We aren’t listening to people with long-term conditions – but doing so could save the NHS

The ever-worsening British Social Attitudes survey

Earlier this month the new NHS England CEO, Sir Jim Mackey said one of the most urgent worries facing the NHS was the results of the British Social Attitudes (BSA) survey, which looks at the public’s view of the NHS.

At National Voices we have long-been concerned by the plummeting faith in the NHS this survey has revealed in recent years, as it acts as a proxy measure of people’s experiences of using the NHS, whether personally or through what they hear from family and friends.

Speaking at a Medical Journalist Association, Sir Jim Mackey said the NHS “really needs to focus on the BSA”.

“We thought it had bottomed out, but it’s got worse. The results this year were a very big shock and a very big sign we are losing that connection with the public.”

We recognise that those on the NHS frontline are working hard to provide good care and they themselves are frustrated by their inability, through workload or rising patient need, to offer the kind of care they want to. But we agree with Sir Jim when he said we have “to get the conversation going on quality and patient experience.”

Where to focus?

Our new report, Working for patients: How improving the experience of patients with long-term conditions can deliver the Government’s ten year health plan,  examines the experience of people living with long-term conditions and lays out pragmatic solutions to help us better understand some of the experiences that underlie the BSA responses and how to improve them.  

A staggering 25 million people in England are currently estimated to have a least one LTC, with 13.4 million having two or more. The burden is also not spread evenly, with people in the most deprived areas developing multiple LTCs 10 years earlier than people living in the least deprived areas.  
 
Helping people to manage these conditions is said to account for 70% of GP appointments and 50% of hospital activity. It is an enormous chunk of what the NHS does but, unlike with elective performance or A&E waits, it’s almost invisible in the way the NHS judges performance at the moment. 

Yet the numbers of people living with one or more LTCs are so vast that no government can realistically turn around the BSA survey results without concentrating on the experiences of people such as me. 

Why the NHS doesn’t work for people with long-term conditions

Speaking from experience, living with a long-term condition (LTC) can often feel like a part-time job. Navigating different hospital apps, the inability to cancel appointments, ongoing prescription issues and chasing down test results, are of course all multiplied when dealing, as I do, with more than one LTC. I act as the sole co-ordinator of my own care, especially as there is no single holistic overview of how all my health needs interact with each other, and it is frequently exhausting and frustrating. 

The problem is our NHS, and the structures and practices that drive it, is not really set up to support people like me, with multiple chronic needs. Policy makers like to think in “episodes of care”, acute interactions with specific services for specified periods of time. This is in part because these sorts of interactions are easier to count, easier to contract for and easier to sort out how hospitals and GP practices are paid. 

But it clearly puts system need ahead of patient need – people living with a long-term condition judge the NHS on whether the care provided is improving or hindering their quality of life, and making it easier not tougher to look after themselves. 

According to the GP Patient Survey, 94% of patients with an LTC who had a conversation with their GP about what was important to them in managing their condition said it was helpful to them. Shared decision making clearly makes a difference. The problem is that only about half of patients are having these discussions. The net impact of these missed conversations means 22% of patients say they are either “not very confident” or “not at all confident” in managing the issues caused by their illness or condition. That is equivalent to 5.5 million patients! 

An opportunity for change

Over the past few months, we have been working with Future Health and a selection of our members and sector experts to explore what opportunities there are to focus on providing more holistic support to people with chronic needs.  

These 5.5 million patients, with their unmanaged symptoms, are highly likely to end up being more frequent users of NHS services (costing more in the short term), or be storing up more serious problems for the future (costing more in the long-term).  

There is much talk of the 10 Year Plan wanting to support patients to self-manage their health more. People with chronic conditions should therefore be an obvious focus for those currently holding the pen on the plan. The opportunity for impact is huge, both in terms of reducing demand on the NHS but also in terms of restoring confidence in the NHS among millions of people.  

Lastly, using patient experience of managing their LTCs as a key success measure for the NHS would provide a way of assessing whether the Government’s three shifts are working. This could look like: 

• Hospital to community: A measure focused on people’s access to care in the community and the quality of support they are receiving. This could also include an assessment of unnecessary hospitalisations from unmanaged LTCs and help develop a picture of whether the new enhanced community offer is working. 

• Sickness to prevention: A measure focused on patients with LTCs developing other conditions/experiencing complications. This would be a good way to watch performance on secondary prevention.  

• Analogue to digital: A measure focused on whether digital services and support are effective in helping people with LTCs in managing their condition(s). The aim being to keep improving both the proportion of people who say their condition(s) are well managed and the proportion using digital services and support.