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 too
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.