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What is health care like for the 15 million people living with long-term conditions in England? And what would need to change for their care to become truly patient-centred?
Today 10 leading patient charities (known collectively as The Richmond Group) are publishing their assessment of the state of health care from the perspective of the people they represent. The report draws on their extensive knowledge, the experiences of people with long-term conditions and the latest academic and policy research. It provides a snapshot of the gaps in care quality that matter most to service users and patients.
Together with a couple of colleagues at The King’s Fund, I have been supporting the charities to pull together their insights and expertise, and to help them form their conclusions. Ranging from surveys and case studies to full service audits, the wealth of data that has been collected and produced by these organisations is an essential complement to official national datasets when seeking to understand care quality. The report pulls out some of the key insights from that evidence, but if you have any researcher blood in you, I recommend you scour the endnotes for new references.
Here are some of the key points that this work really emphasised for us.
Refocusing on prevention and early intervention
In revisiting the latest public health statistics I am still taken aback by the extent to which some of the leading killer diseases are potentially preventable through changes to diet, exercise, smoking and alcohol consumption. Nearly half of all cases of cancer and three-quarters of cases of cardiovascular disease could be prevented. The data on the impact of early intervention is just as staggering. Only 7 in every 100 people diagnosed with bowel cancer at a late stage of the disease survive for at least five years, compared to 93 in every 100 people who are diagnosed early.
Prevention featured prominently in the NHS five year forward view, but has somehow slipped from view in the subsequent flurry of activity to identify the vanguards of new organisational forms. The public health agenda needs to be owned by all organisations in health care and beyond, as well as by communities themselves. Giving local authorities a leadership role may be a good start, but these issues need far more national attention too.
Putting the ‘support’ into ‘supported self-management’
The vast, vast majority of care for people with long-term conditions is provided by the people themselves, their family and (unpaid) carers. Properly supporting individuals and their carers to do this well and in a sustainable way involves providing people with information at the right times and in a format they can understand. For example, only half of people with schizophrenia report receiving information about their medication in a way they can understand. It means offering education and training, and providing ongoing support. This work needs to be seen as core NHS business and clinicians need to be skilled in areas such as health coaching, motivational interviewing, shared decision-making, and care and support planning to help them to keep people well. Care needs to be thought of in terms of how it can fit into the reality of people’s lives, and not the other way around.
Remembering what it is all for
In the context of current financial pressures, debate within the health system understandably focuses on organisational survival. But this report reminds me of the importance of really thinking about the ‘value’ side of the value-for-money equation. In the case of people with incurable diseases, most would probably agree that health care should alleviate pain, disability and distress and prevent further deterioration. But given your values, your current life circumstance and your hopes for the future, which of those would you prioritise? Your answers to that question will likely be different to mine. Understanding how patients experience an illness, and how that interacts with their particular circumstances seems pretty critical to producing something of value as a return on the taxpayers’ investment. Evidence suggests that adopting this approach can actually lead to substantially lower intervention rates.
Today’s report is seeking to influence and inform the next government among others – the insights should be essential reading matter for whoever gets the keys to Richmond House.