma Action management plan at each children’s community Asthma & Allergy nurse consultation. The service has adopted and implemented the BEAT asthma/wheeze action plan.

c) The Children’s Community Asthma and Allergy (CAAS) referral form content has been reviewed and updated to provide safety netting and prioritisation or exclusion criteria. This has been completed and revised in accordance with the clinical lead for the integrated care system.

d) CAAS assessment of CYP medication and inhaler technique – medication storage and environmental factors. This is assessed at every face-to-face visit and is discussed during video consultation/ telephone reviews.

e) Upon discharge from the acute provider, an initial contact is actioned within five working days from hospital discharge, pending a face to face initial assessment scheduled within two weeks. Allocation of the Rag rating criteria to support patient directed contact

f) All CYP presenting to the ED with a suspected diagnosis of asthma are reviewed by the CAAS. The service is offered to those who have attended the ED on one occasion.

g) Complex patients with uncontrolled asthma are reviewed by the lead paediatrician and CAAS at the monthly joint clinic and excellent collaborative relationships established.

h) The outcome of all clinic consultations are documented within the patient record. Annual recordkeeping audits are undertaken to demonstrate compliance with the recordkeeping template to ensure equity and consistency of the assessments.

i) Since the pilot integration of the children’s asthma and allergy service into the primary care networks, all GP practices have been requested to share access of the patient record , which means the nurses are able to view the prescription history prescribed for the patient by the GP./practice nurse.

j) The service has developed a protocol which includes the required frequency of contacting patients, investigations required, symptom management and a robust guide on how to recognise and escalate patients who have high risk asthma. Patients/families are now specifically asked how many times they use their inhaler, i.e. it was previously more than 3 times a week – This has now been amended to more than 2 times a week. Additional questions such as symptoms affecting their sleep and ability to take part in activities/exercise are also enquired. If the patient has sufficient developmental understanding, the Asthma Control Test score is implemented

k) Complex uncontrolled asthma patients who have progressed through the Amber caseload with minimal improvement are discussed at peer clinical supervision sessions and difficult asthma meetings as appropriate. Caseload reviews are undertaken with the team at three monthly intervals with the RAG rating allocated, in order to apply the relevant safety netting for the service user.

l) All service providers to ascertain if parents/carers are able to read written care advice or directions provided. Documented within the patient record and a number of translated care plans are available to families

m) Databases are compiled / reviewed of all service users who have been offered appointments and declined the service offer

n) All CAAS staff to undertake the online smoking cessation course, completed for existing staff members and will be provided to new starters in the event of staff recruitment.

o) All staff receive notification of updated nice guidance, this is circulated for information and the service is measured against the baseline assessment tool provided by NICE.

p) All new starters on induction to the services receive the relevant SOPs/ policies

q) To continue to develop links between universal services and the CAAS to improve education and training, to promote safe management, by addressing potential symptom management concerns/issues. Attendance at the universal services education forums is timetabled on a rolling programme and a database collated.

I hope that I have provided reassurances around the steps that we have taken to address the issues of concern contained within your report. We know there is an acute need to embed and effect change, hence we will monitor the above provisions to ensure these are contributing to our overall aim of keeping patents safe and delivering therapeutic care.

Please do let me know if you require any further information at this stage, including copies of any of the documents referred to above.

We will await your direction before sharing a copy of this reply with the family.

Dear Ms Hayes

Master William Brian Kin Gray (RIP)

I write to set out the Trust’s formal response to the report made under paragraph 7, Schedule 5, of the Coroners and Justice Act 2009 and regulations 28 and 29 of the Coroners (Investigations) Regulations 2013, dated 8th December 2023 in respect of the above, which was issued following the inquest into the death of William Gray (RIP) .

I would like to begin by extending my deepest condolences to William Gray’s family. The Trust sympathises with their very sad loss of their young child.

The matters of concern as noted within the Regulation 28 Report have been carefully reviewed and noted. I will now respond in full to these concerns in the hope that this provides both yourself and William Gray’s family with comprehensive assurance of changes that have been made at the Trust to address the concerns you have raised.

Concern a) The Asthma & Allergy Children’s and Young Persons Service (the Service), at the time of William’s initial referral to the Service in 2018 this consisted of one nurse for approximately 2000 children, and this increased to two nurses in November 2020. The evidence heard is that whilst the number of nurses has increased so has the geographical area that the Service covers, and that there are ongoing plans to increase this further. The Service remains under resourced whilst attempting to expand.

Response: We agree that there were demand and capacity challenges in the service which the Trust has raised with local commissioning bodies over time to try to resolve. This matter was first raised in 2018 and continues to be discussed with the local Integrated Care Board.

The Trust has noted the valid concerns raised by the family as well as the Court in terms of resource, and has again reflected on service need and the required resources in order to meet demand.

In line with the evidence presented as part of this Inquest, the Trust had a 1.0 whole time equivalent (wte) Band 6 in post at the time of the incident to deliver a community specialist asthma and allergy service. The role had a large caseload, however the remit was narrower

than it is currently. The role provided telephone review assessments, face to face initial patient assessments in local clinics, attendance at multi- disciplinary meetings and Asthma and Anaphylaxis training and education to local school nurses and health visitors, as well as in preschool nursery settings.

In 2018 EPUT co-hosted a South East Essex Children Asthma and Allergy system-wide workshop where the benefits realised by the limited service was widely recognised.

The Commissioners agreed to support the development of a business case for additional investment. The service reviewed the national models of good practice and with the support of the Commissioner, prepared a business case for additional investment into the existing service. Unfortunately due to the Covid pandemic, this was delayed as the Commissioners were redeployed to alternative roles. Subsequently, an opportunity arose to apply to NHS England for pilot monies to expand the integration into primary care networks and to promote the ‘Asthma Friendly Schools Initiative’. The business case prepared for the expansion of the existing team at the previously co-hosted workshop was submitted to NHS England requesting an additional 8.0 wte Band 6s to deliver an enhanced service in South East Essex. In 2021 the service was awarded an additional 3.0 wte Band 6s to deliver a pilot in local surgeries and to implement the Asthma Friendly Schools Initiative. Whilst the Trust was not awarded the full application of 8.0 wte, we were able to recruit to 3 further roles which has had a positive effect on service delivery.

The service continually endeavours to work hard to improve and deliver a responsive service to those who are referred to the Asthma and Allergy Service for support. Service provisions and compliance is monitored to ensure we continue to maintain a responsive service. Further, children are safety netted via signposting to GP’s and charities such as Asthma + Lung UK and Allergy UK.

Since 2018 the service has seen an increase in the complexity of need in the local population and observed challenges for patients and parents accessing timely support from both primary and secondary care. In collaboration with the Commissioner and Secondary Care, the service has responded to system pressures by upskilling our nurses in non-medical prescribing, Tier 4 Asthma training and Association for Respiratory Technology & Physiology (ARTP) accredited Spirometry training. This has afforded the service users the option of opting to access the service more frequently as it is more accessible- for example for prescriptions, preventative inhalers, and spirometry assessments and for support to progress secondary care referrals.

In light of the service increasing its levels of expertise, it was viewed as a one stop shop for all types of requests from minor to urgent, however, the service now has clearer communication pathways for responsibility of care according to clinical need.

Whilst the total patient caseload has remained similar to previous years the number of patient contacts (face to face and non-face to face contacts) has increased substantially -by 75.5% in 2023 compared to 2018. The service strives to remain accessible but to maintain a safe and efficient level of service provision, a review of the existing support issued by the ICB has been commenced.

The above detail is set out in an effort to demonstrate to the Court, the acknowledgment that greater support is required in relation to demand, and the plans in place to address this.

It is of note that the geographical boundaries of the area remains the same but the population has grown and the referral volume has increased by 75%.

Due to the close working relationship between the Service and the ICB and the ideas generated for service development, NHS England has awarded monies to develop and implement the following:

• The Asthma Friendly Schools training to educational staff to ensure safety of children and young people within school.
• To upskill the GP practice nurses and enhance the GP’s knowledge regarding evidenced based medicine management,
• Direct patient care will continue to be delivered and remain in South East Essex only.

The service developed an internal service development plan and a project group with the full engagement and support of the ICB Commissioner, who has also been advised of the content of this Regulation 28 Report.

The clinical lead nurses attend the bi-monthly Mid and South Essex Asthma and Allergy Network meetings (which includes attendance by the MSFT Specialist Consultant Clinical Lead and the Primary Care Networks Clinical Lead) to engage and collaboratively work together to deliver more joined up care and develop clarity and understanding of functions. The team participates in the East of England Asthma network comprising of a number of expert multidisciplinary professionals in the speciality of asthma who share best practice and ideas for further service development.

Prior to this Inquest, the service had already recognised improvements were required to effectively and safely improve the efficacy of clinical practice and continues to do so on a daily basis:

• Reviewing the service eligibility criteria
• Partnership working with the integrated care system to ensure the service remit is understood to be a supportive specialist service and not an urgent /emergency service. This remains the remit of primary and secondary care.
• Reviewing the SOP and Service Business Continuity Plan
• Reviewing the care pathway with partners
• Remodelling the community specialist asthma service offer – with engagement from system partners so there is greater clarity on roles and functions of all
• Review of the assessment templates and proforma documents to ensure equity and consistency of the assessments undertaken and the documentation recorded.
• Review care plans, symptom management plans, and letter templates
• Reviewing the eligibility of the respiratory caseload
• Review of the rag rating criteria of the Amber/Red/black critical caseloads to ensure the correct process of the next steps are identified i.e. once stable referral back to primary care (Amber). If remains uncontrolled, despite supportive management, onwards escalation and referral to secondary care (red) and tertiary care (black critical
• The Service holds clinical supervision once a month.
• The Service holds Difficult Asthma Meetings with the secondary care team every 3 months and a monthly Difficult Asthma Meeting within our team.
• Difficult Asthma Clinic held once a month at the hospital between the service and Secondary care team
• Continued good relationship with Secondary Care team who supports our service in caring for the patients
• Implemented the use of video conferencing (AccuRx) to visually perform remote assessment, although please note this does not afford the opportunity to perform chest auscultation which would indicate the presence of wheeze. This method of virtual assessment can demonstrate the teaching of peak flow and inhaler technique and enable

assessment.
• Timetable of clinics encompassing face to face assessments, AccruRx and telephone review assessments.
• Dedicated appointments times pre-booked in advance to ensure parent/carer/ patient response uptake
• We are working closely with our Commissioners at MSE ICB to continue to seek opportunities for additional resources whilst transforming the service within current staffing capacity.

Concern b) The Service continued to operate during the pandemic and did not introduce video calls when they could not make face-to-face attendances. There was no risk assessment of the impact on the Service, and no audit of whether this was sufficient to manage the Service. There is no contingency plan in place should this issue arise again

Response: The Children’s Asthma and Allergy Service have learnt many lessons from the practices undertaken during the pandemic and recognise video consultations could have benefitted patients at the time and may have helped improve the review assessments and important patient observations, and the service regrets that AccuRx (video consultation platform) was not deployed earlier.

Following a successful pilot of the AccuRx, the service has now implemented its use and blended this into the timetable of review assessments, offering service users an initial face to face clinic assessment, followed by a review assessment utilising AccuRx. With the option of an additional telephone review assessment. The app helps improve communication between the Service and service users. The patient image feature in AccuRx is designed to enable patients to attach images to provide clinicians with the additional information to inform their care. The Business Continuity Plan has been updated which now includes the use of video consultations and alongside new and additional aerosol generating safe venues for face to face assessments such as the bespoke Clinician at Rochford Hospital and specially identified clinic spaces in primary care settings risk assessed to be covid secure. The Standard Operating Procedure (SOP) and Business Continuity Plan now include clarity on when video consultations should be considered for use:

The service criteria for utilising AccuRx is the following;

• To be used as the preferred contact following the initial assessment.
• Any child/young person where there are concerns regarding inhaler or peak flow technique
• Any child/young person where there may be safeguarding concerns and face to face appointments are difficult to obtain.
• Any young person who are in their GCSE years or undertaking exams.
• A home where there is suspected damp/mould.

AccuRx does not replace the importance of seeing the patient in a face to face setting therefore if there are concerns regarding the patient, utilising face to face clinics/home visits will be a priority over AccuRx or telephone clinics.

Concern c) The Service relied on telephone contact, Nurses did not speak to William although he was old enough to be involved in his care

Response: Current practice is to ensure all nurses request to speak with the child, if they are old enough, at all consultations - whether this is via telephone or video. During face to face clinic

appointments and home visit consultations, the Child / Young Person (CYP)’s view of their asthma is recorded within the voice of the child section of the electronic patient record to ensure all relevant parties including the GP and acute care clinicians are able to view this.

The service model provides pre-booked appointments determined by clinical triage and acuity of clinical presentation, which affords service users the opportunity and dedicated time to seek supportive management; however this provision is flexible according to patient clinical need. Record keeping is undertaken at each consultation to ensure contemporaneous and accurate documentation, to include potential referral and escalation to secondary care.

The outcome of all clinic consultations are documented within the patient record. Annual record keeping audits are undertaken monitor the consistency of assessments. This practice is further monitored during clinical supervisions sessions, caseload reviews and random spot checks.

Lessons learnt

In order to continue to learn lessons from this unfortunate tragic event, the service has undertaken a review of the existing capacity and demand, to identify the maximum effectiveness and efficiency of the current resource for the service user. Resulting in a refined service model with a robust patient journey either returning to primary care once stabilised or transition onwards to either secondary or tertiary care. As a way in which to manage risk, asthma care is shared amongst the multidisciplinary team, which includes primary care, secondary care and tertiary care.

Whilst being mindful of not repeating the evidence provided to your Court during this Inquest, we respectfully re-iterate the assurances set out in the learning statement submitted during the inquest and the subsequently developed Action Plan to monitor compliance for the service which highlighted the following:

a) To ensure evidenced-based education and training for all MSE paediatric staff regarding medical devices involved in the management of Asthma. This was completed accordingly with the ward staff at Southend Hospital and then the subsequent employment of the acute clinical nurse specialist for asthma has continued with this for all acute paediatric staff.

b) All CYP to receive a written Asthma Action management plan at each children’s community Asthma & Allergy nurse consultation. The service has adopted and implemented the BEAT asthma/wheeze action plan.

c) The Children’s Community Asthma and Allergy (CAAS) referral form content has been reviewed and updated to provide safety netting and prioritisation or exclusion criteria. This has been completed and revised in accordance with the clinical lead for the integrated care system.

d) CAAS assessment of CYP medication and inhaler technique – medication storage and environmental factors. This is assessed at every face-to-face visit and is discussed during video consultation/ telephone reviews.

e) Upon discharge from the acute provider, an initial contact is actioned within five working days from hospital discharge, pending a face to face initial assessment scheduled within two weeks. Allocation of the Rag rating criteria to support patient directed contact

f) All CYP presenting to the ED with a suspected diagnosis of asthma are reviewed by the CAAS. The service is offered to those who have attended the ED on one occasion.

g) Complex patients with uncontrolled asthma are reviewed by the lead paediatrician and CAAS at the monthly joint clinic and excellent collaborative relationships established.

h) The outcome of all clinic consultations are documented within the patient record. Annual recordkeeping audits are undertaken to demonstrate compliance with the recordkeeping template to ensure equity and consistency of the assessments.

i) Since the pilot integration of the children’s asthma and allergy service into the primary care networks, all GP practices have been requested to share access of the patient record , which means the nurses are able to view the prescription history prescribed for the patient by the GP./practice nurse.

j) The service has developed a protocol which includes the required frequency of contacting patients, investigations required, symptom management and a robust guide on how to recognise and escalate patients who have high risk asthma. Patients/families are now specifically asked how many times they use their inhaler, i.e. it was previously more than 3 times a week – This has now been amended to more than 2 times a week. Additional questions such as symptoms affecting their sleep and ability to take part in activities/exercise are also enquired. If the patient has sufficient developmental understanding, the Asthma Control Test score is implemented

k) Complex uncontrolled asthma patients who have progressed through the Amber caseload with minimal improvement are discussed at peer clinical supervision sessions and difficult asthma meetings as appropriate. Caseload reviews are undertaken with the team at three monthly intervals with the RAG rating allocated, in order to apply the relevant safety netting for the service user.

l) All service providers to ascertain if parents/carers are able to read written care advice or directions provided. Documented within the patient record and a number of translated care plans are available to families

m) Databases are compiled / reviewed of all service users who have been offered appointments and declined the service offer

n) All CAAS staff to undertake the online smoking cessation course, completed for existing staff members and will be provided to new starters in the event of staff recruitment.

o) All staff receive notification of updated nice guidance, this is circulated for information and the service is measured against the baseline assessment tool provided by NICE.

p) All new starters on induction to the services receive the relevant SOPs/ policies

q) To continue to develop links between universal services and the CAAS to improve education and training, to promote safe management, by addressing potential symptom management concerns/issues. Attendance at the universal services education forums is timetabled on a rolling programme and a database collated.

I hope that I have provided reassurances around the steps that we have taken to address the issues of concern contained within your report. We know there is an acute need to embed and effect change, hence we will monitor the above provisions to ensure these are contributing to our overall aim of keeping patents safe and delivering therapeutic care.

Please do let me know if you require any further information at this stage, including copies of any of the documents referred to above.

We will await your direction before sharing a copy of this reply with the family.

Dear Ms Hayes,

Thank you for your letter of 11 December 2023 about the death of William Brian Kin Gray. I am replying as Minister with responsibility for education and training of the NHS workforce.

Firstly, I would like to say how saddened I was to read of the circumstances of William Gray’s death and I offer my sincere condolences to the family and loved ones. The circumstances your report describes are very concerning and I am grateful to you for bringing these matters to my attention.

Employers in the health system are responsible for ensuring that their staff are trained to the required standards to deliver appropriate treatment for patients and for ensuring that staff have appropriate time to undertake continuous professional development. Health Education England (now part of NHS England) published The National Capabilities Framework for Professionals who care for Children and Young People with Asthma with a range of training programmes for people to use.

The Framework is aimed at anybody who may encounter a child or young person with asthma, including healthcare professionals. As you note, it sets out a range of capabilities, which can be achieved for most of the tiers through structured education programmes. Individuals working at tiers 4 and 5 may choose to complete a portfolio of evidence instead. Several national courses have been designed and accredited to meet the capabilities for tiers 1 to 4.

In general terms, the standard of training for health care professionals is the responsibility of the health care independent statutory regulatory bodies who set the outcome standards expected at undergraduate level and approve courses and Higher Education Institutions to write and teach the curricula content that enables their students to meet the regulators outcome standards. The Health and Care Professions Council and Nursing and Midwifery Council are the regulators for paramedics and nurses respectively.

Whilst not all curricula may necessarily highlight a specific condition, they all nevertheless emphasise the skills and approaches a Health Care Practitioner must develop in order to ensure accurate and timely diagnoses and treatment plans for their patients, including for asthma.

UK medical schools determine the content of their own curricula. The delivery of these undergraduate curricula have to meet the standards set by the General Medical Council (GMC), who then monitor and check to make sure that these standards are maintained. The standards require the curriculum to be formed in a way that allows all medical students to meet the GMC’s Outcomes for Graduates by the time they complete their medical degree, which describe knowledge, skills and behaviour they have to show as newly registered doctors.

The curricula for postgraduate specialty training is set by the Academy of Medical Royal Colleges for foundation training, and by individual Royal Colleges and faculties for specialty training. The GMC approves curricula and assessment systems for each training programme. Curricula emphasise the skills and approaches that a doctor must develop in order to ensure accurate and timely diagnoses and treatment plans for their patients.

Employers in the health system are responsible for ensuring that their staff are trained to the required standards to deliver appropriate treatment for patients.

I hope this response is helpful. Thank you for bringing these concerns to my attention.

Kind regards,

THE RT HON ANDREW STEPHENSON CBE MP MINISTER OF STATE