Earlier this month, care services minister Phil Hope promised fundamental changes in the treatment of dementia patients after a review revealed widespread unnecessary use of anti-psychotic drugs.
The review for the Department of Health found that as many as 144,000 people with dementia are being given these drugs which, used excessively, can cause an estimated 1,800 deaths each year. Neil Hunt, chief executive of the Alzheimer's Society, said the situation was "a serious violation" of patients' human rights.
The findings bring into sharp focus the tensions surrounding human rights in health and social care, from health inequalities such as postcode-lottery cancer treatments to more serious violations as in the case of Baby Peter.
Last year, the Equality and Human Rights Commission (EHRC) set up an inquiry to examine the extent to which respect of human rights for individuals is embedded in public service delivery, including health and social care.
The inquiry suggested that public bodies could be doing much more to use a "human rights approach" to improve service delivery. It concluded: "A true understanding of human rights as a tool to improving people's lives is not widespread … improved knowledge and understanding is essential."
The Human Rights Act 1998 enshrined in UK law a set of minimum necessary fundamental rights and freedoms for all. Public sector bodies are required to act compatibly with those rights. The recent EHRC inquiry calls for a greater recognition that human rights are not merely "abstract concepts" but an "effective tool" for delivering organisational success and better services to the public.
How to make human rights a reality in health and social care was the focus of a recent roundtable discussion convened by Society Guardian, in partnership with EHRC. The event was conducted under the anonymity of reporting allowed under the Chatham House rule to encourage frank debate, so this report reflects the themes discussed, without attribution.
High-profile cases may have shone the spotlight on the issue of human rights but it appears that many professionals working in health and social care are still in the dark.
One participant admitted: "What's encompassed in human rights is so enormous that it's frightening for many people." Another said that human rights was "not embedded" in these sectors: "It's hardly ever spoken about in the organisation I work in. I'm struck by how little impact this has had on the frontline."
The NHS's performance on equality and diversity "is not brilliant" and there is plenty of evidence to support that, said one.
Equality and diversity work "tends to be about staffing", while human rights "tends to be about patients". It was not just about embedding in processes but also "in organisational culture and staffing structures". There is "big work to be done on changing mindsets" and deal with the "terrifying realities" of human rights abuses. This was particularly urgent in the "antediluvian" area of mental health and also needed to tackle "the unequal and damaging ways" in which some black and minority ethnic (BME) patients are treated. Another participant raise the issue of prescribing, which is "driven by cost", resulting in some patients such as asthmatics receiving "a lower grade of drugs".
But the prognosis was not all gloomy. According to one participant: "When we talk about the equalities agenda, people have argued for the business case but it hasn't mentioned human rights.
There's an opportunity here." Another said human rights "was not born out of a movement" like disability rights therefore "we have to be realistic about our starting point". But it does have the power "to shift the balance of power between people and state".
For many around the table, one solution would be a higher profile for human rights in professional training. "If it's part of the curriculum, it would stand a much better chance of being embedded," said one participant. Another pointed out that equality and diversity is addressed by post-graduate colleges "but refers to trainees and doesn't mention patients".
Professional judgement – the assumption that "we know what's right for the patient" may need to be challenged. Another warned against "diagnostic overshadowing that only sees diseases in one dimension".
Some participants felt that educators would take the view that something else would have to be lost from the curriculum if they included a focus on human rights.
But the "icing on the cake" approach to human rights was "infuriating", argued one: "It's a fundamental part of learning how to work in the NHS." A different approach where human rights "is embedded in the huge amount of work that medical schools do" was needed.
Participants heard about evidence to show that embedding human rights into service delivery can produce benefits. The Human Rights in Healthcare project is led by the Department of Health in conjunction with the British Institute of Human Rights (BIHR) and five NHS trusts in England. The project has been running since 2006, and aims to support the NHS in using a human rights based approach to improve service design and delivery for everyone.
A key resource developed from the project is "Human rights in healthcare – a framework for local action". This is a practical guide to assist people working in NHS to put human rights principles into practice.
The five pilot NHS trusts engaged in the project have been road-testing the framework by looking at human rights in different aspects of their work, including learning, service user involvement, strategic planning and risk management.
An independent evaluation of the initiative by Ipsos MORI concluded the human rights approach "goes above and beyond good practice in providing renewed quality of care for service users, and staff are empowered to challenge care decisions … it defines a common shared value base more effectively than other guidelines about standards of care … [and is] an empowering tool for service users to hold organisations to account".
But as one participant commented, human rights "has to be right through the stick of rock" to make it a day-to-day reality and "meaningful structures" are needed to support this approach. Opportunities do exist "to capture existing policy to support human rights", said another. The NHS constitution – which sets out what staff, patients and the public can expect from the NHS – is one example. Another, albeit one that participants identified as being insufficiently used at present, is "world-class commissioning", which aims to encourage patient engagement and greater clinical involvement throughout the commissioning process.
Meanwhile the personal care pilots "have shown that service users spend money in a better way for them and get rights and needs met".
For several roundtable participants, poor "buy in" for human rights in health and social care is down to poor leadership. According to one: "Human rights is partly not embedded on the frontline because the leadership on this is not well developed in the NHS. How important are these issues on the leadership landscape?"
Taking a lead on the language used at work could help, suggested another: "You could say 'Change my title to head of equality, diversity and human rights' for example."
And accountability is the other part of the puzzle: "When you have 'wriggle room', there is a question of whether you want to apply these values. You need mechanisms to hold leaders and boards accountable."
How to lever human rights into inspection regimes divided opinion. The EHRC is working with the Care Quality Commission, the independent regulator of health and social care in England, to ensure human rights are embedded in regulation standards.
Some around the table voiced concerns about the inherent tensions of adopting a human rights approach to health and social care. Professionals "have to balance helping patients with them refusing help".
Meanwhile, the NHS has to appreciate that if it is aligned to drugs companies linked with human rights infringements then "it will be perceived as part of the problem".
So should there be a duty on public authorities to promote human rights, along similar lines to existing public sector duties to promote equality on race, gender and disability? One participant felt human rights "should be enshrined in some kind of duty".
Others argued that "when things become duties they are not necessarily accountable", that "it is human nature to meet targets and do nothing else" and this route could become nothing more than "a tick-box exercise".
Organisations should develop robust systems to embed human rights: "I think there's a danger of 'human rights lite' – you've got a poster up about dignity so you think you're covered."
Working in silos
Sharing best practice on how to make human rights a reality in health and social care is vital, participants agreed. "NHS organisations are not very good at sharing what they do, they tend to work in silos. More scoping on best practice around human rights is needed," suggested one. The DH and BIHR has been disseminating information about its "human rights in healthcare" pilots; the next event takes place in London on 26 January.
The EHRC's recently published human rights strategy calls for an approach that "is concerned not only with freedom from abuse but equally about the pursuit of expanding people's freedom to flourish".
As one participant commented, once an organisation gets people around a table to discuss human rights "it becomes about prevention rather than cure".
• The roundtable report was commissioned and controlled by the Guardian. Discussion hosted to a brief agreed with the Equality and Human Rights Commission. Funded by EHRC. For information on roundtables