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.

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.

Investigation summary

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.

Download and read the full report.

Safety recommendations

We’ve made eight safety recommendations as a result of this investigation. Safety recommendations have been made to the Royal College of Anaesthetists, NHS England and NHS Improvement, NHSX, the Centre for Perioperative Care, and the Association of Anaesthetists.

Responses from these organisations to the safety recommendations will be shared here when they’re available.

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.

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.

NHSX

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.

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.

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.

Feedback

You can tell us what you think about our healthcare safety investigations and your experience of HSIB by filling out our online feedback form.