Last reviewed 11 March 2022

Since the Winterbourne View scandal in 2011 and the uncovering of abuse at Whorlton Hall in 2019, there has been a recognition that the system needs to be reformed to prevent more failings in care for people with learning disabilities and autism. Last year the Government admitted that the pandemic had been a “setback” in efforts to reach this goal. By the end of last year there were suggestions that too little progress had been made in providing this group with the right, appropriate care. Christine Grey investigates the issue of whether policy and legislative reform achieved during 2021 will drive real change in care provision this year.

Is government policy helping to speed up reform?

As part of its plans to reform the adult social care system, the Government launched the National Strategy for Autistic Children, Young People and Adults: 2021 to 2026 last July, outlining six priority areas which included tackling health and care inequalities for autistic people; reducing waits between autism referral and diagnosis; improving provision of the right support in the community; and supporting people in inpatient care.

Some weeks prior to this publication, the House of Commons Health and Social Care Committee (HSCC) brought out its report on The Treatment of Autistic People and People with Learning Disabilities. The committee called for a better general understanding that autistic people and people with learning disabilities should not be assessed as having “treatable or preventable conditions”, and that they and their families must be at the heart of their care and treatment planning.

The review called for the Government to speed up autism diagnosis, especially in children and young people, and to use the Strategy to put in place measurable outcomes for increasing early diagnosis.

It also demanded reform of inpatient facilities for people with autism, recommending all Assessment and Treatment Units (ATUs) be closed within two years and replaced with person-centred services.

Does the Strategy impose measurable outcomes?

The Strategy committed almost £75 million for 2021 to 2022 for the development of a public understanding campaign, reducing diagnosis waiting times and increasing crisis support in the community. The Department of Health and Social Care (DHSC) and the Department for Education (DfE) are now establishing a refreshed national Executive Group to monitor the delivery of actions to achieve these aims, listed in Annex A.

The annex provides outcome deadlines for 2022, including £7 million in funding by the end of this financial year to increase early autism diagnosis. By April, the most effective ways to reduce diagnosis waiting times for children and young people should have been tested and implemented, and an update on the identification of best practice diagnostic pathways shared.

Regions are piloting new diagnostic approaches and will report findings by May 2022, backed by £2.5 million; the North East trial of annual primary care health checks for autistic adults has now been completed; and 120 commissioners have undertaken the learning disability and autism commissioner qualification as the scheme is being rolled out across NHS and local authorities.

Also, by summer 2022, £21 million funding will have been provided to local authorities so that 700 people can be supported for a faster discharge from inpatient units each year, and 27 systems will have either a keyworker pilot or early adopter site in place by March to support those at risk of being admitted to inpatient settings.

Are there developments on mandatory autism training?

In July 2021, Care Minister Helen Whately responded to the Care Quality Commission’s (CQC) 2020 Out of Sight—Who Cares? findings on restraint, segregation and seclusion by asking a newly established Building the Right Support Delivery Board to monitor and push forward progress in improving care for autistic people and ensure action is taken on these recommendations.

She reiterated the Government’s commitment, here, to implementing Oliver McGowan Mandatory Training on learning disabilities and autism for all health and social care staff, to ensure they have the right skills to deliver safe care. She said the Government is now working with Health Education England (HEE) and Skills for Care to develop and test a standardised training package, with the National Development Team for Inclusion conducting independent evaluation. This is due to be completed by Spring 2022, with information on progress available from HEE, here.

To mandate this training, amendments will need to be made to the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014 at some stage this year.

Is the Mental Health Act White Paper relevant?

January 2021 also saw the launch of the Mental Health Act White Paper, which made recommendations to reduce the reliance of people with a learning disability and autistic people on inpatient services, and further ensure the availability of community alternatives.

It advocated a separate legal approach more suited to the needs of this group, ensuring they should only be in inpatient care for as short a time, as close to home and in the least restrictive setting as possible, with a clear, therapeutic benefit. It also stated that all patients who are subject to detention should be given a care and treatment plan, describing how and when this should be developed with the patient. CQC Deputy Chief Inspector Debbie Ivanova noted in a progress report: “We will work closely with the sector on the best ways this can be delivered.”

New mandatory guidance on treatment and use of force

On 7 December 2021, regulations commenced the Mental Health Units (Use of Force) Act 2018, and statutory guidance was published to protect inpatients. Better known as "Seni’s Law” after Olaseni Lewis, who died as a result of being disproportionately restrained while a voluntary inpatient in a mental health unit in south London, it has a central aim of establishing better reporting of restrictive practice in these units as well as making it clear that staff should be trained in its appropriate use.

This provides a purposeful drive towards improved record-keeping and reporting, better staff training, accountability and reform of the way in which investigations are carried out.

What areas of care need urgent improvement?

On 2 December 2021, the CQC's progress report on the recommendations it made in 2020 acknowledged that last year the health and care system had taken action to understand the needs of people with autism in inpatient units and were committed to increasing the range of community support available.

However, it warned that commissioning the right support and services for people with a learning disability and autistic people was not happening quickly enough, and people were “still being placed in services that are not able to give them the right care”.

It called for “real change” to come out of the commitments on increasing community support, as well as swifter progress in reducing restraint, segregation and seclusion, as the fundamental change in approach required had not yet been “translated into care settings”.

The CQC stressed that Covid-19 has unquestionably had an effect on delaying progress in this area, but said it will continue to work with system partners to “drive through more positive change as fast as possible”, and will give a fuller update on progress in spring 2022.

Has progress been fast enough?

Despite policy and legislative reform, care provider Dimensions Chief Executive Steve Scown wrote to Health and Social Care Secretary Sajid Javid in November 2021 in an open letter, here, to express grave and continuing concern over the care and support for people who have a learning disability and autism detained in inpatient care or at risk of such detention. He said, according to latest NHS Assuring Transformation Data, there were more than 2000 people with a learning disability in inpatient settings, most of whom have been “locked up in these long-stay hospitals for at least two years”. He called on the Government to address a critical shortage of community-based crisis resources to prevent admission in the first place. There is now a tangible sense of urgency for measures in the Strategy to become reality in 2022.