2 July 2018

With the release of substantive new research uncovering inadequate care for women with breast cancer after they’ve finished hospital treatment, national charity Breast Cancer Care today calls on the Cancer Minister to ensure every woman is offered tailored breast cancer support.

The support charity’s extensive new research suggests that up to 250,000 women with breast cancer in England may not be getting the support they need.1 Its Care After Breast Cancer campaign - launching today - calls on the Cancer Minister, Steve Brine, to ensure that the NHS tackles the lack of specialised end-of-treatment care in the health system.

Breast Cancer Care’s landmark survey of almost 3,000 women with primary breast cancer has revealed that two fifths (41%) did not receive the professional support they needed to cope with the long-term effects of the disease.2

The charity says breast cancer-specific support must be introduced in hospitals to enable women to manage their unique symptoms and side effects, which differ considerably from other common cancers. Yet, it found that over half (51%) of Hospital Trusts don’t provide a specific breast cancer support event when women finish hospital treatment.3

It now seeks a commitment from the Department of Health and Social Care that every woman who needs it will have access to a breast cancer-specific support event to help them start to navigate life after treatment. The charity is also asking people to contact their MP to urge Cancer Alliances - the bodies that coordinate local cancer services in England - to address the issue across the country.

Breast Cancer Care Chief Executive, Samia al Qadhi, has called for the Cancer Minister to respond urgently, commenting:

“It’s totally unacceptable that women with breast cancer are being routinely let down in such large numbers. After being blindsided by the life-changing, long-term emotional and physical effects of the disease, far too many women are left to pick up the pieces by themselves, without the healthcare support they so desperately need.

“Great strides in treatment over the last 70 years mean that, happily, more and more women are surviving breast cancer. Now it’s crucial that the system catches up and ensures that these women are given the ongoing care they need to live well - not just to survive.”

There are an estimated 579,000 women living with a breast cancer diagnosis in England.4

The survey also found:

  • Before finishing hospital treatment just under half (46%) of women with breast cancer are not told, by a healthcare professional, about all the possible long-term effects of the disease and its treatment.5
  • At the end of hospital treatment almost half (45%) of women with breast cancer are not told, by a healthcare professional, the cancer could come back.6 And over half (55%) are not given any information about the signs and symptoms of the cancer returning.7
  • A third (34%) of women with breast cancer have constant pain as a result of treatment.8 The pain has prevented a quarter (24%) from continuing with their normal daily lives.9
  • A third (32%) of women with breast cancer experience fatigue as a result of treatment that has prevented them from continuing with their normal daily life.10
  • Over a third (37%) of women with breast cancer reported having to return to their GP before they got the help and treatment they needed for long-term side effects, with almost a fifth (18%) returning three or more times.11, 12

Kirsty Brade, 30, from West Yorkshire, was diagnosed with breast cancer in August 2015. She had a lumpectomy, chemotherapy, radiotherapy and Herceptin and says:

“There was no warning given that years after I’d finished hospital treatment I still may not have bounced back. No one told me the cancer could return or what to look for, instead I made the discovery Googling alone at 2am when I couldn’t sleep. And no one prepared me for just how bad long-term effects could be - I’m now a 30-year-old living with relentless fatigue.

“After the hurdles of treatment I thought ‘now I’ll start feeling better’, but it just hasn’t happened. I don’t think about my life beyond breast cancer, as there is so much to overcome first. I physically cannot work full time, it takes me at least a day to recover from something as simple as meeting up with friends and sometimes even getting up the stairs is a struggle, yet the support I need still gets brushed aside.

“It would have made such a difference to have a conversation about the big picture of life post-treatment and how to look after my health when I left hospital. You don’t just go back to normal as soon as your hair grows back or hospital treatment ends, this can just be the beginning, and information and support are essential to help you face whatever comes next.”

Anyone can join the Care After Breast Cancer campaign to contact their MP - visit www.breastcancercare.org.uk/cancer-care

-ENDS-

For further information, please contact:

Sophie Softley Pierce, PR Manager, Breast Cancer Care

020 7960 3505 (out of hours 07702 901 334)

Sophie.pierce@breastcancercare.org.uk 

Notes to editors

Breast Cancer Care’s ‘Care After Breast Cancer’ campaign calls for the Cancer Minister to ensure every patient in England has access to a breast cancer-specific support event after hospital treatment ends - tailored to meet their needs and enabling them to live well after breast cancer - by urging Cancer Alliances to ensure these events are delivered.

For any reference to the Breast Cancer Care survey by Quality Health:

Fieldwork was undertaken between 5 March and 18 June 2018. The sample is of 2,862 women in England with primary breast cancer, with no additional diagnoses who have finished hospital treatment. All percentages calculated by Quality Health, rounded to the nearest whole number and figures were calculated to exclude responses where the question was not applicable to the respondent’s circumstances, i.e. ‘missing’, ‘n/a’ or ‘don’t know’. Total sample size for individual questions may vary due to people answering specific questions according to their personal experience.

1. Estimation calculated by Quality Health. With a sample of around 2,800 women with breast cancer in the survey from a population of 579,000 living with breast cancer in England, the 95% confidence interval is +/- 2%. So 41% of women in the survey is estimated between 225,000 and 250,000.

2. Figures from a Breast Cancer Care survey by Quality Health. 719 women answered no.

3. Freedom of Information Request, carried out in April 2018, 120 of 125 Hospital Trusts in England responded (95% response rate, 51% = 61/120 Trusts). Table below illustrates the Hospital Trust results by Cancer Alliances in England.

4. 579,000 women were estimated to be living with breast cancer in England in 2015. The Rich Picture with Cancer, Macmillan Cancer Support, 2017 update.

5-9 – All figures from a Breast Cancer Care survey by Quality Health.

5. 1,001 women answered no.

6. 1,087 women answered no.

7. 1,286 women answered no.

8. 961 women answered yes.

9. 239 women answered yes.

10. 911 women answered yes.

11. 318 women ticked either I saw my GP twice, 3 times, 4 times, 5 or more times.

12. 158 women ticked either I saw my GP 3 times, 4 times or 5 or more times.

The cancer strategy for England, ‘Achieving World-Class Cancer Outcomes: a strategy for England 2015–2020’, includes commitments to implement the ‘Recovery Package’, a self-management package for people affected by cancer. Guidance issued by NHS England in September 2016 requires all parts of the Recovery Package to be available to all cancer patients by April 2019.

Previous research by Breast Cancer Care found people living with and beyond breast cancer have a range of unmet needs, the combination of which is unique to the disease and there is a clear need for breast cancer-specific information to enable people to manage the symptoms and side effects specific to their treatment and live well beyond breast cancer. Breast Cancer Care’s Moving Forward course provides information and support from experts on how to manage the concerns and side effects of breast cancer, and acts as a forum for people affected by breast cancer to share their experiences and support each other. https://www.breastcancercare.org.uk/sites/default/files/cool131_moving_forward_report_2017_new_final.pdf 

About Breast Cancer Care

Breast Cancer Care is the only specialist UK wide charity providing support for women, men, family and friends affected by breast cancer. We’ve been caring for them, supporting them, and campaigning on their behalf since 1973.

Today, we continue to offer a unique range of support including reliable information, one-to-one support over the phone and online from nurses and people who’ve been there. We also offer local group support across the UK.

From the moment someone notices something isn’t right, through to their treatment and beyond, we’re there to help people affected by breast cancer feel more in control. www.breastcancercare.org.uk