Promises To Give People Control Of Their Care Are Being Broken, New Research Finds

New research concludes that, despite two decades of policy promises, NHS services still do not give people adequate control of their own health and care, and there is no reporting of whether people’s care is coordinated across health and social care.

The study, conducted by National Voices, a coalition of over 160 health and care charities, looked at key dimensions of ‘person-centred care’ as reported by patients and service users themselves.

It found that just 3% of people with one or more long term conditions reported having a written plan for their care and support.

Although information and communication with patients has improved over time, large numbers of people are still not as involved in their healthcare decisions as they want to be:

• Just 56% of hospital inpatients said they were definitely as involved as they wanted to be in decisions, and
• only 39% of general practice patients said their GP was ‘very good’ at involving them in decisions.

The report collates patient and service user reported data from 19 England-wide surveys, and focuses on information, communication, involvement in decisions, care planning and care coordination.

Other key findings

• Although ‘integrated care’ has been a key goal of all national and local leaders since 2013, there is no measurement of people’s experiences of whether their care is coordinated. The limited data available shows mainly the failings in transitions out of hospital – 46% of inpatients saying they did not get enough further support to recover or manage their condition after leaving hospital.
• Family involvement in a person’s care is not seen as central; and most carers need better support – less than a quarter of carers (23%) report having had a social care assessment.
• There is emerging data on inequalities in the choice and control patients have over their care – in hospitals, inpatients who had a mental health condition were less likely to report a positive experience than those with only physical conditions. In primary care, 41% of White British patients reported that their GP was very good at involving them, compared to 34% of people of Caribbean origin, and 32% of people of Indian origin.

The research shows a system not matching the principles of the NHS Constitution, which states that:

The patient will be at the heart of everything the NHS does. It should support individuals to promote and manage their own health. NHS services must reflect, and should be coordinated around and tailored to, the needs and preferences of patients, their families and their carers.

On care planning, the NHS Constitution says:

You have the right to be involved in planning and making decisions about your health and care with your care provider or providers, including your end of life care, and to be given information and support to enable you to do this. Where appropriate, this right includes your family and carers. This includes being given the chance to manage your own care and treatment, if appropriate.

The report authors did find positive results in the quality of information given to patients and service users, and of communication with patients and service users.

In the NHS, 87% of general practice patients said their GP was good at listening to them, 76% of hospital inpatients who had an operation or procedure said that what would happen was ‘completely’ explained, and 78% of children and young people felt that staff in hospital listened to them. However, the most recent surveys showed a dip in the domains of listening and communication, possibly implying that pressure on services is beginning to affect the quality of people’s experience.

In adult social care, ‘personalisation’ is much more advanced, with 89% of adult social care users reporting that the care and support they received had helped them to have as much control over their daily life as they wanted.  63% of people using a social care personal budget said that their care and support had improved their ability to make everyday decisions.

However, the lack of reporting on care coordination means there is no way to know whether social care and health care are working well together around people’s needs.

Commenting on the research, Don Redding, Director of Policy at National Voices and lead author of the report, said:

In 2013, the Department of Health and its national bodies jointly committed to achieving ‘person centred coordinated care’. Since then, the Five Year Forward View, the integration pioneers, the new models of care and now the Sustainability and Transformation Partnerships have all aimed to take forward this agenda.

We know that there are local areas really trying to get person centred care in place, but a lot of these initiatives are still new and small scale, and they have yet to make a significant impact on people’s experiences overall.

Although people with chronic conditions and other complexity are now the main users of care, there is little evidence of proactive care planning to help them live their lives and manage their conditions in the best ways they can. And while they will be using multiple services and sources of support, there is no way to understand their experience of whether or not these services work well together for the outcomes people value.

What the research shows up is that the available measures of people’s experience are unable to tell us whether person-centred ambitions are being achieved. How will we know whether we are getting there?

It is time for a strategic overhaul of the measurement of person centred care. This is vital to plug the quality gap and to help go-ahead local systems to succeed.