Enough talking — time to act for autistic people and people with a learning disability

Care Quality Commission
5 min readMar 28, 2023

In her final blog for CQC Debbie Ivanova, Director for People with a Learning Disability and Autistic People, reflects on health care for autistic people and people with a learning disability, and updates on the new ‘How you see me matters’ report.

Debbie Ivanova, Director for People with a Learning Disability and Autistic People

This week is World Autism Acceptance week, but it also marks my last week at CQC.

I begin my final blog with a sense of outrage and devastation that autistic people and people with a learning disability are still being failed and put at risk of harm. The kind of treatment we heard people describe on the Dispatches programme ‘Locked Away: Our Autism Scandal’ last week is absolutely unacceptable. This must end.

Each and every person is entitled to safe, high-quality care and we are fully committed to using all of the powers available to us to make sure action is taken against services that are not providing this.

I have been, and continue to be, passionate about driving change and improving standards of care for people with a learning disability. Internally, we are transforming the way we work to improve how we regulate services for autistic people and people with a learning disability, and engaging more with the people who use them. Externally, it’s been encouraging to see pockets of real ambition to improve health and care services for autistic people and people with a learning disability, including building services that focus on what people need and want for their lives.

During my time here at CQC we’ve produced some hard hitting reports like our 2020 report ‘Out of sight — who cares’, which laid bare the shockingly poor care faced by autistic people and people with a learning disability. It presented a direct challenge to the system. By involving people with lived experience, for example through the Supported Living Coalition, we have continued to challenge commissioners, care providers and local authorities to make care better.

But we know there is much more to be done.

In particular, we know that health care for autistic people and people with a learning disability needs to improve.

In November last year, our report ‘Who I am matters’ highlighted that, when they had to go to hospital, autistic people and people with a learning disability were not getting the care, support and treatment they needed. In particular, we found that too often staff were not equipped with the right knowledge and skills, and good care was down to specialist staff or individual members of staff going the extra mile for people they were caring for.

Today we publish How you see me matters, which highlights why it’s so important to understand the experiences of autistic people when accessing primary care services. It also challenges providers to:

  • see things from a new perspective
  • think about what they could do to make changes in their own services.

Based on a review of published academic literature, How you see me matters uses examples of real experiences from colleagues in CQC who are autistic, to explain what it feels like for autistic people when using GP and dental services. Their experiences show how important it is to practise person-centred care and being autism-aware to get the best outcome for everyone.

It is an undeniably challenging time for the NHS, and it is essential to acknowledge the dedication and passion of staff working under unprecedented pressure. But because of this, it is now more important than ever to make sure that care for autistic people and people with a learning disability is centred around them as an individual person and that it meets their own specific needs.

The need for this is even more stark when making DNACPR (do not attempt cardiopulmonary resuscitation) decisions. Our 2021 report ‘Protect, Connect, Respect’ raised concerns around how DNACPR decisions were being made for people with a learning disability. It reiterated the need to ensure that DNACPR decisions should be made in full consultation with the person’s family and/or carers, and health and care professionals, and that not doing so could risk breaching their human rights.

We were therefore shocked and disheartened by the findings of the 2021/22 LeDeR annual report, which showed there had been an increase in inappropriate DNACPRs for people with a learning disability and autistic people.

This cannot continue.

As a first step, all staff working in health and social care services must have training to support them to understand the needs of autistic people and people with a learning disability. The Oliver McGowan code of practice is currently being developed to provide details of what that training must involve. We will expect all providers to meet this code of practice. However, we do know that the government has developed the Oliver McGowan Mandatory Training as its preferred way of meeting the legal requirements. In future, CQC will take action where we assess that the needs of autistic people and people with a learning disability are not being met effectively, and providers have not ensured their staff receive training in learning disability and autism appropriate to their role.

As an organisation, we will be continuing our journey of transformation. A key part of this will be listening to and working with people who have lived experience. This helps us to drive change and improve care, including how we regulate services for autistic people and people with a learning disability.

In line with this ambition, in February 2023 we established a new expert advisory group for people with a learning disability and autistic people. This expert group brings together people with lived experience, organisations that represent them, groups representing care providers, and other strategic stakeholders.

Together, we’re working to help identify where CQC can have the most impact in reducing inequalities for autistic people and people with a learning disability by:

  • keeping people well
  • enabling people to get the best care where they live
  • ensuring everyone in health and social care is working to reduce restrictive practice in their services.

We’re also continuing to encourage more people, and their loved ones, to share their experiences of care through our campaign, Because We All Care. To date, this has prompted nearly 94,000 people to share their experiences of health and social care with us.

In April 2023, our focus is on autistic people and people with a learning disability as they are more likely to have a poorer experience of care and face inequalities. We encourage you to engage with and share our social media posts when you see them, and we thank you for your ongoing support.

While the progress made so far must be celebrated, we cannot be complacent. We must build on these foundations at an accelerated pace to ensure that care for autistic people and people with a learning disability is joined-up and truly person-centred, and that it meets their individual needs, recognises their human rights and supports them to flourish.

Now is the time for action and we all have a responsibility to make the changes a reality.

--

--

Care Quality Commission

We make sure health and social care services provide people with safe, effective, compassionate, high-quality care and we encourage care services to improve.