Last week saw the publication of both the Learning Disabilities Mortality Review (LeDeR) Programme’s 2018 annual report and the CQC’s Interim report on restraint, prolonged seclusion and segregation for people with a mental health problem, a learning disability and or autism. Swiftly followed by Panorama’s investigation into the appalling treatment of people with learning disabilities and autism at Whorlton Hall, an NHS funded privately-run hospital.  Our Director’s blog on human rights and Whorlton Hall and the wider systemic issues it raises can be found here.

 

Report findings and the human rights link

Turning to the LeDeR and CQC reports, both raise some major issues for concern. The LeDeR report found that in just under half of the reviews completed in 2018 the person who died had received care which met, or exceeded, good practice. In other words, in more than half of the deaths reviewed, the person did not receive care which met good practice standards, and in 8% of reviews, care fell so far below expected good practice that it either significantly impacted on their well-being, or directly contributed to their death. The CQC interim report on restraint found that in the 89 registered care providers contacted, at least 62 adults and children have been living in segregation in mental health hospitals for long periods of time, 16 people for a year or more.

These issues are human rights issues. The Human Rights Act means there is a legal duty on public services to respect our human rights, including to life (Article 2), to not be seriously harmed (Article 3), to  liberty (Article 5), to well-being and autonomy (Article 8), and to non-discrimination (Article 14). This respect element of the duty means services should not breach these rights, but the protect element of the duty is the positive obligation to take reasonable, proactive steps to protect people’s human rights.  These are a legal duty, not a nice to do duty, not ethics or morals, the law. Yet the LeDeR and CQC reports mean we must ask questions about the extent to which the human rights of people with learning disabilities, autism or both, are in fact being respected and protected

 

People’s human rights

The findings of the LeDeR report raise the concern that the right to life of people with learning disabilities is not being adequately protected. The statistics are shocking; “care” is being received that is found to have contributed to people’s death. The life expectancy for a woman with learning disabilities is 59, as compared to the general population of women where the figure is nearer 80. This is not simply a case of people’s life being taken away by services (although this is of course unjustifiable) it is also a lack of action on the positive human rights duty to take those proactive steps to protect life. And to ensure that decisions about care and treatment are not discriminatory.

The right to not be seriously harmed, to be free from inhuman and degrading treatment, is so relevant to quality of care. It is never lawful, yet reports such as the LeDeR and CQC Interim Restraint Review show that for some people their experiences of services falls below this marker. Whilst the rights to liberty and private and family life (including well-being, autonomy and participation) can be restricted in a limited set of circumstances, the CQC report shows worrying instances of these restrictions taking place without the relevant criteria being met. The report found that both adults and children as young as 11 are having these rights interfered with, due to staff shortages, lack of training and services not being able to meet their needs. Whilst we welcome the CQC’s recognition of the importance of understanding on restraint, prolonged seclusion and segregation as human rights issues, we need to be clear that risks to (and breaches of) human rights need to human rights responses. Without this focus, it becomes easy for patterns to be repeated and that cycle of poor decision-making and cultural acceptance to continue.

 

BIHR’s experience

Sadly, the LeDeR and CQC report findings did not come as a shock to us. At BIHR we work closely with people living with learning difficulties, autism, or both and their families, carers and support workers. We know that decisions are made about the lives of these people that often do not take into account their rights, including a lack of consideration of people’s views or opinions. In the worst cases these decisions can be fatal. Here is Bryn’s story:

Bryn was 60 years old and lived in supported living. He had severe learning disabilities, epilepsy, was non-communicative and blind. Bryn wasn’t lying down to go to sleep, but was sleeping sitting up in a chair. As this can be an indication of a heart condition, staff at the home called a doctor from the local NHS surgery who came to visit Bryn. Bryn had an Independent Mental Capacity Advocate who was supporting him. The advocate attended a multiple disciplinary meeting to represent Bryn. At this meeting the GP stated that he would not be arranging a heart scan for Bryn as ‘he has a learning disability and no quality of life’. Bryn’s advocate had attended a BIHR learning event on human rights and challenged the doctor’s decision at the meeting.

The advocate raised Bryn’s right to life and his right to be free from discrimination. The advocate asked the doctor if he would arrange a heart scan if anyone else in the room was in this situation, and the GP said yes he would.

This led to a change in decision and it was agreed that Bryn would have a heart scan. However, the scan was not arranged and the advocate had to raise this three times with the GP and other professionals before the scan eventually took place. Sadly Bryn passed away as a result of his heart condition before any treatment could take place.

This story is particularly upsetting as it a stark example of a missed opportunity to protect a life. If a human rights approach had been taken at the original meeting, if Bryn’s right to life had been respected, his story could have ended very differently.




Not good practice, the law

It is essential that we move away from simply thinking about good and poor practice and instead use a human rights framework which focuses on accountability for people's legally protected rights. A human rights framework is not just about being nice or meeting the latest policy agenda or commissioning incentive. Human rights is about addressing the individual risks and abuses AND the kind of systematic failure highlighted by these reports. But just as importantly, although often missed, is that preventative function of human rights. Embedding a human rights approach which is based on fulfilling human rights duties means not breaching rights, and managing the risks so that positive action is taken to protect rights. The real value of a human rights approach is that is becomes the frame through which we understand what has gone wrong, how to fix it and how to prevent such things happening in the first place. 

Making change through human rights

At BIHR we recognise that there is plenty of work to do in this area. We have therefore built up experience of working with people living with learning difficulties and/or autism and their families, carers and support workers and the practitioners who work with them. Essentially “doing” human rights work together, working with both those who access health and care services and those delivering the services.

For example our booklet Learning Disability and Human Rights: A practitioner’s guide includes a step-by-step visual guide for practitioners to help them use a human rights approach when responding to behaviours of concern:

We know that there is a need for this type of resource that helps practitioners make human rights based decisions. This guide is one of our most requested resources, with all physical hard copies already have been distributed, whilst we seek funding to print more. However, it can still be downloaded (along with our other practitioner’s guides such as one focusing on Mental Health Care for Children and Young People) here.

We have also worked with people living with autism and/or a learning disability to produce an accessible resource which aims to give people information about how human rights can help them to have more control over their own life and be treated with dignity and respect. You can download this booklet here. You can also access the short films based on the guide that we co-produced with Liverpool Mencap, as members wanted a visual way to tell the stories of how human rights can help them, their friends and families. You can watch them on our Youtube channel.

There must also be change at the national policy level. We recently worked with the Reducing Restraint Network to produce national training standards for restraint trainers, which focus on the promotion of human rights. With recent changes to mental capacity law, we have also been working with a range of groups to ensure parliamentarian’s had human rights protection at the forefront of their thinking in reforming the law.

There is still a long way to go to ensure human rights-respecting decisions, services, law and policy; but it can be done. A human rights approach is about using a language that centres both the people using services and the staff delivering them. It addresses not only the failing system that is risking and breaching people’s rights but also the individual decisions that are made by staff, even those made within the failing system. This multi-level approach means that each decision, whether it is about the care of an individual or an organisation or a service wide change can be improved by using a human rights framework.