For at least 20 years, policy-makers have been aspiring to deliver ‘person-centred’ care. There have been revised definitions of quality, national commitments, and phrases like ‘people at the heart’ and ‘empowered communities’ have become ubiquitous.
What difference, if any, have policy-makers’ stated ambitions made to the experiences of people who need and use services? We wanted to know.
National Voices’ report, Person-centred care in 2017 is the first attempt to judge personalisation and choice across health and social care, based on the reports of service users, patients and carers. Since 2011, National Voices has been at the forefront of making the case for person-centred care. There is a growing body of evidence that person-centred approaches are important for ensuring the overall quality of care and for improving outcomes.
Person-centred care means different things to different people, but the common ingredients are good information, good communication, involvement in decisions, care coordination and care planning.
In adult social care, partly in response to the advocacy of service users, ‘personalisation’ has developed over the last two decades to be recognised as formal mainstream practice. This was reflected in our findings. 89% of adult social care service users said their care and support helped give them control over everyday life. 63% of personal budget holders said they could make better everyday decisions.
In the NHS, too, there were some encouraging findings. Over 70% of general practice patients and hospital inpatients said that information was good, staff listen, and they received good explanations of tests, treatments and procedures.
In adult social care, just over 90% of those using community adult social care said they were involved in decision-making about their care and support needs. 35% said they were always involved as much as they wanted in arranging their care and support.
However, our study did not show a completely positive picture. A key deficit area is personalised care planning. We found that personalised care and support planning doesn’t really happen in the NHS, with only 3% of GP patients reporting having a written care plan. In social care, where the Care Act 2014 enshrines care planning in law, there are still no national survey data available to assess whether it is happening.
The Care Quality Commission did look into personalised care planning as part of a review of the care of older people. It found that in some services, including some residential settings, there are significant barriers to personalised care planning. It found that care plans are: commonly seen as actions for health and social care professionals to take; are not always focused on setting out how services and support can help ensure people’s goals and preferences are achieved; and may not include information about how people were involved in developing or reviewing their own plans.
I don’t want to be completely ‘doom and gloom’ about care planning, there is some good work going on. Initiatives like the Social Care Institute for Excellence’s project on personalisation in care homes – which extends personalisation beyond budget holding – and the encouraging results shown by care homes taking part in NHS England’s ‘vanguards’ scheme, are making important progress.
As part of our research, we looked at secondary analysis of patient and service-user surveys and found some evidence of inequalities. There are lower scores for person-centred care amongst people who are over 75, from a BAME background, LGBT, or have mental as well as physical health conditions. This data is not routinely assessed and can be hard to explore. Adult social care should think about how it could provide good national data on such inequalities.
We also studied data from carers, recognising that most care is actually provided by them. The latest surveys show that a majority still report poor experiences, with only 23% getting a social care assessment (as is their right), and 69% saying their GP has not acted to support them.
Overall, our study showed a mixed picture. There are positive signs that people are getting good information, communication is improving, and involvement in decisions is getting better, especially in social care. But there are still poor levels of personalised care and support planning, and little evidence of care co-ordination. It’s worth noting the difficulty we had in conducting this research. What matters to the system is what it chooses to measure, and person-centred care is not adequately measured.
Yes, there have been advances towards more person-centred services, but for now, the policy rhetoric is not quite matching the reality experienced by people.