This piece puts comments I shared on Twitter when the CQC’s Out of Sight report was released into a more easily sharable (albeit slightly longer than usual!) blog.

 

“In total, I was restrained 97 times and secluded 17 times. I was forcibly drugged. The drugs took over every aspect of my very being. My body was battered and bruised, and my identity was fractured. They didn’t like the autistic part of me. I tried to tell them that autism is all of me, it’s who I am. I argued that my autism couldn’t be treated. They said I lacked insight. Knowing I couldn’t change, and being labelled as “treatment resistant”, I grew to hate myself and I lost hope. I’d never get out.” (Alexis Quinn)

 

Perhaps this report should be more accurately titled Out of Site – as the Care Quality Commission (CQC) has shown, yet again, that institutional living presents significant risks to peoples, compromising their most fundamental and basic rights to life, liberty, freedom from harm and wellbeing. At the end of October, the CQC published the final report into their review on the use of restraint, seclusion and segregation for Autistic people, and people with a learning disability, and/or mental health condition. This was published days after the CQC’s annual State of Care report, which also flagged significant concerns about the extent to which health and social care in England is upholding or risking people’s human rights. You can read our Explainer on the State of Care report here.

What is the CQC review and Out of Sight report?

The CQC is the independent regulator of health and adult social care in England. It monitors, inspects and regulates health and social care services to ensure they “provide people with safe, effective, compassionate, high quality care” (read more about the CQC in our State of Care Explainer). In October 2018, the Secretary of State for Health and Social Care asked the CQC to carry out a review of autistic people, and people with a learning disability and/or mental health condition who may be subject to restrictive practices as a result of ongoing concerns in this area.

The CQC took evidence from a range of people with lived experience of these issues and analysing other reports and data. They also conducted their own reviews and visits in a number of hospital wards for people of all ages with a learning disability or autistic people (43), mental health rehabilitation and low secure mental health wards (13) and care homes for people with a learning disability or autistic people (27), children’s residential services (11) and 5 of the 13 secure children’s homes in England. 

People must be front and centre

We strongly welcome the report’s opening statement that “Restrictive Practice is a human rights issue”. The human rights of people must be the starting point for any discussion, policy, law or decision on restraint. This means centering on the people who have experienced restraint first-hand, such as autism activist and campaigner, Alexis Quinn, whose story opens the CQC report (you can follow Alexis on social media here).

We should all be shocked by Alexi’s experience, but as the report shows, and as those of us who live and work in this system know, it is not uncommon. Other similar stories are shared in the report, such as Erik’s. This starkly shows how a lack of seeing a person and meeting their needs and upholding their rights leads to a situation where a person ends up getting “used to talking through a window so didn’t want to be near people. Erik didn’t want to come out of long-term segregation as he thought he was dangerous and was institutionalised by the setting he was in”. This is a person in hospital, to receive care and support. We know there are many people who have been consigned to living a life like Erik’s; this is not what a rights-respecting service looks like.

 

Why is this about human rights?

I’ve had the pleasure of working with Alexis, and like us, she is clear that we must name the harm done to people in hospital and care settings as human rights issues. If we do not talk about restraint as a human rights issues, it too easily becomes a practice that is done to people. Situating restraint as a likely breach people’s legally protected rights helps compel change, taking us away from its use. So, what human rights analysis can we draw from the report:

The risk of treating people in an inhuman and degrading way: There is some evidence of human rights analysis threaded throughout the report. Notably, the report stated that it found too many examples of “undignified and inhumane care, in hospital and care settings where people were seen not as individuals but as a condition or a collection of negative behaviours. The response to this has often been to restrain, seclude or segregate them.” This relates to our Article 3 right to be free from torture and inhumane or degrading treatment the in Human Rights Act. Importantly, the law states this right is absolute; that means practices or decisions which restrict this right or treat people in this way are not lawful. Clearly big and continued questions need answering about why this continues.

Lack of training AND SUPPORT: The report flags a lack of adequate training, and most importantly supervision and support of staff. The “and support” is important, this is not simply about training, but how that is implemented and the cultures of organsiations. Without this training and support to inform a culture of respect for human rights, institutions present a clear risk for people with learning disabilities, autistic people and/or those with mental health issues, placing them in vulnerable positions.

Advocacy: Access to high-quality advocacy is vital to make sure that people can raise concerns about their care, including serious concerns that may amount to human rights breaches. Whilst Codes of Practice contain duties around advocacy, people’s reality is very different, as the report worrying highlights.

 

What is possible?

Importantly, the CQC report does shows that it is possible to get even the most complex care right. While it may be difficult at times to receive the best care, especially due to the maze of funding and workforce shortages, it can be done and is best done in people’s communities, close to where they live and accessible when needed.

Bethany’s story (also reported here) is shared as an example of what is possible.  But, it is also a reminder that this was only possible following years of horrendous treatment, advocating against services and calling on the power of media campaigning to secure the everyday dignity of being able to live an ordinary life (as explained by Jeremy, Bethany’s dad here).

Throughout the report families and staff make it clear that if autistic people, and people with a learning disability and/or mental health condition got the right help and support earlier, or when in crisis, they may not have needed hospital care. This reflects our experience of working in this area; listening to people, their family, friends and supporters is key. We always ask the question how can you know this is the best, rights-respecting support possible, if you have not had these conversations with people.

Commissioning – there is a lot that needs to be made possible here. As the report notes, huge sums of public money being spent on keeping people in institutions, institutions which, in the words of the report, put people out of sight, and the risks that follow. Funding for services is a complex maze; after 12 years at BIHR and working in health and social care I will admit I still scratch my head and the lack of accountability for the distribution of such huge funds, never mind the lack of accountability for risking people’s legally protected rights.

 

What does the report recommend?

There are a range of recommendations in the CQC report, but from BIHR’s work those around the roles of Commissioners and the CQC itself are key for accountability. In particular, commissioners must start from the basis that their job is to ensure respect and protection of people’s human rights. This means commissioning to uphold people’s physical and mental wellbeing, their family life, choice and autonomy, equality, liberty (and sadly even their lives).

At BIHR we also especially welcome the CQC’s recommendations about its own regulatory approach – this is vital. Regulation and monitoring should be a powerful driver for changing cultures and approaches within health and social care; this must also be about putting people and their rights front and center.

 

Final thoughts

This report, whilst important, in another in a long line of reviews by the CQC and others which tell us that the human rights of people with learning disabilities, autistic people, and/or people with mental health issues are at series risk in institutional settings across England. What we need now is action to address this; accountability for the breaches of human rights, and really importantly, preventing continued and further abuses. This is now urgent; whilst the CQC’s report does not draw heavily on the impact of Covid-19, at BIHR we know from our research with people, advocates, and frontline staff, that risks to human rights are as stark as they’ve ever been (find out more about our research here). Action needs to come from a position of what can be done to uphold people’s human rights, rights to choice, participation, life, freedom from harm, liberty and family life. That must focus on working with people, not doing things to them.

 

Find out more information

The report references some of our resources, including our guide on Learning Disability, Autism and Human Rights. You can download it here (we are unfortunately out of printed copies and are not able to reprint without additional funding).

We have also co-produced a series of short videos based on the guide with the wonderful people at Liverpool Mencap: This video introduces you to human rights and how people with learning disabilities, and/or autistic people can use their human rights when accessing care & treatment. Further videos in the series include this video on the right to life which tells Bryn’s story who was refused treatment because he had complex learning disabilities (trigger warning: this is distressing). The final video in the series on non-discrimination and being able to talk about human rights when being treated unfairly by services may also be useful.

(The image used is from the Out of Sight Report, which uses an image drawn by Alexis Quinn)