On compassionate care

Dr Joan RapaportDr Joan Rapaport reports on the seventh Annual Joint Conference of the Social Care Workforce Research Unit, Making Research Count, and Age UK London (with support from the British Society of Gerontology), which took place at King’s last week. (2,508 words)

In her welcoming introduction, Professor Jill Manthorpe (Social Care Workforce Research Unit, King’s College London) said the topic ‘Compassionate Care’ had been chosen to explore what we mean by compassion, where it might be needed in older people’s care, its place within the hierarchy of priorities and whether it concerns individuals or wider social relationships. She said the purpose of the conference was to find out:

  • Where is the passion in compassion?
  • Should we all be compassionate all the time?
  • Do all older people want compassion?

The term compassion clearly taxed minds. Whilst dictionaries had been plundered for meanings and Latin derivations, kindness was felt to be an underpinning element. Kath Parson, Chief Executive of Older People’s Advocacy Alliance described compassion as a heartfelt response to suffering with three components:

  • Noticing someone’s pain
  • Feeling their pain and
  • Responding to the pain.

Jo Moriarty (Social Care Workforce Research Unit, King’s College London) highlighted the challenge of delivering compassionate care in times of austerity when services are being cut. Although a cornerstone of government policy, recent health and social care scandals had revealed appalling examples of neglect and abuse. Significantly, the Care Quality Commission has just issued guidance on lay surveillance. However, how can compassionate care be delivered in the current austerity climate?

Jo promoted the Unit’s longitudinal study of care work, which is collecting and analyzing the views and experiences of service users, carers, workers and managers to help our understanding of some of the factors that help or hinder compassionate care. Service users spoke about staff listening, sitting with them and going the extra mile to provide personal comforts. Staff supervision was important. Staff noted that when something went wrong, they considered it was due to a combination of factors—a view that is consistent with evidence in the existing literature. Regulation has been light touch and has sometimes missed the cultural climate of poorly functioning organizations. Perhaps tellingly, staff tended to talk about where they used to work rather than their current employment when describing poor practice. Whistleblowing resulted in penalties for the whistleblower—loss of job and difficulties finding another, fear, isolation and financial hardship—and no change in services. Home care staff often complained of the tight care slots that prevented flexibility to deal with crises when a service user needed urgent extra assistance. An employer noted unrealistic expectations that care work was ‘easy’; on the contrary, it required a lot of skills. However, it was not always easy to detect who, among potential staff, had the right attitudes; ways needed to be devised to strengthen the recruitment process.

Questions from the audience of older people and practitioners raised the importance of staff training and standards to ensure agencies met requirements. However, there were concerns about the focus on physical tasks, perhaps at the expense of compassion and empathy. In addition, bad habits might be perpetuated as it was other staff that often delivered the training. Care workers and services did not always have ready access to information to highlight their concerns and the threat of litigation discouraged agencies from acknowledging mistakes. No liability compensation might help with this latter point. The time slot problem might be eased if care workers were allowed to use their initiative and work more flexibly according to day-to-day fluctuations in an individual’s personal care needs, but this could not be done without affecting other users—unless there were extra resources in the system.

The Older People’s Advocacy Alliance (OPAAL) is an umbrella body that supports membership advocacy services. It works with other national organizations including Macmillan Cancer support. Macmillan approached OPAAL because staff had found inequalities in people’s experiences of cancer care. Kath Parson described OPAAL’s initial task to produce a national framework for older people affected by cancer, to train Macmillan staff to understand the benefits of advocacy and to establish a referral process. The initiative developed into a partnership project and it has recently won a Big Lottery award.

This specialist advocacy project relied on peer advocacy. Older people who had had personal experience of cancer either themselves or as a family carer are being recruited and trained. National and local cancer champions have also been appointed to develop local services’ connections. Selected stories of peer advocacy support have been published. These illustrated the powerful effects of advocacy not only on the person affected by the disease, but also on the advocates. The diagnosis of cancer was described as often mind-blowing. The personal experiences of the advocates often help to establish an immediate rapport. Their knowledge of what was to come is helpful in preparing for meetings, asking the right questions and understanding the emotional impact. The advocate could help with practical problems and their listening skills were clearly appreciated.

Kath reported that the advocates were surprised to discover that there were so many people who were effectively alone, often with families too far away to be called upon. They described their work as challenging, but rewarding. She said that a major stumbling block working with professionals was their view that they should be doing everything for their patients, even though they were unable to do so. OPAAL emphasizes that the advocacy service complements and enhances patient care. The initiative has been so successful that other organizations want to join the project. Kath said they had not expected this response so early in the programme.

Questions highlighted the problems of timely access to advocacy. Kath said they were trying to develop the system further by training GPs, health professionals and commissioners to improve signposting. She explained that the service also supports older people from ethnic minorities and LGBT groups who have cancer diagnoses. One member of the audience appreciated all these developments, but highlighted deficits in advocacy services for older people in general.

Ian Winter CBE, who is working with the London Borough of Barking and Dagenham on Care Act implementation, asked ‘in what ways will the Care Act 2014 improve compassionate care?’ Building on previous adult social care initiatives, the Act strives to ensure a rights-based framework for the individual, empowerment of people through their involvement in service developments, national eligibility criteria for services, care focused on wellbeing and prevention, and stronger quality, choice and sustainability in services. However, he pointed out that most of these aspirations appeared in 1990/1993 and so were not new. As a consequence, some professionals believe the Care Act initiatives are already in place. This attitude presents a formidable barrier to change. The other barrier evident in 1993, but even more so now, is the financial retrenchment in public services, and in spite of increasing numbers of older people, further cuts in resources are planned. Over recent years, the proportion of older people receiving services has steadily reduced because of tightening local authority eligibility criteria. Will national criteria make a difference? Ian doubted this would be the immediate case, given local commissioning control over resources, but considered the right of appeal—to be introduced in 2016—might eventually help to improve the range of locally available services.

Ian said that the barriers to the Care Act’s intentions would not be solved by yet more reorganization. In his view the answer lay in freeing planners, commissioners and providers of services from central controls. He would like to see better integration, at local level, of commissioning and provider services. However, even this ideal could be compromised if partnerships and joint working meant that staff sat in the same office but did not pool their resources, as symbolized by shared arrangements for their tea and coffee breaks! In his view, the only way the Care Act would deliver is by engaging people who use and experience services to establish what works well and otherwise. In addition, commissioners and planners must be more honest about their budgets. He suggested that it was not so much about how much they have, but how it is spent: bad care costs money.

Questions were raised about asset stripping of NHS resources and commercial gains, professional but also older people’s apathy about the Care Act and continuing dangers of uneven distribution of services. Ian shared concerns about the downgrading of social work and the fact that advocacy, once a core element, had been removed from the role.

Dr Caroline Nicholson (National Nursing Research Unit, King’s College London) described how she had become drawn to studying older people living with frailty who were often outside many services because they had no specific diagnosis. Unbelievably, she thought, the category of ‘older people’ spanned the ages of 65 to 112, well over 40 years in all, yet older people were a very diverse group. Older people needed to be treated as individuals and care delivered sensitively and discreetly. They might need very intimate care requiring very careful management. However, it is this care that is often given by the least qualified staff with the least inner resources.

Caroline introduced the concept of ‘relational attunement’ with someone, which also stood for ‘being for’ them. This requires a flexible approach in negotiating partnerships and the skills and resources to work with an older person’s changing capabilities and losses over time. However, members of staff are under pressure to be task orientated and to do things quickly. Helping an older person to achieve a goal with support and sensitivity often takes considerable time. However, the organization may never see the efforts of staff who go the extra mile to help a person on their terms. Recognition of effort is a vital component of staff wellbeing that, in turn, is a vital component of patient care.

Caroline commented that compassionate care is based on relationship-based reciprocity and a series of negotiated partnerships between the carer, the cared-for older person and professionals. With the assistance of detailed case studies, she illustrated the phenomenal intellectual capabilities of some people when their bodies were no longer functioning as before. She emphasized the importance of the person’s biography in helping to understand and contextualize their deficits and assets. In her view, the mixed picture of capabilities was often missed by health and social care professionals.

Questions were raised about outmoded interpretations and usage of terms such as ‘next of kin’ that could exclude the person most in touch with an older person’s needs from service provision and support. Caroline also suggested that in relation to the Care Act and other developments, carers might have more power to make changes within an organization than the professionals.

Professor Anthea Tinker (Institute of Gerontology, King’s College London) described research undertaken with Visiting Professor Dr Jay Ginn to review policies on the Age Friendliness of London. This work builds on an earlier study sponsored by the World Health Organization, to find out what makes a city age-friendly. The present study examined:

  • Features that influence social inclusion and wellbeing of older people in London
  • Developments since the previous study in 2005, and
  • Gaps that remain to be addressed.

Information and research relating to Age Friendly Cities were reviewed and new data has been collected on developments in London.

Anthea reported that housing was highlighted as an area of great concern with rising overall demand and increasing disability of older people. The population of people aged over 85 is increasing, resulting in a lengthening period of life with disabilities and an emerging picture of ‘shocking’ health inequalities. Many homes in London are of poor quality and detrimental to health. There is a clear need for more diverse housing choices including size, uses and tenures and steps to improve the quality of existing stock. People wanted green spaces, well-maintained environments where they can walk and feel safe. Neighbourhoods could be improved by attention to pavements, handrails and provision of toilets. Streets were often found to be badly designed, poorly maintained and hazardous. There were major barriers to using public transport. Buses and trains need to be more accessible. Pedestrian crossings were often found to be too time-limited.

She noted that older people valued participation in civic developments as this confirmed their self-esteem and confidence. However, access to facilities was often a problem. They valued their local group activities but were concerned that funding might be withdrawn for these projects. Volunteering, local group activities and informal care were found to be cost effective and of benefit to older people. In her view, London boroughs should be encouraged to improve community services. Employing and training older workers was found to be a sound investment. Having a job may be crucial to an older person, as perceived financial security enhances quality of life. Access to information was of key importance. However, digital information should always be supplemented by additional means.

The current research is due to report shortly, but it seems that an overall strategy is required to address age discrimination and inequalities. Anthea said that some of the research recommendations were the responsibility of central government or London boroughs and needed to be addressed appropriately. Their recommendations were being made to the Greater London Authority (GLA) in the hope that relevant information would be filtered through to the appropriate authorities.

Anthea ended her presentation by describing a study in progress that is working with older people in Hackney. The project explores how places can be designed collaboratively to make pedestrian mobility easy, enjoyable and meaningful for older people. Groups of older people are walking round parts of their local areas and making their recommendations for change to designers of services, researchers and architects in training. Older people have shown they value access to nature and light as well as access to others. The data are being analysed through co-design workshops to develop a more age-friendly environment.

Anthea concluded that although some progress has been made since the earlier Age-Friendly City study of London, the austerity programme and cuts have hindered the GLA achieving more. A key message emerging from the present research is the need to involve older people in decisions and work with them to find solutions to problems. Older people are a valuable and often unrecognized resource.

The full research report will be published online on 28 February 2015 and launched at a GLA conference ‘Cities – fit for ageing?’ on 16 March 2015.

In response to a question as to how to make the research recommendations a reality, Anthea acknowledged difficulties but highlighted the existence of ‘impact assessments’ now required by Universities to demonstrate the impact of their research. The role of the press was also raised as a way of influencing policy makers. However, the press often focused on bad news at the expense of the good!

At the start of the conference three questions were asked. Having glanced through the day’s events we hope that readers of this summary (presentations are also available on the web) will assist the Unit by sending us their responses (scwru@kcl.ac.uk) to these questions:

  • Where is the passion in compassion?
  • Should we all be compassionate all the time?
  • Do all older people want compassion?

We welcome your views.

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

The conference on compassionate care (#olderpeople7) took place on 12 February 2015 at King’s College London.

The Social Care Workforce Research Unit is part of the Policy Institute at King’s in the Faculty of Social Science & Public Policy at King’s College London.