21 September 2016

Missing “piece of the puzzle” blocking vital improvements to poor patient care

Two thirds (66%) of Hospital Trusts in England do not know how many of their patients have secondary, incurable breast cancer, reveals charity Breast Cancer Care.1

Shockingly, despite it being mandatory since 2013, a fifth (19%) of Hospital Trusts are not collecting any data about the number of people diagnosed with incurable breast cancer and almost half (47%) are not recording the numbers fully.2 3

The alarming absence of accurate figures means Hospital Trusts are basing critical decisions about care for patients with incurable breast cancer on insufficient evidence. They are unable to identify if they have enough services and staff for the number of patients they support – such as specialist nurses.

The charity believes incomplete figures for the number of people diagnosed with incurable breast cancer is a major barrier to urgently needed improvements to poor care.

More than four in 10 (42%) people with incurable breast cancer do not feel their overall care is well-managed and well-coordinated – and they are often left to navigate the complex healthcare system alone.4 And an eighth of people (13%) surveyed by Breast Cancer Care said they need more support to help manage side-effects or know when to seek medical help.5

In addition, invaluable insights into the effectiveness of treatments for primary breast cancer are being missed by not recording people who go on to develop incurable breast cancer.

Crucial leadership from the government, Public Health England, NHS England and Hospital Trusts remains worryingly inadequate. Even with a commitment to data collection included in the last two cancer strategies, no data on incurable breast cancer have yet been published.6

Without prioritising data collection and ensuring sufficient resources are available, Hospital Trusts are unable to gather a complete picture of their patients with incurable breast cancer. This is essential to helping transform patient care.

Breast Cancer Care’s findings show the worst performing region in England is the North East, with only one of the 14 Hospital Trusts collecting complete data. The best performing region is the North West, where nine of the 22 Hospital Trusts are collecting complete data.7

Vicky Stock, 37, from Birmingham, was diagnosed with secondary, incurable breast cancer in her bones in May 2015. She says:

“My diagnosis of incurable breast cancer last year changed everything. It’s so tough not knowing how long you will be well for. And trying to deal with my illness and then also needing to chase up appointments, results or information is exhausting.

“I don’t have a dedicated secondary breast cancer nurse, so it’s hard to know who can help when I’ve got questions or concerns. And finding a new symptom or waiting for scan results is extremely worrying. It’s disappointing when no one checks in to see if you’re coping ok and I feel forgotten and left on my own a lot of the time.

“I want to be seen as an individual and care could be much more personal. And part of that is people with incurable breast cancer being counted.”

Samia al Qadhi, Chief Executive of Breast Cancer Care, says:

“Our findings reveal a crucial piece of the puzzle to improve care for people with incurable breast cancer is missing – the numbers. Without comprehensive figures for how many people are diagnosed we believe it is near impossible for Hospital Trusts to effectively plan crucial services, care and support.

“Our concern is that until all Hospital Trusts across the country prioritise the collection of robust data, people with incurable breast cancer will be trapped in a vicious cycle of poor care. And the gulf between quality of care for patients with incurable breast cancer and primary breast cancer, where diagnosis figures are recorded, will only widen.

“We are calling on the government, Public Health England and NHS England to urgently take leadership on the mission they set out more than three years ago and ensure everyone with incurable breast cancer is counted. These patients don’t have time to wait for better care.”

Breast Cancer Care is calling for the government, Public Health England, NHS England and Hospital Trusts to prioritise data collection for incurable breast cancer and tackle the barriers preventing the numbers being consistently recorded. The charity will also work with Hospital Trusts to share best practice.

Breast Cancer Care’s Secondary. Not second rate. campaign launched in July 2016 to ensure everyone living with incurable breast cancer gets the care and support they need.

A map showing each Hospital Trust in England and whether they are recording the number of people diagnosed with incurable breast cancer and the second in a series of Breast Cancer Care reports are available at breastcancercare.org.uk/secondary  

-Ends-

Dawn Tumbridge, 54, from Oxfordshire, was diagnosed with secondary, incurable breast cancer in April. She says:

“When I was told I had incurable breast cancer it was such a shock I went into meltdown. It’s still the first thing I think about when I wake up every day.

“While after my primary breast cancer diagnosis I felt I was in a system that was working to look after me, now I have incurable breast cancer everything feels really disconnected. At an already overwhelming time, I feel like getting the care, information and support I need is often left up to me – which is very frustrating.

“Not knowing how many people there are like me living with incurable breast cancer makes you feel like you don’t count. The uncertainty of this disease has such an impact on me and my life you want to know you’re in good hands and can be confident of your care and support.”

For further information contact:

Sophie Softley Pierce, PR Officer, Breast Cancer Care
020 7960 3505 (out of hours 07702 901 334)
Sophie.pierce@breastcancercare.org.uk 

Notes to editors

All percentages rounded to the nearest whole number, for full results please contact Sophie Softley Pierce.

1, 2, 3 125 out of 134 Hospital Trusts in England (who have breast cancer services and diagnose breast cancer patients) contacted by Breast Cancer Care’s Who’s Counting? campaign responded to share whether they are collecting data on incurable breast cancer.

42 Hospital Trusts collecting data in full (33.6%); 59 Hospital Trusts partially collecting data (47.2%); 24 Hospital Trusts not collecting data (19.2%). For full responses visit breastcancercare.org.uk/secondary  

4, 5 Figures from a Breast Cancer Care survey by Quality Health. Fieldwork was undertaken between 7 March and 31 May 2016. Total sample size: 841 people with incurable breast cancer. Total sample size for individual questions may vary due to people answering specific questions according to their personal experience. All percentages calculated by Quality Health.

6 Section 2.10, Improving Outcomes: A Strategy for Cancer; Recommendation 90, p.74 Achieving World-Class Cancer Outcomes: A Strategy for England 2015-2020

7 A full list of each Hospital Trust in England and whether they are recording the number of people diagnosed with secondary breast cancer is available on Breast Cancer Care’s secondary breast cancer map at breastcancercare.org.uk/secondary   

About Breast Cancer Care

When you have breast cancer, everything changes. Time becomes measured in appointments. The next scan. The next results. The next challenge.

At Breast Cancer Care, we understand the emotions, challenges and decisions you face every day. So, from the day you notice something’s not right to the day you begin to move forward, we’ll be here to help you through.

Whether you want to speak to our nurses, download our specialist information or connect with volunteers who have faced what you are facing now, we can help you feel more in control.

For care, support and information from day one, call our nurses free on 0808 800 6000 or visit breastcancercare.org.uk