It’s been four years since NHS England’s first National Cancer Patient Experience Survey and, at first glance, the latest findings show things are looking good

It’s been four years since NHS England’s first National Cancer Patient Experience Survey, and at first glance, the latest findings show things are looking good; patient experience has improved overall, with breast cancer patients reporting some of the highest scores. Great news.

However, when we look more closely some worrying trends appear. Although 89% of patients report they are given the name of a clinical nurse specialist (rising to 93% for breast cancer patients), only 73% found it easy to contact them (falling to 71% for breast cancer patients), a decrease compared with previous years. In addition, the improvements in patient experience are generally quite small with only a few percent increase over four years. So why aren’t services doing more to improve?

Having worked with breast care services for 11 years as part of Breakthrough’s Service Pledge for Breast Cancer, Breakthrough is well placed to help answer this. From working with healthcare professionals and patients to improve breast care services, we know that the drive and commitment to change is there. We’ve also seen the environment of the NHS change considerably in this time, with patient voice and experience now being as valued in assessing services as clinical outcomes.

Why aren’t we seeing more change?

Although there is a greater focus on listening to patients, we are yet to see the processes in place to help healthcare services truly understand and act on what their patients say. The National Cancer Patient Experience Survey tells hospitals only 73% of patients found it easy to contact their Clinical Nurse Specialist. By why is this? What made it difficult to contact them? And what is the impact on patients when they can’t get in contact? We can hypothesise, and the Clinical Nurse Specialists themselves are all too aware of how their increasing workloads can affect patient care. But we don’t know for certain.

So how can a Trust be certain of what they need to change? How do they know it won’t impact other services as a result? Suddenly, services can find themselves with more questions than answers. Combine this with a lack of time and resources and it’s no wonder services are struggling to make the real improvements needed.

Skills and support from the third sector

But there are ways to address this, and the third sector is leading the way. Breakthrough was one of the first charities to focus specifically on patient experience, but now we are joined by various organisations offering skills and support to help hospitals really understand what their patients want and how to make changes that will work. Whilst surveys and other forms of feedback are hugely important to help us understand what matters most to patients, getting feedback is just the beginning. Real change can only happen when hospitals and staff have the support they need to act on what their patients say.

When we launched our Service Pledge in 2003, the National Cancer Patient Experience Survey didn’t exist and the ethos of ‘patient-centred care’ was yet to be prioritised by politicians. Things have changed and things are getting better, something we should be proud of. But we are still a long way from the gold standard all healthcare services strive to achieve. To achieve this, we need to understand that both the NHS and patient organisations are in a strong position to work together and not just listen to patients, but use this to ensure improvements are made that have the biggest impact. 

About the author

Catherine Wood has delivered the Service Pledge programme for over 5 years, working with breast cancer services and patients to identify improvements that make the most difference for patients. Catherine has personally worked with over 20 breast cancer services, supporting them to deliver their Service Pledge for breast cancer patients.

Before joining Breast Cancer Now, Catherine worked on a variety of medical education and patient information projects covering different therapy areas, including: oncology, cardiovascular disease, medical devices, Parkinson’s disease, rheumatoid arthritis, diabetes, hepatology and urology.