Daniel Xavier

Dear Mr Irvine, Thank you for your letter of 1 July 2022 about the death of Daniel John Xavier. I am replying as Minister with responsibility for Mental Health and Women’s Health Strategy and disabilities at the Department of Health and Social Care. I would like to begin by offering my deepest condolences to the family and loved ones of Mr Xavier. It is vital that we take learnings where they are identified to improve NHS care and I am grateful to you for bringing these matters to my attention. In preparing this response, Departmental officials have made enquiries with NHS England and the Care Quality Commission (CQC). I am also aware that Barts Health NHS Trust have responded to you directly to outline the steps they are taking to address the concerns that you raised in your report. The Government is aware that people with a learning disability and autistic people can face barriers to accessing the right health care and support and we are working hard to remove these.

The ‘Learning from lives and deaths – People with a learning disability and autistic people programme’ (LeDeR) provides the largest body of evidence of deaths of people with a learning disability at an individual level anywhere in the world. Everyone with a learning disability aged 18 years and over is eligible for a LeDeR review to enable us to build up a detailed picture of key improvements needed, both locally and at a national level to improve the care of hundreds of thousands of people with a learning disability and autistic people and to reduce the health disparities faced by this group of people. I understand that Mr Xavier’s death was notified to the LeDeR programme on 15 August 2022. His LeDeR review has been allocated to a local LeDeR reviewer and the review is under way. Following confirmation that the death is within scope of the programme, a trained LeDeR reviewer will gather details on the death and look at key episodes of health and social care the person received that may have been relevant to their overall health outcomes. For

some reviews, this will lead to a more comprehensive “focused” review, looking very closely at the person's life and circumstances of death. These focused reviews, once completed, are then sent to local governance groups with areas of good practice, areas of concern, and wider learning from the case being outlined.

In addition to this, learning from LeDeR reviews has helped to inform what further action is required to reduce avoidable deaths. One of the commonly reported learning points from LeDeR reviews is the need for greater learning disability and autism awareness training for staff in health and social care settings.

Introducing mandatory training is an important way in which we can address persistent disparities in health and care outcomes for people with a learning disability and autistic people as evidenced from LeDeR reports. That is why the Government have now introduced a requirement for CQC registered service providers to ensure their employees receive learning disability and autism training appropriate to their role, as set out in the Health and Care Act 2022, which came into force on 1 July 2022.

To support this new training requirement, the government have made significant progress on the Oliver McGowan Mandatory Training which was trialled in England during 2021 with over 8000 people. Part one of the training – an e-learning package – is now available.

This training is intended to ensure that health and social care staff have the skills and knowledge to provide safe, compassionate and informed care to people with a learning disability and autistic people. All staff will receive training on how a learning disability and autism can affect people, what reasonable adjustments are and how to make them. Staff that are more likely to engage with people with a learning disability and autistic people will receive further training on reasonable adjustments and communication, including hospital passports, professional behaviour, and how to communicate in an accessible way and understand what the person and their family are saying.

Furthermore, the Secretary of State will publish a Code of Practice that will outline how to meet the new requirement for mandatory training including its content, delivery, ongoing monitoring and evaluation. The government will carry out a public consultation on the Code of Practice and timings for this consultation are currently being considered.

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

Kind regards,

MARIA CAULFIELD

Dear Mr Irvine

Re: Regulation 28 Report to Prevent Future Deaths

I write regarding your letter of 1 July 2022 regarding your concerns relating to the death of Daniel John Xavier at Newham University Hospital. I hope this letter will provide assurance to you of the steps that we are taking to address the concerns you have outlined. I will respond to these concerns in turn.

1. Venous Blood Gas (VBG) result not reviewed and therefore not acted upon prior to discharge

In response to this incident, the Emergency Department (ED) are piloting a new process for the management of VBG results. The process requires the person taking blood to take the result for sign off straight away and there is an allocated clinician who is dedicated solely to review VBGs, sign ECGs and take any resulting actions immediately. The effectiveness of this process and the additional resources required will be evaluated by October 2022 and developed using quality improvement methodology.

Trust Executive Office Ground Floor Pathology and Pharmacy Building The Royal London Hospital 80 Newark Street London E1 2ES

In the medium term, the department is examining whether VBGs can be tracked on the electronic patient records system in the same way as happens with ECGs. This would have the additional benefit of providing a more robust audit trail than paper and giving an immediate alert that a test had been completed.

Learning from the incident has been shared widely within the department, including at induction and at daily safety briefings. Furthermore, all staff have been briefed on the need for 3 pauses for safety, whereby checks are undertaken when the result is first available, then rechecked at the point of referral/movement to SDEC (Same Day Emergency Care) unit and then a further check at the point of discharge.

2. Chaotic referral from the patient’s GP to the surgical team

The Trust is working with senior colleagues from primary care to improve the system. Consideration is being given to introducing a single referral telephone line where calls are screened and accepted. We expect to have agreed a system by the end of October 2022. The principle will be that there is automatic acceptance of referrals from GPs.

The site is developing internal professional standards for speciality teams reviewing patients in the emergency department. This will include training on where to find all relevant information including tests carried out and GP consultation within the electronic patient records system. The expectation is to have these agreed by the end of October 2022

With regards to the internal processes within ED, it has been agreed that the clinician assessing the patient should document the immediate management plan (including tests and treatment) on the Cerner (electronic patient records system) record.

3. Due regard not given to the patient’s learning disability

Within ED, all patients with a learning disability will have the vulnerable patient flag applied to them on the electronic patient records system to raise awareness. As part of an SOP, all patients with a learning disability will be discussed with by a senior clinician (ST3 plus) as a minimum and prioritised for early review. The SOP is part of the induction package.

Across the hospital, all specialities will be asked to have learning disability (LD) training during their governance days this year. The hospital currently has a LD nurse on site 2 days a week and with future appointments will have one 4-5 days a week. There will be a LD section as part of statutory and mandatory training by the end of the year.

Thank you for bringing your concerns to my attention. I trust that you are assured that I have taken them seriously and that the hospital has investigated them appropriately and is taking appropriate action. Please let me know if you require clarity on any of the points above.