Learning disability and human rights

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The role of human rights in improving mental health and mental capacity services.

Helen Wildbore, Senior Human Rights Officer at the British Institute of Human Rights, shares learning from two major projects on how human rights can help improve mental health and mental capacity services, one working with practitioners and one working with advocacy and support groups.

Helen Wildbore, Senior Human Rights Officer, British Institute of Human Rights.

When I tell people that I work for a charity tackling human rights issues here in the UK, I often get confused looks and lots of questions like ‘we don’t have any human rights issues here, do we?’ and ‘why don’t you work on the real human rights issues overseas?’. My reply is usually to talk to them about abuse at Winterbourne View or failings at Mid Staffs. Ultimately, these tragedies were human rights tragedies; caused by people’s human rights not being respected or protected. But human rights are not just there for when things go wrong; they can be a lever to bring about positive change and help service providers to deliver care which treats people with dignity and respect.

A lever for change

When the Human Rights Act (HRA) was being passed by Parliament back in 1997/98, it was intended to create “a culture of respect for human rights across the UK”. It was written as a "framework law", to help public officials design and deliver rights-respecting services and lead to better outcomes for people using those services. The legal duty on public officials to respect and protect rights is often something frontline staff are not aware of; that human rights are not optional but a legal requirement. But when staff are empowered to know what this legal duty is and what it means for them, human rights can be a useful lever for change, helping practitioners to make (the often difficult) decisions in their everyday practice. 

When Ged, a community learning disability nurse, was supporting a client with learning difficulties who needed an operation, he used the framework of the HRA to help him with the decision. 

I was able to assist the doctors in thinking through all the human rights implications. I was able to show that it wasn’t just about their right to life, but the broader impact of the procedures and the need to treat the patient with dignity. A human rights approach allowed me to open up a dialogue about how to carry out this operation in a less intrusive and less distressing way for the patient.

Ged, community learning disability nurse.

As Ged’s example shows, using a human rights approach can help take the heat out of a discussion. Time and again our work shows how human rights move the conversation away from a practitioner’s moral compass to focus on using the legal standards, rooted in values, to help make the best decision possible.

Making person-centred decisions

Human rights also help practitioners to put the person back at the centre of decisions. From our work with services, we know that there are so many pulls on practitioners’ time. Rather than human rights being another layer of red tape or an ‘add on’ to their work, a human rights approach can help providers to carry out their day-to-day practice and to refocus on the person using the service. This in turn can empower service users (and their family/carers) and assist practitioners to work with others when concerns are raised about the service.

For example, when a doctor refused to arrange a heart scan for a 60 year old man because he ‘had a learning disability and no quality of life’, his advocate used the right to life and the right to be free from discrimination in the HRA to open up a dialogue with the doctor and other practitioners, which led to a change in decision.

Changing cultures

Our work with services has also shown that as practitioners increase their knowledge and confidence about human rights, this has the potential to transform the organisation from the inside. This is because a human rights approach is about the whole organisation, not just the frontline of service delivery. It is also about looking inwards at your organisation and reviewing your policies and procedures for compliance with human rights.

One example is St Martin of Tours Housing Association, which supports people who need help to maintain their independence or to step down from institutions. St Martin applied to be a part of our project ‘Delivering Compassionate Care’, to see if human rights could help change their philosophy of care. Following an incident where a member of staff was assaulted, they used human rights to review their internal policies and practices on dealing with violent behaviour. They now record incidences of physical and/or verbal aggression more closely, assess people to ensure they are getting the right support, work more closely with the police and talk about this with residents and neighbours as a positive step to create a safe environment for well-being – a key part of the right to respect for private life in the HRA. As a result, violent incidences have been reduced by 50% and evictions are also down. 

[Using a human rights approach] has improved the culture of our organisation. I started off sceptical about what difference it would make, but there has been a big turn around and the service is better as a result.

Practitioners involved in the British Institute of Human Rights project. 

A key aim of NHS Improvement's work, alongside the 'Transforming care' agenda is to empower people and families, and ensure people’s wellbeing is at the heart of decisions in health and care. Ultimately, what our work shows is that embedding human rights across learning disability services can help empower practitioners with the knowledge and confidence they need to carry out this vital work and ensure people don't slip through the net.  

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