Don’t underestimate the value of a good experience

Last year the number of people living with cancer in the UK was estimated at 2.5 million. And assuming that all existing trends continue, this number is projected to increase to 4 million by 2030. At Macmillan, we think this makes it more important than ever to ensure cancer patients not only get the most appropriate treatment, but that they also have a good experience of care.

All patients should have a positive experience of care and be treated with the highest levels of dignity and respect throughout their cancer journey, regardless of who they are or where they live. While an extreme example, the shocking events at Mid-Staffordshire NHS Trust showed that too many people were not being treated with dignity and respect: patient experience was not a priority. This is despite the NHS Mandate clearly stating that it aims for a health service ‘where compassionate care and patient experience are as important as clinical outcomes’.

Because support for people affected by cancer is central to everything that we do at Macmillan, we want to see patient experience as a priority. Unfortunately, our evidence shows that across the NHS, patient experience is still not regarded as having equal importance as clinical outcomes and that there is unacceptable levels of variation in patient experience.

Experts we’ve spoken to tell us that this is because patient experience is not meaningfully prioritised at all levels of the system.  For example, when hospital boards raised patient experience as an agenda item, only 5% of these items had further actions attached to them.

We can see the knock-on effects of this in the results of the National Cancer Patient Experience Survey (NCPES) for England. This survey is an opportunity for patients to voice how they felt about the care they received and in so doing, provide valuable feedback to hospitals about what is working well and what isn’t. This can then be used to drive meaningful improvement on the ground.

Unfortunately, what recent survey data has shown is that there is a lot of room for improvement. A snapshot of the 2015 NCPES found that 1 in 5 did not have a good overall experience of care and more than one in 10 patients felt they weren’t always treated with dignity and respect.

The Independent Cancer Taskforce published its Cancer Strategy for England in July last year, setting out its recommendations for how to improve cancer care over the next 5 years. One of the recommendations was that a metric, or set of metrics, was developed “that would encourage providers and commissioners to focus more consistently on improving people’s experiences of their care, treatment and support”.

Macmillan lobbied for this recommendation on the basis that embedding a metric in accountability mechanisms sets out clearly that patient experience is a national priority, and pushes NHS England, hospitals and others to do more to improve how people living with cancer experience their care.

This is the first time that it has been recognised at a national level that how someone experiences their care can be just as important as the result of their treatment. Patient experience now sits alongside other key indicators of cancer care quality – such as one-year survival and cancer waiting times – in the CCG Local Improvement and Assessment Framework as well as the Cancer Dashboard.

We believe this is a critical first step in being able to reach the aim set out in the NHS Mandate to make compassionate care and patient experience as important as clinical outcomes.

Now we want to see this become a reality for every cancer patient. That means NHS England needs to start thinking about how it can go beyond the metric and use the data and information on patient experience to drive meaningful year on year improvement in patient experience. This requires action at all levels – from each individual healthcare professional, to hospital boards and trusts, commissioners and system leaders and only then will patients really experience an improvement in their care.

Victoria Woods, Senior Public Affairs Officer, @vgwoods


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