In the wake of the Panorama expose on Whorlton Hall hospital and the treatment of people with learning disabilities and mental health issues NDTi asked me to blog about the human rights implications of this situation. The original blog for NDTi can be found here, drafted on my way to train independent advocates on how they can use human rights to better empower and support people accessing public services, people like you and me, but people who are so often on the sharp end of bad decisions, neglect, lack of consideration, overworked staff, and poor resourcing. The more I thought about it, the more I needed to add to my original blog, using a Twitter thread. Below is a version of my extended human rights analysis...

 

This morning, on my way to training independent advocates to use human rights law, as set out in our Human Rights Act, I attempted to gather some reflections on using human rights as our framework for responding to mass abuse and mass institutions.

Vulnerable situations vs. vulnerable people

The moral outrage at the Panorama programme on Whorlton Hall is clear and justified. Language always matters, but especially now. The anger needs to be heard. But this cannot simply be about a few bad staff members. Nor can it be about “vulnerable people”. People are not inherently vulnerable; the situations they are placed in make them vulnerable to having their rights to safety, choice, participation, well-being and non-discrimination breached.

We need to focus on the situation and resolving the vulnerability it creates, or the same abuses of human rights will continue unabated once the media spotlight shines elsewhere. The abuse must be addressed but so to must the situation, the existence of institutions themselves, where people are not treated as individuals with equal dignity and respect, but rather are dehumanised.

The law, not good practice

We must move away from simply thinking about good or poor practice and towards accountability for people’s legally protected human rights. Human rights are not about being nice; they are not even really about good practice that implies an optional extra going above and beyond. Nor are human rights about meeting the latest policy driver or even prioritising commissioning or financial incentives. Human rights are the legal entitlements that we all have, no matter who we are or where we might be living or placed.

The Human Rights Act places a legal (not ethical or moral) duty to respect and protect these rights. We must name what we saw on TV last night as inhumane and degrading treatment. It is not simply wrong, it is unlawful. It is a red line which people must not fall below.  What a human rights framework gives us is a way to describe what has happened and the standards that need to be met to address it and to prevent further abuse and systems that enable abuse.

Human rights is a language that focuses on the people at the heart of services, but which locates responsibility squarely with decision-makers who have the power to make the changes needed. The legal duty to respect and protect human rights is about the individual decisions of staff within the service and the system of public institutions that sits around them. This means Whorlton Hall and their staff, and commissioning authorities, NHS and local authorities involved in patient’s lives, monitoring agencies, the regulator. Both need addressing; the service and staff, and the system that enables human rights abuses to take place. Too often we hear the system services operate within is broken and therefore bad things happen. A human rights lens does not accept this; it enables us to call for legal accountability for individual people, and across public services.

Human rights abuses need human rights responses

Yet a human rights approach rarely features in our analysis, commentary and formulation of solutions. How many services understand and embed their legal duty to respect and protect human rights? How many people in services know their human rights and are confident to use them in discussions with staff? 

In fact having just finished delivering a day of human rights learning with independent advocates, how many of them feel knowledgeable and confident to advocate for people's human rights in health, care, education, housing, etc? Answer: now at least 25, but in general not nearly as many as you assume. Independent advocates must be an important piece of the solution (but not to only one); they can help achieve real change. But they too need human rights legal literacy and support. The 25 brilliant advocates I have just worked with are eager and willing to use the Human Rights Act, and they can have a huge impact on 100s if not 1000s of people's lives. One told me human rights has been the missing link in bringing together everything they do. The potential for change is vast. But this is a one off session and they had to work long & hard to buy in our services. The provision of open access human rights support for advocates (independent, self-led, etc.) is undervalued. Totally doable, we do it every day. Funded? Not so much.

And the same argument applies for people who have learning disabilities, autism or both and their parents and families. The previous week I ran a session with parents involved in Care & Treatment Reviews, which are meetings about the care being received by people with learning disabilities, autism or both, who are detained in hospital (or at risk of being admitted) because their behaviour has been found to be “challenging”. The idea is supposed to be a review of whether hospital is in fact the best place to care for someone, and the review involves experts by experience, such as parents whose children are in or have been in similar situations. Yet at the session I ran parents who have been campaigning for years for better care of people with learning disabilities, autism, or both, quite rightly asked me why this was the first time they were receiving human rights training. Why is human rights law not core training for every official involved in the care and treatment of people with learning disabilities, autism or both, and those reviewing decision-making. A more than valid question. If the concern is that care and treatment may risk people’s human rights to safety, to choice, to non-discrimination, even to life, then why is human rights not the primary framework for the development and delivery of care and any monitoring processes?

Yet even for this session, I know the organisations coordinating this support for the Experts by Experience had to work hard to bring BIHR in to support people, because the necessity of human rights learning and support is sadly so undervalued. From our work at BIHR, and from our joint work, including with NDTi, we know there are pockets of hope where leadership, frontline staff, people and families are using the legal language of human rights as the language for change, but this needs to translate to our national approach.

We must move from outrage to action, and action which is about respecting and protecting people’s human rights.