Press Story

A new survey shows that up to three-quarters of people with long-term conditions could self-manage more of their care at home if they have better info and support, according to a new report from the think tank IPPR, published today. The report shows that over 15 million people in England have one or more long-term condition, with 70% of total health care spend devoted to caring for people with long-term conditions.

IPPR surveyed 2,600 UK users of the health social network HealthUnlocked with an ongoing physical or mental health condition. The survey shows that the majority of people with long-term conditions (77.3%) would like try to manage more ongoing help problems at home using their expertise in their own conditions and that over half (57%) say a named contact for telephone support and advice would reduce the number of times they saw their GP, went to hospital or used A&E services.

The survey finds that almost a third of patients with long-term conditions are not satisfied with care. The report finds that more empowered patients feel they receive a higher quality of care and asked a group of engaged patients what would make them feel more empowered:

75% said a named contact to contact directly about as aspect of their care
70% said access to their medical records
61% said peer support from people with similar conditions
56% said a care plan
31% said enabling technology

The report recommends:

A named single point of contact for day-to-day enquiries
Better information and advice: with patients able to legally own their own medical records with free access to them on demand and patients offered advice and coaching about how to self manage.
Peer-to-peer support for everyone diagnosed with a long-term condition
Healthcare plans covering a patient's physical health, mental health and social care needs, developed in partnership between healthcare practitioners and patients using the relative expertise from each.
Personal health budgets should be integrated with social care and rolled out further - prioritising people who already have personal budgets for social care, and those with high levels of health needs.

Catherine McDonald, IPPR Health Fellow, said:

"People with long-term conditions want more control and to be recognised as experts in their own condition. To put patients in control they must have access to the relevant information and support: such as a named contact, better data and support from others with a similar condition.

"The impact of long-term conditions on people's lives varies considerably. People with long-term conditions are the experts on the nature of their conditions and the impact on their lives. We need to move to a model where this expertise is recognised and used to inform decisions about care management.

"Empowering patients is proven to improve people's health and the quality of services they receive. But while there continues to be a lot of good intentions surrounding empowerment, it is not embedded across the system – so we must look to change this and our collective expectations.

"People with long-term conditions currently only see a medical professional for around 3

hours a year, so it is essential that people are given the support, information, tools and knowledge they need to help care for themselves."

Notes to Editors

IPPR's new report – Patients in control: Why people with long-term conditions must be empowered – will be available from Thursday 18th September at: http://www.ippr.org/publications/patients-in-control-why-people-with-long-term-conditions-must-be-empowered

The House of Commons Heath Committee states that by 2016 the cost pressures on the NHS with reach an additional £4bn per year if nothing is done to improve the rate of prevention of long-term conditions

Survey

We asked HealthUnlocked, Europe's largest social network for health, to survey its users for us.

Over two million people visit HealthUnlocked every month, coming to learn from the health experiences of others. Its communities of patients are moderated by almost 500 third-sector patient organisations, providing quality assurance and moderation of the shared experiences and stories. It is a free online platform, based in the UK (and embedded in NHS Choices) but also used in Spanish and Portuguese, with partnership organisations in over 20 countries, and visitors from almost every nation.

In launching the survey across a population of people who use a health social network website there is a conscious effort to understand the landscape from the perspective people who may already be actively seeking out information and support relating to their conditions and healthcare and are, by definition, digitally engaged. Implicitly it does not account for the significant minority of digitally excluded for whom access or use of the internet has not yet become a part of any component of their life, let alone their health.

The opportunity is to test existing attitudes and experiences alongside a set of new ideas aimed at benefitting patients by putting them more 'in control', that is in a more central and independent role in their care. This might be achieved by resourcing better self-management at home, allowing a more participative and connected relationship with clinicians, or fostering a more pro-active role in service design and delivery. These concepts are tested in the survey.

The results reported here come from a survey in March 2014 of 2,623 adults living in the UK with one or more ongoing mental or physical health condition, and using the HealthUnlocked online social network for health. 55,740 people received the invitation to participate through a message sent through their HealthUnlocked user profile.

Contacts

Richard Darlington, 07525 481 602, r.darlington@ippr.org

Sofie Jenkinson, 07981 023 031, s.jenkinson@ippr.org