Better Care in my Hands: Care Quality Commission’s Report into People’s Involvement in their Care

The Care Quality Commission (CQC) is the independent regulator of health and social care services in England. We make sure that hospitals, care homes, dental and GP surgeries and other care services in England provide people with safe, effective, compassionate and high-quality care, and we encourage them to make improvements.

CQC is publishing a report into the extent and quality of people’s involvement in their health and social care, based on new analysis of CQC’s national reports and inspection findings and on national patient surveys.

People’s right to being involved in their own care is enshrined in law in the fundamental standards of care. It is an essential part of person-centred care and leads to better and often more cost effective outcomes. This is particularly true for those with long term conditions or people who need to use services more intensively. The NHS Five Year Forward View and the Care Act place renewed focus on improving this area of care and CQC can take enforcement action against providers of care services that fail to meet this standard. This report is timely because as health and social care services reconfigure to adapt to the changing needs of their populations there is an opportunity to make sure person centred care becomes a reality for more people. The report identifies what enables people’s involvement in their own care and provides examples of good practice identified by CQC inspectors. CQC will use the findings from this report to strengthen our regulation and reporting of people’s involvement in their care.

Our key findings are:

Recent national patient survey data shows that just over half of those surveyed report feeling definitely involved in decisions about their health care and treatment, and this includes people’s responses for care in hospitals and in the community.

Women who use maternity services are particularly positive about how well they are involved in decisions about their care.We found examples of good practice of people’s involvement in their care in our inspections over the last year. However, there has been little change in people’s perceptions of how well they are involved in their health or social care over the last five years. A significant minority of people have consistently reported only feeling involved in their care to some extent or not at all over this period.

CQC’s national reports and thematic reviews from the last five years consistently show that some groups of people are less involved in their care than others. This is confirmed by new analysis of patient surveys. They are:

– Adults and young people with long term physical and mental health conditions.
– People with a learning disability.
– People over 75 years old.

We have also reported a lack of progress over the last six years in involving people in their care when they are detained under the Mental Health Act. Poor involvement in care is the biggest issue we found in monitoring the use of the Mental Health Act in 2014/15.

There are common problems in health and social care services, which can create a vicious circle of poor involvement particularly for those using different services or using services over a long period of time. These include:

– Failure to assess and monitor people’s capacity to make decisions about their care and to provide advocacy support
– Limited understanding , recording and monitoring of people’s wishes and preferences
– Inadequate family and carer involvement
– Lack of information and explanation of care and support options