CQC review shows that change and improvement is too slow for those with a learning disability and autism

Introduction to the Oliver McGowan case and independent review

The death of Oliver McGowan in November 2016 was the subject of an independent multi-agency review commissioned by NHS England in 2019.

The learning disability mortality review (LeDeR) into the death of the teenager concluded in its report in 2020 that his death was "potentially avoidable" and highlighted failures in his care that could have been prevented.

Oliver had mild hemiplegia, focal partial epilepsy, a mild learning disability and was autistic. He was being treated for a seizure in 2016 when he was given olanzapine to sedate him. He was given the anti-psychotic medication against both his and his parents’ wishes.

The 18-year-old from Bristol died in intensive care 17 days later after a rare side effect, neuroleptic malignant syndrome, which caused his brain to swell.

In reflecting on its findings, the review recommended that the Care Quality Commission consider investigating NHS hospitals and how they support people with learning disabilities and autism.

Recommendations for improving care for people with learning disabilities and autism

In November 2019, the Government had published 'Right to be heard', as its response to the consultation on proposals for introducing mandatory learning disability and autism training for health and social care staff.

It outlined strong support for ensuring that all health and social care staff should receive mandatory training in learning disabilities and autism, at a level appropriate to their role. This is currently known as ‘Oliver McGowan Training’.

The Department of Health and Social Care invested £1.4 million to develop, test and trial the Oliver McGowan Mandatory Training with over 8,000 people in 2021. Pilots have been completed and a positive interim evaluation of the pilot training has been published.

There is strong support from government and all stakeholders, including the CQC, to implement this training.

Legal requirements for training and regulatory action

From 1 July 2022, all health and social care providers registered with the CQC must ensure that their staff receive training in how to interact appropriately with people who have a learning disability and autistic people, at a level appropriate to their role. This new legal requirement is introduced by the Health and Care Act 2022 (s181).

The Government will consult on and publish a code of practice to support the sector in due course and probably in the next 12 months. This will likely outline the detail of the content, delivery and ongoing monitoring and evaluation of the mandatory training and will take account of the recommendations from the report of the evaluation of the Oliver McGowan Mandatory Training trial. 

Statutory guidance (Health and Social Care Act 2008 (Regulated Activities) Regulations 2014: (Regulation 18: staffing)) has introduced two specific points about the new requirement:

• You must ensure that all staff receive training in how to interact appropriately with people with a learning disability and autistic people, at a level appropriate to their role.
• Staff must receive appropriate supervision in their role to ensure they demonstrate and maintain competence in understanding the needs of people with a learning disability and autistic people, including knowing how to support them in the best way.

This Health and Care Act requirement covers health and social care providers registered by the CQC in England.

The CQC cannot prosecute for a breach of Regulation 18 or any of its parts, but  can take regulatory action and must refuse registration if providers cannot satisfy them that they can and will continue to comply with this regulation.

Providers should be aware of these requirements when reviewing their induction, training, and supervision arrangements for all staff.

The role of providers in ensuring compliance with regulations and reasonable adjustments

Under the Equality Act 2010, disabled people have the right to be treated equally and to be protected from discrimination. This means taking reasonable steps to make sure disabled people are not treated less favourably, and have parity of access, experience and outcomes with non-disabled people.

Reasonable adjustments may be required to ensure equal access, experience and outcomes in health and care. This includes, for example, the use of communication aids or sensory tools, where providers make specific adjustments to support a person to communicate their wishes and help plan their care. Making reasonable adjustments for people with a learning disability and autistic people is also essential to protect and fulfil their human rights.

On 3 November 2022, the CQC published a report on the experiences of being in hospital for people with a learning disability and autistic people. ‘Who I am Matters’ looks at access to care, communication, care and treatment in hospital, protected characteristics and equality of care and workforce skills and development. It concludes that nearly six years after the death of Oliver McGowan, improvement across the board is still slow.

The CQC is likely to intensify their focus on seeking assurances, including on CQC inspections that health and care managers use the learning from their report to make improvements in their services. Pending the code of practice, providers should therefore refer to the developed frameworks for both autism and learning disability such as the ‘Core Capabilities Framework for Supporting Autistic People’ and ‘Advanced Clinical Practice Capabilities Framework’ which support all aspects of workforce development.