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Questionnaire

Nearly nine out of ten patients said their care was ‘very good’ or ‘excellent’

Last Friday, the Department of Health published the results from the fourth National Cancer Patient Experience survey. The survey is a good thing – we’d like the government to do it every year. The results are extremely useful, especially for those who run NHS services.

The survey asks patients a wide range of questions about their experience. For example, did they receive written information about their cancer? Were they given a choice of treatment? Did they have the name of their Clinical Nurse Specialist?

The headline results of the survey are very encouraging. Overall 88 per cent of cancer patients rated their overall care as ‘excellent’ or very good’, and 98 Trusts improved on their results last year.

While this is good news, we’ve delved deeper into two key issues for us: research and early diagnosis – to see if the good results hold up in these areas too.

Research

Ongoing support for cancer research is critical to improving cancer services, and outcomes.

In the latest survey results, covering 2010/11, one in five – 20 per cent – of cancer patients surveyed said they were involved in a research study, the highest proportion in the world. Of these, nearly two thirds – 61 per cent, or 32,000 – are enrolled into a Cancer Research UK-supported study, and these studies have changed clinical practice in many areas.

Emerging evidence shows that patients treated in  hospitals and clinics where research is also taking place fare better, and that these research-active healthcare systems deliver better care.

Therefore, being given information about opportunities to take part in research studies should be a key element of a cancer patient’s experience. The survey asked patients about research for the first time and these data, collected over time, will help us understand if the NHS is becoming more research-friendly.

While it probably won’t be appropriate to talk to every cancer patient about being invovled in research, there is clearly room for improvement, as only a third of patients said they had a discussion about research. And we know that patients want to have this discussion: 95 per cent of patients who discussed research with their doctor were glad to have been asked, and over half of those who weren’t asked, would liked to have been.

It is important that questions on research are asked in future surveys. The new Clinical Commissioning Groups that are part of the restructured NHS should also do everything that they can to ensure that patients are informed about research in which they can participate. This is in line with their duty to promote research, as detailed in the in the Health and Social Care Act 2012.

Early diagnosis

Treating cancer when it’s in its early stages is nearly always more effective – that’s why we need to spot cancer earlier in this country. The main reasons our cancer survival rates are lower than the best performing European countries are likely to be late diagnosis, and poorer access to high-quality treatment.

Unfortunately, the survey results show that nearly half of all cancer patients still see their GP several times before being referred to a specialist, and one in five never sees their GP before going to hospital. These results are almost exactly the same as the previous results in 2010.

There’s also still significant variation by cancer type and area of the country. Some variation is expected and many cancer symptoms are also signs of other, less serious conditions that will require investigation over time. However, we do need to understand and reduce variation, and reduce time from first presentation to referral in some instances.

The NHS Commissioning Board, which formally starts its duties overseeing the NHS in October, should encourage commissioners to do all they can to reduce the time between patients seeing their GP with possible cancer, and referral to a specialist.

Overall these results are encouraging, and it’s great that so many patients say the NHS is treating them well. But there’s also room for improvement, and the government can’t be complacent – particularly given the financial pressures on the NHS, the ongoing changes to its organisation, and the aging UK population.

We’ve come a long way in a short time – but we need to keep going.

Simon

Simon Kirkland is a senior policy officer at Cancer Research UK 

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Comments

Simon Kirkland August 21, 2012

Many thanks Simon and Richard for the useful comments. We agree that this survey gives an excellent benchmark for measuring progress on patients receiving information about research, and we hope these questions will be incorporated every year.

Ensuring that research is seen as a priority by the NHS Commissioning Board, Clinical Commissioning Groups (CCGs), the Secretary of State and others is absolutely a priority for Cancer Research UK, and others in the sector, such as members of the Association of Medical Research Charities. We all worked hard to ensure that duties in respect of research were included in the Health and Social Care Act 2012, and want to ensure these are taken forward. We are responding to the current consultation on the NHS Commissioning Board’s objectives (http://www.dh.gov.uk/health/2012/07/draft-mandate-consultation/), and we are watching with interest to see what CCGs include in their commissioning plans and authorisation documents regarding research.

We also have a session at the annual Britain Against Cancer conference (11th December) on research, which is a fantastic opportunity to hear what patients have to say on this issue.

Richard Stephens August 21, 2012

I agree wholeheartedly with Simon Denegri’s comments. I look forward to this year’s NCRI Conference, where there will be a paper presented about this survey, discussing what links there are between Trust and Networks encouraging patients to think about research, and the effects that this may have on overall patient satisfaction levels.

Simon Denegri August 21, 2012

Excellent summary of the survey results, thanks Simon. I absolutely agree with your comments about the research findings and the role of CCGs in ensuring that the new statutory duties on research in the Act become a reality for patients. I hope that CRUK will be joined by other cancer patient groups in making sure CCGs – and NHS Trusts – see this is a priority. But also in making sure patients know, and have the right evidence and information, to approach their doctor about opportunities to take part in research. The national cancer patient experience survey gives us an important benchmark by which to measure future progress. We must all aim to ensure next year’s survey shows an increase in the number of patients with whom research participation is discussed, and in the number taking part in trials.