NHS0018

Written evidence submitted by Breast Cancer Now

About Breast Cancer Now

We’re Breast Cancer Now, the charity that’s steered by world-class research and powered by life-changing support. We’re here for anyone affected by breast cancer, the whole way through, providing support for today and hope for the future.

About breast cancer

Around 55,000 women and 370 men are diagnosed with breast cancer every year in the UK.[1] Every 10 minutes in the UK one woman is diagnosed with breast cancer, and one man is diagnosed every day. If nothing changes, this will rise to one woman every eight minutes by 2030.[2] Breast cancer incidence rates have increased by 23% in women in the UK since the early 1990s.[3] An estimated 600,000 people are alive in the UK after a diagnosis of breast cancer.[4] This is predicted to rise to 1.2 million in 2030.[5]

Why we are responding to the inquiry

The current economic climate could signal a sustained policy of austerity from the UK Government, with the NHS expected to make even more efficiency savings in future.  This comes despite the severe shortfall in workforce that existed before it was exacerbated by the pandemic. The growing backlog and expanding waiting times for many thousands of breast cancer patients awaiting screening, diagnosis, and treatment is testimony to the stalled recovery.

 

The focus on reducing waiting times for diagnosis and starting treatment is obviously welcome. However, the 75% performance target for meeting the Faster Diagnosis Standard is significantly lower than the existing standard for 93% of women to be seen by a specialist within two weeks of urgent referral for suspected breast cancer.

 

Breast screening services, pivotal to ensuring as many breast cancers as possible are diagnosed at the earliest stage, have been severely disrupted during the pandemic. Almost a million fewer women in England underwent breast screening in 2020/21 compared to the year before and breast screening uptake reaching a record low[6]

 

Breast reconstruction services have also been adversely impacted by the pandemic - in 2020/21 there was a 64% decrease in breast reconstruction activity compared to 2018/19, with services struggling to recover.[7]

We therefore welcome this timely inquiry by the Public Accounts Committee and are happy to provide evidence from the perspective of breast cancer waiting times, breast screening, and breast reconstruction respectively, set against your requested context of:

      The design of national recovery plans

      Implementation of the recovery plans

      Early progress made in recovering services

 

We hope that our insight and comments are useful.

 

  1. The design of national recovery plans

Breast Screening

The NHS Breast Screening Programme (NHS BSP) established a specific set of metrics to assess the recovery status of individual breast screening units (BSUs) in England, with services being directed to prioritise -

In order to improve clinical efficiency, the NHS BSP directed screening units to switch to an open invitation model for routine screening appointments (where letters are sent asking people to call and make an appointment rather than for a fixed date and time) when screening initially restarted in summer 2020. Unfortunately, uptake has declined.  While acknowledging the benefits of an open invitation model in terms of the potential for clinical efficiency, Breast Cancer Now has raised concerns that it risks reducing the level of screening uptake, especially amongst low attendance groups.

Low uptake remains the biggest barrier to ensuring early diagnosis ambitions are achieved and should be addressed as a priority. Unfortunately, there has been no national public awareness raising campaign to promote breast screening or any central development of a programme of targeted messaging to groups who are less likely to take up their breast screening offer.

Breast Cancer Waiting Times

NHSE guidance on recovering cancer waiting times performance has focused on two key measures:

         62 day standard for starting cancer treatment from the point of urgent referral

         28 day Faster Diagnosis Standard (FDS)

There was no stated ambition to achieve the 93% standard for seeing a patient in a specialist clinic within two weeks of an urgent referral, despite the fact more people are currently waiting longer to see a specialist.

In addition, the NHSE Operational Guidance for 2021/22 published in March 2021 included a commitment to “meet the increased level of referrals and treatment required to address the shortfall in number of first treatments by March 2022.”  Follow up guidance published covering the Oct 2021-Mar 2022 period acknowledged that “Breast cancer screening accounts for around a quarter of this shortfall and remains a specific priority”.  In the 2022/23 guidance, this commitment was scaled back to “reduce the shortfall in number of first treatments”, with no specific timeline to make up the overall number of missing cancer diagnoses. 

Breast Reconstruction

The Breast Cancer Now report Delivering Real Choice: the future of breast reconstruction services in England” highlighted that 92% of 1,246 people who either underwent reconstruction surgery or were waiting for it, felt it was an important part of their recovery.

There were already waiting lists of up to two years in some areas for a type of breast reconstruction known as ‘free flap’ prior to the pandemic. Breast reconstruction services were suspended for several months during the pandemic which will have exacerbated this issue. As breast reconstruction surgery began to start up again, the Federation of Surgical Specialty Associations published a prioritisation framework with guidance for trusts on which surgeries they should prioritise. Risk-reducing surgery (which often includes reconstruction) was categorised as priority 3 (out of 4), and delayed breast reconstruction priority 4.

Furthermore, as delayed breast reconstruction is considered a continuation of a planned treatment rather than a new treatment as it happens after a mastectomy[8] it is not covered by the Referral to Treatment target in the Elective Recovery Plan. Despite emphasis on the importance of addressing the long waits facing those whose treatment was disrupted by the pandemic, this plan fails to include any specific actions for breast reconstruction or risk-reducing surgery, which fall outside the category of high volume, less complex surgery. 

 

  1. Implementation of the recovery plans, including the use of independent sector providers

Breast Screening

In 2021, NHSE committed £50m to support the restoration and recovery of screening services[9].  However, at the first meeting of the APPGBC screening inquiry (March 2022) evidence presented by the Leeds BSU and insights from screening unit representatives in attendance suggested that the funding was slow to reach the frontlines and was largely spent on the additional administrative burden of the open invites system.

It was acknowledged in the NHS Breast Screening Report for 2020/21[10] that open invitations may have had a negative effect on uptake. Unfortunately, we have heard from women who were unable to get through to their local screening service or were unable to book an appointment due to lack of availability.

Initial analysis of the screening data through the recovery period in some areas of England does indicate that services which maintained or moved back to timed appointments once they were restored recorded higher uptake than BSUs still using open invitations.

NHSE recommitted to delivery of the Digital Transformation of Screening programme to help the recovery process, (originally recommended by the Richards Review of Adult Screening programmes in 2019). This update to the IT and digital infrastructure was intended to reduce the administrative burden placed on staff and improve data collection to inform local decision making. However, the timetable for delivering this has not been made clear, and the outdated technology in use continues to slow down the recovery rate of services.

In July 2022, DHSC announced in the Women’s Health Strategy that a further £10 million would be invested in the breast screening programme, including funding to provide an additional 25 new mobile breast screening units in the areas with the greatest challenges of uptake and coverage. It is unclear when that funding or additional capacity will be delivered, despite previous commitments to do so within the 2022/23 calendar year.

Breast Cancer Waiting Times

For breast cancer, the FDS does not incentivise services to deliver quicker, more efficient diagnoses as most women seen within 14 days will already have breast cancer diagnosed or ruled out well before the 28-day deadline.  75% is not an ambitious target for breast cancer and could even result in women being assessed and diagnosed more slowly over time.  Indeed, the FDS has been continuously and comfortably met for breast cancer, despite more people waiting beyond two weeks to be seen by a specialist.

We also have received feedback from some patients and clinicians that people are experiencing some long waits for subsequent primary breast cancer treatments such as radiotherapyThere have been reports of 3 - 4 month waits to start these treatments. Similarly, people with secondary breast cancer have reported long waiting times for treatment.

Breast Reconstruction

During the pandemic, dedicated ‘COVID-protected’ surgical cancer hubs were set up to enable the continued delivery of cancer surgery.[11] Local trusts are currently considering how to best deliver  new surgical hubs to meet the needs of their own populations, which we recommend include breast reconstruction.

As part of the recovery of elective services, weekend capacity also has already been used for lower priority breast surgery, such as reconstruction or risk-reducing surgery.

Depending on local availability, which is largely situated in London and the South East, it may be possible to provide additional space and time for breast reconstruction through its continued use and use of weekend capacity in both the independent sector and NHS.

 

 

 

  1. Early progress made in recovering services

Breast Screening

The NHS BSP did not meet its initial target to eliminate the backlog of delayed screening invitations by March 2022, (or their subsequent June 2022 deadline). It is unclear at this stage whether all BSUs will be able to achieve their recovery metrics by the new target of March 2023.

In 2020/21 England’s breast screening programme had the lowest level of uptake across the UK and the sharpest decline from pre-COVID levels:

Nation

Number (%) +/- from previous year (50-<71)

Uptake (%) (50-<71)

Uptake +/- from previous year

England

-39.2%

61.80%

- 7.3% point decrease

Scotland

-41.5%

75.1%

+ 3.1% point increase

Wales*

-62.7%

67.1%

- 2% point decrease

Northern Ireland

-8.6%

72.2%

- 3.8% decrease

*NHS Wales screening data for 2019/2020 has not been published - 2018/2019 data is being used to                                                                     compare performance

As of September 2022, we estimate that there are still 7,325 women living with undiagnosed breast cancer. The majority of these missing diagnoses will be as a result of the disruption to screening.

Waiting Times

For breast cancer, NHSE’s target to return the number of people waiting for longer than 62 days to the level in February 2020 by March 2022 was missed and has still not been achieved. The latest quarterly data (Q2 2022/23) shows that:

NHSE 2021/22 Operational guidance specified that “Systems will be expected to meet the new Faster Diagnosis Standard from Q3, to be introduced initially at a level of 75%.” However, the Elective Recovery Plan published in February 2022, scaled back this ambition to services meeting the 75% target by 2024.

After an initial drop in the number of people presenting to their GP with possible breast symptoms in the first months of the pandemic, we have seen referral numbers recover and surpass pre-COVID numbers, which is welcome.  However, due to lack of workforce capacity in the system to manage a significant influx of referrals, waiting times to be seen by a specialist have deteriorated. In Q1 2022/23 only 70% of those referred with suspected breast cancer met the two-week waiting time standard, with performance reaching a record low in Q4 2021/22 of 54%).

Additionally, the number of people waiting more than double the 62 day target has spiked – in September 2022, 120 people waited longer than 104 days to start treatment, compared to only 25 people in September 2019.  This is part of a wider shift towards not only a higher percentage of patients missing the 62 day target, but also the average time taken to start treatment increasing.

 

Breast Reconstruction

Hospital episode statistics (HES) analysis for breast reconstruction shows that there was a dip in activity of 64% in 2020-2021 compared to 2018-2019. Although activity did increase in 2021-2022, there was still a 34% decrease compared to 2018-2019.               

November 2022

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[1] Average total of UK invasive breast cancer cases between 2015 and 2017 (55,252). Office for National Statistics (2017) Cancer registration statistics, England. Information Services Division, NHS National Services Scotland (2015-17) Cancer statistics, breast cancer. Welsh Surveillance and Intelligence Unit (2015-17) Breast cancer. Northern Ireland Cancer Registry (2013-17) Breast cancer.

[2] Cancer Research UK analysis of Smittenaar CR, Petersen KA, Stewart K, Moitt N. Cancer Incidence and Mortality Projections in the UK Until 2035. Brit J Cancer 2016

[3] Cancer Research UK, breast cancer incidence, 2017 

[4] Updated UK Complete Cancer Prevalence for 2013 Workbook (2017). Macmillan-NCRAS Cancer Prevalence Project

[5] Maddams J et al (2012) Projections of cancer prevalence. British Journal of Cancer, 107 (7). 1195-1202

[6] https://digital.nhs.uk/data-and-information/publications/statistical/breast-screening-programme/england---2020-21#chapter-index

[7] https://breastcancernow.org/sites/default/files/breast_cancer_now_report_delivering_real_choice.pdf

[8] NHS England, 2021, Recording and reporting Referral to Treatment (RTT) waiting times for consultant led elective care, available at https://www.england.nhs.uk/statistics/wp-content/uploads/ sites/2/2021/05/Recording-and-Reporting-guidance-April_2021.pdf 

[9]https://www.england.nhs.uk/wp-content/uploads/2021/11/B0518-cancer-q4-2021-q1-2122-quarterly-report-overview-sept21.pdf 

[10] https://digital.nhs.uk/data-and-information/publications/statistical/breast-screening-programme/england---2020-21#chapter-index

[11] 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