Patients in control: Why people with long-term conditions must be empowered

The idea of giving more power to patients – in terms of self-managing their conditions and having more of a say over their services – is not a new idea in health policy. In this report we gauge, at scale, what people with long-term conditions actually think, and what kind of control and support they want. We present the results of a new survey of over 2,500 people with long-term conditions, which asked them about their attitudes towards and experience of managing their conditions.

Fifteen million people in England have one or more long-term health conditions, and the number of people with multiple conditions is rising. These people typically have contact with healthcare professionals for a relatively tiny amount of time – around three hours per year. This means that patients and their carers are, by default, taking the lead in managing their care for 99.95 per cent of the time. If people are not given more control and supported to become experts at self-managing their conditions, they risk feeling abandoned and – if they are unable to self-manage – may be at an increased risk of health crises, which can require emergency health services.

We found that:

• Almost two-thirds of respondents (63 per cent) were satisfied with the day-to-day management of their conditions.
• Over three-quarters of respondents (77 per cent) told us that more of their healthcare could and should be managed independently at home – but they said that a lack of support and information was holding them back from doing so.
• When asked which from a list of options would be most useful in managing day-to-day care, a named contact-person to handle queries about any aspect of their care was by far the most popular response (75 per cent). 57 per cent thought that having a named contact for telephone support and advice would reduce the number of times they saw their GP, went to hospital or used accident and emergency (A&E) services.
• The majority of respondents (70 per cent) also wanted better access to their medical records, and significant numbers said that coaching and support would be useful (61 and 58 per cent respectively).

In response to these findings, we make six major recommendations, in the following areas:

• named contact-people
• ownership of medical records
• better information and advice
• peer support
• healthcare plans
• personal health budgets