Transforming the way CQC regulates services for people with a learning disability and autistic people

Debbie Ivanova, Deputy Chief Inspector of Adult Social Care, updates on the work CQC is doing to improve the way we register, monitor and inspect services to make sure the quality of care in services for people with a learning disability and or autistic people is good.

As an organisation, we’ve spoken a lot over the last two years about the state of services for people with a learning disability and or autistic people. We know from good practice that people should be cared for close to home and their communities, with as much choice as possible. Collectively the system agrees on the principles of this. However, as of today there are still over 2,000 people with a learning disability or autistic people in hospital.

CQC are making significant improvements in how we see these services — training our inspectors on how to better spot the warning signs of a ‘Closed Culture’ and being more responsive to risk through more unannounced inspections.

We’ve called out poor care when we see it and are working with the rest of the system to influence change. In October 2020 we published our review into the use of restraint, seclusion and segregation — ‘Out of Sight: Who Cares?’. People told us how they ended up experiencing restrictive practices because care hadn’t been provided at the right stage, in the right way. They often reached out for help in the community and didn’t receive it, or the help they received did not meet their needs.

‘People should be cared for close to home and their communities, with as much choice as possible’

I want to share my early thinking on the work we will be doing this year which we will be providing regular updates on. This work will focus on improving the way we register, monitor and inspect services and to use the full scope of our regulatory powers, to make sure the quality of care in services for people with a learning disability and or autistic people is good.

I will be looking at all services — right through from hospital services to care homes and supported living. Families and people with lived experience keep telling us that it’s so much harder to speak up in services that care for people with a learning disability and or autistic people, and we’ve recognised this.

So, how do we make this a reality? Many who have been following our journey over the last few years have been heavily involved in helping us understand what needs to change. We now know that it’s not enough to conduct an inspection that isn’t in-depth, we need to get to the heart of a culture of a service, and we can only do this through specialist skills and increased observation.

Just last week we had the first conversation with our Expert Advisory Group made up of families, people that use services, providers and other stakeholders. We shared our early thinking about a more ‘in-depth inspection’, focusing on people’s experience of care services.

‘Families and people with lived experience keep telling us that it’s so much harder to speak up in learning disability and autism services, and we’ve recognised this’

People in services said that they felt we weren’t on-site often enough, and sometimes not for long enough, and they didn’t always feel confident to speak to inspectors in the service. They also told us that we needed to go in more frequently, and at times that were not usual working hours — for example evenings, and at revealing times like handover periods. That’s where we might really understand the culture of a service.

Those of you that I have spoken with know that I care deeply about this issue, and I’ve got a committed team working with me to deliver at pace.

We are starting by refining our methodology, learning from our work on Closed Cultures, which includes ensuring our reporting process is as effective as possible. We will shortly then be piloting this on the frontline of inspections.

What will this look like in practice?

We’re currently developing the focus of the programme, so far it fits into three key areas.

1. Ensuring the right services are regulated and registered​

We’ll be making sure that our newly updated Right Support, Right Care, Right Culture is being used by providers across the board through our usual registration, monitoring and inspection activity. This is the policy which describes what we expect good care to look like for autistic people and people with a learning disability, covering registration through to inspection. It is about ensuring people have the right model of care and are going into a service that meets their individual needs, whether that’s in adult social care, a community service or a hospital.

2. Responding to risks swiftly and taking appropriate action

We want to make sure we respond quickly and appropriately where services are not caring for people in line with good practice. We’ll be reviewing our approach to inspections of services for people with a learning disability and autistic people across the organisation. We’ll begin with a review of all hospital settings where our evidence shows there are the highest risks to keeping people safe and respecting their human rights. We will put people’s experience at the heart of our inspections.

3. Pathways and healthcare

This workstream will look at access to services and what happens to people as they move between health and care services, focusing on choice and consent whether they live in regulated settings or in the community. We will work with local systems to identify commissioning gaps but also seek out best practice models, then, alongside examples from our inspection programme, we will share this learning widely.

We’re in the very early stages of exploring this work and will keep you updated. At the programme’s core it’s about making sure people with a learning disability and autistic people receive the right support, at the right place, at the right time.