Tag: British Institute of Human Rights

People with learning disabilities call for urgent changes to resuscitation decisions about their lives

Today the British Institute of Human Rights (BIHR) releases a new report produced with people with learning disabilities, their loved ones and supporters, detailing the need for big changes to the way do not attempt cardiopulmonary resuscitation (DNACPR) decisions are made in healthcare.

The report, published alongside England’s Health Ombudsman’s review, spotlights how these decisions are being made without people’s involvement, sometimes fuelled by discriminatory attitudes about disabled people rather than medical factors.

People with learning disabilities call for significant and urgent changes to DNACPR decision making, so that they and their loved ones can make informed decisions, where medical professionals meet their duties to uphold people’s human rights.

A Do Not Attempt Cardiopulmonary Resuscitation notice (commonly abbreviated to DNACPR) is a notice placed on a patient’s file saying that if their heart or breathing stops, doctors will not try to restart it.

As Rebecca, shares in BIHR’s report: “This is a sensitive and emotional subject that needs to be discussed openly. These honest conversations are important to us, we should always be involved in any conversation about our lives and should have our voices heard. We all have a right to make decisions about ourselves.’

The report was commissioned by England’s Health Ombudsman and sits alongside its review of end-of-life care, which was also released today and calls for improved DNACPR conversations for everyone.

The Ombudsman’s report notes that whilst DNACPR discussions are positive when done correctly, this is not always happening, and in some cases, doctors breached people’s human rights by not even informing them or their family that a DNCAPR notice was made.

Shaunie, a member of user-led advocacy organisation My Life My Choice, who contributed to BIHR’s report, shares his experiences supporting peers, saying that: “this always gets brought up as being wrong on so many different levels because doctors don’t consult with parents.

“Parents are then on the back foot and have to fight. The process is so bad, it really is.”

Similar experiences are echoed by family members and support workers, such as Certitude Care Manager Anthony. Anthony discusses the challenges of making complaints as a service provider and highlights that DNACPR decisions can be left off the NHS’s most widely used database system.

BIHR’s research report, published today, sets out clear recommendations from people with learning disabilities and those who support them, including that there is an urgent need for healthcare professionals, services and systems to provide accessible information on the decision-making process and to make it clear that people can challenge DNACPRs.

Alongside the written report, BIHR has produced a series of videos explaining the research and featuring commentary from participants, together with Easy Read translations, all available on BIHR’s website and YouTube channel.

BIHR’s CEO, Sanchita Hosali, says: “Poor decision-making around the use of DNACPR risks breaching people’s legally protected human rights.

“Whilst the Covid pandemic threw a spotlight onto the discriminatory and disproportionate use of DNACRP decisions for many groups, this is a long-standing human rights risk faced by many people with learning disabilities.

“Today’s report is directly driven by the experiences of people with learning disabilities, their loved ones and supporters. People have shared powerful stories of their experiences, and their fears should they ever need resuscitation.

“We should all stop, listen and take action on the recommendations, to ensure people with learning disabilities have equal respect for their human rights in healthcare, particularly when critical decisions like DNACRP are being made. 

“As Lara, who took part in our research says “I just don’t want this to be something that gets shoved on a shelf and forgotten about.””

On global Human Rights Day, groups from across the UK issue an open letter to the PM and political leaders, urging them to protect universal human rights in the UK

On global Human Rights Day, 75+ groups from across the UK issue an open letter to the Prime Minister and political leaders, urging them to protect universal human rights in the UK.

On the 75th anniversary of the Universal Declaration of Human Rights (UDHR), the British Institute of Human Rights (BIHR) have coordinated an open letter to the Prime Minister and political leaders signed by 75+ organisations from across the UK.

Published today on 10th December 2023, global Human Rights Day, the letter highlights the United Nations’ call for a “movement of shared humanity” – a sentiment reflected by the breadth of organisations that have signed it.

Grassroots groups, local charities, international organisations, professional bodies, advocates and lawyers all working in different fields and for different causes have come together to call on the UK Government to reaffirm the commitment to universal human rights, honouring the fundamental principle that human rights are for everyone.

As well as celebrating the incredible mobilisation of civil society to speak up against the UK Government’s unprincipled and unworkable Rights Removal Bill, which was ultimately scrapped this year, the letter highlights the impact that human rights have in the “small places close to home” – a phrase coined by UDHR architect Eleanor Roosevelt. It reflects on the role of the UDHR in inspiring the European Convention on Human Rights and ultimately the UK’s own Human Rights Act.

Together, the organisations tell politicians: “Anchored by common fundamental values that reach beyond divides, the UDHR makes it clear that universal human rights are part of what it means to be human, and not gifts granted by the state.”

Speaking on the release of the open letter, BIHR’s CEO, Sanchita Hosali, said: “Global Human Rights Day should be a time for us all in the UK to reflect on the promise of the Universal Declaration of Human Rights, agreed across nations in the aftermath of World War II 75 years ago to protect the equal dignity of each of us.

“Whether in our schools or workplaces, in community centres or housing offices, at police stations and courts, in hospitals and care homes, social work departments and Government offices, our universal human rights, shared by each and every one of us should be respected and protected by those in power.

“Sadly, here at home political debate is characterised by hostility to people’s human rights and a government intent on removing its accountability to us all. Having seen off the very real risk from the Government to scrap our Human Rights Act in favour of a Rights Removal Bill, groups from across the UK have joined together to call on our Prime Minister and political leaders to do better.

“Yet just days ago we see the Government seeking to set down in law the removal of human rights protections for a whole group of people seeking safety in it’s latest Rwanda Bill. As we mark the 75th anniversary of the UDHR, the Government must move beyond the popularist, often dog whistle politicking around human rights, and commit to realising the vision of universal human rights as a global blueprint for international, national, and local laws and policies.”

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150 groups challenge the PM to secure our Human Rights Act

Yesterday, on global Human Rights Day, as the UK attends the international Summit for Democracy and the Justice Secretary vows to “overhaul” our protections, over 150 groups across the UK challenged the Prime Minister to secure our Human Rights Act.

As the Prime Minister, Boris Johnson, attended President Biden’s Summit for Democracy, over 150 groups issued an open letter challenging him to secure our Human Rights Act and safeguard human rights and democratic accountability here at home.

The organisations include those working with children, carers, people with learning disabilities and mental ill-health, women experiencing violence, migrants, older people, and groups campaigning for LGBTQ+ rights, fair trials, access to justice, decent housing and against racial discrimination and to increase the UK’s democratic accountability.

In our work up and down the country, we see the everyday ways our Human Rights Act helps people across the UK to live more dignified and equal lives; ordinary people whose voices are rarely considered by those in power.

The loud calls to tamper with our Human Rights Act, often by those in government with the responsibility to uphold our protections, does little to reassure civil society groups, and the many people we each support and represent.

As parliamentarians quizzed the Justice Secretary Dominic Raab on the government’s human rights priorities, the Minister doubled down on his intention to publish plans to change our law imminently, despite not yet having published the report of the Independent Review of the Human Rights Act.

This atmosphere of hostility towards human rights and legal accountability in the UK cannot continue. The organisations are calling on the Prime Minister, and leaders of all political parties to “move from the romanticisation of being human rights pioneers in 1948 and commit to our Human Rights Act protections being a part of everyone’s life, every day, today and tomorrow.”

Sanchita Hosali, Director of the British Institute of Human Rights, the organisation coordinating the letter, said: “As the UK enthusiastically participates in President Biden’s Summit for Democracy, it is time for our Prime Minister to also turn the lens inwards. The hostile environment towards human rights and accountability cannot continue; if we are a nation that values democracy, we must also value the checks on power.”

“At BIHR whether we are working with doctors and nurses, children and parents, teachers or prison officers, women surviving abuse, people with learning disabilities and many others; what we see every single day is the real value and meaning of our Human Rights Act for people across the UK.”

“Rather than hyperbole and rhetoric bordering on dog whistle politicking, we need a government that is willing to stand up for Our Human Rights Act, our way to hold them to account. As we all work hard to mitigate the impact of the pandemic – a crisis in which our Human Rights Act has provided vital protections – we stand with over 150 other organisations calling for a world in which our political leaders move from the romanticisation of being human rights pioneers in 1948 and commit to our rights being a part of everyone’s life, every day, today and tomorrow. It is a challenge we urge Mr Johnson to take on.”

The letter reads:

“Dear Prime Minister and Political Leaders

Every year on 10 December, the world marks Human Rights Day, commemorating the day when, in 1948, the United Nations adopted the Universal Declaration of Human Rights, recognising the dignity and equal rights of all members of the human family as the foundation of freedom, justice and peace in the world.

This is the foundation of our Human Rights Act; this is why it matters. Our law here at home, setting out each person’s protections, and the responsibilities of government and those with public power to realise that vision of the UDHR; for us all to live in equal dignity.

Our politicians often proudly recall the UK’s role in setting down human rights law in the aftermath of World War II, standing shoulder to shoulder with nations to affirm our commitment to ensuring that human rights should be protected by the rule of law, that a common understanding of these rights should be shared by every person and part of society.

Now, in the midst of this modern era global crisis, human rights must inform both our responses to the pandemic and our recovery from it. No one has escaped the impact of this virus. And sadly, we have witnessed the disproportionate and discriminatory effects of Covid-19 and government measures among too many, including among black and minoritized communities, for disabled people, and people who live in care homes, alongside significant educational impacts for children and young people, deepening poverty, increased reporting of domestic abuse, and even more difficulty accessing justice.

There is much more than we cannot do justice to in such a short space, but which has been documented by parliamentary committee inquiries and research from our national human rights institutions, academics and across civil society. If recovery is to be resilient and just it must be focused on upholding our human rights.

And yet, here in the UK, rather than renewed commitment to upholding rights we face a hostile environment for human rights. Rather than addressing the inequalities fuelled and exacerbated by the pandemic, we are facing a political climate filled with threats to “overhaul” the very protections we all need upheld. The loud calls to tamper with our Human Rights Act, by those with the very responsibility to uphold them, does little to reassure us, and the many people we support and represent.

Human Rights Day should be an opportunity to reaffirm the importance of human rights in rebuilding the world we want. We call on the UK Government, and all political leaders, to share our commitment to universal human rights, as set out in our Human Rights Act.

As civil society groups working hard to mitigate the impact of the pandemic, we want a world in which our political leaders move from the romanticisation of being human rights pioneers in 1948 and commit to our Human Rights Act protections being a part of everyone’s life, every day, today and tomorrow.”