The Human Rights Act: Sometimes it’s about everyday life and death decisions

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

 

At the end of our lives, 68% of us will die in hospital. Of that percentage, 80% will die with ‘Do Not Resuscitate’ (DNR) orders in place. These are the sobering figures Lord Dyson quoted when delivering today’s Court of Appeal judgement which confirmed that a person’s basic human rights can be breached when a DNR order is placed on a patient file without consultation.

The Case

Janet Tracey from Family Handout

Janet Tracey, photo from Family Handout

The case (Tracey v Cambridge University Hospitals NHS Trust) was about Janet Tracey, a care home manager, who was seriously ill with terminal cancer and had to be ventilated following injuries sustained in a car crash. In the course of Mrs Tracey’s treatment, when she was about to be removed from artificial ventilation, a DNR order was placed on her records. The removal of the ventilator was successful and Mrs Tracey was able to breathe unassisted. Later on Mrs Tracey’s daughter looked up what was meant by the term ‘DNR’ which she had seen written on her mother’s records. She was distressed to discover that had her mother’s heart stopped (cardiac arrest) during her treatment, she would not have been resuscitated. At the request of the family, the hospital removed the DNR order. Janet, her family and medical staff were then able to discuss end of life matters, and subsequently decided that they would place a DNR order on file. A little while later, Mrs Tracey died in hospital.

The family were concerned that the first DNR had appeared on Mrs Tracey’s records without any consultation. They asked the courts to decide whether this breached her right to respect for private and family life which is protected by the Human Rights Act (Article 8).

The Importance of the Judgment

The first judge who heard the case believed the family’s claim that the DNR order placed without permission violated Mrs Tracey’s right to respect for private and family life was academic because the order had been removed before it had done any harm. Lord Dyson in the Court of Appeal disagreed. He noted that the fact Mrs Tracey’s heart had not stopped while the DNR order was on file was fortuitous, and:

fortuity cannot bear on the question whether Mrs Tracey was sufficiently involved in the decision-making process which led to the imposition of the first notice.”

In other words, Mrs Tracey was lucky, and being lucky does not mean the decision to place the first DNR on file respected Mrs Tracey’s human rights. In the future others who may have been subject to DNR orders without consultation may not have been so lucky. The Court also said it was not enough that the DNR order was cancelled when the family raised concerns. Mrs Tracey’s human rights were engaged by the underlying policy that led to a decision being made without consulting her. It was not the refusal to resuscitate that was being challenged, but the policy that led to decision being made without involving the Tracey family.

Why is this about human rights?

The right to respect for private and family life applies to a range of decisions and issues that affect people’s private life. Crucially, this can include decisions at the end of life. Lord Dyson states in the case:

A decision as to how to pass the closing days and moments of one’s life and how one manages one’s death touches in the most immediate and obvious way a patient’s personal autonomy, integrity, dignity and quality of life.”

Clearly, the right to respect for private and family life was engaged in Mrs Tracey’s case (and other end of life decisions) and should be a vital part of the decision making process.

When deciding whether Mrs Tracey’s human rights had been breached the judge said it is clear from previous decisions in the European Court of Human Rights that the degree of patient involvement in end of life decisions required by Article 8 will depend on the particular circumstances of the case. But this right also carries with it a presumption of patient involvement, and there must be very convincing reasons for not involving the patient.

What convincing reasons?

There is a principle in common law that a patient cannot force a doctor to give them a particular treatment, including resuscitation. Lord Dyson explains this does not mean the patient is not entitled to know about the doctor’s decision, to discuss it with them and if appropriate, request a second opinion.

Importantly the Court also said that just because a patient may be distressed by a discussion about non-resuscitation, as Mrs Tracey was, does not mean they should be excluded from the decision. The doctor may only exclude a person from the decision process if “he or she thinks that the patient will be distressed by being consulted and that that distress might cause the patient harm”.

The Outcome of the Case

By the time the case was heard in the Court of Appeal, the hospital had rewritten the policy regarding DNR decisions. The Court notes that the new policy respects the Article 8 rights of patients by involving them in decisions where doctors think a DNR order is necessary. However, the previous policy which had led to a DNR order being placed on Mrs Tracey’s records without consultation had breached her human rights under Article 8.

Beyond the case – the everyday impact

The right to respect for private and family life is not absolute. It is a qualified right, which means officials can restrict it when there is a law in place to allow such a restriction and when it meets one of the aims set out in the Human Rights Act, e.g. to protect the rights of others. In any event, any restriction of the right must always be proportionate. This means all alternatives should be considered, and the decision maker should not simply jump straight to the most restrictive option.

Following Mrs Tracey’s case, when a doctor assesses whether discussing a DNR order with a patient will distress them enough to cause “physical or psychological harm”, they will have to balance this harm against the potential harm to the patient’s rights if they do not include them in the decision.

Sadly at the British Institute of Human Rights we know that MRs Tracey’s case is not a one-off. We work extensively in the health and social care sector, both with doctors and nurses and advocates supporting patients and families. The issue of DNR orders being placed on people’s files without consultation is something we hear all too frequently.

In one instance a 51 year old man with Down’s syndrome and dementia had a DNR order put on his file without him or his family being consulted. The reasons given on the form were listed as: ‘Down’s syndrome, unable to swallow… bed bound, learning difficulties’. He and his family argued that this was discrimination and that it breached his right to life under Article 2. The case was settled out of court and the NHS Trust apologised.

In another instance a worker for an advocacy group we’ve supported visited her client, an older man with dementia, on the hospital ward. She found a DNR order on his file and when she asked staff about this was she was told that everyone on the ward had a DNR automatically. The client was not aware of the DNR. However his advocate believed he had capacity to take the information on board, as well as having two daughters who had visited but were not consulted or informed. The advocate challenged the blanket use of the DNR orders with staff, explaining that she thought this raised serious human rights issues, especially the right to life not to be discriminated against. The DNR was withdrawn.

Putting human rights into practice

Clearly human rights need to be part of the decisions made every-day by staff in health and social care. A human rights approach helps staff to do this, empowering them to see the law as not merely a compliance issue for lawyers but part of their everyday practice. BIHR’s new resource The Difference It Makes: Putting Human Rights at the Heart of Health and Social Care is designed to help practitioners do this, using a range of real-life stories.

Following Mrs Tracey’s case all professionals involved in DNR decisions need to be aware of their obligations under the Human Rights Act to involve patients in these decisions. It may also be necessary for NHS Trusts and organisations to review their policies on making of DNR decisions to ensure people’s human rights are being respected. This, after all should be at the heart of our health care:

 

NHS Constitution Principle 1: The NHS provides a comprehensive service, available to all… It has a duty to each and every individual that it serves and must respecttheir human rights”

 

 If you found this blog useful please consider supporting BIHR to win a competition for Small Charities Week 16-20 June 2014. All you need to do is send a Tweet which says: #ILoveSmallCharities like @BIHRhumanrights because (and add you reason).
As a small charity we rely on the support of those who care about human rights being respected, protected and fulfilled in the UK. Your Tweet could help us to win this competition!

 

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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.

 

Human rights law protects dignity in decisions about care

By Sanchita Hosali and Natalie Threlfall

Today the European Court of Human Rights has ruled that a London borough’s withdrawal of night-time care from Ms McDonald breached her human rights for almost a year before proper processes were completed. Significantly, in McDonald v UK the Court found a breach of the right to respect for private and family life in the provision of support services for a disabled person. The Court emphasises the importance the human right to respect for private life places on dignity, a principle which now clearly applies in provision and decisions associated with welfare support.

Removing the overnight carer

The case was brought by Ms McDonald, a former prima ballerina with the Scottish Ballet. Following a stroke Ms McDonald needed help to get around her house and was unable to use the toilet at night. The local authority – Kensington and Chelsea – originally provided Ms McDonald with an overnight carer, however this care package was suddenly withdrawn and she was told instead to use incontinence pads at night. As she was not incontinent Ms McDonald refused to do this, and understandably felt that to act as though she was incontinent was an affront to her dignity.

Making the link to human rights
Ms McDonald ended up taking legal action to challenge this decision, including on the grounds that withdrawal of care was an unjustifiable interference with her right to respect for her private life (Article 8 of the Human Rights Act & European Convention). This right includes ensuring public authorities respect physical and mental well-being, that decision-making is fair and dignified and takes account of the person. Recognising that there are not infinite resources, this right can be limited provided it is a proportionate response to the situation, which means it’s both necessary and lawful.

During the course of legal action, two local authority care plan reviews decided that incontinence pads were practical and appropriate. The UK’s Supreme Court rejected her case, describing the human rights argument as ‘hopeless’, and in 2011 all night-time care was withdrawn.

Seeking justice, the long road to Strasbourg
Ms McDonald’s last avenue for challenging the decision lay with the European Court of Human Rights. The Court reinforced the need for a broad approach to the right to respect for private life. The Court stressed that respect for ‘human dignity and freedom’ are the very essence of the European Convention on Human Rights, notions which will be increasingly significant with an aging population and finite welfare resources. The Court applied the reasoning from the Pretty case, in which a disabled woman, sought to clarify whether her husband would be prosecuted for assisting her to commit suicide. Although a very different set of issues, the European Court today confirmed that dignity is not only relevant to such extreme cases, but is also important in everyday issues such as decisions about care and support services. The Court found that the local authority decision meant Ms McDonald was forced to live in a way that “conflicted with [her] strongly held ideas of self and personal identity” and therefore her case fell within the right to respect for private life.

The outcome for Ms McDonald
Following withdrawal of the care package for overnight assistance, Miss McDonald’s needs were reassessed as being met through the use of incontinence pads. The European Court ruled this was a decision the local authority was entitled to make as they had carefully weighed Miss McDonald’s needs against the economic consequences of paying for an overnight carer. However, crucially, the decision to withdraw overnight care had been made before Miss McDonald’s needs were reassessed. Therefore for the period before the reassessment, the local authority was not meeting its duty to Miss McDonald and had breached her human rights.

Dignity and the right to respect for private life back at home
In this case the later decision to withdraw overnight care was not a breach of Ms McDonald’s rights, because the proper processes were then followed, and whether this is necessary is a decision that best rests with national authorities. However, The European Court’s reliance on the concept of “strongly held ideas of self and personal identity” sends an important signal to the UK courts and local authorities to make sure people’s basic human rights are given proper consideration, and cannot simply be ignored to save money. Today’s decision, although not a resounding victory for Ms McDonald, underlines the potential power of the human rights safety-net to make sure local authorities put the protection of our human rights at the heart of decisions about care and support.

 

Read BIHR’s Press Statement in response to the McDonald case here.

For information on human rights in health and social care, including real life stories of challenge and change which use human rights without court action download BIHR’s The Difference it Makes: Putting Human Rights at the Heart of Health and Care.  You can also download our Human Rights Pocketbook for Carers, Our Human Rights Guide for Older People and tour Mental Health and Human Rights Advocacy guide here.

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BIHR’s work to bring human rights to life in Mind’s membership magazine

Sanchita quote HR about us all

 

BIHR’s Deputy Director Sanchita Hosali was delighted to contribute to the 4-page human rights special in the latest edition of Mind’s Membership Magazine. The special feature takes a look at the Human Rights Act and how it protects people living with mental health problems from injustice and undignified treatment. As our Deputy Director Sanchita explains in the magazine “Human rights are about all of us, they are the basic protections that we should all have. When we give over power to people in positions of authority, human rights can help to give us power back.” 

Our real life stories on how the Human Rights Act helps in everyday life

Highlighting BIHR’s work with NHS Trusts and advocacy groups, including local Minds, the magazine features many of our real life stories on how the Human Rights Act is helping people with mental health issues across the country, simply by providing the language for discussion with services and not having to go to court. Our work helped Mary’s advocate to get her support once she left hospital to make sure her right to life was protected. Being able to talk about the right to liberty meant Amit was able to challenge nurses who kept telling him to stay on the ward even though he was entitled to leave and simply wanted to visit a local coffee shop. These and many other real life stories about the Human Rights Act supporting people living with mental health problems are explained in BIHR’s The Human Rights Act: Changing Lives and our highly acclaimed Mental Health Advocacy and Human Rights: Your Guide, a practical resource for service users and those assisting them.

Our advocacy guide, recently commended by the Care Quality Commission, was co-produced with partners on one of our Human Rights in Healthcare projects, including Mind at Brighton and Hove. As part of the project we helped the group to develop a human rights approach in their advocacy service, it’s great to see the continuing success of the project featured in the Mind Magazine. As Bill Turner, Advocacy Team leader, says “The team now regularly refers to specific rights when speaking to health professionals and service providers, and has invoked the HRA to raise concerns about physical abuse, the withdrawal of medication and the refusal to allow a patient to leave a ward.”

Working with mental health services: prevention rather than cure

The magazine also features BIHR’s work with NHS Trusts to practice prevention rather than cure a put human rights at the heart of services. For example we support Mersey Care NHS Trust to integrate human rights into learning disability and mental health services. This has included innovate work to support staff and to involve patients and carers in decisions, including issues about risk and how the service is run. As Irene Burns-Watts, Service Director, says in the magazine: “What is really powerful is how we have begun to translate human rights into people’s everyday care: supporting people with humanity, dignity and respect. We are beginning to see results, including a reduction in incidents and in the use of both restraint and medication”

Standing up for human rights

The article also looks at hoSanchita explain HRw human rights tend to get a bad press in the UK, with politicians often quick to criticise them. Sanchita explains how this is hardly surprising given that our rights are designed to limit those with power. She also discusses how suggestions that we should alter human rights laws are unhelpful, and what is needed is a genuine debate to increase understanding of human rights: “Before we talk about getting rid of the Human  Rights Act or changing it, let’s look at what it’s really doing.” Sanchita flags up our Annual Human Rights Tour, free pop-up events across the country which give people a place to get information about human rights, to debate and discuss what they really mean, and how this leads to very different conversations. Find out more about bidding for the 2014 Tour to come to your town this Autumn here.

Find our more

You can find out more about what Mind does and becoming a member, including receiving your own regular copy of the full Membership News here.

You can find out more about BIHR’s projects with partner organisations such as Mind Brighton by checking out our Human Rights in Healthcare Project pages here. Our latest resource features lots of real stories, The Difference It Makes: Putting Human Rights at the Heart of Health and Care, is available here. Finally, if you are living with mental health problems or supporting someone who is get your copy of BIHR’s Mental Health Advocacy and Human Rights: Your Guide here.

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.