CQC’s Independent Care (Education) and Treatment Reviews — Making a difference
Rebecca Bauers, CQC’s Director for people with a learning disability and autistic people, describes the impact that our work on Independent Care (Education) and Treatment Reviews is having on people’s lives.
In November 2019, the then Secretary of State for Health and Social Care announced that people with a learning disability and autistic people in long-term segregation would have their care independently reviewed. This aligned with findings in our 2020 report “Out of sight — who cares?”, which identified the need for an independent review of care, for autistic people and people with a learning disability in long term segregation in inpatient settings
Baroness Hollins was appointed to oversee this process and chair an independent Oversight Panel. Her review in December 2020 and subsequent 2023 ‘My Heart Breaks’ report led the Department of Health and Social Care to ask CQC to lead on Independent Care (Education) and Treatment Reviews (ICETR) for the next 2 years. We are working jointly with NHS England for the first year before taking full responsibility in the second year.
Since receiving funding in December 2023, we’ve been working hard to establish a programme that puts people at the heart of what we do. Our aim is to ensure an ICETR supports the person’s quality of life to improve, enabling them to lead the life they wish in an environment where they can thrive.
Early success stories
So far, we have completed 32 reviews and have the ability to set up urgent IC(E)TRs as needed.
Since beginning our IC(E)TR programme in May 2024, we’re already seeing examples of positive outcomes for people.
Among those who have had a review, we’ve seen:
- One person successfully discharged from long-term segregation in a high-secure setting
- A young person successfully moved to more appropriate adult services in single-person accommodation that better meets their needs
- Another individual discharged into their own accommodation in the community.
These successes demonstrate how these reviews can make real differences to people’s lives, supporting individuals to move to less restrictive environments when appropriate.
Our new approach
Learning from previous phases, we’ve made several important improvements to how reviews are conducted:
Better preparation
- We now gather detailed information before the review day
- Our panel holds pre-meetings to ensure all arrangements are in place
- We’ve enhanced our consent process to ensure full compliance with the Mental Capacity Act.
More accessible communications for participants
Once a review has taken place, a report is developed. This report is about the person’s life. It is shared with the individual and the professional team supporting them. We have worked hard to ensure our communications are accessible:
- We’ve redesigned IC(E)TR reports to be more readable, for those who receive them
- Easy read versions are now offered to those who need them
- Video reports of recommendations can be provided when needed
- We’re ensuring clear communication with service providers from the start of the process.
Stronger follow-up and accountability
Our follow-up process is unique to this programme, focusing on both the quality of the review process and its impact on people’s quality of life. Key elements include:
- Following up directly with the person, their family/advocate and other significant others after 4–6 months
- Requiring action plans within 28 days
- Ensuring plans go through proper governance procedures
- Checking responses and returning to providers if they’re not satisfactory
- Working with lead commissioners to ensure the integrated care system’s executive lead for learning disability and autism is aware of all actions needed to support people moving out of long-term segregation.
What we’re learning
Although it’s early in the programme, we’re seeing some clear themes emerging. One particularly successful example involved managing a complex discharge using innovative approaches, including a Rix Wiki, a simple, accessible and secure personal website that uses pictures, words, video and sound to capture the person’s voice, skills, aspirations and needs. This helped ensure care teams had a clear understanding of the person and their needs, to facilitate person-centred planning of their care.
We’re finding that discharge planning works best when all parties are involved, particularly when social care teams are actively engaged. While we’re hearing positive feedback from families about the care their loved ones receive in hospital, we understand their concerns about how long discharges can take, especially when it comes to getting social care involvement and agreeing funding arrangements.
Quality assurance
To ensure we maintain high standards, we’ve established an external oversight panel chaired by independent experts. This panel, comprising clinical experts, people with lived experience, organisations that represent people, family members and carers, helps us scrutinise the quality and impact of our reviews and ensures we keep people’s voices and experiences at the centre of our work.
Looking ahead
As we continue this programme, we’re committed to:
- Gathering and learning from feedback from people and their families
- Working closely with commissioners and care providers
- Ensuring our recommendations lead to real improvements in people’s lives
- Influencing the shaping of future services based on what we learn
- Completing reviews for all those who need them by autumn 2025
- Ongoing evaluation on whether the programme is effective in improving outcomes for people.
The real impact of this work is best illustrated by one family member’s feedback: “I just want to thank you so much for your report… It has made me feel really emotional and I really hope that the clarity in it will prompt proper action. I cannot thank you enough.”
We recognise that it is early in the programme and there are challenges ahead, particularly around complex discharges and ensuring all necessary partners are engaged in the process. However, we’re already seeing how this programme can make meaningful differences to people’s lives, and we remain committed to driving improvements in care and support for people in long-term segregation.
This programme represents an important step in improving the quality of life of autistic people and people with a learning disability currently in long-term segregation. Working together, the aim is for them to live fulfilled lives out of long-term segregation and in environments of their choosing in community settings. We look forward to continuing this vital work and sharing more success stories as the programme progresses.
