Jef Smith discusses the findings of the report from the Care Quality Commission (CQC) published in May — Better Care in My Hands — which reviewed “how people are involved in their care”.

The report drew evidence from the whole range of regulated services, but as it found that the groups who felt least involved included those with long-term conditions, people with learning disabilities and people over 75, it has powerful implications for social care.

Worryingly, various national surveys indicate that there has been little improvement over the last decade in people’s perception of how effectively they are involved in their own care, despite massive official efforts to make “person-centredness” the norm. The report indeed points out at an early stage that “people have a right in law to be involved in their care, as set out in the fundamental standard of ‘person-centred care’, a standard below which care should never fall”. That’s emphatic language; thanks to the Care Act 2014, failing to deliver care which adequately involves the recipient is actually illegal.

The report describes a “vicious circle of poor involvement”, a cumulative process by which people are formally or informally identified as not very capable so that less and less trouble is taken to seek their views and they, in their turn, make increasingly feeble efforts to assert themselves. The virtuous alternative is “an involving culture”, but creating the atmosphere and motivation for such processes to flourish requires strong and positive leadership.

The common problems the report identifies include a failure regularly to assess people’s decision-making capacity, the absence of advocacy, poor recording of people’s wishes and preferences, inadequate family and carer involvement, and insufficient provision of information and explanation. For each of these problems it proposes — actually fairly uncomplicated — solutions.

Making good plans

Central to these is personalised care planning. The idea that good care begins with good care planning is so old that it should hardly need to be rehearsed, but it does. The now abolished National Minimum Standards for Care Homes published 15 years ago, to which I often turn for guidance on good practice, went carefully through the central requirements. They were comprehensive assessment, a detailed setting out of the action required, appropriate attention to relevant clinical guidelines, and regular reviewing. Just taking the last of those, what home now manages the target for reviews of “at least once a month” which the standard set?

It concludes: “The plan is drawn up with the involvement of the service user, recorded in a style accessible to the service user [and] agreed and signed by the service user whenever capable and/or representative (if any).” That mention of representatives takes us on to the CQC’s report’s next proposal, which relates to “the sustained and supported involvement of families and carers”.

Rather alarmingly there is no mention of advocates at this point, and any other references to advocacy in the report come in the limited and specialised context of the Mental Health Act and the Deprivation of Liberty Safeguards. I fear that this is because, given the cuts in services which have taken place over recent years, real advocacy is scarcely available in many areas. Patients legally detained or defined as lacking capacity under mental health legislation are extreme examples of powerlessness, but there are many other service users, not least the large numbers of people with advanced dementia in homes, whose interests need equal attention.

Families and carers often step into this breach, bringing to the role of representing their loved one’s interests all the devotion, knowledge and commitment which comes from long acquaintanceship and a depth of relationship. Relatives, however, sometimes have agendas of their own, not always actively malicious or acquisitive, but more subtly distorting of the real interests of service users for whom they claim to speak. Care workers often hear family members, even apparently sincere sons and daughters, expressing clearly false views about what they supposed loved one would or would not want done for their comfort, but feel unable to challenge such misreadings. Independent advocacy, where it exists, has different and more professional standards for calculating and pressing for what an otherwise inarticulate service user really desires.

The report acknowledges that the evidence of user involvement is scantier in social care than it is for health services, a sadly familiar picture. The only relevant study it quotes is the Personal Social Services Adult Social Care Survey carried out in 2014/15, when barely a third of respondents said they had “as much control as they wanted over their daily life” and nearly a quarter reported having insufficient or no control. Furthermore, there had been very little improvement since a similar survey dating from 2010. Those questioned were drawn from service users financed by local authorities; there is no comparable data for self-funders.

CQC’s own material relating to people with dementia in care homes is equally concerning. A 2014 thematic inspection found that 33% of homes for people with dementia were not involving either service users or their families in their care. The fact that the comparable figure for hospitals inspected at the same time was 61% provides no comfort at all, and this is one element of what appears to be a wider age bias throughout the sector. A 2014 hospital inpatient survey found that feelings of involvement in treatment rose steadily with age groups, reaching a peak at 62% of people in their mid-70s, but then dropped sharply, to 56% for those aged 75–84 and 47% for those over 85.

Empowerment

Are things getting better on the empowerment front? CQC promised to return to this issue in its study of integration across health and social care which was published in June, but the news which emerged then was by no means encouraging. According to GP patient surveys, for example, the percentage of people saying that they contributed to their care plan actually fell slightly between 2014 and 2015. Focusing on multiple agency involvement underlines how insidiously disempowerment works: “It was common” the report states, “for older people to have multiple care plans, with the type and detail of information varying across plans”. In some instances, there was actually “conflicting information across the care plans”, which of course makes a mockery of the whole business.

The CQC reports quote many examples of good practice, but such isolated anecdotal evidence, encouraging as it is in itself, is not an effective antidote to the generally alarming picture presented by the hard statistics. The fact is that after decades of rhetoric about the need to empower service users, coming from all and sundry from ministers downwards, what is actually happening on the ground often tells a story of people feeling more and more pushed around. Individual practitioners, including many of those working in residential care, are trying hard, but the system seems still to be working against them. Quite a lot of service users would echo the tragic thought of one woman quoted by CQC, “Feeling so disempowered that I feel like nothing”; many others, still more desperate, dare not even put their feelings into words.

Last reviewed 17 October 2016