Older People & Human Rights

Dr Joan RapaportJoan Rapaport reports from the 9th Annual Joint Conference of Age UK London, the Social Care Workforce Research Unit and Making Research Count. (1,789 words)

The conference, held on the Guy’s Campus of King’s College London, was chaired by Jo Moriarty, Deputy Director of the Social Care Workforce Research Unit, and attracted a capacity audience. Speakers’ presentations are available on the SCWRU conference webpage.

Human Rights Act: overview of current changes: Caroline Green, PhD student, Social Care Workforce Research Unit

Whilst human rights have been around for hundreds of years both globally and in Britain, Caroline acknowledged that our understanding mostly relates to post World War II developments. The European Convention on Human Rights, drafted in 1950, contains numbered ‘Articles’ each of which protects a basic human right. The European Court of Human Rights, based in Strasbourg, rules on cases brought under convention from the 47 signatories. The Human Rights Act 1998 (HRA) was introduced to bring human rights ‘closer’ to the British people. Since then, all new UK laws must be HRA compliant. In respect of social care, certain Articles have particular significance – these are:

  • the right to life (2);
  • the prohibition of torture or inhuman or degrading treatment (3);
  • the right to liberty and security (5); and
  • the right to respect for private and family life (8).

Caroline emphasized that human rights applies to public and some private agencies, businesses and managers and all of us. Human Rights principles underpin all laws and policies, such as the Mental Capacity Act 2005, highly relevant in older people’s care. All care homes are now bound by the HRA under the Care Act 2014, section 73 and Care Quality Commission regulation. The HRA has been cited in cases of alleged abuse and neglect and also around consultations on care home closures.

Caroline admitted that the HRA faced an uncertain future given the government’s declared intentions to replace it with a British Bill of Human Rights. However, this plan appears to be on hold until Brexit has been finalized. The Act will therefore remain for a few years more, at least. Caroline surmised that the reasons for the uncertainty partly lie in a dislike of non-British judges perceived as being ‘interfering’ in British affairs. In addition, some tabloid newspapers have exploited fears that offender and terrorist groups have ‘wrongly’ benefited from the Act.  Whilst the HRA’s future is in doubt in the medium term, Caroline said it was certain that human rights will remain an integral part of the British legal system.

The Difference it Makes: Putting the Human Rights Act into practice: Helen Wildbore, Senior Human Rights Officer, British Institute of Human Rights (BIHR)

Helen explained that the British Institute of Human Rights is an independent charity to bring human rights to life in the UK. Education, the dissemination of information and lobbying for improvement are the ‘bread and butter’ of its work. It focuses on connecting human rights to the frontline. As such it provides fact sheets and literature for advocates, carers, and frontline staff, undertakes an annual tour of events around the country and provides human rights training. The Institute provides training for the Care Quality Commission.

Human rights are based on shared moral values such as fairness, equality and autonomy for which we all share responsibility. These are difficult to define but become apparent when they are missing. It sometimes feels that those in authority have all the power. HRA holds to account those who abuse their positions of power. Helen stressed that human rights apply to us all. Furthermore, even where it has been found necessary to curtail a person’s freedom, he or she is not stripped of all his or her rights. Service providers must meet minimum standards. The HRA may be invoked where services are considered to risk or have violated a person’s human rights.

Helen cited cases where safeguarding concerns applied (Article 3), an inappropriate service had been provided (Article 5), and the needs and autonomy of a frail elderly couple and of their daughter had been overlooked (Article 8). In all three cases, attempts to bring about change succeeded after the HRA was mentioned. In another case, a man with Down’s syndrome and dementia successfully challenged a ‘do not resuscitate’ decision on grounds of discrimination (right to life, Article 2 and right to non-discrimination, Article 14). The NHS Trust later apologized for making this decision without consulting him.

Helen invited the audience to join the Institute’s e-news, to become a BIHR friend and to follow its communications via Twitter.

People with dementia have rights too: Gavin Terry, Policy Manager, Alzheimer’s Society

The Alzheimer’s Society has declared that it now operates a rights-based approach to dementia care and support for people with the condition and their carers. Gavin commented on the projected increase in the numbers of people with dementia in the UK from the current 850,000 to over a million in 2025 and 2 million in 2051. Seventy per cent of people in care homes are thought to have dementia. It is not confined to older people: over 45,000 of those under the age of 65 years have the condition. Carers bear the brunt of the cost, saving the country an estimated £11 billion a year. Although dementia is a major cause of disability in later life, we spend less on it than on cancer and cardiovascular disease.

Gavin said the Alzheimer’s Society recognized that ageism, stigma and discrimination, and the vulnerability of people with dementia and their carers posed challenges. These must be tackled to ensure people are treated with dignity and offered support based on their individual needs. The Society is campaigning for improvements in care and support and robust action to stop abuse. The overuse of anti-psychotic medication, which contributes to an estimated 18,000 deaths a year, is being challenged. The need to provide more services for minority ethnic groups that recognize cultural preferences is also on the agenda. Gavin said evidence shows that more money is required to meet day-to-day social care needs.

The Alzheimer’s Society provides information and advice, produces publications and has an online Talking Point forum and National Helpline. It also has a Lasting Power of Attorney service to help people to complete the necessary documentation. The Helpline receives a wide range of requests such as safeguarding concerns, access to health care, information on carers’ assessments, banking and financial services, and how to navigate utility companies such as energy providers. The Society is in the throes of rebranding and stepping up its rights-based approach. It aims to make dementia ‘impossible to ignore’ and to demonstrate the hallmark of a good dementia service.

How to help when being hindered? Professional responses when faced with third parties preventing access to adults at risk: Martin Stevens, Senior Research Fellow, Social Care Workforce Research Unit

Martin Stevens outlined some emerging findings of research in progress to investigate safeguarding practice funded by the Department of Health. He described a range of barriers that professionals sometimes face when trying to access adults who may be at risk of abuse or neglect. For example, a family member or friend might refuse access or insist on being present when the individual is being interviewed. This person may also insist on being present, arousing suspicions of undue influence. If the individual is known to lack capacity, the Mental Capacity Act 2005 can be applied. However, these hindering tactics present human rights conundrums.

The responses of adult safeguarding managers to two safeguarding case vignettes suggest that social workers often bring in other professionals, wider services and friends and family when they encounter difficulties of access. The degree to which an individual is deemed to have autonomy and the necessity for his or her protection are central components in decision-making. Specialist training and support from colleagues and managers are thought to be critical.

Legal powers of access vary across the different countries of the UK. In England and Wales, in appropriate scenarios non-molestation orders, protection against domestic violence, a Court of Protection order and Mental Health Act 1983 sanctions may be invoked. However, the Care Act 2014 does not give a power of access. Arguments for and against are finely balanced. The research is revealing some distinctions in approaches in respect of known and unknown adults at risk and whether they have mental capacity and are able to give consent. Social work skills are considered critical in negotiating the conundrum of human rights to privacy, protection and autonomy that prevail when access is denied or limited. Martin said the third stage of the research involving three local authorities will investigate the use of tactics and practice approaches to helping adults at risk and views on having a power of access.

Speakers’ panel: questions and discussion

Discrimination and problems obtaining health and social care because of cuts in services dominated the lively debate.

Concerns were raised on behalf of ethnic minority and LGBT groups where services were often not geared to meet their particular needs. Several examples of discrimination by dementia and older people’s services were described. Gavin commented on the negative images of dementia in the media. To counter this, the Alzheimer’s Society is taking steps to present dementia in a more positive way.

Regarding cuts to services, Helen commented on the ‘brick wall’ she was hearing leading to people finding it ‘harder and harder’ to obtain services. She explained that under the HRA some rights were absolute, such as the right to life and to be free from torture. If health and care services were so bad in respect of those, this would amount to a violation of human rights. However, rights can be restricted. Human rights are not a trump card in these instances. Even so, there may still be a conversation to be had. Helen described a case where an advocate’s request for a re-assessment had led to a person’s home being altered to accommodate her disability.

Where multiple NHS breaches of right to life occurred, Helen explained the usual complaints procedures. However, if these proved fruitless, going to the Ombudsman, Healthwatch, an MP and even the Minister were possible avenues. Helen advocated involving the local media and lobby groups to gain momentum to start an inquiry or investigation. She agreed that complaints may be made anonymously to protect a service user’s identity.

What happens to the safeguarding research findings? Martin explained that this research would be used to build up a body of knowledge on safeguarding before informing policy and practice changes. Jo pointed to the many seminars to disseminate research information hosted by the Social Care Workforce Research Unit, such as the Making Research Count network and the Margaret Butterworth Care Home Forum and the new Home Care Research Forum.

Joan Rapaport is Visiting Research Fellow at the Social Care Workforce Research Unit at King’s.

About our Joint Annual Conferences on Older People

The Social Care Workforce Research Unit at King’s College London has conducted nine conferences on the theme of older people with Age UK London (formerly Age Concern London) and Making Research Count: ‘human rights‘ (February 2017); ‘end of life care’ (February 2016); ‘compassionate care’ (February 2015); ‘my house or my home?’ (February 2014); ‘invisible communities’ (January 2013); ‘addressing equalities’ (January 2012); ‘challenging times’ (March 2011); ‘personalisation’ (January 2010); and, ‘dignity in care’ (June 2008). 

Comments are closed.