Driving improvement for autistic people and people with a learning disability
In her first blog as Interim Director of People with a Learning Disability and Autistic People, Rebecca Bauers talks about the importance of listening to the voices of people with lived experience; about how we have been gathering insight to shape our priorities, and how we intend to use our new powers to assess integrated care systems and local authorities.
Hello, my name is Rebecca Bauers. I am the new interim Director of People with a Learning Disability and Autistic People
As many may know, my predecessor Debbie Ivanova retired in March of this year, and left some pretty big shoes to fill. In April I stepped into the role as Interim Director of People with a Learning Disability and Autistic People, with Stefan Kallee as my deputy.
In her final blog, Debbie wrote “Enough talking — time for action!” — I wholeheartedly agree with this sentiment. The treatment of people in the recent Dispatches programme “Locked Away: Our Autism Scandal” was a damning indictment of how some care provision is failing autistic people and people with a learning disability.
I’m committed to building on the foundations Debbie and I created over the last 2 years, to ensure we do not lose momentum with, or passion for, the work done so far, and to firmly position Right Support, Right Care, Right Culture as the framework of good practice for providers and systems to adhere to.
It’s a real privilege to be in this role. My passion for driving the change and improving standards of care that are so desperately needed for autistic people and people with a learning disability is what gets me out of bed in the morning. Under my leadership, we’ll continue to work closely with people with lived experience to understand and help break down the barriers they face to improve the care they receive and stamp out unacceptable practice.
Listening to the voices of people with lived experience
As an organisation we’re committed to listening to the voices of people with lived experience. To this end, we launched our Because We All Care campaign in 2020. To date, this has prompted nearly 94,000 people to share their experiences of health and social care with us.
We must ensure we continue to listen to, learn from and work with autistic people and people with a learning disability, supporting them to share their experiences of healthcare. Working together, we can drive lasting change, improve access to healthcare, and increase timely and appropriate healthcare provision. Ultimately, and together, we must work to improve the quality of life and reduce the early mortality of autistic people and people with a learning disability.
In November last year we published Who I am Matters, a report into the experiences of being in hospital, which was a stark reminder that autistic people and people with a learning disability are still not getting the care they need, when and where they need it. It shone a light on the impact these failings have on people and their families. Yet we are still seeing practice such as intubation as a form of chemical restraint being used. This is completely unacceptable.
Gathering insight
In February of this year, we launched our Learning Disability and Autism Expert Advisory Group (EAG). In this group, we bring together people with lived experience, organisations that represent them, groups representing care providers, and other strategic stakeholders.
Together we’re working to identify where CQC can have the most impact in reducing inequalities for autistic people and people with a learning disability in 3 key areas:
- Health — keeping people well
- Community — enabling people to get the best care where they live
- Reducing restrictive practice — ensuring everyone in health and social care is working to reduce restrictive practice in their services.
Over the last few months, we’ve been gathering insight from the 3 meetings we’ve had so far to identify the priorities people want us to focus on over the next 2 years.
Focusing on reducing restrictive practice
We heard that we need to focus on reducing restrictive practice as a priority. Using the feedback from our EAG, we’ve developed a CQC cross-sector policy position on the use of restrictive practice in all health and care settings, reflecting a potential failure in a person’s care pathway where restrictive practice has been used. This is currently in the final stages of approval and an update will be shared later in the summer. As part of our work in this area we also aim to establish how the use of restraint, seclusion and segregation has changed since we published “Out of Sight — Who Cares?”
Access to GPs and annual health checks was another important area for EAG members. In response, we’ll identify the barriers and issues autistic people and people with a learning disability face in being able to see their GP, receive annual health checks and obtain referrals for onward assessment, diagnosis and treatment.
Focusing on quality training
Quality autism and learning disability training is a key part of ensuring that healthcare professionals have the skills they need to provide effective and compassionate health care and communication for autistic people and people with a learning disability. As part of our work, we’ll review the availability, quality and uptake of training for health professionals, including Oliver McGowan Mandatory Training.
You may already be aware that the Department for Health and Social Care has last week published its consultation on the Oliver McGowan Code of Practice. I encourage you to review and respond to this important consultation.
Using our new powers to assess integrated care systems and local authorities
Finally, there was also real appetite for us to use our new powers to assess integrated care systems and local authorities, to look at community service provision and commissioning. Taking this forward, a key focus will be exploring how current community services are meeting people’s needs (or not), what good practice and systems are already in place that we can build on, and what early interventions can help people before they reach crisis point.
People at the heart of everything we do
People are at the heart of everything we do. Sharing best practice and examples of what good looks like will be a thread running through all of our work.
While we have seen progress, there is still much work to do. We know from the LeDeR (Learning from Lives and Deaths Review) annual report that people with a learning disability and autistic people are still dying much earlier due to a lack of access to health screening and early diagnosis. We need to work at an accelerated pace to ensure that their care is joined-up and truly person-centred, that it meets their individual needs, recognises their human rights and supports them to flourish.
We can only do this together. Let’s get going!
