Académique Documents
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Culture Documents
Theo Gavrielides
Theo Gavrielides is based at Independent Academic Research Studies (IARS), London, UK.
Abstract Purpose It was expected that the Human Rights Act (HRA) 1998 would promote a human rights culture in public services and beyond. This paper seeks to focus on the Acts impact on minority, ethnic users of health and social care services. Design/methodology/approach The paper reviewed recent policy and academic papers as well as legislative and government initiatives since the Acts implementation in 2000. It also looked at user surveys and evidence submitted to Parliament and public inquiries. A critical synthesis and analysis of the data was attempted. Findings The paper makes the argument that the original intentions behind the HRA have not been materialised. The paper attributes this failure to issues of misunderstanding around the Act and human rights. The paper also argues that by focusing more on mainstreaming the principles underlying the Act and less on its legalistic interpretation, human rights will be seen more relevant by both users and providers of health and social care services. Originality/value An original analysis and interpretation of what these principles encompass is attempted whilst brief recommendations for policy and practice are posited. Keywords Human rights (Law), Health, Social care facilities, Human Rights Act Paper type Research paper
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it about. Public service providers, including those working in health and social care, became nervous as they feared that this culture would really mean an avalanche of legal cases against them (McHale, 2008). In 1999, the Home Secretary tried to address these fears: Culture is one of those words that get used to mean a whole of different things and sometimes nothing at all. What do we mean when we talk of building a culture of rights and responsibilities in the UK? These arent empty words or mere jargon. Its what we want the whole public services in this country to move towards (Straw, 1999). He then explained that culture encompasses the habits of mind, the intellectual reexes and the professional sensibilities, which are historically ingrained and typical of the behaviour of a particular group of people. The Parliamentary Joint Committee on Human Rights (JCHR) (2002, 2003) went a step further by identifying the elements, which they believed, comprise a culture of human rights. They said that this culture has two dimensions institutional and ethical. So far as the former is concerned, it requires that human rights should shape the goals, structures and practices of our public bodies. In their decision making and their service delivery, schools, hospitals, workplaces and other organs and agencies of the state should ensure full respect for the rights of those involved [. . .]. Achieving that requires public authorities to understand their obligations not only to avoid violating the rights of those in their care, or whom they serve, but also to have regard to their wider and more positive duty to secure everyone the rights and freedoms which the HRA and the other instruments dene. When asked when will we know that a human rights culture has been successfully created, the JCHR (2002) responded, when there will be a widely-shared sense of entitlement to these rights, of personal responsibility and of respect for the rights of others, and when this inuences all our institutional policies and practices. This would help create a more humane society, a more responsive government and better public services, and could help to deepen and widen democracy by increasing the sense amongst individual men and women that they have a stake in the way in which they are governed. It soon became clear that human rights and the HRA were intended to be used as levers for cultural change in public service provision and society (Gavrielides, 2008). This paper focuses only on the Acts impact and potential in relation to health and social care services. These are dened as:
B B
Health services (e.g. hospitals, GP surgeries, mental health institutions). Social services (e.g. counselling, adoption, fostering, HIV support, attention decit disorder centres, job plus centres, housing, care homes, sheltered housing, childcare, advice and support services, care at home services/carers and also careers counselling, youth clubs and societies, leisure centres, complaints, learning disabilities, licensing, litter, pollution, noise nuisance and libraries).
Human rights and minority, ethnic users of health and social care services
The human rights culture that the HRA was hoped to create was seen by race equality campaigners as a unique opportunity to strengthen the debate and enforcement of anti-discrimination policies in the UK (McHale, 2008). It was also hoped to inject extra oomph into the clauses of the Race Relations (Amendment) Act 2000 which according to many was inconsistently applied in health and social care services (Harvey, 2005; Equality and Human Rights Commission (EHRC), 2009). In fact, some went as far as saying that the HRA would fundamentally change the way race equality and equality is seen in the UK, bringing the debate within the human rights framework (Garwood-Gowers et al., 2001; Spencer, 2005; Wicks, 2007). 11 years on and we are yet to witness such an impact. Some have argued that this is because the concept of human rights is not easily associated with public service provision least health and social care services (Harvey, 2005; Gavrielides, 2008; Ministry of Justice, 2008). The same seems to apply to the HRA which is faced with a certain level of hostility by public service providers and consumers. In fact, there is some evidence to suggest that the
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problem is particularly acute within Black and minority ethnic (BME) communities (Gavrielides, 2008; Blooden and Bamford, 2010). Even worse, this lack may be directly related to experiences of poor quality public service delivery (JCHR, 2007; Gavrielides, 2009). For instance, according to Age Concern (2007, p. 2), there is evidence of unsatisfactory hospital care for older BME patients owing to a number of factors including insensitivity to cultural, religious and linguistic needs (Articles 8, 9 and 14 HRA). Butler argued that there are clear signs of misunderstanding about the Acts principles and extent of application (Butler, 2005). The Audit Commission (2003, p. 4) also said [. . .] decision makers in public bodies have yet to absorb and incorporate in their decision making processes the values inherent in the HRA. For instance, research indicates that service providers have demonstrated confusion and misunderstanding around the Act (British Institute of Human Rights, 2002). A number of academic and human rights bodies have claimed that low levels of awareness have undermined the application of the Act, the delivery of good public service and the development of a human rights culture (Butler, 2004). We have not found evidence of the rapid development of awareness of a culture of respect for human rights and its implications throughout society, and what awareness there is often appears partial or ill-informed. We fear that the highwater mark has been passed, and that awareness of human rights is ebbing, both within public authorities and within the public at large (JCHR, 2002, p. 6). According to recent research, BME users of health and social care services tend to experience additional barriers such as:
B B B B
difculty in accessing information; difculty understanding a complex, uncertain and locally varied system; stigma, low expectations or lack of condence in ones right to access services; problems in accessing general practitioners and in obtaining an accurate diagnosis, assessment and referral from them and other gatekeepers; a lack of appropriate, accessible and attractive provision; and housing/nancial circumstances and the extent to which private and/or family care may constrain individuals options (Blooden and Bamford, 2010, p. 5).
B B
BME users of health and social care services, particularly older people, may also nd themselves lonely as their families tend to live abroad (JCHR, 2007). The issues of loneliness and lack of family care and friends networks are exacerbated amongst BME gay and lesbian groups particularly if they are elderly (EHRC, 2011). Age Concern also argued that BME service users experience a lack of initiative in ghting or even resisting racism and ageism by public service providers including healthcare. Furthermore, a 2001 survey carried out by Age Concern showed that older people from BME groups face a number of problems that are related to a lack of information and awareness of the standards they should expect from public services (Age Concern, 2001, 2007). Moreover, BME consumers of health and social care services are often confused about the origins and purpose of the HRA (Parker, 2005; Osler and Starkey, 2010). If the government promotes the Act they risk unleashing Eurochaos scare stories which ministers fear will provide ofcials with excuses for not exercising powers that are commonplace in other state which have incorporated the ECHR into local law (Klug, 2000). The public often believes that the HRA is imposed by the European Union and that the European Court of Human Rights is a Union body, which, through its decisions, negates UK sovereignty and the authority of Parliament and the judiciary. A large proportion of the general public in the UK is deeply suspicious of anything coming from Europe. It is a shame that useful directives are rarely shown to come from Europe, whereas anything coming from there which can be described as bureaucracy run mad is splashed all over the red tops (Telephone Helplines Association, 2003, p. 5). The same level of misunderstanding is seen with the concept of human rights. Various studies have suggested that:
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Human rights are often conceived by the public to be used only for either extreme cases of torture and inhumane treatment or as a hindrance in the war against terrorism (Butler, 2005). Human rights also tend to be seen as luxury entitlements used by celebrities, travellers or even convicted criminals who want to avoid punishment or claim compensation for trivial reasons (Gavrielides, 2008). Human rights are also often associated with political correctness or conceived in narrow legalistic terms and largely of interest to lawyers. Few people immediately associate human rights with their everyday encounters with public services (Gavrielides, 2008; Ministry of Justice, 2008). Whilst only on rare occasions are civil rights perceived to be about the individual rather than the community. Human rights are also believed to encourage a compensation culture, a name, blame, shame and claim culture, the American Model that we all wish to avoid (HRH The Prince of Wales to the Lord Chancellor, quoted by the Daily Telegraph, 2002).
A 2004 study concluded that when people are asked what human rights mean to them [. . .] the typical response is: disappearances and torture overseas or protecting the rights of terrorists. It seems that they have never had anyone raise human rights in any other contexts (Butler, 2004). The report also said: Celebrities like Naomi Campbell and Catherine Zeta Jones have used human rights arguments to help protect themselves from unwanted media intrusion. Their well-publicised court cases have encouraged a sense that human rights seem to be principally of interest to expensive lawyers (Butler, 2004). Human rights are widely misunderstood. They tend to be seen only in terms of offering protection from the worst excesses of anti-democratic and despotic regimes, or as the concern only of those who are fundamentally at odds with majority views in society (JCHR, 2002, p. 4). Age Concern (2004, p. 5) argued that: Both awareness of human rights amongst public bodies obliged to promote them, and the understanding by the public enjoying their protection, is low. For example, older people from BME groups know very little about the available services and the human rights standards they should expect from the state (Help the Aged, 2002). This lack of access to information and public services can result in older people from BME groups being socially isolated from their peers (Age Concern, 2001). Research also revealed that ignorance and suspicion were the main barriers to older people using the language of human rights. Some respondents thought that human rights were more relevant to dictatorships overseas than to the UK. Others thought that the HRA was about political correctness. On the other hand, when asked about their framework of values, older people agreed that respect and fairness were key principles a close alignment with the principles that underpin human rights instruments (Lewis and Morris, 2006). In 2003, the JCHR criticised the governments human rights policy work by saying: The enthusiasm to make the HRA come alive as a measure which places positive duties on public authorities, and which should promote a culture of respect for human rights in every aspect of public life, needs to be rekindled [. . .]. Making a culture of human rights a reality requires that individuals are able to understand what their rights are, and are able to seek advice, assistance, redress and protection if they believe that their rights have been violated or are threatened with violation. It also requires that they understand their responsibilities for upholding those rights in their dealings with others (JCHR, 2002, p. 9). The government received a second blow with a 2003 Audit Commission survey with 175 public authorities. The study concluded that: The HRA can help to improve public services, as it seeks to ensure the delivery of quality services that meet the needs of individual service users [. . .] [However] three years on, the impact of the Act is in danger of stalling [. . .] (p. 3). About 58 per cent of public bodies surveyed still had not adopted a strategy or a corporate approach to human rights. In many local authorities, the Act had not left the desks of the lawyers. Most local authorities continued to review policies and practices on a piecemeal basis and to respond to case law:
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In health, 73 per cent of trusts were not taking action. Health bodies consistently lagged behind other public services. The biggest risk to public bodies was their lack of arrangements for ensuring that their contractors and partners were taking reasonable steps to comply with the Act. 61 per cent of public bodies had failed to act. Of 175 public bodies surveyed, only one council had made general information on the Act available to the public. Organisations were reluctant to promote human rights with citizens and their communities because they feared an increase in the number of complaints raising human rights issues.
The report concluded: Most [public authorities] failed to see the benets of using human rights as a vehicle for service improvement by making the principles of dignity and respect central to their policy agenda, which would place service users at the heart of what they do (p. 10).
What can human rights do for health and social care minority, ethnic users?
Human rights can bring benets to service users. Some policies, practices and legislation that result in direct benets to service users are being inuenced by the Act. Mental health is going through radical reform, which is aimed at the improving quality of life for people who experience mental health difculties. These changes have been inuenced by the Act and will help to improve the standards of service and care of mental health patients. Similarly, the National Health Service Framework was written with human rights in mind. The Health and Social Care, Fire Services, and Criminal Justice Bills, to name but a few, are being improved because of the scrutiny process against human rights principles. Human Rights legislation has been used innovatively as a framework to improve the equality and dignity of people with learning disabilities in their relationships with carers and in education as part of a young citizenship programme for children (Audit Commission, 2003, p. 3). However, too much emphasis has been put on the legalistic nature of human rights rather than the underlying values characterising them. According to the JCHR (2002, p. 6), Too often human rights are looked upon as something from which the State needs to defend itself, rather than to promote as its core ethical values. There is a failure to recognise the part that they could play in promoting social justice and social inclusion and in the drive to improve public services. We have found widespread evidence of a lack of respect for the rights of those who use public services, especially the rights of those who are most vulnerable and in need of protection. Looking at the values and legal principles underlying human rights and the HRA, particularly in the context of every-day health and social care service delivery, their relevance and indeed signicance for BME users becomes apparent. Being treated with dignity and respect. Encompassing:
B B B B
respect for the person; right to be free from inhumane or degrading treatment; recognition of a persons dignity because of his/her humanity; and respect for a persons home and family.
The rst three are mainly protected by Article 3 of the HRA, whilst the last principle is protected by Articles 8 and 12, but a number of other articles may come into play. Other types of treatment may also be in breach of this principle though in a milder form and without ill intention. For example, physical assault, the use of psychological pressure, keeping a person in inhumane conditions (e.g. dirty beds and wards), deprivation of sleep or food or drink, overcrowded wards, inadequate heating/toilets/sleeping arrangements, restricted recreation and contact with the outside world. This value also covers conduct that grossly humiliates (issues of politeness are not covered), in the sense of treating someone disrespectfully because of who he/she is (e.g. BME elders, children born out of wedlock, gay men and lesbians). Intimate body searches and searchers contrary to someones beliefs are also covered.
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Equality. Encompassing:
B
non-discrimination against particular groups (e.g. on grounds of sex, religion, ethnicity, race, gender, age, social background, language); social inclusion; and equality in the narrow sense.
B B
The main difference between non-discrimination and social inclusion and equality in the narrow sense is that the latter two require a positive action on behalf of public authorities, whereas the former requires them to avoid discriminating. For example, the Race Relations Act required a number of public authorities to take active steps towards race equality, equality of opportunity and equal treatment. This is not the case with the anti-discrimination clauses of HRA (Article 14), which may occur only in the context of another article/right within the Act. Fairness and involvement in decision making. Encompassing:
B B B
These principles are protected by Article 6, which initially included only fairness in the courts context. However, case law has now expanded to include not just any tribunal but also the right to a fair and effective complaints procedure (e.g. hospital users, residents of sheltered accommodation, adoption, repossession). Examples of where this value may be breached by public bodies include: being prejudiced; not involving all interested parties in a decision-making process (including the taking or changing of medication); not providing appeal procedures; not informing interested parties about the outcome of procedures; not being transparent during the decision-making process and/or its outcome. Not participating in the process due to language barriers or lack of understanding of the system, a common issue for BME elders and ethnic, minority users of healthcare services). Condentiality. This principle is mainly protected under Article 8 and covers the right of all individuals to uninterrupted and uncensored communication with others. This may include telephone and mail communication, e-mails and text messages. More importantly, it covers information recorded in public documents especially health records, documentation and reports kept by Local Councils, social services and GPs. Collecting information about a person must be justied under the articles exceptions and cannot be done arbitrarily. Privacy. This right is mainly protected under Article 8, and is broader than the well-known concept of privacy encompassing:
B
cases that relate to the personal identity of an individual (e.g. choice of name, sexual identity, mode of dress, how to present ourselves to others); cases that relate to the moral and physical integrity of an individual (e.g. corporal punishment in schools, or sexual assaults upon mentally ill people or the elderly or people in hospitals); cases that relate to individuals private space (e.g. spying on the activities of an individual, healthcare service staff leaving the door open when a patient is naked, the right of an individual to keep for himself some information that he may not want to share with others, e.g. what types of books he reads, and also taking photos without permission); and It may also cover the sexual and social relationships of a person.
The former includes legal, consensual sexual activities of any type. The latter covers the capacity by reason of cultural familiarity and linguistic facility to enter into social relationships with others. The development of this idea is yet incomplete but it carries with it important possibilities for those who may be isolated from wider society by reason of cultural tradition or educational opportunity. Right to life. This is protected by Article 2 and may also include the right to death. Although the taking of ones life is not automatically considered a violation, this has to be legal and
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justied having passed the test of proportionality. The Court has attempted to expand the scope of this right to cover matters such as the provision of medical care and a healthy environment but so far infringement has been found only in extreme cases. Freedom to believe. This is guaranteed under Article 8 and has a place of pre-eminence in the Act. It covers the manifestation of ones religious beliefs, changing religion, the decision not to have a religion, the choice to believe or not to believe. This may include issues such as clothing and dietary requirements which although to some may appear minor for BME communities often cause distress and anxiety.
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A strong, evidence-based business case for mainstreaming human rights is needed. It is important that pockets of examples where steps had been taken to mainstream human rights are identied. By focusing on these case studies, it will become easier to test whether the mainstreaming of human rights has any positive impact on consumers and providers of public services. These ndings could then be contrasted with data from public services that are known not to have proactively taken any steps to introduce human rights principles in their thinking and decision making. Further research is therefore warranted before any reform takes place and the role of the inspectorates and auditors will be critical in this exercise. Subsequently, public authorities could be presented with a list of benets which could show them whats in it for them if human rights are mainstreamed. The business case should also address the following questions:
B
Is there evidence to suggest that where human rights are mainstreamed, the satisfaction of health and social care users is increased? Is there evidence to suggest that where human rights are mainstreamed, health and social care user outcomes are improved? (e.g. wellbeing, improved health, quicker recovery). Is there evidence to suggest that where human rights are mainstreamed, health and social care service staff become more satised with their job? (e.g. less stress, lower turnover, sickness absence, reminded why they chose the given profession in the rst place). Is there evidence to suggest that where human rights are mainstreamed, decision making becomes easier and of better quality? (e.g. compatible with HRA and other legislation, staff nd it easier to apply the law).
At a central government level, Whitehall will need to make it a high priority, using business arguments to co-ordinate, encourage and monitor the progress of government departments. In particular, they will need to adopt human rights strategies of their own which uphold and promote the standards and values in the HRA and recognise the importance of making customer care, based on human rights values, central to service design and delivery. Moreover, they will need to facilitate the adoption of equivalent human rights strategies in the public authorities they fund or sponsor. At a local level, health and social care providers will need to make customer care, based on human rights values, central to service delivery and ensure that this message is received and understood by all staff. To this end, they will need to provide to managers and decision-makers training and guidance on human rights and the HRA that is relevant to their work and demonstrates the application of the HRA in sound decision making. With regards to inspections and advice, guidance and tools will need to be developed to help public authorities cascade their human rights strategies to frontline staff. The Inspectorates will need to work closely with central and local authorities to ensure that a range of incentives and disincentives is put in place to support the implementation of those strategies.
References
Age Concern (2001), Improving Access by Black and Minority Ethnic Elders to Information and Advice Services, Age Concern, London. Age Concern (2004), Public Involvement and the Commission for Equality and Human Rights, Age Concern, London. Age Concern (2007), Submission to the Joint Committee on Human Rights Inquiry into the Human Rights of Older Persons in Healthcare, Age Concern, London.
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Audit Commission (2003), Human Rights: Improving Public Service Delivery, Audit Commission, London. Blooden, I. and Bamford, S.M. (2010), Equality and Diversity and Older People with High Support Needs, Joseph Rowntree Foundation, York. British Institute of Human Rights (2002), Something for Everyone, British Institute of Human Rights, London. Butler, F. (2004), Human Rights: Who Needs Them?, IPPR, London. Butler, F. (2005), Building a human rights culture, in Harvey, C. (Ed.), Human Rights in the Community, Hart, Portland, OR, pp. 63-81. EHRC (2009), Positive Action: Brieng Note, Equality and Human Rights Commission, London. EHRC (2011), How Fair is Britain? Triennial Review, Equality and Human Rights Commission, London. Garwood-Gowers, A., Tingle, J. and Lewis, T. (2001), Healthcare Law: The Impact of the Human Rights Act 1998, Cavendish, London. Gavrielides, T. (2008), Human rights and customer satisfaction with public services: a relationship discovered, International Journal of Human Rights, Vol. 12 No. 2, pp. 187-202. Gavrielides, T. (2009), Review by human rights specialist of improving health, supporting justice: a national delivery plan, Department of Health, Equality Impact Assessment of Improving Health, Supporting Justice, Department of Health, London. Harvey, C. (2005), Human Rights in the Community, Hart, Portland, OR. Help the Aged (2002), Age Discrimination in Public Policy: A Review of Evidence, Help the Aged, London. JCHR (2003), The Case for a Human Rights Commission HL Paper 67-I and II, HC 489-I and II, Joint Committee on Human Rights, London. JCHR (2007), The Human Rights of Older People in Healthcare HL Paper 156-I, Vol. I, Joint Committee on Human Rights, London. Joint Committee of Human Rights (2002), The case for a Human Rights Commission, 6th report, session 2002-03 HL Paper 67-IHC, Vol., pp. 11-12, available at: www.publications.parliament.uk/pa/jt200203/ jtselect/jtrights/67/6702.htm (accessed October 2011). Klug, F. (2000), Values for a Godless Age, Penguin, London. Lewis, M. and Morris, J. (2006), Rights for Real: Research on Attitudes of Older People Towards Human Rights, IPPR, London. McHale, J. (2008), Health care choices, faith and belief in the light of the Human Rights Act 1998: new hope or missed opportunity?, Medical Law International, Vol. 9, pp. 331-55. Ministry of Justice (2008), Human Rights Insight Project, Ministry of Justice, London, available at: www. justice.gov.uk/publications/docs/human-rights-insight-part1.pdf (accessed October 2011). OBrien, M. (1999), On the Human rights act 1998, paper presented at the Local Government Association Conference 21 May 1999, available at: www.nationalarchieves.gov.uk/ERORecords/HO/ 421/2/hract/lgaspeech.htm (accessed October 2011). Osler, A. and Starkey, H. (2010), Teachers and Human Rights Education, Trentham Books, Sterling. Parker, C. (2005), The emperors new clothes? The impact of the human rights act on mental health care, in Harvey, C. (Ed.), Human Rights in the Community, Hart, Portland, OR, pp. 155-75. Spencer, S. (2005), Partner rediscover: human rights and equality in the UK, in Harvey, C. (Ed.), Human Rights in the Community, Hart, Portland, OR. Straw Rt Hon Jack, M.P. (1999), Building a human rights culture, paper presented at the Civil Service College Seminar, 9 December. Telephone Helplines Association (2003), Telephone Helplines Association Bulletin, October. Wicks, E. (2007), Human Rights and Healthcare, Hart, Oxford.
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Further reading
Home Ofce (2001), Implementation and Early Effects of The Human Rights Act 1998, Session 2000-1, Evidence to the JCHR, Home Ofce, London.
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