Half of the women who took part in a Breast Cancer Now survey in the UK say the COVID-19 pandemic had a "significant impact" on them.
New research by Breast Cancer Now reveals that half (51%) of women surveyed in the UK say the COVID-19 pandemic had a "significant impact" on their wait for, and experience of, breast reconstruction surgery.
That's despite nine in 10 (92%) women who had, or were waiting for, reconstruction regarding it as an "important part of recovery".
Conducting a survey of more than 2,500 people in the UK1, the charity found that 40% of women, waiting for breast reconstruction during the pandemic, faced a delay of two years or more.
Most breast reconstruction services are still not operating at full capacity, according to our Freedom of Information (FOI) data.
And the latest Hospital Episode Statistics (HES) data shows the full impact of the pause and restarting of breast reconstruction services to have been a 34% drop in breast reconstruction activity in England in 2021/22.
That's in comparison to 2018/19, meaning women are likely facing even longer waiting times than pre-pandemic.2
On top of the varying degrees of recovery from the impact of the pandemic across breast reconstruction services, women in England are also facing ‘a postcode lottery’ in accessing these services.
Evidence suggests women in some areas experience difficulties in accessing a type of reconstruction known as free flap3. There also still remain limits on the time within which women can have reconstruction, or the number of reconstruction operations they can have in some areas.
Patients should be supported and empowered in making choices about which type of breast reconstruction is right for them.
National Institute for Health and Care Excellence (NICE) guidelines currently recommend that healthcare professionals discuss the different options and what they involve with patients4.
And the Women’s Health Strategy for England sets out the ambition to embed personalised care and shared decision-making into all areas of women’s health5.
Yet, Breast Cancer Now’s research reveals only six in 10 (65%) women who had - or were waiting - for surgery for breast cancer "definitely" felt involved in making the decision on whether or not to have reconstruction.
And almost one in five (19%) women that had or were awaiting breast reconstruction, felt unable to access support as they made their decision around breast reconstruction.
Baroness Delyth Morgan, Chief Executive of Breast Cancer Now, said:
“For women who choose breast reconstruction, it is a core component of their recovery.
"Far from a solely aesthetic choice, this is the reconstruction of their body and indeed their identity after they have been unravelled by breast cancer treatment and surgery.
“Through our Helpline and insight work, we hear of patients affected by delays to reconstruction surgery and the significant emotional impact this has on them. That includes altered body confidence, loss of self-esteem and identity, anxiety and depression, and hindering their ability to move forward with their lives, knowing their treatment is incomplete.
“This is why we’re so deeply concerned at our research revealing that women are too often being denied vital access to the type of breast reconstruction that is right for them and equally critically, at the right time.
“Barriers must be removed and access to reconstruction must be timely, fair, supported and informed for all women who choose it.
As the NHS works to recover from backlogs of surgery that built up during the pandemic, we must urgently address these failings, and put breast reconstruction on a much sounder footing for the sake of women, both now and in the future.
“We call on the National Health Service England (NHSE) to work in partnership with us, the Association of Breast Surgery (ABS) and the British Association of Plastic, Reconstructive and Aesthetic Surgeons (BAPRAS) to develop a practical plan for breast reconstruction services.
"One that addresses the backlog, removes barriers, and ensures timely and fair access to reconstruction for all women who want it.”
Beyond the issues around accessing surgery and vital information, half (50%) of women awaiting breast reconstruction during the pandemic reported feeling unhappy with their body image.
And for more than two in five (42%) women, this had a negative impact on their emotional wellbeing.
Carlie-Ann Hare, aged 32 from Birmingham, was diagnosed with breast cancer in March 2020 and was due to have a lumpectomy, but ended up having a single mastectomy. She missed out on immediate reconstruction. Despite implant-based reconstruction services restarting locally, she is still waiting for reconstruction as a result of disruption caused to services by the pandemic. Speaking of how the delay has impacted her life, Carlie-Ann said:
"I’ve had very little information about how much longer I will be waiting for my breast reconstruction surgery.
"After speaking to my oncologist, we wrote a letter together to the plastic surgery department to highlight the impact it has had on my mental health. But it hasn’t helped.
“It’s really tough, and I have had self-esteem issues as a result of waiting. Although I’m trying to embrace my body, it’s not always easy.
"I have tried putting normal pictures on my dating app. But it’s awkward as then I have to have a conversation about it at some point. I just want to know when it will be happening so I can move on with my life."
Breast Cancer Now is asking NHSE to work in partnership with us, the Association of Breast Surgery (ABS) and the British Association of Plastic, Reconstructive and Aesthetic Surgeons (BAPRAS) to develop a practical plan for breast reconstruction services to address the backlog, along with removing barriers to ensure fair access to reconstruction.
Breast Cancer Now’s new report, Delivering Real Choice: the future of breast reconstruction in England, sets out recommendations to help achieve this.
This includes ways of reducing the backlog, eliminating long waits by ensuring breast reconstruction is incorporated within the Referral to Treatment target, increasing capacity to deliver free flap reconstruction, and ensuring service structures enable access to it.
Alongside this, all local restrictions on access to breast reconstruction must be removed.
We encourage women to discuss their surgery and reconstruction options with their treatment team. They can also speak to our expert nurses by calling our free Helpline on 0808 800 6000.
ENDS
Notes To Editor
Free flap reconstruction involves the use of tissue (skin and fat) from other parts of the body (e.g. stomach, thighs, or buttocks) to rebuild the breast shape. Microsurgical techniques are used to connect the tiny blood vessels to the new site.
When breast reconstruction services were paused between March to July 2020, during the first wave of the pandemic, Breast Cancer Now estimated that over 1,500 women missed out on reconstruction following a mastectomy.
This included 1,000 women who would have had immediate reconstruction, and 500 women who would have had delayed reconstruction.
About Breast Cancer Now
- Breast Cancer Now is the UK’s first comprehensive breast cancer charity, combining world-class research and life-changing support.
- Breast Cancer Now’s ambition is that, by 2050, everyone who develops breast cancer will live and be supported to live well.
- Breast Cancer Now, the research and support charity, launched in October 2019, created by the merger of specialist support and information charity Breast Cancer Care and leading research charity Breast Cancer Now.
- Visit breastcancernow.org or follow us on Twitter, Instagram or on Facebook.
- Anyone looking for support or information can call our free Helpline on 0808 800 6000 to speak to one of our expert nurses.
- Unweighted UK wide survey of 2,586 respondents undertaken between 30 March and 9 May 2022. 2,155 (83%) respondents from England, 238 (9%) respondents from Scotland, 141 (5%) respondents from Wales and 40 (2%) respondents from Northern Ireland. There were 12 respondents who did not provide demographic information. The survey included 1,246 people who either underwent reconstruction surgery, or were waiting for it.
- Between 1 April 2021 to 31 March 2022 there were 8,704 finished consultant episodes for breast reconstruction compared with 13,247 between 1 April 2018 to 31 March 2019.
- Getting It Right First Time, 2021, Breast Surgery: GIRFT Programme National Specialty Report, available at https://www.gettingitrightfirsttime.co.uk/wp-content/uploads/2021/02/BreastSurgeryReport-Mar21o-EMBARGOED.pdf
- NICE, 2018, NICE Guidelines: Early and locally advanced breast cancer: diagnosis and management https://www.nice.org.uk/guidance/ng101/chapter/recommendations
- Department of Health and Social Care, 2021, The NHS Constitution for England, available at https://www.gov.uk/government/publications/the-nhs-constitution-for-england/the-nhs-constitution-for-england