Category Archives: personalisation

To deliver good, safe, sustainable care, leaders need to think beyond traditional boundaries ……

Our care system is at breaking point. People are struggling to find a good care home when they desperately need it. With demand for beds set to rise, the time for action is now. Help us convince the regulator to confront the care crisis before it’s too late.’ (Which?)

CQC have confirmed in their State of Social Care report the problems many requiring social care already know, the system needs reform.

As Which?  and CQC yet again bring to government and wider societies attention to the problems and poor levels of care some older people experience, one wonders will we ever get to grips with this issue? The transformation of ‘care’ into a commodity that can be bought by families and those who use services, like any other product, dominates current health and social care reform, however, discussion on what ethical principles underpin the delivery of such care has not emerged. This raises the question for me, is it wise to continue to build a system of care provision with no clear ethical foundation outside of that of the free market? Arguably, we need greater ambition in developing great care for older people and a more strategic approach to make real improvements. But how?

Developing ethically sustainable care for older people

Drawing on the ecology movement sustainable development is defined as “development that meets the needs of current generations without compromising the ability of future generations to meet their needs”. This captures two relevant issues; the need to support those older people currently requiring care, without compromising the future of the care system.

Need, capabilities and the ‘good life’

A first step in developing ethically sustainable care involves reframing our understanding of ‘need’. Need in a health and social care context is often used to refer to a function to be fulfilled, i.e. nutrition, physical care. Such needs are viewed as a necessary condition for survival. However, we should also view older peoples’ needs in terms of security, respect, love and justice.

The failure to distinguish between different types of need has led to limiting our understanding of how to care for older people, and has subsequently influenced how service provision has developed. Amartya Sens’ concept of ‘capabilities’ provides an alternative approach Sen is concerned in this model with identifying what individuals require to flourish and live a ‘good life’. In this model it is recognised older people require different capabilities to flourish, depending on their personal circumstances and the community they live in, whether that community is within an in-patient/residential setting or in the wider community. Successive governments’ appear to believe an expansion in a consumer culture within health and social care provision is the only route to a ‘good life’ for older people, as it enables individuals to increase choice and control by becoming consumers of care, rather than receivers of care.

Yet many older people are clearly not flourishing in a culture that defines the good life in terms of their ability to engage as a ‘customer of care’. A more useful way of thinking about this, from an ethical perspective, links Sen’s idea of capabilities and Aristotle’s vision of the ‘good life’. From this perspective achieving quality of life is central, rather than just meeting physical needs. In other words it is not just about achieving an ‘average’ notion of well-being but about the opportunities available to the individual which will enable them to develop their full potential, whatever that might mean for that individual.

This approach moves beyond ensuring older people have the ability to flourish to consider whether they are actually flourishing. Commentators suggest there are five areas in which older people need to flourish to live a good life, regardless of where they live. These are: belonging to a family; belonging to a community; having access to material goods for sustenance, adornment and play; living in a healthy environment; and having a spiritual dimension to life. Arguably the commissioning and delivery of service provision based on achieving these five areas might enable older people to receive care that is both compassionate and dignified.

The way forward

Conceptions of what constitutes a good life are varied, however, within health and social care provision it is prudent to assume a good life involves at a minimum care provision that is not abusive to older people.

Within the public sector the organisation and delivery of care is structured to focus on the meeting of targets rather than enabling an individual to flourish. The health and social care sector is arguably over managed and under led. In the private sector it could be argued a free market economy contains structural incentives for business to pursue a notion of the good life that supports the sale of a narrow range of care ‘products’, whilst there are not mechanisms in place to ensure the market operates within a clear ethical framework outside of the profit ethos.

By not actively endorsing care provision from an ethical stand point the government and regulatory bodies may actually be unwittingly aiding the abuse of the most vulnerable within the care system. A shift in focus from human need to human flourishing has already begun with the development of the personalisation agenda and emphasis on voice, choice and control however, this agenda has been overshadowed by a managerial approach to consumerism and consumption in a low paid, low status care system and this is undermining the ability of the care system to develop ethically.

Markets versus Values

Michael Sandel argues markets are not a mere mechanism designed to deliver goods, they also embody certain values, and the problem is these values ‘crowd’ out non market values like compassion and dignified care. Where values and ethics are weak we need a strong and active state to intervene, where both are weak those most vulnerable in society will continue to be exploited and abused. This begs the question can we afford not to have an ethical care system?

 

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The ‘McDonaldlisation’ approach to reform in health and social care is as unhealthy as a triple whatever with cheese and fries….

A couple of years ago a social work student suggested government policy wanted to make us all ‘beige’. I know what she means.

Of course commentators might suggest we are seeing a radical shift in emphasis across health and social care under the coalition resulting in an ideologically driven reshaping in our understanding of legitimate nature, and limits, of the state in individuals lives. However, how radical is an agenda premised on ‘consumerism’ and ‘consumer choice’? Policy designed to create a society of depoliticised consumers is hardly going to address the very real issues around equality and social justice that exist in Britain today.

In ‘Cameron & Co dream world’ delegating care provision to corporate providers is really about delegating power to places where there is limited protection for consumers, ‘choice’ takes precedence over ‘voice’. The McDonaldlisation of care is really a watered down version of consumer choice, and some believe by engaging with it you are living the neoliberal dream.

I have nothing against beige, or McDonalds, really, but a bit of colour and a change of diet would not go amiss in the current debates around the future of health and social care, and social work is well placed to provide the colour needed to create greater vibrancy in how we meet future challenges.

As government concerns itself with winning the next election we need to keep the debate going, we need tasty morsels to stimulate a much better quality of debate and deeper thinking about how to address current, and future, issues.

‘Over 50’s more scared of dementia than cancer’: I’m more terrified of the ‘harrowing neglect’ in our care system ……

As The Telegraph report people over 50 are more scared of dementia than cancer, I have to say I am terrified of any condition which might mean I need to rely on our care system when I get older.

As someone over 50, and who is currently spending every weekend at the hospital bedside and my mother in law because I’m so scared that without family around she will be seen as nothing more than ‘care home fodder’, the thought of requiring care, either in hospital or outside of hospital, once you hit the post 80 mark is a terrifying prospect to me.

There has been too many high profile inquiries to suggest these are anomalies in the care system, for example, following the inquest into care at Orchard View the Serous Case Review into the deaths of 5 older people has been published. The coroner has heavily criticised the quality of care at the Southern Cross home, and expressed incredulity that many staff were still working in the care industry, stating that “there could be another Orchid View operating somewhere else”.

The Daily Mail reports

‘Britain’s worst care home’: Damning report into ‘harrowing neglect’ at £3,000-a-month home aims to stop ‘institutionalised abuse’ of the elderly: Serious Case Review has made 34 recommendations after examining failings at Orchid View care home in Copthorne, West SussexRead more: http://www.dailymail.co.uk/health/article-2652709/Orchid-View-care-home-receive-damning-report-published-today.html#ixzz34ELlbfW6
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I’m afraid the type of ‘care’ received by those at Orchard View is not confined to Orchard View.

In 2010 the Royal Medical Colleges concluded inadequate hospital care for older people condemned many to death. In 2011 The Health Service Ombudsman suggested the NHS was inflicting pain and suffering on older people, and was indifferent to older people. In 2012 Bingham suggested the treatment of older people in care is now so bad in many cases it meets the definition of ‘torture’.

Just for clarity Amnesty International has outlined the techniques used in ‘torture’, these include isolation, enforced trivial demands, degradation, threats, displays of power (i.e. controlling food and hydration, physical assault).

For some older people in care today, whether in the public or private sector, that is their care, torture.

No wonder from a European perspective research suggests older people’s experience of ageing in the UK falls behind that of many of it’s European counterparts (WRVS,2012).

Older people’s experience of ageing in the UK can be improved, and it is all of our responsibility to try to achieve this. However, we first need a coherent strategy to bring about the change desired by many who work with older people. Government in the UK tend to address issues associated with an ageing population in individual ‘silos’. Research from Europe suggests those countries taking a joined up approach where government consider how factors such as income, health, age discrimination and inclusion interact , the more successful policy approaches are likely to be to improve the experience of ageing. However, any policy needs first to have a strong ethical foundation founded on a clear understanding of, and agreement to, promoting older people’s equality and human rights.

There is clear evidence in the UK that poor levels of care, in both the private and public sector, is far to prevalent in our care system. Whilst the focus currently is on the leaders and professionals charged with developing and delivering care, wider society too has a role in ensuring compassion in care is the ‘norm’ and not the exception, as The Independent suggests

‘For a while we may pause to express outrage. But we then move on to the urgent business of our daily lives. Spot checks and hit squads may arrest the worst practice…but they will not do much about a society that has hardened its heart against the elderly’

Whilst many older people receive good quality care, the majority provided by friends and family, far too big a proportion of those requiring higher levels of care are failed by care providers in our system. It is not good enough to keep using the same old rhetoric, better training (what type and where from?), minimum standards (we have these), ‘big society’ need to take more responsibility. We have heard all of this before, and still the abuse continues.

Both my mother (82yrs) and mother-in-law (86yrs) have made clear to me this weekend they do not want to end up in residential care, the very thought fills them with horror. They remind me of the older people I worked with two decades ago who used to equate a stay in hospital with the workhouse and its associated horrors.

It struck me, it must feel terrifying being an older person requiring care today.

The abuse of older people is an age old problem globally…..

As the BBC expose the abuse of older people with undercover filming on Panorama (9pm,30/04/2014), I wonder will we ever care about older people?

For many staying out of harm’s way is a matter of locking doors and windows and avoiding dangerous places, people and situations; however for some older people it is not quite so easy. The threat of abuse is behind those doors, well hidden from public view and for those living in the midst of such abuse violence permeates many aspects of their lives, most frequently perpetrated against them by those charged with providing their care. Regardless of where the care is provided, or who is delivering it, many older people today are at significant risk of harm.

At the heart of the problem lie the individual, personal and institutional attitudes of those charged with providing care for older people, which fails to treat older people compassionately. Our culture of indifference toward older people does a great deal of harm, not just to them, but to us as a society. I rememeber a quote from an article published  three years ago following  a report from the Health Service Ombudsman, that highlighted the abyssmal care older people received in hospital settings, the headline was ‘A society lacking in humanity’,  It’s still pertinent today.

“(F)or a while we may pause to express outrage. But we then move on to the urgent business of our daily lives. Spot checks and hit squads may arrest the worst practice… But they will not do much about a society that has hardened its heart against the elderly.” (Independent.co.uk, 16.02.11)

The question is what will soften those hardened hearts?

Government is reluctant to intervene and introduce a stronger legislative framework, Instead, it is seeking to extend responsibility for protecting older people from abuse to “Big Society” , stating ‘people and communities have a part to play in preventing, recognizing and reporting neglect and abuse. It is everyone’s responsibility to be vigilant whilst Government provides direction and leadership, ensuring the law is clear but not over intrusive’ (DoH, 2010, p.25).

However, is ‘Big Society’ able, and willing, to make the care and protection of older people its business, has it ever?

Historically older people, and old age, have often been viewed negatively, and this has arguably contributed to wider societies apparent indifference.  Cicero’s work De Senectute, written in 44 BC, points to the variety in individual experiences of ageing, acknowledging that for those who are poor and without mental capacity ageing is miserable, however, suggesting older people need to strive throughout their life to remain intellectually and physically able. A couple thousand years later not much seems to have changed, as research suggests those most vulnerable to abuse are the poor, women, and those over the age of 85 years with dementia.

The abuse of older people is clearly not a new phenomenon, it’s an age old problem, one not just confined to the UK.

Recognition of the abuse and maltreatment of older people throughout the world is not new. Research developed in the 1980’s in Australia, Canada, China, Hong Kong, Norway, Sweden and the USA confirmed this was an international phenomena. The following decade saw developments in Argentina, Brazil, Chile, India, Israel, Japan, South Africa, the UK and other European countries. Undercover filming in Italy last year showed the shocking abuse some older people experience in care, it’s distressing to watch, I cannot imagine how distressing it was for those experiencing it.

However, none of this means we can be complacent in the UK.

From a European perspective research suggests older people’s experience of ageing in the UK falls behind that of many of its European counterparts, with the UK performing most poorly on indicators such as income, poverty and age discrimination. The report states “the UK faces multiple challenges in providing older people with a positive experience of ageing, scoring poorly (although not always the worst) across every theme of the matrix” (WRVS, 2012, p.8).

It would be foolish to think the abuse of older people is just about problems with individual carers because we cannot ignore the effects of systematic inequalities in liberal societies that effectively exclude, or compromise the rights of older people. Older people’s experiences of ageing in the UK can be improved, and it is all of our responsibility to try and achieve this. However, we need a coherent strategy to bring about the change desired by many who work to support older people. Government in the UK tend to address issues associated with an ageing population within individual silos. Research from Europe suggests those countries taking a joined up approach, where government consider how factors such as income, health, age discrimination and inclusion interact, the more successful policy approaches are likely to be to improve the experience of ageing.

Addressing the abuse of older people is a complex issue, there is no one answer but a series of answers that if woven coherently together would make a difference.

It must be terrifying being an older person today in need of care and support.

It’s not just about ‘more resources’ in the NHS, it’s about how resources are best allocated….

Stephen Black writes in the Guardian about the negative effects of focusing on a ‘more resources to the frontline’ discourse in the NHS, suggesting this is far to simplistic. I think he has a point and wonder if it is even true, is it not more a case of using existing resources differently within a system of national health and social care?

The provision of dementia care is a case in point. The organisational culture of some providers in our current system leave some people with dementia neglected and without support where surviving the ‘system’ takes precedence over ‘thriving’, and often leads to unnecessary hospital admissions through poor levels of support at home. This is not about lack of resources but the poor allocation of resources.

As a social work practitioner I saw at first hand how good quality home care could reduce admissions to hospital. Good quality care at home can reduce, or even prevent, carer breakdown. It can support good nutrition which is essential to optimise both physical and mental health, for example by reducing UTI’s (urinary track infections) one of the core reasons I found for many avoidable admissions to hospital.

Avoidable and unnecessary admissions are incredibly detrimental to those whose lives are touched by dementia, not to mention extremely costly. Decisions re admissions are not taken lightly, however, GP’s are often faced with the dilemma of admitting someone with dementia to hospital because that is the only option, not the best option. Any savings made on reducing the cost of unnecessary admissions to hospital would, I’m pretty sure, more than cover any cost incurred in reconfiguring care services provided at home.

We know dementia care in the future is going to have to cope with growing numbers, so we need a system that is sustainable. The notion of sustainability in this context could draw on the ecology movement, where sustainability is defined as “development that meets the needs of current generations without compromising the ability of future generations to meet their needs”. This captures two important issues facing dementia care today, the need to support those currently requiring care without compromising the future of the care system to accommodate a growing number of users within budgetary constraints. At first glance the two may appear irreconcilable, however, by building on the drive for personalisation and person-centred dementia care, alongside reshaping organisational ‘cultures’ new concepts and models are able to evolve which can contribute to developing relationship based complete dementia care.

Complete Care: a model in practice – Buurtzorg Nederland

Providing a new form of service provision able to incorporate the principles of relationship based care snd capability, along with notions of ethical practice and sustainability will require a re-organisation of the way in which we currently use resources to deliver care at home. Research from KMPG International (2012) highlights how Buurtzorg Nederland might provide a blue print for such a model.

The founder of Buurtzorg Nederland, Jos de Blok a district nurse, became frustrated with the way traditional services were focused on policy, targets and administration rather than on care and compassion. So he decided to develop his own model where his role as a nurse regained its explicit social value to the community he worked with.

In the Netherlands, the financing and delivery of care in the community is highly fragmented with various tasks – such as washing the patient, serving meals and putting on elastic compressions – paid through different reimbursement schemes and, more often than not, executed by different professionals. As a result, patient care tends to lack coordination, making it difficult for the care providers to respond appropriately to changing patient conditions, which in turn leads to compromised continuity of care and low patient satisfaction.

At the same time, many home care service providers have cut costs by fine-tuning the minimum skill level required to accomplish each task. Dutch home care also tends to be focused on responding to patients’ current problems rather than preventing deterioration, meaning that interventions are generally added on only once the patient’s condition has already worsened.

To respond to these challenges, the home care organization Buurtzorg (meaning neighbourhood care) was created to focus on increasing patient value. Essentially, the program empowers nurses to deliver all the care that patients need. And while this has meant higher costs per hour, the result has been fewer hours in total. Indeed, by changing the model of care, Buurtzorg has accomplished a 50 percent reduction in hours of care, improved quality of care and raised work satisfaction for their employees.

How it led to productivity improvement

One of the keys to the program’s success is that Buurtzorg’s home care nurses organize their work themselves. Moreover, rather than executing fixed tasks and leaving, they use their professional expertise to solve the patient’s problem by making the most of their clients’ existing capabilities, resources and environment to help the patient become more self-sufficient, visits focus on the person not the task. Simply put, even though Buurtzorg professionals’ visits are not time limited the aim is to make themselves superfluous as soon as possible, versus other providers who tend to execute tasks without truly focusing on the patient’s overall capability.

Buurtzorg uses small self-steering teams (with a maximum of 12 nurses) who attend to an area of approximately 15,000 inhabitants and work together to ensure continuity of care. As a result, the professionals build durable relationships with their community, which further strengthens their ability to find local solutions for patients’ problems. Although the teams are independent and self-steering, they are supported by a centralized service organization which provides management information to both the team and the organizations’ leadership in order to minimize local overhead and maximize the professional’s face-to-face time with patients. Every team is responsible for its own clientele and is in close contact with those who use services, their families and doctors. Teams are also responsible for their own financial results.

Key results

In just two years, more than 2,000 nurses have joined the program despite the increasingly tight labour market for nurses in the Netherlands. Indeed, by 2011 Buurtzorg employed 4,000 nurses and nurse assistants working in over 380 autonomous teams.

Preliminary results show that Buurtzorg‘s patients consume just 40 percent of the care that they are entitled to and half of the patients receive care for less than three months. As a result, patient satisfaction scores are 30 percent above the national average and the number of costly episodes requiring unplanned interventions has dropped.

I spoke with Jos de Blok last week, in the years since it’s inception he is as enthusiastic as ever and rightly proud of the difference his teams are making to the lives of those who require support in the community, as well as the professionals delivering care. Surely these would be good outcomes for us all?

I’m no advocate of privatisation, however, I do believe models such as this could be utilised within a National Health and Social Care Service, which is publicly funded to provide sustainability for the future.

#Dementia care at home requires radical change, and we need to start with valuing those who provide care……..

It is estimated dementia effects’ 44 million people worldwide. Leaders from the G8 nations gathered in London in December 2013 to discuss the growing impact of the condition globally and to develop an international strategy to address dementia and its effects on individuals’ lives.

The summit set an ambitious target to identify a cure, or a significant disease modifying therapy, for dementia by 2025, agreeing to increase spending in the areas of dementia research and clinical trials globally to achieve this ambition. The world is working toward safeguarding all our futures in its commitment to tackle dementia, however, we also need to focus on the provision of services for those whose lives are currently touched by dementia, as well as creating new ways of developing and delivering support services to the next generation of dementia sufferers. There are around 800,000 people with dementia in the UK, and the disease costs the economy £23 billion a year. By 2040, the number of people affected is expected to double – and the costs are likely to treble.

Therefore, there are significant numbers of people who may require some level of care and support before the G8‘s ambitions are realised. Many of those who require such support would prefer to live in their own homes.

However, the quality of support in the home for some whose lives are touched by dementia is variable, sometimes abusive and of poor quality leading to breakdowns in care and avoidable admissions to hospital or residential placements which prove incredibly disruptive, and sometimes damaging, to individuals, their carers’ and families, as well as wasteful in terms of resource allocation.

The Care Quality Commission (CQC) first expressed their concerns regarding unacceptable standards of care provision in individuals own homes in their State of Care report published in 2012. Whilst CQC was able to report on significant improvements within provision in a subsequent report on home care provision in 2013, ‘Not just a number’, it found some care still fell below the standards those who use services have a right to expect, especially for those individuals with complex needs and dementia. CQC (2013) has identified issues related to a lack of skills and knowledge by staff, particularly around dementia and ‘concerns relating to safeguarding people who use services from abuse’ (p.5).

For example an overview of the returns from 15 local authorities in the South West on the Abuse of Vulnerable Adults (AVA, 2012) suggest that anything between 3.1% and 29.4% of all referrals are for people with dementia. However, the accuracy of these figures is called into question with a suggestion the wide disparity could indicate discrepancies in the recording of data, i.e. the person is identified as having mental health needs but the sub set of “dementia” has not been used. Figures from AVA also suggest anything between 26% – 51% of abuse occurs in an individuals’ own home where primary perpetrators of abuse can be social care staff, ranging from 0.5% – 54.3% and/or partners or family members who represent 8.9% – 44.1% of perpetrators. Whilst the large discrepancies’ in some of these figures can be attributed to methods of recording other research findings do consistently highlight the same groups of individuals as primary perpetrators.

Research undertaken by Cooper et al (2009) indicated that around half of the family carers’ for those with dementia involved in the study reported having been abusive in some way within the last three months. Reasons for such abuse can be complicated, sometimes it is unintentional and actions may be the result of carer stress and isolation or carers own physical and mental vulnerability, whilst, harm can sometimes be intentional. Whatever the cause the effect on the individual with dementia will result in poor outcomes. The consequences of poor, and abusive, care at home for those whose lives are touched by dementia is not only emotionally detrimental but can also be detrimental to their overall physical and mental health, as well as wasteful in terms of the allocation of scarce resources.

Research into care at home suggests many patients with dementia who are dependent on informal carers’ and family are often the group who end up with inappropriate hospital admissions resulting in costly care (Healthcare at Home, 2011). This research focused on developing understanding of out of hospital dementia care by considering what works and what does not work. It found good professional support services for those living at home were the preferred option by both users and providers of services, identifying four key areas of focus in the organisation and delivery of dementia care at home

1) Workforce organisation, configuration and support
2) Continuity of access and expertise
3) Hospital/residential home admission prevention initiatives
4) Socialisation and support in day to day life (Healthcare at Home, 2011)

These findings are consistent with the national overview of home care provision undertaken by the Care Quality Commission (2013) which identified concerns related to the lack of continuity of care workers, task focused care rather than person centred, how providers supported their staff to work with individuals with dementia, organisational practices in terms of Rota’s and time management, the monitoring of quality and the provision of adequate information to enable carers’ to recognise individuals and families preferences and choices to support them in living life the way they want.

Research by KPMG International (2012) suggests care processes have become imprisoned in the wrong physical infrastructure where health and social care systems swamp existing provision designed for the last century which are not fit to meet the demographic care challenges of the 21st century. Whilst we currently have a strategy to change the structure of service provision via self-directed support, personal budgets and personalisation it is unclear how successful these are. Research from Slasberg et al (2013) suggests self-directed support is failing to deliver either personal budgets or personalisation stating ‘However, it is even more serious than that as it is becoming increasingly evident that it is causing significant damage. This is not only in terms of wasted resources through the growth in bureaucracy that has no value, but also in terms of driving further wedges between practitioners and services users’ (p.103).

The importance of the relationship between those who use services and professional staff is evident in KPMG International’s research. They suggest employee costs are often an easy target for cuts when budgets are tight, however, evidence suggest such an unsophisticated approach to cost cutting actually increases costs in the longer term (KPMG International, 2012) as remaining staff become demoralised as they recognise the care they are providing is actually below standard.

This is highlighted in CQC’s national overview of home care services when they identify care provision has fallen below standard stating ‘What is concerning is that our findings come as no surprise to people, their families and carers’, care workers and providers themselves…’ (2013, p.2). Of equal concern is how do those professionals who may feel disempowered by the current system work with service users and patients to support their empowerment?

There is discontent within dementia services from both those who receive services and those who deliver services, and clear evidence of a link between the well-being of staff and organisational performance (Boorman, 2009).

The simple fact is standards of care are raised when carers, whether formal or informal, feel valued, cared for and supported.

‘Hundreds of thousands’ in need of care denied human rights protection

In a Report published on the 27th Jan 2014, the Joint Committee on Human Rights says that the Care Bill must ensure that all providers of publicly arranged or paid-for social care services are bound by the Human Rights Act.

Dr Hywel Francis MP, the Chair of the Committee, said:

“Whilst acknowledging the measures in the Care Bill which will enhance human rights, my Committee regrets the Government’s reluctance to fill a significant gap in human rights protection for a particularly vulnerable group. The Human Rights Act currently does not protect hundreds of thousands of people who are receiving care which has been publicly arranged or paid for, including care provided in people’s own home and in some cases in residential care homes. The Care Bill which is currently before Parliament should be amended to ensure that this gap in protection is urgently filled.

However, the government has won a vote to block an extention of the Human Rights Act 1998 to people who pay for their own care or use independent home care agencies. Norman Lamb argues people can challenge their provider through their contract. Therefore inequality to protection under the Act will persist.

The Human Rights Act (HRA) 1998 makes it unlawful for public authorities to act in breach of the fundamental rights and freedoms set out in the European Convention on Human Rights. Problems have arisen as original definitions of what constituted a ‘public authority’ were too narrow and excluded private and voluntary sector providers leaving many individuals outside of the protection offered by the Act. This loophole has been partially addressed in the Health and Social Care Act (2008). Section 145 of the act provides that individuals placed in an independent care/nursing home by a local authority are covered by the Human Rights Act 1998. To be covered the service user much be placed in residential accommodation under Part III of the National Assistance Act 1948. However, section 145 does not confer human rights obligations on other independent care providers contacted by the local authority, therefore, independent domiciliary care agencies will continue to fall outside of the Human Rights Act 1998. This amendment did not address the issue of individuals who receive publicly arranged social care in their own home, for example, by personal assistants employed under direct payments or as part of an individual budget. Therefore working in a manner consistent with human rights in an individual’s home is left to the discretion of the provider. The Care Bill provided an opportunity to rectify this.

The need for change was well made by the British Institute of Human Rights in 2008 when it suggested individuals receiving care services in their own homes are vulnerable to abuse. The BIHR argue that ‘those who remain outside of the HRA have no direct legal remedy under the Act against those providing care. Consequently, they are unable to directly challenge these shocking abuses as violations of their human rights’ (p3). The potential impact on the quality of care provided by these individuals is made explicit when the BIHR states ‘of equal importance is the fact that these providers are not given any encouragement to develop a culture of respect for the human rights of their vulnerable service users’ (2008, p.3).

Whilst it would be easy to dismiss such concerns as old news, more recent findings suggest little has changed for some. The Care Quality Commission (CQC) first expressed their concerns regarding unacceptable standards of care provision in individuals own homes in their State of Care report published in 2012. Whilst CQC was able to report on significant improvements within provision in a subsequent report on home care provision in 2013, ‘Not just a number’, it found some care still fell below the standards those who use services have a right to expect, especially for those individuals with complex needs and dementia.

We currently have a two tier system of care provision where some users of services are entitled to have their human rights protected, as conferred under the Human Rights Act 1998, whilst others are excluded in the name of the free market.

Surely recent experiences tells us the protection of those most vulnerable cannot be left to the free will of the market?

How to develop a whole systems approach to Dementia care…

Richard Ashcroft makes some pertinent comments following the G8 dementia summit last week when David Cameron and Jeremy Hunt’s use of language took a ‘President Bush’ turn. We are now going to win the war on dementia by “fighting back” to combat the dementia “explosion” and subsequent dementia “time bomb” awaiting us. All well and good, however, talk of improving dementia services by politicians is a lot cheaper than bringing about real change, real change requires investment and a comprehensive strategy.

Some commentators are looking to France for inspiration. The French launched their dementia strategy in 2008 and are already beginning to reap rewards. One reason for this is a commitment to fund research, 200 million euros worth. Compare this to the UK, £26.6 million in 2010 (one eighth of that spent on cancer) and we can see we have a lot of catching up to do. However, it’s not that the UK is not spending on dementia. Estimates suggest dementia costs the UK £23 billion per year. Possibly the problem lies in how we spend the money. If we cast our eyes toward another European counterpart, the Netherlands, we can see how re-structuring care provision differently can work. ‘Complete Care’ provides a model we might like to consider, where district nurses work in teams in specific localities in providing care. There is no such thing as a 15 minute ‘task centred’ visit, instead carers can spend up to 2 hours on a visit, beginning with making a cup of tea and a having chat. This model has been highly successful in delivering person centred dementia care in the community which is high on quality yet costs less than our current approach.

However, it’s not just about health and social care services. Wider society also has a role to play,
and it is to be welcomed that big business, such as Lloyds’ Bank, is making a commitment to develop ‘a frontline force’ educated to recognise the effects of dementia. The Telegraph reports bank staff are to “look for dementia”, with Sir Win Bischoff suggesting he wants the bank to become “a dementia friendly bank”.

Great, but it is still not enough, we need ‘dementia friendly banking’. The abolition of cheques, closure of local branches, centralised call centres all over the world and the ever increasing need to remember a plethora of pin numbers and passwords is the antithesis to “dementia friendly banking”.

Arguably, the governments’ dementia strategy would also benefit from taking a much broader view on how to improve the lives of those affected by dementia. For example our biggest assets are the networks of support around us. These help reduce social isolation, and subsequently reduce the high levels of depression which often co-exist with a diagnosis of dementia. Family friendly work policies, such as affordable child care, flexible working and a decent wage would do much to support the inter-generational family approach to dementia care that many families are currently struggling to maintain. A dementia friendly housing strategy could make a significant difference, firstly in terms of provision for those with a diagnosis of dementia, and secondly, by enabling families to buy affordable homes in areas where they already have family networks. Instead of having to move away from older relatives, due to lack of job prospects and unaffordable housing costs. Both of these might then allow resources to be directed to those without networks of support. Arguably to “combat” the negative effects of dementia we need to take a whole systems approach.

Government and communities working together is vital to the future of all those touched by dementia. “Fighting” talk is all well and good but will amount to nought without a comprehensive strategy and adequate resources to support it’s delivery.

Improving care for older people is about building a relationship based system of care…..

More headlines confirm what we must all know by now, surely. The care for some older people in the UK today leaves much to be desired.

Old age must now be more feared than death!

Ultimately good care is about the relationship between the carer and cared for, and that involves the development of an emotional attachment that goes beyond our current ‘task’ focused system. Relationships are, in my opinion, the missing link in delivering compassionate care.

Traditionally successive governments have tried to ‘codify’ practice to make it ‘professional’ and ‘commoditized’ care to make it a deliverable ‘product’. Putting such frameworks around practise makes problems in the care system easier to talk about and resolve, i.e we need more training for carers, more training for leaders and managers, different providers, a mixed economy of care etc. However, what we are not talking about is relationship based care focused on supporting the emotional aspects of care provision.

There is no doubt in my mind caring for older people can be difficult,I’ve written before on ‘social defences‘ used in professional practice to help carers protect themselves from the emotional and psychological stress they can experience when caring for vulnerable people. Our organisation and delivery of care services facilitates the maintenance of such social defences by reducing care into individualised elements where a succession of carers carry out particular tasks, and so we lose sight of the person. However, by developing a system designed to keep relationships ‘professional’ we have lost the key ingredient to delivering compassionate care. For those on the front line this must lead to very limited levels of job satisfaction and feeling one has made a difference to someone’s life, which is often the primary reason individuals choose to enter the caring profession.

In the Netherlands they use a model called ‘complete care‘ in the care of older people. This involves developing relationships with people, not carrying out care tasks on a patient.

Such an approach can cost more, in the short-term, but in the longer term the potential of fewer hospital admissions, reduced levels of depression and isolation of older people, along with lower levels of stress and burn out of carers, resulting in sick leave and expensive locum/bank nurse cover, must work out far more cost efficient (but more importantly ethical).

To achieve relationship based care will require a reorganisation of systems and structures currently in place, for example work rotas’, shift patterns etc. The cost of such a reorganisation could be off set by the impending spending by the NHS on privatisation and on commissioning costly training programmes. Yes training is always required but please focus on key people and problems. (The NHS sadly takes the ‘hospital gown’ approach to training – designed for everyone and fits no one!)

If we really want compassionate care we need to focus on building a system built on developing healthy relationships, not targets and tasks.

It is time to give professional carers the support to do the job they thought they were training for.

If the care of older people is a national shame, why is govt not leading a national response?

There has been plenty of coherent and thoughtful responses to Jeremy Hunts comments on how we care for older people in this country, Mr Hunt would do well to read these as he might find them helpful.

The number of older people in residential care is minimal, especially since social care prioritizes supporting individuals to live at home, even if this does mean they might end up lonely, isolated and depressed, at least they are ‘independent’! There should be no one size fits all approach to the care of older people. Each is different, residential care for one might be a living hell but for another relief to unending loneliness. What is important is having a genuine choice and quality care.

However, older people can face even worse, many are maltreated and abused on a routine basis and this really does need to be addressed.

Having spent three and half years researching why the abuse and maltreatment of older people is so prevalent for my doctorate the one thing I have learnt is there are no easy answers. There really is no point in thinking we can return to a golden age where older people were valued and respected by families and wider society, I’m not convinced it ever existed, I’ve written on this before – read more here . Nor have I found this issue to be something specific to British culture. I’ve read research from around the world on the growing problem of “elder abuse” in both the developed and developing world. These have included, but are not limited to, America, Canada, New Zealand, Australia, India, Hong Kong, China (yes, China Mr Hunt),South Korea, Ireland, Sweden, South Africa and in Arab-Israeli communities. The maltreatment of older people is also widespread across Europe, including the UK, even in countries one might not expect, for example Italy where we have a romanticized notion of the stereotypical caring Italian family. The most surprising place for me to read of how older people are maltreated and abused was Tibet.

All the research suggests risk factors which increase the chances of older people being abused include being a female over the age of 85 years, suffering from cognitive impairment, poverty and isolation. In terms of who might perpetrate abuse and maltreatment, and where, it appears it can happen anywhere really, and anyone can be abusive i.e. family, formal and informal carers, strangers, friends.

Having discovered the abuse and maltreatment of older people appears to be a global phenomenon I have turned my attention to the question of what we can do about it. Since starting my research awareness of the issues older people face is now much more understood because of inquiries such as the Francis Review and numerous reports concerning care provision across both the residential and domiciliary sector from both public and private providers. There has also been a change of government, and a change in emphasis as the coalition clearly believe the protection and care of older people is everybody’s responsibility, in effect “Big Society”. Whilst I agree it is all of our responsibility, where I part company with this government is on its role.

Cameron and Co appear to believe an in-active state will stimulate and activate big society to take on more responsibility. However, this presupposes big society has failed in meeting its responsibility toward one another, and that we alone are the authors of our own destiny. I am not convinced it is this simple.

The legitimate role, and limits, of the state in individuals lives is ideological, and whilst this government seems to thinks by ensuring we have a small state big society will become the masters of their own destiny, in todays neo-liberal capitalist world I believe this is overly optimistic. We actually need leadership in Government and an active state to provide the conditions in which big society can thrive.

My research, so far, suggests state intervention could enhance older people’s experience of ageing in the future in 3 key areas. Firstly, the introduction of family friendly policies and work practices. Not unlike Sweden, Norway and Finland where a big state and big society work in partnership to combine a very strong economy with greater work/family life balance, equity and high standards of living for all where inter-generational support is achievable. This would help reduce social isolation and poverty, both of which are important because isolation and poverty increases the chances of poor outcomes for older people. Secondly, ethical, consistent and robust regulation of providers of services to older people. This is not limited to the provision of health and social care but also financial products such as pension/insurance schemes for example. Sadly an under regulated financial sector has led to many older people losing financial security. Again, with the link between poverty and abuse this is of major importance for older people in terms of protective factors in the future.

Lastly, and probably the area I feel most strongly about is a change in the values and ethics which underpin our understanding of care provision. Again, I have written on this frequently, the reconfiguration of care as a commodity, a product to bought and sold, a task to be completed demeans us all in how we view and express care. Care is increasingly viewed as a financial transaction where cost, affordability and profit are emphasised over care and compassion. The language of austerity has only served to harden our collective heart to older people as they are perceived as a financial drain on society. Linked to this final point is the issue of what we ‘want’ to afford as a society, I’m not convinced we cannot afford to fund a high quality system of care, is it more the case we do not want to because deep down we do not think investing in older people is of value?

It must be terrifying to be an older person today, old age is now more feared than death. Caring for older people should not be a task, a chore to be done, caring should simply be our way of being.