Carers Week 2014: Human rights inside the courts and everyday advocacy

By Sanchita Hosali and Natalie Therfall at the British Institute of Human Rights

 

This Carers’ Week (9-13 June) we take a look at some important court judgments affirming the human rights of carer givers and care receivers alike. These judgments highlight the role of the Human Rights Act both in challenging poor decisions and its use in the decision making process. But remember it’s not all about the courts, BIHR’s Your Human Rights: A Pocket Guide for Carers is a handy resource to help people in their day-to-day interactions with public services, outlined at the end of this blog.

When the local authority becomes involved in care at home

There have been a number of cases where the proper procedures for altering care arrangements has not been followed. Although this may seem like a box ticking exercise, the result of such procedural failures has been to separate families. In one case a family carer had not been informed where their relative has been taken. The Human Rights Act has important role in such cases, empowering carers to hold services to account when officials have overstepped the mark.

In RR v Milton Keynes Council, an 81 year old woman with dementia was removed from her home without warning and without authorisation. Her son was not informed where she had been taken and their contact was restricted. The court roundly criticised the conduct of the local authority. The authorities had violated the woman’s right to liberty protected by the Human Rights Act (in Article 5) by failing to get the proper authorisation to detain her in a nursing home. They were also found to have violated her right to respect private and family life under the Act (Article 8) by removing her from her home of 30 years and from the family that had been caring for her.

This case bears striking similarities to that of the Neary family who took action against Hillingdon Borough Council; ; where Steven Neary, a young man with learning disabilities cared for by his father, Mark, was taken into respite care and then not allowed to return home for a year. Again the court criticised the conduct of the local authority in this case, which took place 3 years before RR. The court decided that the authorities had violated Steven’s right to liberty by detaining him without authorisation, for a number of months. And both Steven and Mark’s right to respect for private and family life had been violated because Steven had been taken from the family home and they could no longer enjoy life as a family.

As well as the delays sought in authorising depriving Steven of his liberty in the care unit, the court criticised the use of safeguards.. Known as Deprivation of Liberty Safeguards (DOLS, set out in the Mental Capacity Act 2005), these are intended to safeguard people who have been deprived of their Article 5 right to liberty. Mark Neary, Steven’s father, was quoted in the judgement as saying “safeguards seemed good – the reality didn’t. I didn’t know where I was”. It was clear in Neary that the safeguards had been misused. Here measures which are supposed to ensure respect for the rights of people in care were used as a tool to ensure continued detention, and risks to the right to liberty. Clearly, reason for safeguarding are about ensuring people’s basic rights to liberty and to free from harm, in practice this was forgotten, which is why the Human Rights Act was needed to challenge officials and hold them to account.

The Deprivation of Liberty Safeguards

The recent case known as Cheshire West is a significant step in recognising the human rights of those without capacity to make decisions about their own care. It concerned three adults with learning disabilities in ‘home like’ care placements who were none-the-less deprived of their liberty under Article 5. This is because, as the lead judgment by Lady Hale states, disabled people and people who lack capacity to make a decision are still protected by the same universal human rights as the rest of us. As Baroness Hale said, if a care arrangement would deprive her of her liberty, then so too would it deprive the person without capacity of theirs, it doesn’t matter what the intentions behind the deprivation are, or whether the person seems not to protest against the situation:

a gilded cage is still a cage

The case is important for carers. This test about whether a situation is depriving someone of their liberty applies whenever the state becomes involved in the provision of care. Where a local authority assumes responsibility for somebody’s care, they also assume responsibility to properly assess whether their care arrangements deprive that person of their liberty. If they do, then the proper safeguards must be applied. Baroness Hale is quick to emphasise that needing to apply the safeguards to a person’s care is not a bad thing. It is a crucial mechanism for ensuring that the person’s rights are respected while receiving care. The reviews required by the safeguards should be independent assessments which determine whether the persons rights, including to make decisions about what happens to them (Article 8) are respected to the maximum extent possible.

Respecting the wishes of the person in care

A 2013 case highlights importance of taking the wishes of the person in care into account in decisions affecting their life. The substantial issue of the case was whether an older woman with dementia could be allowed to return to live in her home for a trial period. The woman, Mrs Manuela Sykes, a former activist and politician also wished to waive her right to anonymity in order to raise awareness of her experience. The court found that at the time of the case Mrs Sykes lacked the capacity to make that decision for herself, however, taking into account her present wishes and her former strongly held values, it was decided that it was in her best interests to allow her to waive her anonymity: “by nature she is a fighter, a campaigner, a person of passion… she would wish her life to end with a bang not a whimper.”

A recent case from the European Court of Human Rights, McDonald v UK found that a woman forced to use incontinence pads when she was not incontinent had her rights to a private life engaged when she was made to live in a manner which “conflicted with [her] strongly held ideas of self and personal identity”. Once those Article 8 rights were engaged, the local authority providing overnight care had a duty to consider those rights when making their decision or else they would be in breach of them. This case highlights the importance of looking at all care decisions through a human rights lens.

Challenging discrimination against carers

The rights in the Human Rights Act are drawn from the European Court of Human Rights, which is overseen by the European Court of Human Rights. The European Union and the European Court of Justice are completely separate. However, when the ECJ was asked to look at an employment case from the UK involving a carer, they looked at human rights. In Coleman v Attridge Law the ECJ used the ECHR human rights principle of non-discrimination when deciding whether an EU directive prohibiting discrimination against disabled people in employment applied to Sharon Coleman. Sharon, the main carer for her disabled son, worked at a law firm and was denied flexible work arrangements offered to her colleagues without disabled children. The ECJ found that disability discrimination by association is unlawful in the workplace. The case ensured that UK law provides protection against discrimination on the grounds of someone’s association, including caring responsibilities, with a disabled person.

Everyday empowerment and accountability is important tooCarers Guide

Human rights have been relied on in all of the above cases to ensure that lack of capacity or a caring role do not prevent a person from enjoying and exercising their rights. This has been something of a whistle stop tour of recent case law surrounding care, but you can read about some of these cases in more detail on this blog.

Finally, it’s really important to remember human rights are not all about the courts. The Human Rights Act has an important role beyond and before legal action. The law is about our rights and it can empower us to challenge poor treatment and decisions in our everyday interactions with public officials (as well as help officials develop and deliver better services). BIHR’s project work to take human rights into the heart of everyday life has included working with carers and their advocates. In our consultation with n-compass advocacy service in the North East of England:

  • Almost half thought human rights were important to their caring role
  • But less than a third felt confident that they knew what their rights were
  • And only 15% felt confident advocating for the rights of those they cared for

That’s why we produced Your Human Rights: A Pocket Guide for Carers, to help fill that gap. The Pocket Guide is about empowering carer’s with a bit more knowledge about their rights and the rights of those they care for, and carer’s tell us how important this is:

[with BIHR’s Pocket Guide] I feel more empowered and confident on how to challenge, I see human rights can facilitate change (Carer, North East England)

The BIHR guidance helps to equip carers with the knowledge to better secure their rights as well as those of the persons they care for. It’s all about bringing rights home. (Nick Gradwell, carer and expert by expereince)

So this Carers Week let’s spread the word that human rights are what it says on the tin – getting it “right” for all “humans” including carers and those for whom they care.

 

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Capacity, Deprivation of Liberty and Human Rights: “What’s the harm, it’s for their own good?”

At the British Institute of Human Rights this is something we hear a lot, especially when we’re working on the care and treatment received by people with learning disabilities and capacity issues. Usually it’s a question that is well-meaning, but one which reveals deep-grained attitude that fails to recognise the most basic human rights we all have to be treated with equal dignity and respect. On 19 March the Supreme Court confronted this issue when deciding whether the care arrangements for P, MIG and MEG amounted to a deprivation of their right to liberty (also known as the Cheshire West case).[1]

This is an important case. It case is illustrates why and how the Human Rights Act should be the lens through which to view other laws and day to day practices. It has the potential to transform the way people in local authorities and those caring for others (especially involving the Deprivation of Liberty Safeguards and Mental Capacity Act) make decisions about people’s lives which put the person and their rights at the centre of the process, rather than relying on “best intentions”.

The Care Arrangements of P, MIG and MEG

P was a 38 year old man with Down’s syndrome and cerebral palsy who was cared for by 24 hour staff, in a house along with two other residents. He needed help with all aspects of daily life and went on accompanied trips out of the home almost every day. MIG and MEG were teenage sisters with learning disabilities who had been removed from a neglectful home. MIG lived with a foster mother whom the court noted she adored and MEG lived in an NHS facility for learning disabled adolescents. Both girls attended the same college during the day.Closed window

In MIG’s case she never attempted to leave the foster home by herself but would have been restrained from doing so it she had tried. MEG was sometimes physically restraint and received tranquillising medication. P was sometimes restrained in response to challenging behaviour.

Before the case got to the Supreme Court

The cases started in the Court of Protection, where it was found that P’s arrangements did amount to a deprivation of liberty, but as this was in his best interests it should continue, but with safeguards, including review.  MIG and MEG’s care arrangements were found to be in their best interests and not a deprivation of their liberty, and thus not be subject to review.

The Court of Appeal agreed that MIG and MEG’s were not deprived of Liberty, noting the “relative normality” of their situation. The Court also overturned the decision on P, finding that it was not a deprivation of liberty, introducing the idea of comparing P’s life to that of an adult in a similar situation with similar disabilities.

What the Supreme Court said

In P’s case the Supreme Court was unanimous that his situation amounted to a deprivation of liberty, and by a Logo UK Supreme Courtmajority (4 to 3) they also found the MIG and MEG had been deprived of their liberty. The leading judgement was delivered by Baroness Hale and it well worth the read, making it clear that human rights are universal to all and not lost simply because someone may have capacity issues.

The key point those involved in decision-making and delivery of care arrangements should bear in mind is that the test for whether a person is deprived of their liberty is whether they are “under the complete supervision and control of the staff and not free to leave”. The person’s compliance or lack of objection, the “relative normality” of the placement and the purpose behind it are all irrelevant to this objective question.

So what’s the harm?

Well quite a lot actually. As Lady Hale says in her judgement:

people with disabilities, both mental and physical, have the same human rights as the rest of the human race…This flows inexorably from the universal character of human rights, founded on the inherent dignity of all human beings…Far from disability entitling the state to deny such people human rights: rather it places upon the state (and upon others) the duty to make reasonable accommodation to cater for the special needs of those with disabilities…

“If it would be a deprivation of my liberty to be obliged to live in a particular place, subject to constant monitoring and control, only allowed out with close supervision, and unable to move away without permission even if such an opportunity became available, then it must also be a deprivation of the liberty of a disabled person. The fact that my living arrangements are comfortable, and indeed make my life as enjoyable as it could possibly be, should make no difference. A gilded cage is still a cage. (our emphasis)

Making rights real

Whether this case will indeed transform practice now depends on the extent to which practitioners are made aware not only of this case but of why and how human rights are relevant to their work (and not simply about the legal team). At BIHR we run a range of training and capacity building services and projects and we’ll certainly be raising awareness through our work. We have recently been supporting people and groups to give evidence to the Mental Capacity Act Committee, which found some significant gaps in the protection of people’s human rights. You can read our response to the Committee here and the evidence we submitted here.

Ultimately the British Institute of Human Rights is a charity, with no statutory mandate (or funding) to drive forward work to put human rights at the heart of health and care. That is why we work hard to form partnerships with service providers, practitioner bodies, regulators and advocacy services to help people know and understand their rights and duties and put them into practice (check out our new resource “The Difference it Makes”). Indeed, we were pleased that the Care Quality Commission recently recommended that all advocacy services and detaining authorities should distribute BIHR’s Mental Health Advocacy and Human Rights: Your Guide.

As the new structures for health and social care take root, we very much hope to work with NHS England, the Department of Health, CCGs and others involved in the system, to make sure that people’s basic rights are respected and protected.


[1] P v Cheshire West and Chester Council [2014] UKSC 19

Think human rights are just about courts? Think again!

Did you know it’s NHS Equality, Diversity and Human Rights week and Mental Health Awareness week? The idea behind NHS Equality, Diversity and Human Rights week is to raise awareness and celebrate best practice, perfect timing for BIHR’s final roundtable on our Human Rights in Healthcare Project and to launch our latest resource “Mental Health Advocacy and Human Rights: Your Guide

BIHR’s Human Rights in Healthcare Project, funded through the Department of Health’s Grant Programme has been exploring ways of assisting voluntary sector organisations working on health and social care to use the Human Rights Act to provide and advocate for better services, given that all public authorities, including NHS organisations, have legal obligations to respect, protect and fulfil peoples’ human rights.

We were pleased to receive the following words of support from Norman Lamb, Department of Health Minister for Care and Support:

LambI am sorry I am not able to attend this important event but wish to send my support for the day and for what you have already achieved. I sincerely thank you for the excellent work that the BIHR and you, its 20 partner organisations, have completed over the last three years on behalf of the Department of Health.

It is crucial that the NHS and care services take time to consider human rights and how they must underpin the way in which patients, carers and clients are treated, as well as understanding that their views and experiences are crucial in shaping our care systems.I look forward to seeing the outcomes of today’s discussions. Once again thank you and have a great day.

Discussions at the event focused on the challenges and opportunities of making rights a reality – to take human rights off the law books, beyond the courtrooms and into our everyday practice. Designed to be a framework law, the Human Rights Act provides both a legal and practical foundation for health and care services to develop and deliver policy and practice.

Through the Project, BIHR has worked closely with over 20 organisations based Birmingham, Liverpool and London and a sub-group focused on mental health. At the event we heard how groups are putting the Human Rights Act into practice, helping to transform internal culture, to secure good outcomes for service users, their families and carers and forming the basis of partnership working with services.

We heard from Mind Brighton and Hove about the initial “fear factor” and the sense that getting involved with human rights might end up in the courts, something which was dispelled with BIHR’s training and capacity building. In fact understanding the Human Rights Act means their advocates can be more targeted in raising concerns, empowering them to challenge poor practices. NSUN, a survivor-lead network, spoke about how the project has helped them to understand what the Human Rights Act is and how it can be used to as a lever for change. Just knowing there are legal rights which protect people has been very powerful and helped shift language of the organisation at every level, from local advocacy to engagement with Government Ministers.

We also watched films  from some of our other project partners, including:

Participants agreed it was important to ensure services are complying with their legal obligations under the Human Rights Act, an in some cases this is still not the reality. Recent scandals such as the deaths and suffering at Mid-Staffordshire Hospital, the abuse at Winterbourne View care home, and  others are reminders that quality of care is not simply a case of common sense or compassion. Values are important, they are the foundation of services, the ties that bind us. At the heart of health and social care are human rights values such as universalism, dignity, respect, fairness, equality, choice and autonomy. Yet these ties are too easily broken, sometimes something more is needed, assurances below which services cannot go below, and empowering framework for positive action and accountability for when things go wrong. This is what human rights laws do.

We were particularly pleased to launch “Mental Health Advocacy and Human Rights: Your Guide” at the event. Produced with Project partners Mind Brighton and Hove, Wish andMHG NSUN, our latest practical resource to help respect and protect the human rights of people with mental health problems. Aimed at both advocates and people who use services, the  Guide explains how the Human Rights Act is relevant in mental health settings, drawing on real life stories of how laws and legal cases can be used in everyday advocacy practice, providing helpful flow-charts, worked through examples and top tips. The Guide was warmly welcomed at the event, and  just one-day in we’ve been overwhelmed by the positive feedback we’ve had via Twitter, email and the phone. You can find out more and get your copy here.

No doubt there are challenges ahead, with the changing landscape of health and social care, economic constraints and the need for strong political leadership. But as the work of the Project shows it is possible to put the Human Rights into practice, securing not just legal compliance but also helping to build a culture of respect for human rights. There is much to be done to fulfil the spirit of this legislation, so that human rights become part and parcel of the way public services are developed and delivered, placing human rights at the forefront of daily interactions, but it can be done!

Human Rights Training: It wasn’t dull or boring!

This guest post has been written by Sam Bond, Advocacy Manager, Age UK Brighton & Hove.

 

 

In March staff at Age UK Brighton & Hove (AUKBH), including frontline workers and managers, received a day of human rights training kindly delivered by Sophie Howes at BIHR. The training covered the origins and principles of human rights laws, human rights law in the UK, the types of rights we have and the rights which are particularly relevant to older people. In the afternoon the Advocacy team discussed some case studies and ways of raising human rights issues. So why did we need this training?

 

At AUKBH we work with people age 50 plus, but the majority of our clients are over 80. We support older people to maximise wellbeing, maintain independence and exercise choice. We provide a number of services; including Advocacy, Crisis Service, Horizons social re-enablement service, Information & Advice and Nail-cutting; where workers visit people in their own homes. We frequently come into contact with clients who are receiving health or social care services.

 

Older people are more likely than other age groups to need health and social care services. More people over 75 experience emergency hospital admissions than any other group. Yet older people often don’t know they have rights that they can use to challenge poor and undignified treatment by service providers. The Human Rights Act can be used to protect our clients in situations such as being in hospital or receiving a care service, and to ensure they have equitable access to services.

 

The human rights training will help AUKBH workers to identify situations where there are potential human rights issues for their clients. Workers can refer these clients to AUKBH Advocacy Service. An independent advocate can support clients to make sure their views and wishes are heard and help them secure their rights. They can support people to challenge a decision or make a complaint. The training will help us to influence the treatment and care of the older people we come into contact with. It will help us to raise awareness of the relevance of human rights to people who are more vulnerable.

 

I had promised colleagues at Age UK Brighton & Hove that the training wouldn’t be dull or boring and I was certainly vindicated in that! The lively discussion in the afternoon really helped bring the subject matter to life. Since the training some of our advocates have already had occasion to use human rights language when advocating for clients.

 

Sam Bond, Advocacy Manager, Age UK Brighton & Hove.

Sam Bond is a BIHR Local Human Rights Champion. This involves helping to raise awareness about human rights and their relevance to local people.

Death, Indignity and Indifference in Our Care System: Human Rights Abuses Need Human Rights Solutions

Hundreds of people have died; others have been starved, dehydrated and left in appalling conditions of indignity, witnessed by their loved ones. Surely this is what Chris Grayling, Justice Secretary, had in mind when he recently cautioned to need to “concentrate on real human rights”? Yet the rights, legal accountability, and practical benefits of the Human Rights Act are rarely mentioned in discussions about the shocking failures of care such as those featured in today’s Public Inquiry Report in events at Staffordshire Hospital between 2005-2008. Sanchita Hosali, Deputy Director at the British Institute of Human Rights, shines a human rights spotlight on the issues.

When we need toPerson holding the Francis Report use NHS services most of us will receive care and treatment which respects our basic rights to equal dignity. Sadly, for others, often at their most vulnerable, this is not the case. Today’s Francis Report from the Mid-Staffordshire Public Inquiry, the latest in a long line of similar reports into failures of care. It is unfortunate that the report provides little explict reference to human right; however with the focus on patients, on dignity,  respect and safety and accountability at the day-to-day and legal levels, the Francis report is in essence calling for a system of healthcare which respects, protects and promotes people’s basic human rights.  The message is clear, that when we are in the care of public services there is minimum level of treatment that we should all receive. Human rights – universal basic minimum standards based on the values of equal dignity and respect which are legally enforceable – provide the very framework that is needed.

The Francis Report into Mid-Staff presents an opportunity to reflect on why it is important to frame these about the quality of care in human rights terms. Put simply we are talking about risks to and abuse of basic human rights, so our solutions both for immediate accountability and longer-term change should include human rights.

Seeking accountability? That’s what the Human Rights Act is for

Just one of the stories from Mid-Staffs is a stark example of the serious human rights issues at stake. Following hospitalisation for a fall at home, one woman’s “care” resulted in pressure sores, dehydration and malnourishment, an array of serious infections and frequent pain due to lack of medication. After three months she died in hospital, and her body was so contagious she was denied the final dignity of a proper burial. The family argued this was so appalling it amounted to a breach of the right to be free from inhuman and degrading treatment under the Human Rights Act, and the family distress at witnessing their mother’s suffering breached their rights to physical and mental well-being. Leigh Day and Co helped this family and many others secure over 1 million pounds in out of court settlements, and perhaps more importantly a personal letter of apology from the top. It is also worth recalling that families relied on the Human Rights Act to secure the Public Inquiry in the first place, relying on the investigative duty included within the right to life and freedom from inhuman treatment.

Applying a human rights lens also raises serious questions about the time it took to respond, particularly as health practitioners and those in regulatory bodies have talked about the concerns they raised. Positive obligations under the Human Rights Act to take action can include investigating crediImage of hospital corridorble allegations of harm and taking preventative measures. Perhaps now is the time to consider the role of regulators and “whistle-blowing” laws in light of these positive obligations.

Beyond Mid-Staffs the Human Rights Act is now being used to challenge other care-related failings. For example, Liberty is representing two former residents of Winterborne View who suffered physical violence and humiliation. Beyond the courtrooms, BIHR works with advocacy groups to use rights language in their everyday interactions to make sure services are dignified and accountable, including for example the groups which challenged the blanket use of Do Not Resuscitate orders in hospital wards.

Re-introducing the human into healthcare

Mid-Staffs is a stark reminder of what happens when targets and financial imperatives become the focus and services lose sight of the person. A human rights approach looks at using the law in practice to design and deliver services that place patients at the heart of healthcare, seeking to respect, protect and fulfil their rights.

Our work with Mersey Care NHS Trust shows how a human rights approach helps put patient voice front and centre, transforming services and changing staffing cultures and practices. In the Learning Disability Service staff, patients and carers work together to understand their human rights and what they mean in a healthcare setting. Evaluation has shown the powerful difference this work makes to both patients and staff. More than three-quarters of service users and carers said it has a positive impact on their mental health. Over 90% of managers said this approach had positively changed them as a person, with significant numbers reporting a change in attitude and practice.

Moving forward: naming human rights abuses here at home

Clearly the Human Rights Act is not a magic wand; but when we need health services, it is not too much to expect to be treated with basic dignity and respect. Placing human rights at the heart of healthcare is an important step in making this a reality.

So will this happen? You only need to visit the pages of this blog to see the increasingly toxic nature of our domestic debates about the Human Rights Act. Sadly, this game of political and headline one-upmanship helps foster a climate which fails to identify appalling standards of care as a human rights concern, ignoring an important accountability mechanism and a means for a fresh person-centred approach.

Mid-Staffordshire should not be seen as a one-off or something from the past. As a recent report notes the climate of increased demand for services coupled with “austerity” may lead Trusts to focus more (or exclusively) on cost rather than quality of care, raising fears “that there could be another ‘Mid Staffs’. As Jeremy Hunt, Health Secretary, considers the Francis Report and the much broader need to ensure  “patients must never be treated as numbers but as human beings” we should all be reminding him that the Human Rights Act should be part of the toolkit for ensuring accountable, dignified and respectful services.

Caring about carers rights

Today is Carer’s Rights Day. It brings to mind the wise words of Eleanor Roosevelt, one of the drafters of the 1948 Universal Declaration of Human Rights: “where after all do universal rights begin…in small places close to home.” Human rights can help shine a light on the hidden world of unpaid carers, those family members, friends and neighbours who work tirelessly to care for some of the most vulnerable members of our community.

Why human rights matter to carers

Human rights are universal, they belong to everyone, this means people in need of care and those providing the care, Set down in laws like our Human Rights Act 1998 (HRA), they remind us that there are legal obligations to treat people with dignity, respect and fairness. The HRA is there as a vital safety net to protect people from neglect and abuse, and to empower them to make choices about their lives.

The right to respect for private and family life under the HRA (“Article 8), for example, can be important for carers and those receiving care. This right protects physical and mental well-being and being able to develop relationships and participate in community life. It can help people challenge and negotiate the adequacy of care arrangements, involve people in decisions about care options, and help people to live fulfilling and active lives.

 

Sadly, many carers are not aware of their rights or do not feel confident advocating for them.  BIHR has been working with n-compass, an advocacy group in North West England, with a focus on the rights of carers. A consultation with local carers showed:

  • 45% of respondents felt that human rights are very important or important to their caring role.
  • Less than 30% felt confident that they knew what their rights were.
  • Only 15% felt confident in advocating for the rights of those they care for.

This revealed that many carers are missing out on vital support because they lack knowledge and confidence to know and secure their human rights. Essentially, lacking an important tool to help ensure their life, dignity and self-respect are protected.

A little bit of knowledge can go a long way

Knowing about human rights is an important first step in protecting them. Carers often come into contact with a range of professionals and bodies, from social services to health providers, all of whom have legal obligations under the HRA. It can be empowering for carers know they and the people they care for have rights and that public bodies have duties. This means dealing with public bodies is about ensuring the basics are in place rather than asking for a “hand-out” or a “favour”. As well as building confidence, this shift from charity to rights can also help find solutions to the challenges carers face. It can help ensure their rights and those of the people they care for are respected and protected.

Anna had multiple sclerosis and a 13-year-old son, David. David had Down’s syndrome and disruptive behaviour disorders. He had a long history of self-harming and violent attacks on his family. The family received some very limited respite care, but had not had any support in putting in place a behaviour management programme for David despite repeated requests. As a result, David had not been out of the family home for the whole of the summer break. Anna was extremely concerned that David was going to harm himself or a member of the family. The Down’s Syndrome Association wrote to the local authority asking whether the family’s right to respect for private and family life had been properly considered. They argued that the lack of support to manage David’s behaviour risked infringing both Anna’s and David’s right to participate in social and community life, as neither could access essential economic, social, cultural and recreational activities. Within two weeks David’s respite care was increased, he was referred to the local behaviour team for assessment and support and his parents were offered the opportunity to receive training on safe methods of restraint and behaviour management.

So let’s spread the word

Last month BIHR launched “Your Human Rights: A Pocket Guide for Carers”, developed in partnership with n:compass following our consultation with local carers. The Pocket Guide explains how human rights, particularly those in the Human Rights Act, are relevant to carers and those receiving their carBIHR Pocket Guide for Carerse.  Carers Rights Day is an opportunity to get this information out to carers to make sure that they feel confident about their rights and the rights of their loved ones.

So don’t delay! You can share the Pocket Guide – tweet it, link to it on your website, include it in your newsletters, email it to your networks, download and distribute it. Let us know what you think, your feedback makes our Guides more useful and helps us to show funders why it is important to keep supporting these publications. BIHR has some limited hardcopies contact us on programmes@bihr.org.uk for more information. Do also check out the Carer’s Rights Day webpages from Carer’s UK which has lots of useful information that can be promoted in similar ways.

Use it so we don’t lose it

Unfortunately political and media debates about the Human Rights Act are often quite negative, rarely telling the stories about how the HRA can make a difference to people in their everyday lives. When things go wrong the HRA can be a vital safety net, protecting us all in our most vulnerable moments. The HRA can also empower all people, including carers, to live fulfilling and dignified lives.

Human Rights can be a bit like good health. We don’t know how much we appreciate it until it’s gone. So now is the time to make sure we are using the law, raising awareness about it, and building more evidence for why human rights are important.