Carers’ human rights being breached

The report, written by leading human rights consultants, Global Partners and Associates, examines the experiences of carers in the context of the main provisions of the Human Rights Act 1998, which came into force in October 2000.

Research from the report ‘Whose rights are they anyway? Carers and the Human Rights Act’ concludes that the Human Rights Act has not yet been of value to carers, but that it could be. It finds significant weaknesses in the social care and health system, as well as evidence that in individual cases carers may face human rights violations which could be open to challenge in the courts.

It bases its findings on three key tenets of the Human Rights Act where carers’ rights are clearly being breached:

Carers’ rights to life are not adequately considered
Under Article 2 - the right to have one’s life protected by law - carers often jeopardise their health by delaying medical treatment to a point where they put their lives at risk. This is because of inadequate support to relieve them of their caring duties.

Carers’ rights to privacy and family life
Similarly, under Article 8 - the right to respect for one’s privacy and family life - the Act offers a framework for ensuring that the rights of an older or disabled person are balanced against the rights of a carer.  Balancing rarely happens.  Social services teams regularly tell carers that they cannot have a service the family wants, before their needs have even been assessed. They are told that even if they have an assessment they will not receive any more support. These attitudes and a failure to apply current legislation deter carers from exercising their basic rights, such as keeping up family relationships and social ties.

Carers’ rights to be free from inhuman or degrading treatment
Under Article 3 - the right to be free from inhuman or degrading treatment - the health risks that carers face could be an issue under this clause.  If public authorities know of carers who are suffering acute mental health problems or physical illness as a result of caring and do nothing to alleviate this or prevent it, this could constitute a violation of this human right.

The research presents a clear picture of carers who find that the services they need are not available to them because of cost, staff time or attitude.  This lack of resources available in order to guarantee rights could itself be considered a breach of the Human Rights Act.

Yet, the report argues, good practice need not be expensive. Imaginative solutions such as the example provided in one area of a 24-hour emergency service to enable support arrangements to be put in place in case of a crisis, would certainly protect Article 2 of the Act.

Imelda Redmond, Chief Executive of Carers UK, says, “Carers tell us time and time again that they feel their human rights are being infringed when they are not given a choice about caring.  They find that when support is not right or insufficient, it is impossible to maintain even a basic quality of life.  Despite developments in law to improve the situation for carers, these policies are not being put into practice.  As this report shows, this issue needs to be urgently addressed to avoid legal challenge.

“We are not talking about just a few people. There are six million carers throughout the UK and 1.25 million provide over 50 hours of care per week.  Every year, around two million people become carers.  This gives an indication of the potential scale of the issue.”

Carers UK is calling for new measures to address the situation urgently:

• further and urgent investigation into whether the Human Rights Act is being applied correctly in relation to carers
• action from Government to bring forward legislation to prevent discrimination against people with caring responsibilities
• a review of Government policy to ensure carers are prevented from social exclusion
• a review of funding by local and national government to ensure there are sufficient resources to prevent infringement of the Human Rights Act
• improved guidance for health and social services practitioners
• action from regulatory bodies to incorporate these issues into their inspections of health and social care services
• regular information and rights-based campaigns to ensure carers are aware of their rights

Ends.

You can download a copy of 'Whose rights are they anyway? : Carers and the Human Rights Act' from our research report library.

Notes to Editors:

1.    Case studies are given below.  For interviews please see our media centre

2.    CEO, Imelda Redmond and Luke Clements, solicitor and legal consultant specialising in carers’ rights, are available for comment.

3.    Whose rights are they anyway? Carers and the Human Rights Act is written by Jenny Watson, Senior Human Rights Adviser, Global Partners and Associates.  It was commissioned and published by Carers UK with support from the Calouste Gulbenkian Foundation and future work will be supported with funding by the European Social Fund EQUAL Community Initiative Programme.

4.    Carers UK continues to make a difference to carers' lives by: campaigning for a better deal for carers; informing carers of their rights and what help is available; training and advising professionals who work with carers; working across the UK through its membership and networks of branches and affiliates.  There are six million carers throughout the UK. Their support is worth £57 billion a year, equivalent to a second NHS.

Case studies

Helen, Rugby, late 50s

Helen cares for her husband Robert, whose has had Multiple Sclerosis for 30 years. His condition has worsened in recent years – he can no longer sit or stand up and uses a powered wheelchair. He needs feeding and round the clock care. Helen gave up work to care for Robert.

Helen’s own health was put at serious risk one weekend when she returned home following an operation for a heart condition. She was informed by social services that she had used up all respite care available for Robert while in hospital. She was forced to spend several days battling with the local authority for help - at a time she had been told to rest by her doctors following her major operation. This could have held very serious implications for Helen’s long-term health.

Eventually extra respite care was secured, but at an additional cost to Helen.

Human Rights Act:  Article two – the right to have one’s life protected by law
Helen’s situation forced her to choose between her own life, and ensuring that the person she cares for was not left with serious health implications, even death. Carers often put their own health at serious risk by putting off major operations as they cannot get the right care for the person they care for.

Linda, Newcastle

Linda cares full-time for her husband Phillip, aged 50, who has been disabled for over ten years.

Linda’s own health has suffered as a direct result of her caring role. She has suffered panic attacks brought on by stress and difficulties in getting their house adapted to meet Phillip’s needs meant Linda physically damaged her back helping her husband.

Linda works part-time, and has the benefit of an understanding employer, but following a Carers’ Assessment she now receives fewer services than before. Linda constantly feels stretched to her very limit. When her son suffered a serious accident there was no emergency support available for her husband so Linda could be with her son while he was in a critical condition; she was forced to rely on favours from care workers she knew.

Human Rights Act:  Article 8 – the right to respect for one’s privacy and family life
Linda feels that her situation is a fundamental breach of her right to a family life and a right to life.

Mr Legerton, Hereford

Mr Legerton, 61, has cared for his wife Linda for the past 15 years. Linda was born with mild Cerebral Palsy. In 1979, complications following a brain tumour left her a quadriplegic. She currently has no movement in any part of her body except her head. She cannot speak and is totally deaf, as well as suffering from heart disease and epileptic seizures.

Mr Legerton gave up work to care full-time for Linda, and look after their two children. The family now survive on benefits alone. To begin with, social services offered four weeks respite care per year, plus day-care and care nurse assistance for a few hours a day. But in 2004 all of these services were cut, with no explanation offered at the time.

Shortly after, Linda was hospitalised following a serious seizure. She remained in hospital for almost 18 weeks, and hospital staff strongly recommended she only be discharged if a full care package was in place. However, there were no qualified staff available to look after her in her complex condition, and she was later discharged back into Mr Legerton's round-the-clock care.

Since becoming a carer, Mr Legerton has felt a complete lack of support from care services. He feels isolated from family and friends, and has not had a break for two years. He frequently goes nights with little or no sleep.

Human Rights Act:  Article 8 – the right to respect for one’s privacy and family life
Mr Legerton's right to private and family life are being infringed from the lack of support he is receiving.