People with additional needs receiving care in hospital may require adjustments to promote their safety and improve their experience of care.
Patients who need an MRI scan under general anaesthetic often come into hospital for the day to have the procedure. They may have a pre-anaesthetic assessment prior to the scan. From the point of referral and consent through to the actual procedure, understanding the wishes of people with autism, learning disabilities and learning difficulties can help with making adjustments to reduce anxiety and allow healthcare staff to plan appropriately.
This investigation seeks to understand the safety risks associated with patients with additional needs, as highlighted in the reference event.
We were notified by a district general hospital of the death of a young patient who had undergone an MRI scan under general anaesthetic to investigate their recurrent headaches.
The patient was being treated for growth hormone deficiency and had autism spectrum disorder and an associated learning difficulty.
During the scan, the patient suffered unexpected deterioration, which was subsequently discovered to have been caused by an undetected heart condition (cardiomyopathy). The patient was stabilised in the intensive care unit and subsequently transferred to the paediatric intensive care unit at a regional children’s hospital where they died three days later.
The reference event highlighted national safety risks linked to care pathways, human factors, awareness and training regarding patients with autism, learning difficulties and learning disabilities, consent, and clinical practice guidance when undertaking MRI scans under anaesthetic.
This investigation looks at:
- The current evidence base and guidance for anaesthetic pre-assessment clinics, on-day procedures which involve anaesthetics, consent for children, and the considerations for patients with special needs or who require reasonable adjustments to be made.
- The impact that autism, learning disabilities and learning difficulties have on mainstream healthcare service provision in relation to the safety risks identified, and the detection of diseases in patients with special needs.
We made eight safety recommendations as a result of this investigation, to the Royal College of Anaesthetists, NHS England and NHS Improvement, NHSX, the Centre for Perioperative Care, and the Association of Anaesthetists.
We have now received their responses which are shared below.
Royal College of Anaesthetists
It is recommended that the Royal College of Anaesthetists convenes a working group to provide additional guidance regarding the responsibilities for obtaining consent for MRI and other non-invasive diagnostic and/or therapeutic procedures under general anaesthetic in children.
It is recommended that the Royal College of Anaesthetists reviews standards for pre-assessment services, including their purpose, the required observations and examinations, and competencies of staff undertaking this work.
The Royal College of Anaesthetists welcomes the publication of the Healthcare Safety Investigation Branch’s report on Undiagnosed cardiomyopathy in a young person with autism and supports the recommendation made to the College.
In response, the College will establish a specialist working group with key stakeholders to evaluate current practices with the aim of developing clearer guidance on consenting patients for an MRI under general anaesthetic.
The College will then take forward any work recommended by the group, embeded the guidance within our accreditation scheme to ensure its application nationally.
The College is in the process of updating our Guidelines for the Provision of Anaesthesia Services for Preoperative Assessment and Preparation.
This document will be merged with the intraoperative and postoperative chapters to cover the perioperative pathway. The recommendations from this report will be addressed within the new guideline due for publication in March 2021.
Response received 7 July 2020
NHS England and NHS Improvement
It is recommended that NHS England and NHS Improvement strengthens its ‘Learning disability improvement standards for NHS trusts’ by including metrics which enable organisations to assess their progress against the outcomes for specialist learning disability teams.
It is recommended that as part of the work to support the NHS Long Term Plan, NHS England and NHS Improvement should develop a role and competency framework for learning disability liaison nurses, to ensure that people with learning disabilities and autistic people receive optimal care which respects and protects their rights.
Thank you for sharing the report. We were sorry to read about Alice’s tragic death and send our condolences to her family.
The national learning disability improvement standards were launched for NHS Trusts in 2018 with the aim they will apply to all NHS-funded care by 2023/24. They were designed by NHS Improvement with people with a learning disability, families, carers, and health professionals.
They help NHS organisations to measure the quality of service they offer to people with a learning disability and autistic people. The aim is to make sure there are consistently good standards across the NHS. The 4 standards cover:
- Respecting and protecting rights
- Inclusion and engagement
- Learning disability services standard (for specialist mental health trusts providing care to people with a learning disability and autistic people).
In 2019, the NHS Benchmarking Network sent a survey to NHS Trusts to ask how they were meeting the standards and to get the views of staff, people who use NHS services and families and carers.
New measurements (metrics) for Standard 1 and Standard 4 will be developed and included in the 2020 survey. NHS Trusts will be asked whether they have learning disability expertise across their services, and what this expertise consists of. This information will be used to identify any gaps and areas for improvement to ensure people receive effective support from the right professional at the right time.
A learning disability liaison nurse is a specialist nurse who supports people with a learning disability while they're in hospital to make sure they get the care they need. We are working with partners to define the role.
A national survey is being carried out to gather more information about the work that they do and, from this, a specific plan will be developed and published.
As part of the All England Plan for learning disability nursing launched in March 2020 www.easy-read-online.co.uk/media/53159/plan-for-learning-disability-nurses-easy-read-v4.pdf, an enhanced awards programme is being developed for registered learning disability nurses.
One of the awards will be for learning disability nurses working in acute hospital and primary care (GP) settings.
Step 1 We will develop and include new metrics in the 2020 benchmarking survey to support standards 1 (Respecting and Protecting Rights) and Standard 4 (Specialist learning disabilities services). These metrics will invite NHS Trusts to say whether they have provision of specialist learning disability expertise across their services, and if so, what this expertise consists of. TIMELINE: March 2021. Step 2 The data returned by NHS Trusts in the 2020 survey will be analysed to identify areas where targeted support/improvement may be required. TIMELINE: June 2021.
Action 1: As part of the All England action plan for learning disability nursing launched in March 2020, an enhanced awards programme, delivered as a post-registration qualification, is being developed for learning disability nurses. One of the awards will relate solely to learning disability nurses working in acute and primary care settings. TIMELINE: March 2021. Action 2: A national survey to gather more information about the work undertaken by learning disability liaison nurses. From this, a specific plan will be published. TIMELINE: March 2021
Response received 17 June 2020
It is recommended that NHSX develops a system for sharing care plans for patients with autism, learning disabilities or learning difficulties to enable reasonable adjustments to be made.
It is recommended that NHSX develops a standardised care passport, which should include sections to support patients with autism, learning disabilities or learning difficulties.
We acknowledge and agree with the report’s recommendations
In response to this report we are planning to conduct some discovery work over the coming months to look at requirements, potential solutions and guidance to enable patients with learning disabilities to be flagged, care plans shared and care passports used to empower patients and their carers.
We are aware of some areas of good practice across providers and will seek to include the learning in our work.
There will be information governance and integration issues to overcome which we will, of course, work through in partnership with provider organisations.
Response received 12 October 2020
Centre for Perioperative Care
It is recommended that the Centre for Perioperative Care considers the remit of the National Safety Standards for Invasive Procedures (NatSSIPs) to cover the administration of general or regional anaesthesia for non-invasive diagnostic procedures.
The Centre for Perioperative Care (CPOC) welcomes the publication of the Healthcare Safety Investigation Branch’s (HSIB’s) report on Undiagnosed cardiomyopathy in a young person with autism and supports the recommendation made to CPOC.
In response to the recommendation, the CPOC has established a NatSSIPs Steering Group with key stakeholders to evaluate and revise the current framework and its implementation based on wide consultation.
This work will include consideration of the administration of general or regional anaesthesia for non-invasive diagnostic procedures. CPOC will then take forward any work recommended by the group using its Board members to help drive change.
Response received 7 December 2020
Association of Anaesthetists
It is recommended that the Association of Anaesthetists reviews the dissemination and implementation of its ‘Quick reference handbook’ on managing adverse events during anaesthesia.
We took this opportunity to highlight to our members that rehearsal of crisis management in unusual locations, such as MRI suites or other remote locations, is essential.
We updated the implementation webpage for the QRH and included a reminder in our e-newsletter to highlight this. We state clearly that QRHs should be available in remote locations where anaesthesia takes place (either permanently stowed there or carried there in a ‘grab bag’ when anaesthesia is taking place).
We also now state specifically that regular multi-disciplinary practice of crisis management should take place and should include special focus on an any location-specific limitations or impediments that exist.
We took the opportunity to reconfirm that the clinical content of the QRH, i.e. the specific instruction provided, is applicable to all locations.
We also reviewed the applicability of the QRH to remote locations such as MRI suites. We concluded that the contents of the QRH, i.e. the instructions contained within it, were equally correct in a remote location as in a theatre complex or anywhere else.
We were reassured that the QRH fulfilled one of our key design aims, that it should be universally applicable without modification, enabling it to be identical in all locations for familiarity in an emergency.
We were reassured that your investigation did not identify any deficits in the QRH. Its instructions on managing the critical incident that ensued would have been the same regardless of location.
However, consideration of HSIB’s recommendation did lead us to conclude that it is the rehearsal of crisis management in unusual locations that requires addressing and this gave us an opportunity to re-emphasise this.
Mutli-disciplinary practice of crisis management is very important but has often struggled to find provision in the pressured frontline of routine clinical work. However, there is increasing impetus from many quarters for organisations to regard it as integral to and indivisible from clinical care.
We also strengthened the wording on our website around implementation of the QRH and to issue a reminder to all members via our e-newsletter.
Changes to the QRH implementation page (https://anaesthetists.org/Home/Resources-publications/Safety-alerts/Anaesthesia-emergencies/Quick-Reference-Handbook-QRH/Implementing)
Point 2 amended:
- The QRH should be immediately available in all locations where anaesthesia takes place; this may mean one copy per anaesthetic machine or one copy per theatre.
- Departments should make sure the QRH is available in remote locations, such as CT or MRI suites and emergency departments. If anaesthesia is only occasionally provided in these locations, it may be necessary to take a QRH along each time (for instance with the anaesthetic machine or in a 'grab bag') rather than leaving one there all the time. Be aware it's harder to police QRHs in such locations and they are more likely to disappear
Point 3 amended:
- The QRH should ideally be displayed in a wall mounted holder, marked clearly with a sign as the location for the QRH. You can download a ready-made template sign for the QRH holder
An additional bullet in point 8:
- In remote locations, regular multi-disciplinary practice of crisis management should take place and should include special focus on an any location-specific limitations or impediments that exist
This reminder to be published in a forthcoming e-newsletter:
“Remember, if you have not already done so, please update your Quick Reference Handbook to the latest version https://anaesthetists.org/Home/Resources-publications/Safety-alerts/Anaesthesia-emergencies/Quick-Reference-Handbook.
We have also updated the guidance for implementation. Departments should make sure the QRH is available in remote locations, such as CT or MRI suites and emergency departments.
If anaesthesia is only occasionally provided in these locations, it may be necessary to take a QRH along each time (for instance with the anaesthetic machine or in a 'grab bag') rather than leaving one there all the time.
In remote locations, regular multi-disciplinary practice of crisis management should take place and should include special focus on an any location-specific limitations or impediments that exist.
Response received 9 March 2021
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