PRESS PLAY: GETTING AND KEEPING BREAST CANCER SERVICES BACK ON TRACK

Page created by Gilbert Sherman
 
CONTINUE READING
PRESS PLAY: GETTING AND KEEPING BREAST CANCER SERVICES BACK ON TRACK
PRESS PLAY REPORT 2020

PRESS PLAY:
GETTING
AND KEEPING
BREAST CANCER
SERVICES BACK
ON TRACK

                                1
PRESS PLAY: GETTING AND KEEPING BREAST CANCER SERVICES BACK ON TRACK
PRESS PLAY REPORT 2020

2
PRESS PLAY: GETTING AND KEEPING BREAST CANCER SERVICES BACK ON TRACK
PRESS PLAY REPORT 2020

FOREWORD
                         Coronavirus is the biggest            by the disease, but they have
                         crisis that breast cancer             been deeply affected. And the
                         has faced in decades.                 fundraising that powers them
                                                               has also been hit hard, too.
                         So, to mark Breast Cancer
                         Awareness Month 2020, this            But, gradually, ‘play’ is being
                         report shares what we are             pressed for breast cancer services
                         hearing and seeing about              and research. The number of
                         the impact of coronavirus on          referrals continues to recover
                         breast cancer, including from         every month. Breast screening is
                         breast cancer patients and            restarting. The number of people
                         healthcare professionals.             beginning treatment is rising. Our
                                                               researchers are back in the lab -
                         As the number of cases of             although we have had no option
Baroness Delyth Morgan   coronavirus begins to increase        but to reduce the amount we
CEO, Breast Cancer Now   again the Prime Minister has          spend on research. And we have
                         warned that a second wave             developed new online support
                         is coming. The number of              services to continue to be here for
                         local lockdowns is increasing.        anyone affected by breast cancer.
                         There is speculation about
                         further possible measures             The resource and effort the
                         which may be introduced to            NHS has put into finding ways
                         control the virus. And concerns       to safely diagnose and treat
                         over winter pressures on the          cancer during the pandemic,
                         NHS continue to grow.                 and the knowledge we have
                                                               gained, will prove invaluable
                         Earlier this year, at the height      moving forwards. We must make
                         of the pandemic, we saw a big         sure we are well prepared for a
                         drop in the number of people          second wave. The progress that
                         being referred to see a specialist    we have made in breast cancer
                         with suspected breast cancer.         must not be allowed to stall. We
                         Screening services were paused.       cannot afford to pause again.
                         Recruitment to many clinical trials
                         was paused. And while many            This report makes a number
                         patient’s treatment continued         of recommendations to help
                         unchanged other patients saw          ensure this does not happen. We
                         delays and cancellations to their     look forward to working with
                         treatment alongside changes           governments and the NHS across
                         to the support they received.         the UK to implement them.
                         This has caused huge levels of
                         anxiety - particularly for patients
                         with incurable secondary breast
                         cancer and their loved ones.

                         Breast Cancer Now’s world-
                         class research and life-changing
                         community support services
                         are here for anyone affected

                                                                                                  3
PRESS PLAY: GETTING AND KEEPING BREAST CANCER SERVICES BACK ON TRACK
PRESS PLAY REPORT 2020

      INTRODUCTION
      THANK YOU…                 At the start of this year, as the    July and 6 August. The survey was
                                 number of coronavirus cases          conducted online and publicised
      TO EACH AND EVERY PERSON   began to grow, it became very        through our social media accounts
      AFFECTED BY BREAST         clear, very quickly that the         and other networks including
                                 pandemic would have a huge           our Insight and Experience
      CANCER WHO TOOK THE        impact on breast cancer.             Panel and Breast Cancer Voices
      TIME TO COMPLETE ONE                                            network. 2,124 people with
      OR BOTH OF OUR SURVEYS     In March, to help us understand      breast cancer responded.
                                 this impact, we asked people
                                 with breast cancer to tell us        We also spoke to 12 healthcare
                                 how coronavirus had affected         professionals from different parts
                                 their treatment and care.            of the breast cancer pathway
                                 580 people responded. Many           including radiographers, surgeons,
                                 reported that they or their loved    oncologists specialising in drug
                                 ones had experienced delays          treatment and radiotherapy, and
                                 or cancellations to treatment        clinical nurse specialists. We
                                 and monitoring scans. Others         supplemented this by looking at
                                 had not experienced any              the data available on the impact
                                 changes to their treatment.          of the pandemic, for example on
                                                                      referrals to see a specialist.
                                 To understand how people’s
                                 experiences may have changed         This report sets out what we
                                 and try to better quantify some of   found, and what we think needs
                                 the impacts we heard about, we       to happen next to tackle the
                                 ran a second survey between 9        challenges we have identified.

                                                                      Secondary breast cancer
                                                                      In Breast Cancer Awareness Month
                                                                      2019 we launched a campaign
                                                                      calling for action to address the
                                                                      challenges experienced by patients
                                                                      with incurable, secondary breast
                                                                      cancer. These include receiving
                                                                      a prompt diagnosis, access to
                                                                      treatments, information about

                                                           THANK YOU…
                                                           TO THE HEALTHCARE PROFESSIONALS
                                                           WHO GAVE THEIR TIME AND
                                                           EXPERTISE SO WILLINGLY DURING
                                                           SUCH A BUSY TIME FOR THE NHS

4
PRESS PLAY: GETTING AND KEEPING BREAST CANCER SERVICES BACK ON TRACK
PRESS PLAY REPORT 2020

                                       THE
                                       SURVEY IN
clinical trials and support from       NUMBERS
a clinical nurse specialist. Breast

                                       2124
Cancer Now is committed to
campaigning to ensure these
challenges are addressed.
                                       people with breast cancer
Our analysis of responses to           responded to the survey
our survey on the impact of
coronavirus did not find significant
differences for patients with

                                       1545
secondary breast cancer.

Back in May we highlighted that
the specific needs of patients with    had primary breast cancer,
secondary breast cancer must be        and 472 had secondary
identified and addressed in the        breast cancer, also known as
recovery plans for cancer that are     advanced, stage 4 or metastatic
being developed by governments         breast cancer. The remainder
and the NHS across the UK.1            chose to describe their
However, this will be hampered         breast cancer themselves.
by the lack of available data on
secondary breast cancer patients
– including the number of people

                                       354
living with the disease, which we
highlighted in this campaign. This
makes it extremely difficult to plan
services. We are currently calling     were diagnosed with
for a national audit of secondary      breast cancer between
breast cancer to be funded as part
of the Comprehensive Spending
                                       January and July 2020                     226
Review expected in the Autumn.                                              respondents
                                                                                from
As part of our campaign we                                                    Scotland
also highlighted that less than a
third of secondary breast cancer
patients said they regularly saw
                                               43
a clinical nurse specialist (CNS).2       respondents
Worryingly 41% of respondents                 from
to our survey felt they had less         Northern Ireland
contact with their CNS during
the coronavirus outbreak. We are                                                          1708
also calling for funding to recruit
and train more CNSs to meet                                                            respondents
the needs of all people living                                                             from
with breast cancer as part of the                                     147                England
Comprehensive Spending Review.
                                                                   respondents
                                                                       from
                                                                      Wales

                                                                                                     5
PRESS PLAY: GETTING AND KEEPING BREAST CANCER SERVICES BACK ON TRACK
DIAGNOSIS

6
PRESS PLAY: GETTING AND KEEPING BREAST CANCER SERVICES BACK ON TRACK
PRESS PLAY REPORT 2020

                                          ACROSS THE UK THERE IS LIKELY TO HAVE
                                          BEEN NEARLY 107,000 FEWER REFERRALS

    The earlier breast cancer is          A survey undertaken for NHS
    diagnosed, the more likely it is      England suggested that the           ‘The new way of triaging has
    that treatment will be successful.    main reasons people were             been positive for both staff and
                                          reluctant to come forward were       those being referred. We simply
    As the number of referrals to see     both concerns about catching         don’t have the space or the
    a cancer specialist continues to      coronavirus and giving it to their   staff to go back to the previous
    recover and the breast screening      family, as well as fears they        way of dealing with referrals.’
    programme restarts there is likely    would burden the NHS.7 Some          Nicky Roche,
    to be an influx in demand for         GPs may also have been reluctant     consultant breast surgeon
    imaging and diagnostics which         to refer people to hospital.
    threatens to overwhelm these
    services. It is vital that that the   Across the UK, the NHS launched
    recovery plans being developed by     campaigns to encourage people to
    governments and the NHS across        come forward with any symptoms
    the UK set out how this expected      that might be cancer. Whilst the
    surge in demand will be managed       number of referrals continues to
    so people are diagnosed and           increase every month, they remain
    start treatment for their breast      some way below what we would
    cancer as soon as possible.           expect in England. It is therefore
                                          important that these campaigns
    Capacity in the diagnostic            continue, particularly during any
    workforce must also be assessed,      further peaks in the pandemic.
    and plans put in place to address
    shortages, backed up with             During the pandemic referrals
    investment through the upcoming       have been triaged. Those
    Comprehensive Spending Review.        considered to be at high
                                          risk of having breast
    Referrals                             cancer are asked to come
    The number of people referred to      in for assessment, whilst
    see a specialist with suspected       those considered to be
    cancer declined dramatically          at low risk of having
    during the peak of the coronavirus    breast cancer may have
    outbreak in April, with a drop of     a follow up by phone.8
    around 70% across all cancers         It is crucial that where
    being reported in some parts          assessments are delayed
    of the UK.3 In England, between       people are monitored
    March and July 2020 there were        and followed up.
    over 95,000 fewer referrals by
    a GP for tests (whether breast
    cancer was initially suspected
    or not) compared with 2019.4 In
    Wales between March and July
    there were 2,500 fewer urgent
    suspected breast cancer referrals.5
    Full data for this period has not
    yet been published for Scotland
    and Northern Ireland. However,
    we estimate that across the
    UK there is likely to have been
    nearly 107,000 fewer referrals.6

7                                                                                                                 7
PRESS PLAY: GETTING AND KEEPING BREAST CANCER SERVICES BACK ON TRACK
PRESS PLAY REPORT 2020

                                          WE ESTIMATE THAT A SIGNIFICANT BACKLOG OF
                                          NEARLY A MILLION WOMEN REQUIRING SCREENING
                                          HAS BUILT UP ACROSS THE UK DURING THE PAUSE

      Waiting times                       Breast screening                     ‘I was diagnosed just before
      In England and Northern Ireland     The breast screening programme       lockdown. If I didn’t have
      those referred by their GP should   was officially paused in Scotland,   the screening I would still be
      have their first appointment with   Wales and Northern Ireland,          unaware of my diagnosis.’
      a specialist within two weeks.      and effectively paused in            Survey respondent
      Since April, performance against    England, in March. Screening is
      this standard has largely been      now restarting, although this is     Some measures have been
      maintained at pre-pandemic          happening more quickly in some       taken to try and ensure
      levels.9 The combination of far     parts of the country than others.    attendance at the reduced
      fewer people being referred,                                             number of appointments
      and telephone triage counting       We estimate that a significant       available. In England, from the
      as a first appointment for the      backlog of nearly a million          end of September to the end
      purposes of the two-week wait       women requiring screening has        of March 2021 women will be
      will have helped achieve this.      built up across the UK during the    sent ‘open invitations’ to call
                                          pause.10 It is currently unclear     and make an appointment for
      There is not currently a waiting    how long it will take to catch up.   screening, rather than a timed
      time target for diagnosis. 354      The number of appointments           appointment. Although women
      respondents to our survey (17%)     available has been reduced to        may be more likely to attend an
      told us that they were diagnosed    enable social distancing and         appointment they have made,
      with breast cancer between          infection prevention and control     research shows that the number
      January and July: 306 of these      measures to be implemented,          of women making appointments
      (86%) told us they received         and these arrangements will          is significantly lower than those
      a diagnosis within 3-4 weeks        need to be kept under review.        attending timed appointments.
      of being referred for tests.                                             We are concerned that this could
                                                                               worsen the persistent decline
                                                                               we have seen in uptake of breast
                                          ‘Screening diagnoses around          screening in recent years. We are
                                          19,000 breast cancers a year in      particularly concerned about the
                                          England and there has been a         impact this will have on groups
                                          delay of over 4 months in the        amongst which uptake is already
                                          programme. To not only maintain      low, such as women living in
                                          pre-pandemic levels of activity,     deprived areas and some Black
                                          but also do a huge catch up with     and Minority Ethnic (BAME) groups.
                                          inadequate workforce levels is an
                                          enormous mountain to climb.’         If open invitations are to be
                                          Mary Wilson, consultant              adopted, then measures must be
                                          breast radiologist                   taken to mitigate the potential
                                                                               impact by implementing measures
                                                                               shown to improve uptake, such
                                                                               as appointment reminders
                                                                               and letters from GP practices
                                                                               endorsing screening. They should
                                                                               also be for a limited period, as
                                                                               proposed. Outcomes must be
                                                                               carefully monitored at a local
                                                                               level. We understand that several
                                                                               services will be early adopters of
                                                                               open invitations and it is essential
                                                                               that we learn from and share the

8
PRESS PLAY: GETTING AND KEEPING BREAST CANCER SERVICES BACK ON TRACK
PRESS PLAY REPORT 2020

experience in these areas. For          Combined with a reduction in the      The new NHS People Plan for
example, in Greater Manchester          number of people that services        2020/21 in England recognised
two members of NHS staff have           will be able to see as a result of    the severe pressures the NHS
been appointed to undertake             infection prevention and control      workforce has been under during
health promotion activities,            measures, we are concerned            the outbreak – which could be
including calling women that have       that this demand threatens to         intensified if lack of access to
been invited to make screening          overwhelm services and may lead       coronavirus testing means staff
appointments, but have not,             to people waiting longer to be        must self-isolate - and set out
targeting the most deprived areas.      diagnosed and receive treatment       broad ambitions to recruit more
                                        for their breast cancer. The cancer   staff.12 However, further action
Demand for imaging                      recovery plans being developed        is urgently needed in the short
and diagnostics                         by governments and the NHS            and longer-term across the UK to
The expected increase in referrals      across the UK must set out how        ensure there is an appropriately
and backlog of women waiting for        this demand will be managed           resourced workforce. Without
breast screening will lead to an        so that this does not happen.         this recovery plans could be
increase in demand for diagnostic                                             undermined and we risk failing to
and imaging services in the                                                   achieve broader ambitions on early
coming months. The workforce                                                  diagnosis, treatment and care.
in these services was already
stretched before the pandemic.
For example, a quarter of trusts
and health boards across the UK
                                          WHAT NEEDS TO
have at least one vacant breast           HAPPEN NOW?
radiologist role, and vacancies are
set to increase as a quarter of                The NHS across the                 The UK Government must
breast radiologists are expected               UK should continue to              take immediate action
to retire over the next five years.11          encourage people who               as part of the upcoming
Many staff may also be suffering               have symptoms that might           Comprehensive Spending
from burnout from the demands                  be cancer to contact               Review to provide much-
placed on them during this time.               their GP surgery to get            needed investment
                                               them checked out.                  for recruitment in the
                                                                                  imaging and diagnostic
                                               The recovery plans for             cancer workforce.
                                               cancer being developed
‘Across the board it has                       by governments and the             If open invites are used
been extremely challenging                     NHS across the UK must             for the breast screening
for the workforce. Ultimately,                 set out how the expected           programme, uptake –
we are significantly under-                    influx of demand for               including amongst groups
resourced. The People Plan doesn’t             imaging and diagnostics            already less likely to access
go far enough, but if I’m being an             will be safely managed.            breast screening – must
optimist, every little helps. The                                                 be monitored regularly and
NHS can’t squeeze much more                    Governments and the NHS            locally, and measures to
out of us; more equipment can be               across the UK must assess          mitigate against a decline in
given but you can’t run it without             diagnostic capacity across         uptake implemented. They
a fully resourced workforce.’                  breast cancer services             should also be used for a
Dr Caroline Rubin,                             and set out a demand-led,          limited period, as proposed.
clinical radiologist                           long-term plan to ensure
                                               the workforce has enough
                                               resource and support
                                               now and in the future.

                                                                                                                  9
PRESS PLAY: GETTING AND KEEPING BREAST CANCER SERVICES BACK ON TRACK
PRESS PLAY REPORT 2020

     TREATMENT

10
PRESS PLAY REPORT 2020

                                              78%
                                            OF ALL RESPONDENTS TOLD US THEY THOUGHT
                                            THE CORONAVIRUS PANDEMIC HAD AN IMPACT
                                            ON THEIR TREATMENT AND CARE

     The NHS moved quickly to issue         In Wales performance is measured
     guidance on treating cancer safely     against the target that patients        ‘Cancer treatment didn’t stop for
     at the start of the pandemic.          should receive their first treatment    me during the outbreak, yes it
                                            within 62 days of being urgently        impacted and altered it but I am
     A significant proportion of            referred with a suspicion of cancer.    still here thanks to the NHS still
     respondents to our survey did          The number of patients starting         working through such times.’
     not experience changes to              treatment in Wales dropped              Survey respondent
     their treatment. Delays and            by over a third in April and May
     cancellations to surgery, including    compared to the same time last
     breast reconstruction, were the        year, but has now recovered,
     biggest changes reported. Many         although the percentage starting        95% of all respondents were
     respondents were concerned             treatment within 62 days has not        worried there would be continued
     about the potential impact of          been recorded since February.14         pressure on the NHS in the next
     these changes. Recovery plans                                                  12 months, and 88% were worried
     must set out how treatment                                                     there would be cancellations,
     will be safely restored to pre-        Experience of treatment                 delays and disruption to breast
     pandemic levels, and deal with         Although 78% of all respondents         cancer treatment during this time.
     the backlog. Implementation            told us they thought the
     of some beneficial treatment           coronavirus pandemic had                Surgery
     changes, like shorter courses of       an impact on their treatment            Surgery is usually the first
     radiotherapy, were accelerated by      and care, 52% described their           treatment that most patients with
     the pandemic, and these changes        experience during this time as          primary breast cancer will have.
     must be able to continue.              positive or very positive. However,     During the pandemic those with
                                            of the 1160 respondents receiving       certain types of breast cancer
     Treatment waiting times                or awaiting treatment only 43%          (triple negative and HER2 positive)
     Patients should receive their first    said they definitely felt as involved   have been prioritised for surgery.16
     treatment for cancer within 31         as they wanted to be in decisions       Some patients with hormone
     days of being diagnosed, although      about their treatment and care,         receptor positive breast cancer
     the target for this varies across      compared to 81% of breast               were started on hormone therapy
     the UK from 95% in Scotland            cancer patients responding to           following research which showed
     to 96% in England and 98% in           the Cancer Patient Experience           that in the majority of cases
     Northern Ireland. In England the       Survey in 2019 in England.15            this could safely delay surgery
     percentage of patients starting                                                for at least six months.17 Risk-
     their first treatment within 31 days   This may be related to the fact         reducing mastectomies for women
     dropped from 97% in February,          that many respondents felt they         at increased risk of developing
     March and April, to 90% in May         had less contact with healthcare        breast cancer because of their
     but recovered to 95% in July. In       professionals during this time.         family history were suspended.18
     Northern Ireland, 95% of patients
     started their first treatment
     within 31 days in May and June.13
     Data for Scotland for this period
     has not yet been published.                                 43%
     Of the 354 respondents that                               SAID THEY DEFINITELY FELT AS INVOLVED
     told us they were diagnosed
     between January and July, 62%                             AS THEY WANTED TO BE IN DECISIONS
     said that they had started their                          ABOUT THEIR TREATMENT AND CARE
     first treatment for breast cancer
     within 3-4 weeks of receiving
     their diagnosis, with a further
     17% starting within 4-6 weeks.

11                                                                                                                       11
PRESS PLAY REPORT 2020

      462 respondents to our survey        Data from NHS England shows           In the past, some Clinical
      told us they had received or         that between March and June the       Commissioning Groups (CCGs)
      were awaiting surgery during the     number of people having breast        in England have implemented
      pandemic. The majority of these      cancer surgery was at 76.3% of        restrictions on the time in
      (43%) told us there had been no      the level in the same months          which reconstruction should be
      change to their surgery. However,    in 2019.19 The reduced numbers        complete.23 There are already
      27% told us they had experienced     of people being referred and          delays of 1 to 2 years for delayed
      cancellations or delays to their     diagnosed during this time, as well   reconstruction in many hospitals.
      surgery. Some of these delays or     as some women being started           Women waiting for delayed
      cancellations may be because         on hormone therapy instead, are       reconstruction should not be
      patients started on hormone          likely to have contributed to this.   prevented from having surgery as
      therapy - or chemotherapy -                                                a result of any such restrictions.
      instead of surgery. Many patients    Breast reconstruction
      told us they had their NHS surgery   Breast reconstruction was             Of those respondents that
      in a private hospital as a result    suspended during the peak             experienced changes to their
      of agreements between NHS and        of the pandemic. Thirty per           reconstructive surgery nearly
      healthcare providers to provide      cent of women that have a             half (48%) told us they were
      COVID-safe areas for treatment.      mastectomy choose to have             unhappy with their body image,
                                           breast reconstruction and this is     and 59% were concerned that
                                           a crucial part of their treatment     they would need more operations
                                           and recovery from breast cancer.20    as they were unable to have
      ‘My surgery happened quickly         21% of respondents that were          reconstruction at the same
      as a slot in a private hospital      receiving or awaiting surgery said    time as their mastectomy.24
      was found in April. I did not have   their breast reconstruction had
      chemo beforehand but am happy        been cancelled or delayed. We
      with surgery that went ahead.’       estimate that over 1000 women
      Survey respondent                    will have missed out on immediate     ‘Patients requiring breast
                                           reconstruction, and around another    reconstruction surgery, who
                                           500 will have had their delayed       are often really vulnerable, are
                                           reconstruction delayed further.21     at the end of the queue at the
                                                                                 moment and could be waiting
      ‘Longer waiting times, location      The British Association of            a long time for their surgery’
      changes, surgeon changes,            Plastic Reconstructive and            Ruth Waters,
      having to shield for two weeks       Aesthetic Surgeons (BAPRAS)           consultant plastic and
      before, not being allowed            issued guidance in June               reconstructive surgeon and
      company, and general uncertainty     recommending that breast              president elect of BAPRAS.
      has all had an impact.’              reconstruction be restarted,
      Survey respondent                    beginning with immediate
                                           reconstruction.22 BAPRAS
                                           told us that most hospitals
                                           performing reconstructive
                                           surgery are currently restricted
                                           to between 20% and 50% of
                                           pre-coronavirus activity.

12
PRESS PLAY REPORT 2020

                                                     12% experienced delays in accessing their drug treatment,

                                       12%
                                     EXPERIENCED DELAYS IN ACCESSING THEIR
                                     DRUG TREATMENT DURING THE PANDEMIC

Overall, of those respondents        Guidance on the delivery of
who experienced changes to           drug treatment and interim            ‘My treatment was stopped at
their surgery, 61% said this had a   treatment options to provide          the beginning of lockdown but
negative impact on their emotional   greater flexibility in managing       now I’m having a new chemo
and mental health, and 62% that      cancer was quickly introduced.27      after eventually having a CT scan
it had increased their anxiety.      This included reducing the            that showed my worst fears
Just over a third were worried       course of adjuvant trastuzumab        of cancer spreading…Not only
about their cancer growing or        treatment from 12 months to 6         has this affected me physically
spreading (34%) and that they        months which had already been         but the emotional and mental
may now need more extensive          shown to be as effective, whilst      stress has been immense too.’
surgery (35%). 41% were worried      potentially reducing the risk of      Survey respondent
that the changes would impact on     patients having to stop treatment
their long-term outcomes from        due to heart problems.28
breast cancer. Many people also
told us how daunting it was to       Guidance also suggested how           ‘I think despite the shock and
have to go for treatment alone.25    patients should be prioritised for    anxiety of being diagnosed with
                                     drug treatment if this became         secondary breast cancer, I’ve
Drugs                                necessary. Patients having non-       been most fortunate in having
Drug treatment is a cornerstone      curative treatment, such as those     chemotherapy on time…..
of the breast cancer pathway.        with secondary breast cancer,         Others haven’t been so lucky.’
This is particularly the case for    were generally given a lower          Survey respondent
patients with secondary breast       priority than those having curative
cancer for whom drugs can extend     treatment.29 This was hugely
the time before their disease        concerning and we raised this
progresses and extend their lives.   with governments and the NHS          969 respondents to our survey
                                     who reiterated the importance         told us they were receiving or
During the pandemic some             of decisions being made on an         awaiting drug treatment during
patients with both primary and       individual basis according to the     the pandemic. The majority (56%)
secondary breast cancer had          risks and benefits of treatment.      experienced no change to their
their chemotherapy or targeted                                             drug treatment. 12% experienced
treatments changed or temporarily    However, the extent to which this     delays in accessing their drug
paused, primarily to protect         guidance was used in practice         treatment, 9% people received it
their immune systems. Data           is unclear. It is essential that      in a different setting, for example
from NHS England suggests that       the needs of secondary breast         at home rather than hospital, and
in April the number of people        cancer patients are identified        7% experienced changes to the
starting chemotherapy for breast     and addressed in the cancer           drugs they would normally use.
cancer fell to 61% of levels in      recovery plans that are being
April 2019. By June this had         developed, including recognising
returned to 92% of 2019 levels.26    the importance of drug
                                     treatment for these patients.

                                                                                                               13
PRESS PLAY REPORT 2020

                                             47%
                                            FELT THAT CHANGES TO THEIR DRUG TREATMENT
                                            INCREASED THEIR ANXIETY, WITH 41% STATING
                                            THE CHANGES HAD A NEGATIVE IMPACT ON
                                            THEIR EMOTIONAL AND MENTAL WELLBEING

                                            Bisphosphonates                       Radiotherapy
       ‘Locally we’ve still carried on      Post-menopausal women with            Radiotherapy is most often given
       with treatment for breast cancer     primary breast cancer may also be     in 15 doses, five days a week
       patients but there does seem to      offered bisphosphonates to help       for three weeks. Recent results
       have been some variation across      reduce the risk of breast cancer      from the FAST and FAST-Forward
       regions. We changed a small          spreading to other parts of the       trials showed that radiotherapy
       number of drug treatments after      body. Stopping bisphosphonates        could be just as effective for
       discussions with patients, but       for this purpose was included         certain patients given in fewer
       for the vast majority treatment      in the guidance on interim            but higher doses either every day
       didn’t change. For chemotherapy      treatment options during the          for five days, or once a week for
       we took over a private hospital in   pandemic issued by NICE and NHS       five weeks.32 The Royal College
       order for people to attend their     England to reduce the number of       of Radiologists recommended
       outpatient appointments which        people coming into hospital. 31       in March that the results of
       helped patients feel safer’.                                               these trials be implemented
       Mark Beresford,                      Of the 207 women who told us          in response to the pandemic.33
       clinical oncologist                  they were receiving or awaiting       80% of respondents to a survey
                                            treatment with bisphosphonates,       of radiotherapy units by Action
                                            50% told us there had been no         Radiotherapy in April said they had
                                            change in their treatment. Given      implemented these changes. 34
       Of those whose drug treatment        the most popular frequency for
       was affected as a result of the      giving IV bisphosphonates is six-
       pandemic, 39% were worried           monthly, it may be that this has
       changes would impact on the          not impacted many women. 29%
       effectiveness of their drug          said their treatment had been
       treatment, and that their            delayed. This will likely have been
       cancer would grow or spread          the case for new patients as
       as a result, with this being a       they should have a dental check-
       bigger worry for patients with       up before starting treatment
       secondary breast cancer. 43%         to help avoid a rare but serious
       of those affected by changes         side effect, osteonecrosis of the
       were worried it would impact on      jaw, and dental services were
       their long-term outcomes from        suspended during lockdown.
       breast cancer. Nearly half (47%)
       felt that changes to their drug
       treatment increased their anxiety,
       with 41% stating the changes
       had a negative impact on their
       emotional and mental wellbeing.30

14
PRESS PLAY REPORT 2020

                                   409 respondents to our survey
The breast radiotherapy            told us that they were receiving      WHAT NEEDS TO
community has embraced             or awaiting radiotherapy during       HAPPEN NOW?
the use of five doses of           the pandemic. 31% of these said
radiotherapy rather than 15.       that there had been changes
We saw a very quick move in        to the timeframe in which their         Recovery plans for
April and May towards this.        radiotherapy was being delivered,       cancer being developed
There are clear patient benefits   and 10% that their dosage had           by governments and the
– fewer visits to hospital,        been changed. 12% said that their       NHS across the UK must
with equivalent outcomes           radiotherapy had been delayed.          set out how treatment
and no worse side effects.         NHS England data suggests that          will be safely restored to
Dr Imogen Locke,                   the number of people starting           pre-pandemic levels, and
consultant clinical oncologist     radiotherapy for breast cancer          the backlog dealt with.
                                   between March and June remained         This includes women
                                   at over 90% of levels during            who were unable to have
                                   the same period of 2019.35              breast reconstruction
                                                                           during this time.
                                   Of those that experienced changes
                                   to their radiotherapy, just over a      These plans must also
                                   quarter (26%) were worried that         identify and address
                                   their cancer would grow or spread,      the needs of secondary
                                   and just over third (34%) that this     breast cancer patients,
                                   would impact on their long-term         including recognising
                                   outcomes from breast cancer. 28%        the importance of
                                   said that changes had a negative        drug treatment for
                                   impact on their emotional and           these patients.
                                   mental health, and 33% that it
                                   had increased their anxiety. 36         Women must not be
                                                                           prevented from having
                                                                           breast reconstruction
                                                                           because of any time
                                                                           limits imposed on
                                                                           these operations by
                                                                           CCGs in England.

                                                                           Some treatment changes
                                                                           introduced during the
                                                                           pandemic, including the
                                                                           reduction in the number
                                                                           of doses of radiotherapy
                                                                           and cycles of adjuvant
                                                                           trastuzumab, have
                                                                           benefits for patients
                                                                           and the NHS and
                                                                           should be enabled to
                                                                           continue with these.

                                                                                                     15
PRESS PLAY REPORT 2020

     CLINICAL
     TRIALS AND
     RESEARCH

16
PRESS PLAY REPORT 2020

                                        85%
                                      OF RESPONDENTS WERE ALSO CONCERNED
                                      ABOUT DELAYS AND DISRUPTION TO CLINICAL
                                      RESEARCH INTO BREAST CANCER

Clinical trials provide a vital       Of 92 breast cancer trials that the     at least 30%. We have also had to
opportunity for patients to access    NIHR Clinical Research Network          cancel our latest round of project
potential new treatments at an        was supporting in March 2020,           grants and PhD studentships.
early stage of their development.     50% paused recruitment, 45%             Cuts to research may in the
                                      continued and 5% closed.39 This         long-term lead to charities losing
This is particularly important for    suggests that there may have            the capacity they have built in
women with secondary breast           been relatively little disruption       their research areas, including
cancer, who often have limited        for patients that were already          being unable to support the next
treatment options available           on trials. Of the 118 respondents       generation of researchers.
to them and for whom clinical         who were receiving, or expecting
trials provide precious hope          to receive, treatment as part of        To ensure that vital research
of more time with loved ones.         a clinical trial during this time,      progress does not stall we are
Whilst there was relatively little    just under a quarter (22%) told         supporting the Association of
disruption for breast cancer          us they had experienced such            Medical Research Charities (AMRC)
patients already on clinical          disruption. However, this pause         call for match-funding from the
trials, the pause in recruitment      in recruitment will have made it        Government for future charity
to many trials will have made         more difficult to access trials,        research through the upcoming
it difficult for other patients to    and 59% of all respondents              Comprehensive Spending Review.
access them. The pace at which        were concerned about this.
clinical trials restart must be
closely monitored with further        In conversations with secondary
measures to assist with restarting    breast cancer patients they
considered if necessary. The          have pointed to the speed with
                                                                                WHAT NEEDS TO
Government should provide match       which trials for coronavirus have         HAPPEN NOW?
funding through the upcoming          been set up and are keen for the
Comprehensive Spending review         lessons from this to be applied to            The NIHR and equivalent
to protect vital charity research.    setting up clinical trials for cancer         bodies in the nations
                                      and other health conditions.                  should continue to
In March, the National Institute                                                    closely monitor the
of Health Research (NIHR)             The NIHR published a framework                restart of clinical trials
suggested that many NIHR funded       to support restarting clinical trials         and publish information
or supported studies may have         in May, which is being used across            on them, and consider
to be paused as healthcare            the UK.40 As of September 40%                 if, and what, further
professionals were asked to           of non-commercial and 57% of                  measures could be taken
prioritise frontline care and make    commercial studies were open                  to assist with this.
research facilities available for     for recruitment in the UK.41
this if asked to do so by their                                                     The Government should
employer. It also paused the site     85% of respondents were also                  match fund future
set up of new and ongoing trials.37   concerned about delays and                    charity research over
                                      disruption to clinical research               the next three years
The Medical and Healthcare            into breast cancer more broadly.              via a Life Sciences-
products Regulatory Agency            Like many other medical research              Charity Partnership
(MHRA) issued guidance                charities, the research that Breast           Fund for medical
on managing trials during             Cancer Now funds has been                     research charities.
the outbreak, including               impacted by the estimated drop in
recommendations on remote             our income. Though all our long-              The NIHR and MHRA
monitoring.38 48% of respondents      term research will continue, we               should consider how
to our survey who were receiving      have had to reduce the amount                 the speed with which
treatment through a clinical trial    of funding to the Breast Cancer               clinical trials for vaccines
said they were having telephone       Now Toby Robins Research Centre,              and treatments for
follow up and interaction             Tissue Bank, Generations Study                coronavirus have been
instead of face-to-face.              and King’s College London Unit by             set up could be applied
                                                                                    to cancer trials.

                                                                                                               17
PRESS PLAY REPORT 2020

     CARE AND
     SUPPORT

18
PRESS PLAY REPORT 2020

                                         82%
                                       OF RESPONDENTS EXPERIENCED TELEPHONE
                                       APPOINTMENTS INSTEAD OF FACE TO FACE

Living with breast cancer can be
incredibly difficult at the best       ‘Although treatment wasn’t             ‘Doing clinics in a mask and telling
of times. Good care and support        changed, the lack of supporting        someone they have cancer is
can make a real difference.            services have made it very             very impersonal and not being
                                       stressful. Also, I have been           able to maybe put a hand on
The pandemic and resulting             unable to see the oncologist           their shoulder or offer proper
changes to treatment and care          which would have been a                empathy is not very nice.’
have been a real source of anxiety     key point of reassurance.’             Nicky Roche,
for many people with breast            Survey respondent                      consultant breast surgeon
cancer. Whilst the majority of
respondents that accessed                                                     By far the biggest change in
support did so through a clinical                                             people’s care was the move from
nurse specialist (CNS), many felt      The face-to-face support services      face-to-face appointments to
they had less contact with them        provided by Breast Cancer Now          telephone appointments, with 82%
during this period. It is vital that   were suspended at the start of the     of respondents saying they had
support services are included in       pandemic, although we have been        experienced this.43 Whilst some
recovery plans. Additional funding     offering online alternatives for our   preferred this as it was quicker
to recruit and train more CNSs to      Moving Forward programme for           and easier than travelling into
meet the needs of people living        primary breast cancer, and Living      hospital, others were concerned
with breast cancer, including          with Secondary Breast Cancer           that they had not been seen in
secondary breast cancer, both          programme, as well as opening          person. Moving forward it will
now and in the future, must be         up our Someone Like Me service         be important to remember that
provided through the upcoming          to provide one-to-one support          virtual appointments will not
Comprehensive Spending Review.         for anyone with breast cancer          be the right way of interacting
                                       feeling isolated or anxious as a       with everyone, every time and
Respondents to our survey              result of the pandemic. We will        the healthcare professionals
felt the coronavirus outbreak          also be rolling out personalised       we spoke to recognised this.
had impacted on their care in          direct referrals to our services
several ways. These included           later this year, to ensure people
being unable to access services        are aware of the services Breast
such as counselling and therapy        Cancer Now provides from               ‘Just because appointments
(48%) a lack of appropriate            diagnosis onwards. Our Helpline        by phone are convenient for
follow-up support (39%) and            and Ask Our Nurse services             doctors, it doesn’t mean it is
being unable to access scans           continued to operate as normal.        best for patients. We need to
to monitor their breast cancer                                                get back to seeing patients
(35%).42 However, access to                                                   – not all of them – some of
some types of support, including                                              them, including new patients.
counselling, may have been                                                    At some stage, we all need to
difficult before the pandemic.                                                think about which appointments
                                                                              can be done appropriately by
                                                                              telephone and which patients
                                                                              need to come into hospital.’
                                                                              Andreas Makris,
                                                                              consultant clinical oncologist

                                                                                                                 19
PRESS PLAY REPORT 2020

                                              41%
                                            OF RESPONDENTS FELT THEY HAD LESS CONTACT
                                            WITH THEIR CNS DURING THIS PERIOD

                                            Personalised care                     Access to clinical nurse specialists
      ‘The total lack of face to face       Everyone with cancer should           Clinical nurse specialist’s (CNSs)
      appointments has been very            have access to personalised care,     play a crucial role in co-ordinating
      challenging to come to terms          including a needs assessment,         care and providing the information
      with. Telephone consultations         care plan and health and wellbeing    and support patients need to
      didn’t answer questions and were      information. NHS England’s Long-      manage their diagnosis and
      often at unexpected times.’           Term Plan includes an aspiration      treatment. Access to a CNS can
      Survey respondent                     that this will happen by 2021.44      make a big difference to the way
                                            The Scottish Government has           people experience their care.
      Being diagnosed and treated for       committed to this happening by        This is particularly important for
      breast cancer can be anxious          2023 and made good progress           patients with secondary breast
      and stressful at any time.            by funding the Transforming           cancer who will be on lifelong
      Many patients told us that            Cancer Care programme with            treatment and have complex
      coronavirus had an impact on their    Macmillan Cancer Support to           emotional and support needs.
      emotional wellbeing, with 60%         provide access to a support
      of all respondents to the survey      worker to assess patient’s needs      However, in a Breast Cancer Now
      feeling stressed or anxious, 58%      and link with relevant support        survey of secondary breast cancer
      being worried about the future,       services.45 Actions in the Wales      patients in 2019 only 30% said
      38% feeling isolated and 35%          Cancer Delivery Plan to support       they regularly saw a CNS, and only
      unable to plan for the future.        the delivery of person-centred        65% said their CNS had enough
                                            care include undertaking needs        time to spend with them.47 A
                                            assessments and care planning.46      Breast Cancer Now survey of CNSs
                                            Progress towards implementing         in early 2020 found that only 35%
                                            this must continue. Northern          felt that they have enough time
                                            Ireland is currently developing       to offer each secondary breast
      I have really noticed the impact of   a new cancer strategy and this        cancer patient the opportunity
      the current situation on patient’s    should also include commitments       to discuss their wider concerns
      emotional wellbeing which is          on personalised care.                 and needs in the weeks following
      really difficult. Patients may be                                           diagnosis, and even less (31%) have
      out in the community and may          Both changes to treatment and         the time to offer this as treatment
      not be supported in the same way      care as a result of the coronavirus   changes or the cancer progresses.
      they usually are or it may have       outbreak, and the emotional
      exacerbated previous issues.          impact this is having on people       Amongst the 446 respondents
      Mark Beresford,                       with breast cancer make access        to our survey who told us they
      clinical oncologist                   to a clinical nurse specialist        accessed support during this
                                            (CNS) and support services more       period, the most popular way of
                                            important than ever. The cancer       doing so was from a CNS (30%).
                                            recovery plans being developed        However, 41% of respondents also
                                            across the UK must ensure             felt they had less contact with
                                            that patient’s care and support       their CNS during this period.48
                                            needs are being met during this
                                            period, alongside restoring cancer
                                            diagnostics and treatment to pre-
                                            pandemic levels. Some services,
                                            such as monitoring scans, will
                                            be using the same equipment
                                            and staff as diagnostic scans.

20
PRESS PLAY REPORT 2020

                                     Shielding
‘BCNs [breast care nurses] are       In March people who were
                                                                          WHAT NEEDS TO
a critical point of contact…..I      identified by their clinical team
was lucky my treatment               as extremely clinically vulnerable   HAPPEN NOW?
continued, but it shouldn’t          were advised to ‘shield’. Those
be forgotten that support is         with breast cancer having              The cancer recovery
still needed for those who are       treatment that suppresses the          plans being developed
still undergoing treatment.’         immune system were likely to           by governments and
Survey respondent                    be advised to shield. Just over        the NHS across the
                                     half of respondents to our survey      UK must ensure that
                                     (52%) were advised to shield.          the care and support
                                                                            needs of patients are
There was already a shortage         Over the course of the pandemic        met during this period.
of CNSs before the pandemic.         guidance on shielding has varied
Our survey of CNSs found that        across the nations, with each          The upcoming
only one in three believed their     lifting shielding gradually. In        Comprehensive Spending
hospital had enough specialist       August the shielding programme         Review must provide
nurses to give secondary breast      was paused across the UK               the necessary additional
cancer patients the support and      as a result of the decrease in         funding to recruit and
care they need, with 82% saying      coronavirus cases. However, nearly     train more clinical nurse
this was because there are not       two thirds (65%) of respondents        specialists to ensure
enough nursing posts. In common      who were advised to shield were        that everyone with
with other parts of the workforce,   concerned about this decision.         breast cancer- including
many CNSs were redeployed                                                   those with secondary
elsewhere in the NHS during                                                 breast cancer - is
the peak of the pandemic. For                                               supported by a CNS.
example, over 400 Macmillan NHS
professionals including Macmillan                                           Progress towards
funded CNSs were redeployed.49                                              ensuring that everyone
                                                                            with breast cancer
The recent NHS People Plan for                                              has personalised care
2020/21 in England included                                                 must continue, and
350 training grants for nurses                                              commitments on this
to become cancer CNSs                                                       should be included in
and chemotherapy nurses.50                                                  the new cancer strategy
However, additional funding                                                 being developed in
is needed to recruit and train                                              Northern Ireland.
more CNSs to meet the needs                                                 Care plans should be
of people living with breast                                                reconsidered where
cancer across the UK, now and                                               necessary to take
in the future. The upcoming                                                 account of changes
Comprehensive Spending Review                                               to people’s treatment
must provide this funding.                                                  during the pandemic.

                                                                            If patients are advised
                                                                            to shield again then the
                                                                            shielding programme
                                                                            should ensure patients
                                                                            are sign posted to
                                                                            relevant emotional,
                                                                            practical and financial
                                                                            support services.
                                                                                                       21
PRESS PLAY REPORT 2020

     CONCLUSION

22
PRESS PLAY REPORT 2020

Coronavirus has affected every         The breast cancer workforce         have been. And for some
part of the breast cancer pathway.     will be critical to addressing      patients, virtual consultations
                                       these challenges. The imaging       have freed up time and removed
What we have seen and                  and diagnostics workforce was       the anxiety of going to hospital
heard about the impact of              stretched before the pandemic.      during this period. We need to
coronavirus on breast cancer,          clinical nurse specialists did      make sure that these positive
including through our survey           not have enough time to spend       changes are carried forward.
and discussions with healthcare        with patients with secondary
professionals, suggests there are      breast cancer. The upcoming         The recommendations that we
many challenges that need to           Comprehensive Spending Review       have made seek to address the
be addressed moving forward.           must provide investment for         challenges that have arisen
                                       recruitment both now and            and ensure the most is made
These include: ensuring that there     for the longer term - as well       of the positive changes, as
are clear plans in place to safely     as match funding to protect         well as helping to ensure that
manage the likely surge of demand      future charity research.            we are well prepared for any
for diagnostics and imaging as                                             further peaks of coronavirus.
referrals continue to recover and      The pandemic has resulted in
breast screening restarts; that        some positive changes. The NHS      Coronavirus has placed huge
treatments are safely restored to      moved quickly to issue guidance     additional strain on people
pre-pandemic levels and demand         on safely diagnosing and treating   affected by breast cancer. With
dealt with; that progress in breast    cancer. Some changes to drug        more challenges ahead, we
cancer research, including through     treatment and radiotherapy –        must act now to ensure that
clinical trials, does not stall; and   which benefit both patients and     breast cancer services do not
that patients have the care and        the NHS – were implemented more     have to be paused again.
support they need at this time.        quickly than they would otherwise

                                                                                                              23
PRESS PLAY REPORT 2020

      SUMMARY OF
      RECOMMENDATIONS
      Overarching                       The UK Government must take          Diagnosis
      The recovery plans for            immediate action as part of          The NHS across the UK should
      cancer being developed by         the upcoming Comprehensive           continue to encourage people
      governments and the NHS           Spending Review to provide:          who have symptoms that might
      across the UK must set out:                                            be cancer to contact their GP
                                           much-needed investment for        surgery to get them checked out.
          how the expected influx          recruitment in the imaging and
          of demand for imaging            diagnostic cancer workforce.      Governments and the NHS across
          and diagnostics will be                                            the UK must assess diagnostic
          safely managed;                  the necessary additional          capacity across breast cancer
                                           funding to recruit and train      services and set out a demand-
          set out how treatment            more clinical nurse specialists   led, long-term plan to ensure the
          will be safely restored to       to ensure that everyone with      workforce has enough resource
          pre-pandemic levels, and         breast cancer- including those    and support now and in the future.
          the backlog dealt with.          with secondary breast cancer
          This includes women who          - is supported by a CNS.          If open invites are used for the
          were unable to have breast                                         breast screening programme,
          reconstruction during this       match funding for future          uptake – including amongst
          time, who should not be          charity research over             groups already less likely to
          prevented from having these      the next three years via          access breast screening – must
          operations as a result of        a Life Sciences-Charity           be monitored regularly and locally,
          any time limits imposed on       Partnership Fund for medical      and measures to mitigate against
          them by CCGs in England;         research charities.               a decline in uptake implemented.
                                                                             They should also be used for a
          identify and address the                                           limited period, as proposed.
          needs of secondary breast
          cancer patients, including
          recognising the importance
          of drug treatment for
          these patients; and

          ensure that the care and
          support needs of patients
          are met during this period.

24
PRESS PLAY REPORT 2020

‘THE NHS ACROSS THE UK      Treatment and clinical trials         Care and Support
                            Some treatment changes                Progress towards ensuring that
SHOULD CONTINUE TO          introduced during the pandemic,       everyone with breast cancer has
ENCOURAGE PEOPLE WHO        including the reduction in the        personalised care must continue,
HAVE SYMPTOMS THAT          number of doses of radiotherapy       and commitments on this should
                            and cycles of adjuvant                be included in the new cancer
MIGHT BE CANCER TO          trastuzumab, have benefits for        strategy being developed in
CONTACT THEIR GP SURGERY    patients and the NHS and should       Northern Ireland. Care plans
TO GET THEM CHECKED OUT.’   be enabled to continue with these.    should be reconsidered where
                                                                  necessary to take account of
                            The NIHR and equivalent bodies        changes to people’s treatment
                            in the nations should continue        during the pandemic.
                            to closely monitor the restart
                            of clinical trials and publish        If patients are advised to
                            information on them, and consider     shield again then the shielding
                            if, and what, further measures        programme should ensure
                            could be taken to assist with this.   patients are sign posted to
                                                                  relevant emotional, practical
                            The NIHR and MHRA should              and financial support services.
                            consider how the speed with
                            which clinical trials for vaccines
                            and treatments for coronavirus
                            have been set up could be
                            applied to cancer trials.

                                                                                                     25
PRESS PLAY REPORT 2020

      ENDNOTES
      1    Thousands of women with secondary breast cancer                 12   We are the NHS: People Plan 2020/21 – action for us all,
           ‘fearing for survival’ amid delays to treatments, scans              NHS England, August 2020. Available at: www.england.nhs.
           and access to trials, Breast Cancer Now, May 2019.                   uk/wp-content/uploads/2020/07/We_Are_The_NHS_Action_
           Available at: breastcancernow.org/about-us/media/press-              For_All_Of_Us_FINAL_24_08_20.pdf
           releases/thousands-women-incurable-breast-cancer-
           %E2%80%98fearing-survival%E2%80%99-amid-delays-                 13		Monthly Provider Based Data and Summaries, Cancer
           treatment-scans-access-trials                                       Waiting Times, NHS England. Available at: www.england.nhs.
                                                                               uk/statistics/statistical-work-areas/cancer-waiting-times/
      2    The Unsurvivors, Breast Cancer Now, October 2019.                   monthly-prov-cwt/
           Available at: breastcancernow.org/sites/default/files/bcn_
           theunsurvivors_campaignreport_oct2019.pdf                       14   Monthly cancer waiting times, StatsWales, Welsh
                                                                                Government. Available at: statswales.gov.wales/Catalogue/
      3    NHS urges people to get cancer symptoms checked as GP                Health-and-Social-Care/NHS-Hospital-Waiting-Times/
           referrals drop by 73%, NHS England, May 2020. Available              Cancer-Waiting-Times/Monthly
           at: www.england.nhs.uk/midlands/2020/05/01/nhs-
           urges-people-to-get-cancer-symptoms-checked-as-gp-              15		Cancer Patient Experience Survey 2019, 2019 national level
           referrals-drop-by-73/#:~:text=Latest%20figures%20have%20            results, Picker. Available at: www.ncpes.co.uk/2019-national-
           revealed%20that,week%20ending%201%20March%202020                    level-results
           and Urgent medical help still available, Scottish Government,
           April 202. Available at: www.gov.scot/news/urgent-medical-      16 Association of Breast Surgery Statements on COVID19.
           help-still-available/                                              Available at: associationofbreastsurgery.org.uk/for-members/
                                                                              covid-19-resources/
      4    Monthly Provider Based Data and Summaries, Cancer Waiting
           Times, NHS England. Available at: www.england.nhs.uk/           17   Dowsett, M et al, Evidence-based guidelines for managing
           statistics/statistical-work-areas/cancer-waiting-times/              patients with primary ER+ HER2− breast cancer deferred
           monthly-prov-cwt/                                                    from surgery due to the COVID-19 pandemic. npj Breast
                                                                                Cancer 6, 21 (2020). Available at: doi.org/10.1038/s41523-020-
      5    Monthly cancer waiting times, StatsWales, Welsh                      0168-9
           Government. Available at: statswales.gov.wales/Catalogue/
           Health-and-Social-Care/NHS-Hospital-Waiting-Times/              18 Association of Breast Surgery Statements on COVID19.
           Cancer-Waiting-Times/Monthly                                       Available at: associationofbreastsurgery.org.uk/for-members/
                                                                              covid-19-resources/
      6    Estimate based on cancer waiting times data in England
           and Wales. For Scotland and Northern Ireland the average        19   Data provided by NHS England and NHS Improvement.
           percentage drop in referrals in England between March and
           July 2020 was applied to referrals between March and July       20 National Mastectomy and Breast Reconstruction Audit 2011,
           2019.                                                              The Royal College of Surgeons of England. Available at: www.
                                                                              rcseng.ac.uk/library-and-publications/rcs-publications/docs/
      7    NHS urges people to get cancer symptoms checked as GP              mastectomy-breast-4/
           referrals drop by 73%, NHS England, May 2020. Available
           at: www.england.nhs.uk/midlands/2020/05/01/nhs-urges-           21   Estimate based on data from the Audit on the number of
           people-to-get-cancer-symptoms-checked-as-gp-referrals-               women having immediate and delayed reconstruction and
           drop-by-73/#:~:text=Latest%20figures%20have%20                       updated to 2020.
           revealed%20that,week%20ending%201%20March%202020.
                                                                           22 Re-establishing breast reconstruction services, British
      8    Association of Breast Surgery Statements on COVID19.               Association of Plastic Reconstructive and Aesthetic
           Available at: associationofbreastsurgery.org.uk/for-members/       Surgeons, June 2020. Available at: www.bapras.org.uk/
           covid-19-resources/                                                media-government/news-and-views/view/re-establishing-
                                                                              breast-reconstruction-services
      9    Monthly Provider Based Data and Summaries, Cancer
           Waiting Times, NHS England. Available at: www.england.          23 Rebuilding my body: Breast reconstruction in
           nhs.uk/statistics/statistical-work-areas/cancer-waiting-           England, Breast Cancer Now, June 2018. Available at:
           times/monthly-prov-cwt/, and Northern Ireland Waiting              breastcancernow.org/sites/default/files/rebuilding_my_
           Times Statistics: Cancer Waiting Times (April - June 2020,         body_report_ june_2018.pdf
           Department of Health, September 2020. Available at: www.
           health-ni.gov.uk/sites/default/files/publications/health/hs-    24 We asked respondents that were receiving or awaiting
           niwts-cancer-waiting-times-q1-20-21.pdf                            surgery how much they agreed or disagreed with a set of
                                                                              statements about changes to their surgery. Those who
      10   Estimate based on the average number of women screened             said that the statement was not applicable to them were
           per month, and the approximate length of time the screening        excluded from this analysis.
           programme was suspended, in each part of the UK.
                                                                           25 Ibid.
      11   Clinical Radiology: UK workforce census 2019, Royal College
           of Radiologists, April 2020. Available at: www.rcr.ac.uk/
           system/files/publication/field_publication_files/clinical-
           radiology-uk-workforce-census-2019-report.pdf

26
PRESS PLAY REPORT 2020

26 Data provided by NHS England and NHS Improvement.               37 DHSC issues guidance on the impact of COVID-19 on
                                                                      research funded or supported by NIHR, National Institute for
27 Clinical guide for the management of non-coronavirus               Health Research, March 2020. Available at: www.nihr.ac.uk/
   patients requiring acute treatment: cancer, NHS England,           news/dhsc-issues-guidance-on-the-impact-of-covid-19-on-
   March 2020. Available at www.england.nhs.uk/coronavirus/           research-funded-or-supported-by-nihr/24469
   wp-content/uploads/sites/52/2020/03/specialty-guide-
   acute-treatment-cancer-23-march-2020.pdfand NHS England         38 Managing clinical trials during Coronavirus (COVID-19),
   interim treatment options during the COVID19 pandemic, May         Medicines and Healthcare products Regulatory Agency, March
   2020. Available at: www.nice.org.uk/guidance/ng161/resources/      2020 Available at: www.gov.uk/guidance/managing-clinical-
   interim-treatment-change-options-during-the-covid19-               trials-during-coronavirus-covid-19
   pandemic-endorsed-by-nhs-england-pdf-8715724381.
                                                                   39 Answer to UK parliamentary question provided by Helen
28 Earl, Prof HM et al, 6 versus 12 months of adjuvant                Whately MP on 18 June 2020.
   trastuzumab for HER2-positive early breast cancer
   (PERSEPHONE); 4-year disease-free survival results of a         40 A framework for restarting NIHR research activities which
   randomized phase 3 non-inferiority trial, The Lancet, June         have been paused due to COVID-19, National Institute for
   2019. Available at: doi.org/10.1016/S0140-6736(19)30650-6 .        Health Research, May 2020 Available at: www.nihr.ac.uk/
                                                                      documents/restart-framework/24886
29 Clinical guide for the management of non-coronavirus
   patients requiring acute treatment: cancer, NHS England,        41   NIHR shares third monthly update on implementation of the
   March 2020. Available at www.england.nhs.uk/coronavirus/             Restart Framework, National Institute for Health Research,
   wp-content/uploads/sites/52/2020/03/specialty-guide-                 September 2020. Available at: www.nihr.ac.uk/news/nihr-
   acute-treatment-cancer-23-march-2020.pdf and Coronavirus             shares-third-monthly-update-on-implementation-of-the-
   (COVID19); national guidelines for cancer treatment,                 restart-framework/25650.
   Scottish Government, April 2020.Available at: www.gov.scot/
   publications/coronavirus-covid-19-clinical-guidelines-for-      42 We asked respondents how much they agreed or disagreed
   cancer-treatment/                                                  with a set of statements about their care during the
                                                                      pandemic. Those who said that the statement was not
30 We asked respondents that were receiving or awaiting drug          applicable to them were excluded from this analysis.
   treatment how much they agreed or disagreed with a set of
   statements about changes to their drug treatment. Those         43 We asked respondents how much they agreed or disagreed
   who said that the statement was not applicable to them were        with a set of statements about their care during the
   excluded from this analysis.                                       pandemic. Those who said that the statement was not
                                                                      applicable to them were excluded from this analysis.
31   NHS England interim treatment options during the COVID19
     pandemic, May 2020. Available at: www.nice.org.uk/guidance/   44 Long Term Plan, NHS England, January 2019. Available at
     ng161/resources/interim-treatment-change-options-                www.longtermplan.nhs.uk/wp-content/uploads/2019/08/nhs-
     during-the-covid19-pandemic-endorsed-by-nhs-england-             long-term-plan-version-1.2.pdf
     pdf-8715724381.
                                                                   45 £18 million funding for cancer support workers, Scottish
32 Brunt, A M et al, Hypofractionated breast radiotherapy for         Government, August 2019. Available at: www.gov.scot/news/
   1 week versus 3 weeks (FAST-Forward): Five year efficacy           gbp-18-million-funding-for-cancer-support-workers-1/
   and late normal tissue effects results form a multicentre,
   randomized, non-inferiority phase 3 trial, The Lancet, April    46 Cancer Delivery Plan for Wales 2016-2020, Welsh
   2020, Available at: doi.org/10.1016/S0140-6736(20)30932-6          Government, November 2016. Available at: www.walescanet.
   and FAST Phase III RCT of Radiotherapy Hypofractionation           wales.nhs.uk/sitesplus/documents/1113/161114cancerplanen.
   for Treatment of Early Breast Cancer: 10 Year Results              pdf
   (CRUKE/04/015), International Journal of Radiation
   Oncology, December 2018. Available at: doi.org/10.1016/j.       47 The Unsurvivors, Breast Cancer Now, October 2019.
   ijrobp.2018.08.049                                                 Available at: breastcancernow.org/sites/default/files/bcn_
                                                                      report1_1019v2_-_final_22.11.19_0.pdf
33 Guidelines on radiation therapy for breast cancer during the
   COVID-19 pandemic, The Royal College of Radiologists, March     48 We asked respondents how much they agreed or disagreed
   2020. Available at: www.rcr.ac.uk/sites/default/files/breast-      with a set of statements about their care during the
   cancer-treatment-covid19.pdf                                       pandemic. Those who said that the statement was not
                                                                      applicable to them were excluded from this analysis.
34 Impact of COVID19 on UK Radiotherapy, Action
   Radiotherapy. Available at: ebf9be9c-890d-                      49 Written evidence submitted by Macmillan Cancer Support
   4dca-b67e-2c40c584e614.filesusr.com/ugd/                           for Health and Social Care Committee’s inquiry on Delivering
   b68571_5a27d1bd9d434ebb898facc3199de2e8.pdf                        Core NHS and Care Services during the Pandemic and
                                                                      Beyond, Macmillan Cancer Support. Available at: committees.
35 Data provided by NHS England and NHS Improvement.                  parliament.uk/writtenevidence/4582/pdf/

36 We asked respondents that were receiving or awaiting            50 We are the NHS: People Plan 2020/21 – action for us all, NHS
   radiotherapy how much they agreed or disagreed with a set          England, August 2020. Available at: www.england.nhs.uk/wp-
   of statements about changes to their radiotherapy. Those           content/uploads/2020/07/We_Are_The_NHS_Action_For_All_
   who said that the statement was not applicable to them were        Of_Us_FINAL_24_08_20.pdf
   excluded from this analysis.

                                                                                                                                     27
You can also read