The Cancer Patient Experience Survey – questions have been asked…now what?

It may seem as though we’re constantly asked to give feedback – but what’s more important is knowing what’s happened as a result of our comments – have we learnt anything? What’s changed?

The Cancer Patient Experience Survey – published today – has been incredibly useful in finding out what is happening on the ground for the people that matter most.

The Survey has been running for four  years now and there’s been consistent improvement in many the responses. It’s great to see that this year, nearly nine out of ten (89 per cent) of cancer patients said that their overall care was excellent or very good.

Vitally, as well as showing good practice, the survey highlights areas where improvements are needed. So what happens next is just as important – to make sure these findings are translated into real differences for patients.

Improving?

One of the aims of the Survey is to ‘provide information to drive local improvements’ – and we’re keen to see what this means in practice.

It’s very helpful to know that there are some places which are doing really well, and others which have improved. Local variation might suggest that there’s plenty of room for future improvement.

One thing which hasn’t improved over the years is the proportion of patients having a discussion about research. Research is essential to make improvements in cancer prevention, screening, diagnosis and treatments.

Today, half of patients will survive their cancer for at least 10 years. In the 1970s, only a quarter of patients survived. This progress has been driven by research and it’s vital that research is supported in the NHS so more patients can benefit in the future.

We know that many cancer patients value the opportunity to take part in research. So it’s important that they’re  made aware of clinical trials that may be available, and are given the necessary information to decide whether they want to be involved.

But this isn’t happening nearly as much as it could. Today we learnt that, overall, less than a third (31 per cent) of patients said that they’d discussed taking part in research since being diagnosed.

This level has been about the same in previous surveys, and there are large variations around the country.

We’d like to know why this hasn’t improved, and why there’s variation. Is research not discussed if there’s no appropriate trial available for the patient? Why are some NHS Trusts so much better than others and discuss research with almost two thirds (61 per cent) of their patients?

A crucial factor that’s been shown repeatedly is the importance of having access to a Clinical Nurse Specialist – as this is closely linked to a better experience. This shows the importance of allowing more nursing staff to have time to work holistically with a patient – and how websites like our Patient Portal would make a difference with this.

How are people diagnosed in the first place?

The survey also asks a number of questions about how patients were diagnosed.

This is a really important issue as we know that being diagnosed early gives the vast majority of patients a much better chance of surviving cancer. Almost half (46 per cent ) of patients are diagnosed at an advanced stage.

Seeing a GP will very often be the first step towards being diagnosed. It’s good to hear from the survey that 75 per cent of patients saw their GP no more than twice before being referred to hospital.

But, worryingly, nine per cent of patients are still seeing their GP five or more times before this happens.

It’s important to note that this doesn’t simply mean that all of those patients had symptoms that were ignored by their GP. The survey doesn’t tell us what actions the GP took in those appointments, nor what symptoms the patients may have come in with.

The average GP will see fewer than eight new cancer cases each year*, despite thousands of patients arriving with potential cancer symptoms.

But delays in referring patients for necessary tests can be costly for the patient. We must continue work to understand how we can help GPs quickly identify and refer people with potential cancer symptoms.

So what impact are the results having?

It’s important to use data to make a difference, and it’s great to see that some areas are improving as a result of this survey.

We’d like to see that the NHS learns from patients to improve the care they provide, such as having more discussions about research with cancer patients.

But we’d also like to see the survey itself improve, and be used as a means to understand the complexities around areas such as early diagnosis of cancer and where much needed improvements can be made.

Sara & Matt

• Sara Bainbridge is a policy adviser at Cancer Research UK; Matt Wickenden is the charity’s early diagnosis manager
• Download the full Survey results here (PDF)

*Based on latest (2011) total number of newly diagnosed UK cancer cases divided by the total number of UK GPs for the same year. The number of GPs is taken from NHS workforce statistics published for England, Wales, Scotland and Northern Ireland.