DELIVERING REAL CHOICE: THE FUTURE OF BREAST RECONSTRUCTION IN ENGLAND - Breast Cancer Now
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BREAST CANCER NOW DELIVERING REAL CHOICE
DELIVERING
REAL CHOICE:
THE FUTURE
OF BREAST
RECONSTRUCTION
IN ENGLAND
1BREAST CANCER NOW DELIVERING REAL CHOICE
INTRODUCTION
CONTENTS
3 Foreword from our Chief Executive, Baroness Delyth Morgan
4 Summary of recommendations
5 Acknowledgements
6 Introduction
8 Patient information and joint decision making
Barriers to informed choices and shared decisions
Why personal decisions need professional support
12 Access to reconstruction and types of surgery
Service structures that minimise choice
A lack of capacity for free flap reconstruction
Payment systems to reflect the true cost of surgery
Restricting access to reconstruction locally
18 Impact of the pandemic on reconstruction and risk-reducing services
Pausing and restarting services
Deprioritising reconstructive surgery
The impact on patients
Pandemic recovery and continued deprioritisation
Specific ways to help
Dedicated elective surgical hubs
Continued use of the independent sector and weekend capacity
A reconstruction rota
Improving data collection
24 Conclusion
24 Appendix
Methodology and data sources
Breast surgery key terms
2BREAST CANCER NOW DELIVERING REAL CHOICE
FOREWORD
Breast reconstruction, for those In some local areas, there are
who choose it, is a core component additional restrictions that limit the
of a patient’s recovery, either from timeframe for reconstruction, or
breast cancer or from risk-reducing the number of surgeries a woman
surgery. It is not a superficial or can have. This creates a postcode
aesthetic choice; it’s reconstructing lottery for patients, and additional
a woman’s body and identity pressure for those who see their
after they have been unravelled window of opportunity closing.
by treatment and surgery.
This experience of being stuck in
Women therefore must be limbo can cause anxiety, feed a
able to access the right type of loss of self-esteem and identity,
reconstruction for them, at the and hinder the ability for women
right time for them. But all too to rebuild their lives, knowing
Baroness Delyth Morgan often, this access is being denied. their treatment is incomplete.
Chief Executive, Breast
Cancer Now Some women aren’t getting the As the NHS seeks to recover
support they need to make an from the backlog of surgery that
informed decision about the built up during the pandemic, we
right type of surgery for them. must address these failings and
Others are aware of the options put breast reconstruction on a
that are suitable for them but much sounder footing. This means
are experiencing difficulties in delivering informed and equitable
accessing a type of reconstruction access to breast reconstruction
called free flap. As a result, services for all those who choose
some women may be opting for them, both now and in the future.
surgeries they wouldn’t otherwise
have chosen, while others are The following report builds
having to put up with significant on robust research to outline
delays, made even worse by how this can be achieved.
the COVID-19 pandemic.
Baroness Delyth Morgan
Chief Executive, Breast Cancer Now
3BREAST CANCER NOW DELIVERING REAL CHOICE
SUMMARY OF
RECOMMENDATIONS
Women must be given Capacity to perform free flap breast All local restrictions on breast
information about the different reconstruction must be increased. reconstruction must be removed
types of reconstruction and NHS England should work in • NHS England should direct ICSs
supported to make the decision partnership with Cancer Alliances to remove any local restrictions
that is right for them. and Integrated Care Systems to: on breast reconstruction in
As part of the update and • Increase the number of their areas, including time
delivery of the revised NHS Long trusts that provide free limits, and limits on the number
Term Plan, NHS England should flap reconstruction or type of procedures.
require Cancer Alliances to:
• Ensure that surgeons have
• Further support the the necessary theatre space, The backlog and long delays
implementation and delivery theatre and ward teams facing those awaiting breast
of shared decision-making to provide this surgery. reconstruction or risk-reducing
tools for breast reconstruction, surgery must be addressed.
such as PEGASUS. • As part of the upcoming 15- NHS England should:
Year Workforce Plan, NHS • Incorporate breast reconstruction
• Promote patient information on England should undertake within the Referral to Treatment
breast reconstruction, such as regular modelling of the breast target, so the timescales
Breast Cancer Now’s resources.1 surgery workforce, including for recovery set out in NHS
plastic and breast surgeons, to Elective Recovery Plan apply
• Require Patient Reported identify the numbers needed to it, and long waits are
Outcome Measures (PROMs) to to meet the demand for breast eliminated moving forward.
be collected, for example via reconstruction, both now and
the BreastQ questionnaire for in the longer term. And the • Work with Breast Cancer Now,
all reconstruction surgery.2 Government must provide the the Association of Breast Surgery
multi-year funding necessary (ABS) and the British Association
to ensure that this workforce is of Plastic Reconstructive and
Services must be structured in recruited, trained, and retained. Aesthetic Surgeons (BAPRAS) to
a way that enables patients to establish a plan of recovery for
access the type of reconstruction breast reconstruction services.
that is right for them. The payment for breast
• NHS England should require reconstruction must reflect • Support Cancer Alliances and
Integrated Care Systems (ICSs) the true cost over time. ICSs to introduce or continue
and Cancer Alliances to ensure • NHS England’s upcoming new to deliver initiatives to address
that arrangements are in place NHS payment scheme, including the backlog, such as dedicated
for patients to access all types its rules and pricing, should elective surgical hubs, continued
of breast reconstruction, through reflect the full, long-term cost use of the independent sector,
the 2023-2024 NHS Priorities and of breast reconstruction. and reconstruction rotas.
Operational Planning Guidance
and the upcoming Cancer Plan.
Consistent data must be collected
• This should include oncoplastic on the number of patients waiting
multi-disciplinary teams (MDTs), for breast reconstruction and
which should include plastic risk-reducing surgery, and how
surgeons, or parallel clinics, long they have been waiting,
and clear referral pathways, for both locally and nationally.
example through hub and spoke • NHS England should also
models. Where necessary, these include breast reconstruction
arrangements will need to work in the single integrated audit
across Cancer Alliances and ICSs. programme for breast cancer.
4BREAST CANCER NOW DELIVERING REAL CHOICE
ABOUT
BREAST CANCER NOW
We’re Breast Cancer Now, the research and support charity. We’re the
place to turn to for anything and everything to do with breast cancer.
The brightest minds in breast cancer research are here. Making life-
saving research happen in labs across the UK and Ireland. Support
services, trustworthy breast cancer information and specialist nurses
are here. Ready to support you, whenever you need it. Dedicated
campaigners are here. Fighting for the best possible treatment,
services and care, for anyone affected by breast cancer.
Why? Because we believe that by 2050, everyone diagnosed
with breast cancer will live – and be supported to live
well. But to create that future, we need to act now.
WHATEVER YOU’RE GOING THROUGH.
WHOEVER YOU ARE.
WE’RE HERE.
ACKNOWLEDGEMENTS
We’d like to thank all the people We’d also like to thank the Thank you also to Tracey Irvine,
who participated in our survey, leadership and members of the Senior Clinical Advisor for the
along with the women whose ABS and BAPRAS who participated Getting it Right First Time (GIRFT)
stories we have referenced in our reconstruction summit work on breast surgery, which
throughout this report. and subsequent engagement, highlights the issues with access
particularly Professor Chris to breast reconstruction.
Your experiences and insights Holcombe and Ms Ruth Waters.
have shaped and deepened Your clinical expertise and Finally, we’re grateful to the
our understanding and brought knowledge have been vital healthcare professionals who
home the importance of in developing this report. we’ve spoken to and engaged
informed access to breast with throughout the project. Your
reconstruction at the right time perspectives have been invaluable
and in the right place. Thank you. to understand the regional
variation of breast reconstruction
services across England.
5BREAST CANCER NOW DELIVERING REAL CHOICE
INTRODUCTION
For those who choose it, breast Right now, some women are not
reconstruction is an important being offered reconstruction at BREAST CANCER
part of recovery from breast all, while others are being given NOW AND BREAST
cancer, or risk-reducing surgery. only limited options and very RECONSTRUCTION
It’s not a superficial procedure, little say in how their care is
it is rebuilding their body and is being planned and delivered. We have long promoted the
integral to regaining their sense of importance of body image
self and improving their wellbeing. While there are pockets of best after breast cancer. One of
practice in delivering breast the ways we have done this
Through our survey, we found reconstruction, these must now is by advocating for access
that of 1,246 people who either be replicated, wherever necessary to different types of breast
underwent reconstruction surgery or appropriate. And further action reconstruction, as well as
or were waiting for it more than 9 must be taken to ensure that all symmetrisation or balancing
in 10 (92%) felt reconstruction was women who want reconstruction surgery in previous reports,3
an important part of their recovery. can make an informed choice including My body, myself
about the type of surgery that is and Rebuilding my body,4
Breast reconstruction is right for them and then access which also highlighted local
also important to those who that surgery when they want it, variations in the availability
either had or were waiting wherever they happen to live. of reconstruction services.
for risk-reducing surgery. We have also commissioned
This report includes pragmatic research and hosted events
Of those from our survey with recommendations for how these which have explored with
experience of risk-reducing surgery, outcomes can be achieved, women how breast cancer has
75% had breast reconstruction. alongside the experiences impacted on their body image.5
of women who illustrate the
Despite this being such a high importance of patient choice We have worked with ABS
priority for the women involved, and good communication at and BAPRAS to develop
we know, from existing research, every stage of breast surgery commissioning guidance for
our own survey, the freedom and reconstruction. reconstruction6 and the GIRFT
of information (FOI) requests review of breast surgery across
we put into hospital trusts, England, which identified
and our reconstruction summit best practice and areas of
with healthcare professionals, improvement for breast
that not everyone in England reconstruction services.7
has equal access to breast
reconstruction services, or even to
information about their options.
In some areas, limits are still The majority of women
being placed on the amount of choose not to have breast
time a woman has to request a reconstruction after a
reconstruction, or the number of mastectomy for breast
operations she can have. Plus, FELT RECONSTRUCTION cancer. They may choose
reconstruction services are still WAS AN IMPORTANT PART to use a breast prostheses
in various states of recovery OF THEIR RECOVERY or to live flat. These are
after being disrupted by the very personal decisions.
COVID-19 pandemic, with many
still struggling with long delays.
6BREAST CANCER NOW DELIVERING REAL CHOICE
BREAST Around 30% of women
RECONSTRUCTION diagnosed with breast cancer
KEY STATISTICS have a mastectomy.8
When women have their
reconstruction varies. Nationally
27% of women who have a single
mastectomy for cancer have an
immediate reconstruction.9 Our
30% HAVE A survey found that, of those who
MASTECTOMY opted for reconstruction, 64%
had immediate reconstruction
and 35% either had or were
awaiting delayed reconstruction.
There is also variation in the
type of breast reconstruction.
There were around 2,000 free flap
reconstructions conducted each
year between 2015 and 2018, of
which 650-700 were immediate
and the rest were delayed.10
ONLY 40 OUT OF Yet not all hospitals provide free
130 (30%) TRUSTS flap reconstruction. Of around
PROVIDE FREE FLAP 130 trusts in England with breast
RECONSTRUCTION units, only around 40 trusts
provide free flap reconstruction.11
The pandemic has severely
impacted breast reconstruction.
in 2020-2021 there was a 64%
decrease in breast reconstruction
activity compared to 2018/19.12
Breast reconstruction surgeries have
34% DECREASE not yet recovered to pre-pandemic
levels, in 2021-2022 there was a 34%
IN BREAST decrease in breast reconstruction
RECONSTRUCTION activity compared to 2018-2019.13
ACTIVITY IN We know from the experiences
2021-2022 of those who have had or are
COMPARED TO waiting for breast reconstruction
2018-2019 this has a huge impact.
7BREAST CANCER NOW DELIVERING REAL CHOICE
PATIENT INFORMATION
AND JOINT
DECISION MAKING
Everyone who is considering
breast reconstruction, whether Our survey found 7 in 10 (71%)
as part of, or after surgery for respondents were offered
breast cancer, or to reduce their breast reconstruction.
risk of the disease, must be able
to make an informed decision Only around 6 in 10 of those
about their surgery. This means who had or were waiting
73%
understanding all of the options for surgery for breast
available, which will be suitable cancer (65%) ‘definitely’ felt
for them, and being supported involved in decision making
to make the right choice by a as to whether or not to have
specialist healthcare professional. reconstruction surgery.
FELT IT WAS IMPORTANT
This type of shared decision And of those who had or TO BE AWARE OF
making is central to ‘personalised were waiting for breast THE DIFFERENT
care’, which recognises the need reconstruction, only around OPTIONS AVAILABLE
for people to have choice as well half (53%) ‘definitely’ felt
as control over the way that their they were offered the full
care is planned and delivered, range of reconstruction For example, women may need
based on what matters to them.14 options, while around 1 in to decide whether to delay
10 (12%) felt they were not reconstructive surgery or to have
Our survey found that more than offered all the options. an immediate reconstruction, and
7 in 10 women (73%) who received whether to have an implant or to
breast surgery or were waiting for Almost 1 in 5 (19%) of the use tissue from other parts of the
it, felt breast reconstruction was women who had or were body, known as ‘free flap’ surgery.
extremely important to be aware awaiting breast reconstruction
of the different options available. felt they were unable to To ensure they make an informed
access support as part of decision, women must know how
Having this support is especially decision making around their different types of reconstruction
important in the area of breast breast reconstruction. may look and feel, how long it
reconstruction, given all of the might take to recover, and how
complex decisions involved, many operations may be involved,
especially as these decisions as well as potential complications.
often need to be made They should also be made
during cancer treatment. aware of the evidence on the
short and long-term outcomes
of each type of reconstruction,
including patient satisfaction with
them.15 Plus, women may have
preferences to factor in around
when and where the surgery can
be arranged, and what’s available
closest to home. And they must
be given this information in the
way that best suits them.
It’s all of these things together that
determine what is right for them.
8BREAST CANCER NOW DELIVERING REAL CHOICE
Barriers to informed choices Why personal decisions need
and shared decisions professional support THE PEGASUS
Despite the complex picture and While options relating to breast TOOL
the recognised importance of reconstruction can depend
personalised care, not all patients on a patient’s circumstances, The PEGASUS tool was
are being given the opportunity especially in regard to previous developed by psychologists
to participate in decisions about treatment, or the presence of at the Centre for Appearance
their own bodies – or even other diseases or conditions Research, University of
offered reconstruction at all. (known as co-morbidities), the West of England at
healthcare professionals should Bristol, and part funded
Our survey found when people offer all suitable options so that by Breast Cancer Now to
are uninformed or unable to individuals are able to participate assist those considering
participate in decisions about in decisions about their own care. breast reconstruction.
their own care, it is not only Patients work with a trained
damaging to them, but also out However, some healthcare PEGASUS coach to discuss
of line with clinical guidance. professionals may only offer certain their expectations and goals
options to patients, such as implant specific to reconstructive
NICE guidelines recommend that based surgery. This may be because surgery, which are then used
healthcare professionals discuss free flap reconstruction is not to guide their consultation with
with their patients different available locally, or they may be a reconstruction surgeon.
breast reconstruction surgery concerned about whether patients
options and what they involve, will be able to access immediate In a trial, women who used
including the benefits and risks, free flap surgery within the cancer the PEGASUS tool reported
as well as the timing of breast waiting time targets. These are 62 less regret about their decision
reconstruction surgery, offering days from GP referral, or 31 days in the short term as well as
both immediate and delayed from a decision to treat, either as an improvement in quality
reconstruction, regardless of a first or subsequent treatment.20 of life in the longer term,
what is available locally.16 Also, they may not have the when compared with patients
knowledge and skills necessary to who received standard
The NHS Constitution for England approach shared decision making. care without PEGASUS.24
also commits to enabling
patients to participate in their It’s vital then that healthcare
own healthcare decisions and professionals, including surgeons,
to support them in making an are supported in this area.
informed choice.17 Indeed, one Particularly as there is evidence
of the Women’s Health Strategy to suggest that people with
for England ambitions is to breast cancer can feel a strong
embed personalised care and alliance with their surgeon
shared decision making into all after their first meeting. This
areas of women’s health.18 highlights the important role
healthcare professionals play in
Despite these ambitions, our survey supporting decision making.21
reveals that the commitment made
in the NHS Long Term Plan - that
by 2021, where appropriate, every
person diagnosed with cancer
will have access to personalised
care - is not being met.19
9BREAST CANCER NOW DELIVERING REAL CHOICE
‘IN THE END, I WAS SO UPSET WITH
THE WHOLE THING, I TRANSFERRED
TO ANOTHER TRUST WHERE MY
EXPERIENCE WAS FANTASTIC.’
HELEN’S STORY
‘YOU CAN’T HAVE
THAT DONE HERE’
Helen wanted to have DIEP legwork herself to support the
flap reconstruction as it suited referral to another trust: ‘I found
her personal and clinical the surgeons I needed. I was
circumstances best. She never constantly ringing the secretaries
thought she’d have to self-refer to get myself slotted in and
to another trust to access it. chasing letters all of the time...’
Helen was keen to understand Helen felt she was extremely
her options: ‘I knew I had to have well cared for despite some
surgery but for my own peace complications from her
of mind, needed to do my own reconstruction, particularly by
research, before discussing the the staff who treated her. She
options with the consultant’ she also received good follow-up
says. ‘I just thought… the best support following surgery.
outcome from this would be if they
could do my reconstruction from ‘It felt selfish that I wanted
my stomach.’ But when she spoke my body image back’
to her doctor about wanting to
have DIEP and TUG Flap surgery, ‘I thought after, when I
she was shocked by his reaction. looked back at myself, it felt
selfish that I wanted my body
‘I spoke to the doctor… and he image back,’ says Helen.
said “If you want that done -
you’ll have to go abroad, I can’t ‘But it becomes more important
do that.” My research and my that you have the right surgery
knowledge of the procedure for the reconstruction.’
options were also dismissed. I was
there with my partner. We both Fortunately, Helen was able to
were aghast at what he’d said.’ find the right solution for her.
But it was an uphill struggle.
‘In the end, I was so upset with
the whole thing, I transferred to
another trust where my experience
was fantastic. It put everything into
perspective. It made me realise
I had been very badly treated.’
This wasn’t an easy process. Helen
did all the research and all the
10BREAST CANCER NOW DELIVERING REAL CHOICE
To provide appropriate support, It’s also vital that women’s
healthcare professionals must experiences of breast RECOMMENDATION:
be equipped with the tools reconstruction are collected and
they need to work effectively shared via PROMs; something that
with patients. For example does not happen routinely for Women must be given
the Patient Expectations and this type of surgery. This enables information about the different
Goals: Assisting Shared Decision healthcare professionals and types of reconstruction
Understanding of Surgery patients to understand the impact and supported to make the
(PEGASUS) tool – is designed to of the treatment and care provided decision that is right for them.
help women and their clinicians to inform shared decision making.
clarify expectations around As part of the update and
reconstructive surgery, evaluate However, even where all suitable delivery of the revised
the options, and jointly decide options for breast reconstruction NHS Long Term Plan, NHS
on the best approach to take.22 are offered, and shared decision England should require
making is used, the other issues at Cancer Alliances to:
Healthcare professionals can play may impact the choices that
also be supported to deliver patients make. For example, they • Further support the
better shared decision making, may be put off free flap surgery implementation and
though training to develop because it is not available locally, delivery of shared
their communication skills and or because of how long they may decision-making tools for
the provision of good quality have to wait for it. If patients breast reconstruction,
information, such as our are to be offered real choice, such as PEGASUS.
reconstruction resources.23 then alongside shared decision
making, these issues must be • Promote patient information
addressed. This is considered in on breast reconstruction,
the next section of this report. such as Breast Cancer
Now’s resources.25
• Require PROMS to be
collected, for example via
the BreastQ questionnaire
for all reconstruction
surgery.26
11BREAST CANCER NOW DELIVERING REAL CHOICE
ACCESS TO
RECONSTRUCTION
AND TYPES OF
SURGERY
in some trusts – and that was
Women must be able to access before COVID-19 hit. The problem
the right type of reconstruction has not gone away, as you can
for them, whether they want see in the next section of this
the surgery straightaway report, which explores the impact
or choose to delay it. of the pandemic in more detail.
However, the Getting It Right Unsurprisingly, our survey also
First Time (GIRFT) review of found that not everyone who
breast surgery across England, responded was able to access
1/2
found huge variation in both the right reconstruction for
the timing and type of breast them at the right time.
reconstruction being undertaken,
that is unlikely to result solely Our survey found that of those
from patient choice. For example: respondents who had or were
waiting for breast reconstruction, LESS THAN HALF THE
• When it comes to timing, 9% felt they weren’t able to TRUSTS INVITED PLASTIC
around 1 in 4 women (27%) access their preferred type of SURGEONS TO PROVIDE
who have a single mastectomy reconstruction, and over 1 in RECONSTRUCTION
due to breast cancer have an 10 (15%) felt they were unable EXPERTISE
immediate reconstruction.27 to access reconstruction at
However, this varies hugely the right time. Additionally, Less than half the trusts
between trusts - from as few 15% felt they were not able visited by the GIRFT
as 3% to as many as 75%.28 to access symmetrisation breast surgery team had
or balancing surgery. oncoplastic MDTs. And only
• When it comes to type, more half of them had invited
than 1 in 5 reconstructions What all these figures suggest a plastic surgeon to join
use free flap surgery. However, is that many women who want it to provide expertise in
this number also varies an immediate reconstruction free flap reconstruction.43
78
from trust to trust.29 may be compromising and
choosing implant surgery or
Variations in the type of delaying their reconstruction,
reconstruction used can be due to ensure they can have free
to what is available locally. In the flap surgery. These choices may
estimated 40 trusts that have a not be right for them, and they ADDITIONAL PLASTIC
free flap service,30 approaching half may feel dissatisfied with the SURGEONS ARE REQUIRED
(45%) of immediate reconstructions results in the longer term.
are undertaken using this method.
Whereas in trusts that do not There are a number of
have a free flap service, less interrelated factors that can
than a third (30%) of immediate affect access to surgery.
reconstructions are free flap.
These include whether a trust
According to BAPRAS,31 this limited has a free flap service, the way
capacity for free flap surgery services are structured, the
had resulted in waiting times for reconstruction workforce, and
reconstruction of up to two years the way surgery is paid for, as
well as additional restrictions
that may be applied locally.
12BREAST CANCER NOW DELIVERING REAL CHOICE
Service structures that
minimise choice HUB AND SPOKE MODEL
While most trusts have breast
surgeons, trained in breast
cancer surgery and some types of
breast reconstruction (known as Queen Victoria Hospital (QVH) in hospital, minimising their travel
oncoplastic surgeons), free flap East Grinstead is a specialist NHS to QVH. The QVH consultant
surgery typically requires the skills hospital which provides breast plastic surgeons also participate
of a plastic surgeon as oncoplastic reconstructive surgery through in a joint oncoplastic MDT
surgeons are not trained in the a hub and spoke model. They with other hospitals from
micro-surgical techniques required work with 19 hospitals across the catchment area such as
for this type of reconstruction. Kent and Medway Cancer Alliance Royal Surrey County Hospital
and Surrey and Sussex Cancer & University Hospitals Sussex
However, not every trust that Alliance. The hospital provides in Worthing and Chichester.
undertakes breast surgery also a range of different types of The QVH provides patients
delivers plastic surgery, with only reconstruction, including options with information on the
an estimated 40 out of around for free flap reconstruction different surgeries and hosts a
130 trusts that have breast such as deep inferior epigastric reconstructive support group
units currently having a free flap perforator (DIEP) flap, transverse through the charity Restore
service.32 Outside of these areas, upper gracilis (TUG) or L-shaped in the format of ‘show and
patients will often need to be upper gracilis (LUG) flap. tell’ information events. These
referred to another trust to access They also do more complex events enable patients to
this type of reconstruction, and reconstructions such as stacked find out further information,
their referral may not be accepted and bipedicled, and bilateral view reconstructive results
due to waiting lists or costs. breast reconstructions. and decide on the surgery
which is right for them.
In addition, trusts may not have Patients in the region are
a MDT which specifically looks able to access free flap Over half of the
at breast reconstruction (also breast reconstruction which reconstructions undertaken
known as an ‘oncoplastic MDT’). is not provided in their local at QVH are immediate breast
This means the opportunity for hospital by having their breast reconstructions, with the
healthcare professionals to explore reconstruction at QVH. This is other half being delayed
different reconstruction options for delivered by QVH’s nine plastic reconstructions and risk-
their patients may be being missed. surgery consultants specialising reducing surgery. Patients are
in breast reconstruction who able to return to QVH for follow
In order to provide a service which hold clinics at both QVH and in up clinics or see their surgeon in
supports women to access all types ‘spoke’ clinics in various hospitals the ‘spoke’ clinics. If they have
of reconstruction in a timely manner, across Kent, Surrey, and Sussex. any problems following their
we need to improve collaboration These clinics are either delivered surgery, the hospital’s breast
between breast and plastic surgeons, in parallel with gene carrier or reconstruction clinical nurse
and trusts and ensure that plastic oncology clinics, or provided as specialists support and triage
surgery expertise is provided for separate plastic surgery clinics. patients over the phone/virtually
each trust. This could include joint or This means that patients can to avoid additional travel.
parallel clinics involving both breast have consultations at their local
and plastic surgeons, or oncoplastic
MDTs involving plastic surgeons from
outside as well as inside the trust.33
13BREAST CANCER NOW DELIVERING REAL CHOICE
Regions could also create a hub A lack of capacity for free
and spoke model, where ‘spoke’ flap reconstruction RECOMMENDATION:
trusts could refer their patients As set out earlier in this section
to a regional ‘hub’ for free flap of the report, it is estimated
Capacity to perform free
reconstruction.34 This would that only around 40 trusts out of
flap breast reconstruction
support the development of a well the 130 trusts with breast units
must be increased.
networked referral pathway that provide free flap reconstruction.
enables patients to access the Some women may not wish NHS England should work
support they need more easily. to travel to access free flap in partnership with Cancer
reconstruction. Others may be put Alliances and Integrated
off by long waiting lists in trusts Care Systems to:
that do provide this surgery.
RECOMMENDATION: • Increase the number of
Furthermore, in addition to the trusts that provide free
Services must be structured shortfall in staff across the broader flap reconstruction.
in a way that enables breast cancer workforce, there
patients to access the is specifically an insufficient • Ensure that surgeons have
type of reconstruction number of plastic surgeons to the necessary theatre space,
that is right for them. deliver the amount of free flap theatre and ward teams
reconstructions needed. to provide this surgery.
• NHS England should require
ICSs and Cancer Alliances to A recent UK-wide study estimates • As part of the upcoming 15
ensure that arrangements that an additional 78 plastic Year Workforce Plan, NHS
are in place for patients surgeons are required just to England should undertake
to access all types of meet current demand for free regular modelling of the
breast reconstruction, flap breast reconstruction.35 breast surgery workforce,
through the 2023-2024 NHS including plastic and breast
Priorities and Operational To compound this shortfall, the surgeons, to identify the
Planning Guidance and the training for new surgeons was numbers needed to meet
upcoming Cancer Plan. disrupted during the pandemic,36 the demand for breast
when surgeries were postponed, reconstruction, both now
• This should include and many surgical and plastic and in the longer term.
oncoplastic MDTs, which trainees were redeployed to And the Government
should include plastic other parts of the NHS. must provide the multi-
surgeons, or parallel year funding necessary
clinics, and clear referral to ensure that this
pathways, for example workforce is recruited,
through hub and spoke trained, and retained.
models. Where necessary,
these arrangements will
need to work across Cancer
Alliances and ICSs.
14BREAST CANCER NOW DELIVERING REAL CHOICE
Payment systems to reflect
the true cost of surgery ALISON’S STORY
The Health and Care Act 2022 ‘IT WENT ON AND ON…’
requires NHS England to publish a
new payment scheme which will After breast cancer surgery and
replace the current national tariff.37 radiotherapy, Alison felt that a
The new scheme will provide delayed DIEP flap reconstruction
single, joined-up pricing structures would be best for her. But
covering entire care pathways. This she had no idea just how long
is vital for breast reconstruction, she would have to wait.
as patients may require further
treatment. For example, the ‘I literally thought I would be
long-term cost for free flap and having my reconstruction within
implant reconstruction is similar, 12 months’, says Alison: ‘That
£10,779 for free flap and £10,180 for was the bit that I found very
implant-based reconstruction due hard to mentally process… the
to the greater number of follow up fact that it went on and on.’
procedures required for implant
reconstruction. But the initial cost
for implant-based reconstruction ’I UNDERSTOOD ‘I feel like there wasn’t really
anyone to turn to because I’d
is £3,824 and for free flap is THAT I DIDN’T finished my treatment. I think
NEED THE
£6,458.38 NHS England must a lot of people say the same:
take this opportunity to ensure you’re supported amazingly
the costs of the reconstruction
pathway are properly reflected.
SURGERY, through treatment, but of course
that comes to an end… and
BUT IT WAS you kind of feel a bit “left”’.
RECOMMENDATION: STILL QUITE ‘I understood that I didn’t
HARD TO need the surgery, but it was
still quite hard to get on
The payment for breast
reconstruction must reflect
GET ON WITH with your life in between.’
the true cost over time. YOUR LIFE IN In the end, it took almost
NHS England’s upcoming
new NHS payment scheme,
BETWEEN.’ three and a half years
for Alison to receive her
including its rules and reconstruction. And she had
pricing, should reflect the to change plastic surgeons
full, long-term cost of too, as the one she should
breast reconstruction. have had was just too busy.
Fortunately, Alison feels
her surgeon turned out
to be ‘fantastic’.
‘It really did give me 100%
of my confidence back.
Probably more so.’
15BREAST CANCER NOW DELIVERING REAL CHOICE
Restricting access to Main types of restrictions Number – limits on the number
reconstruction locally on breast reconstruction of reconstruction surgeries a
Our 2018 report Rebuilding my Time - a deadline on the time patient can access. While every
body highlighted that some available for women to access effort should be made to ensure
Clinical Commissioning Groups reconstruction after their breast the best outcome for every
(CCGs) across England were cancer or risk-reducing surgery. patient, with as few procedures
placing restrictions on breast This has a negative impact as possible and surgeons
reconstruction.39 Our 2022 FOI on women who would rather aiming to minimise the need for
request and further analysis delay their surgery and who adjustments,40 patients should not
found that some of these may feel pressured to have be penalised if further surgery is
restrictions are still in place. surgery before they are ready required. Breast reconstruction is
a complex process and multiple
We found there are 16 trusts • Our FOI data showed most operations may be needed, either
that are currently operating time limits were for five because of complications or to
under restrictions, with 7 having years following either cancer achieve a satisfactory result
a combination of restrictions treatment or following initial
with limits on both the time reconstruction surgery • Our FOI data shows that
and number of procedures. most restrictions were
for up to 3 procedures
This was also highlighted in our
survey, which found that almost
1 in 5 respondents (19%) felt they
had encountered such restrictions.
Number of hospitals trusts
with local restrictions
Both proceedure
and time limits
5
Procedure limits only
Time limits only
7 Unclear restrictions
2
2
16BREAST CANCER NOW DELIVERING REAL CHOICE
Type – limits on symmetrisation either the number of procedures
or balancing procedures if the or access to balancing surgery
unaffected breast does not for the unaffected breast.
RECOMMENDATION:
match the size and shape of the
reconstructed breast, meaning ABS and BAPRAS’ Guidance on All local restrictions on
further surgery is needed to Commissioning of Oncoplastic breast reconstruction
give a more symmetrical result. Breast Surgery42 also called for must be removed.
Without routine funding for the removal of local restrictions
these procedures, some women to ensure that patients are NHS England should
will not be able to access this not penalised if they require direct ICSs to remove
surgery and will therefore be additional procedures, or need any local restrictions on
dissatisfied with the final result access to symmetrisation breast reconstruction in their
of their reconstruction. This may or balancing surgeries. areas, including time limits,
in turn have an impact on their and limits on the number
body image and self-esteem As ICSs have recently taken over or type of procedures.
from CCGs for commissioning
Charities, healthcare professionals breast surgery, now is an opportune
and NHS England have all time to remove these restrictions
sought to encourage the and prevent them from being
removal of local restrictions. applied across the whole of an
ICS - especially as these cover
For example, the Women’s Health a larger area than CCGs.
Strategy for England41 stipulated
no local time limits should be
applied to reconstructive surgery.
However, this does not cover
17BREAST CANCER NOW DELIVERING REAL CHOICE
IMPACT OF THE PANDEMIC
ON RECONSTRUCTION
AND RISK-REDUCING
SERVICES
As highlighted in an earlier section Pausing and restarting services Deprioritising
of this report, BAPRAS has said During the first wave of the reconstructive surgery
that the limited capacity for free pandemic, NHS England issued As breast reconstruction surgery
flap reconstruction had resulted guidance for trusts to continue the began to start up again, the
in waiting times of up to two years delivery of vital cancer services, Federation of Surgical Specialty
for reconstruction in some trusts including surgery. However, Associations published a
before the COVID-19 pandemic. other services, including breast prioritisation framework with
reconstruction and risk-reducing guidance for trusts on which
As outlined in our Press Play report surgery, were paused.45 46 47 surgeries they should prioritise.
COVID-19 is the biggest crisis
that breast cancer has faced in ABS and BAPRAS advised that Risk-reducing surgery was
decades.44 While many patients’ breast reconstruction should be categorised as priority 3 (out
treatment continued unchanged, restarted in June 2020 beginning of 4), and delayed breast
other patients saw delays and with immediate reconstruction. reconstruction priority 4.48 This
cancellations, including for breast means that these surgeries have
reconstruction. The approach to Of the 59 trusts who responded not been prioritised for available
recovering services has varied to the question in our FOI request theatre space – a situation made
between areas, with reconstruction about when immediate breast worse by staff shortages caused
services not being prioritised. reconstruction was restarted, the by COVID-related absence.
median time was July 2020. The
latest restart time was May 2022. Of the 20 trusts that responded
Of the 53 trusts who responded to to the question in our FOI request
the question about when delayed about the capacity at which
reconstruction was restarted, the immediate breast reconstruction
median time was October 2020. services were currently operating,
The latest restart time was June compared to before the pandemic,
2022. In addition, one trust told the average capacity was 85%.
us they had not yet restarted
breast reconstruction at all. However, of the 18 trusts
that responded in relation to
delayed breast reconstruction,
the average capacity was
Immediate Delayed much lower, at only 42%.
reconstruction reconstruction
Earliest restart April 2020 June 2020
Median restart July 2020 October 2020
Latest restart* May 2022 June 2022
*Excludes one trust that have not yet restarted
18BREAST CANCER NOW DELIVERING REAL CHOICE
Hospital episode statistics - Breast reconstruction activity
delayed reconstruction, the
2016-2017 14,202 average wait for implant-based
reconstruction was more than six
2017-2018 13,554 months (36.5 weeks). The average
wait for free flap reconstruction
2018-2019 13,247 was just under a year (50.5
weeks). However, according to
our survey, 40% of those waiting
2019-2020 12,256 for breast reconstruction during
the pandemic had waited two
2020-2021 4,707 years or more (104+ weeks).
2021-2022 8,704 Naturally, this has had a
huge impact on patients
waiting for delayed breast
reconstruction surgery.
The impact on patients
The impact of this pause and In our survey, just over half (51%)
restart, with most breast of respondents waiting for breast
reconstruction services still not reconstruction surgery felt the
1,500
operating at full capacity, is an pandemic had a significant impact
inevitable drop in the number on their wait and experience.
of breast reconstructions Specifically, half (50%) felt
being undertaken - and even unhappy with their body image,
longer waiting times. and more than 2 in 5 (42%)
WOMEN WILL HAVE experienced a negative impact
MISSED OUT ON Hospital episode statistics (HES) on their emotional wellbeing.
RECONSTRUCTION provide data on all admissions,
outpatient appointments and A&E Those who were waiting for or
Between March and July 2020, attendances at NHS hospitals. underwent breast reconstruction
when breast reconstruction For breast reconstruction, this during the pandemic were also
services were paused during shows that there was a drop more likely to have negative feelings
the first wave of the pandemic, in activity of 64% in 2020-2021 about the outcome when they
we estimated that around compared to 2018-2019. Although eventually had surgery. For example,
1,500 women missed out on activity increased in 2021-2022, under half (47%) of those who had
reconstruction, including there was still a 34% decrease or were waiting for reconstruction
1,000 who would have had compared to 2018-2019.49 during the pandemic felt happy
immediate reconstruction with the outcome, compared
and 500 who would have had This evidences the need for with almost two thirds (65%) of
delayed reconstruction.67 further action to be taken those who had reconstruction
to support the recovery of prior to the pandemic.
breast reconstruction to
pre-pandemic levels. Of those who had or were waiting
for risk-reducing surgery, 2 in 5
Of the 32 trusts that provided (41%) felt the pandemic had a
a usable response to the significant impact on their wait for
question in our FOI request and experience of this surgery. And
on current waiting times for anecdotally, we have heard of some
19BREAST CANCER NOW DELIVERING REAL CHOICE
instances where people who were Pandemic recovery and breast reconstruction, and also
identified as being at increased risk continued deprioritisation work with their local trusts and
of breast cancer went on to develop Work is already underway to ICSs to deliver immediate breast
the disease during their wait. recover and restore NHS services, reconstruction. However, it only
however this has not fully met suggests they seek opportunities
The impact of delays and backlogs the needs of patients waiting to provide delayed reconstruction
highlights the importance of taking for breast reconstruction. for those women who were
action in both areas to ensure unable to have surgery during the
that women can complete their For example, The Elective Recovery pandemic, with no clear direction
recovery, or reduce their risk of Plan sets out a number of targets on how to achieve this.53 54
developing breast cancer.50 including eliminating waits of
over 18 months from referral to Due to the slow progress, ABS
treatment by April 2023.51 The and BAPRAS have published a
Referral to Treatment target means joint statement to emphasise
that patients should not normally the importance of recovering
wait more than 18 weeks from breast reconstruction services.
being referred to starting treatment,
unless they choose to wait longer, Action must be taken to ensure
or it is in their best interests to that patients waiting for delayed
delay treatment - for example breast reconstruction are not
because of other health conditions. waiting longer than other patients.
64%
DROP IN BREAST
However, NHS England has told us
that delayed breast reconstruction
is not covered by the Referral to
Treatment target. This is because
it is seen as a a continuation of
The Government could achieve
this by incorporating delayed
breast reconstruction within the
Referral to Treatment waiting
time target. Alternatively, a
RECONSTRUCTION ACTIVITY a planned treatment rather than separate target could be set for
IN 2020-2021 COMPARED a new treatment, as it happens delayed breast reconstruction.
TO 2018-2019 66 after a mastectomy.52 Therefore,
delayed reconstruction is not Any target would need to apply
covered by the target in the from the point at which women
Elective Recovery Plan. Despite decide they wish to have their
the emphasis on the importance delayed breast reconstruction
of addressing the long waits surgery, or from when they are
facing those whose treatment was clinically fit for further surgery -
disrupted by the pandemic, this whether that is following recovery
plan fails to include any specific from their mastectomy, treatment
actions for breast reconstruction such as radiotherapy, or when
or risk-reducing surgery, which other health conditions allow.
fall outside the category of high
volume, less complex surgery. This will not only drive progress
towards reducing long waits
NHS England has asked that caused by the pandemic, but
Cancer Alliances both accelerate will also provide momentum
the rate at which they work for taking action to address
through the backlog on delayed the issues with access to free
flap breast reconstruction.
20BREAST CANCER NOW DELIVERING REAL CHOICE
Specific ways to help
Further support is needed to JANE’S STORY
specifically address the backlog ‘I WAS REALLY
and long waits for breast SURPRISED WHEN
reconstruction and risk-reducing I GOT THAT CALL…’
surgery.55 There are a number of
ways this might be achieved. Jane was offered genetic testing
after her sister died from breast
cancer and a mammogram
Dedicated elective surgical hubs showed that her mum also had
To increase capacity during the the disease. She had immediate
pandemic, some regions set up reconstruction as part of
‘COVID-protected’ surgical cancer her risk-reducing surgery.
hubs to enable cancer surgery to
continue.56 57 58 Subsequently, NHS When her test came back
England has promoted the use of positive for the altered PALB2
dedicated elective surgical hubs,
either as a distinct or ringfenced ’EVEN BEFORE gene, Jane was clear she wanted
risk-reducing surgery. ‘Even
space within a hospital or on a I KNEW MY before I knew my results, I knew
RESULTS, I
separate site, to deliver elective what I’d do if I was carrying
procedures.59 And the Royal the mutation too,’ she says.
College of Surgeons of England
has endorsed these surgical hubs
KNEW WHAT Fortunately, Jane went on
as an effective way to ensure the I’D DO IF I WAS to have a good experience
delivery of elective activity.60
CARRYING THE of treatment and care, with
clear communication at every
There are currently over 50
new surgical hubs set to open
MUTATION TOO.’ stage, despite the pandemic.
across England.61 NHS England ‘The process wasn’t slow seeing
has also committed £1.5 billion as we were in a pandemic.’
towards elective recovery
services, which can be spent on ‘I first saw the breast surgeon
this approach.62 Local trusts are in August that year. I was really
currently considering how to best surprised when I got the call to
deliver these new surgical hubs say that they would do it. At the
to meet the needs of their own time, I was seeing everywhere
populations, which we recommend that risk-reducing surgery was
include breast reconstruction.63 being cancelled because they
were just concentrating on the
cancer, which is understandable.’
‘Looking back at it, I think I was
probably more relaxed because
I was walking towards the cause
of my risk. I wasn’t nervous. I
know that sounds really, really
silly, but it was kind of exciting,
knowing it was being done’.
21BREAST CANCER NOW DELIVERING REAL CHOICE
‘I JUST WANT TO KNOW
WHEN IT WILL BE
HAPPENING SO I CAN
MOVE ON WITH MY LIFE.’
CARLIE-ANN’S STORY
‘I HAD EVERYTHING SET UP FOR
RECONSTRUCTION, GOT ALL THE
PHOTOS AND SCANS... AND NO ONE
HAS SAID ANYTHING SINCE’
After being diagnosed with ‘I just want to know when it
breast cancer in March 2020 will be happening so I can
and despite expecting to move on with my life.’
have a lumpectomy, Carlie-
Ann ended up having a single ‘It is really tough, I’ve had
mastectomy. Carlie-Ann missed self-esteem issues. I won
out on immediate reconstruction a photoshoot last year. We
and is still waiting for her did some normal shots and
reconstruction, because of the some with my scar. I could
pandemic and ongoing recovery only choose one to keep and I
of reconstruction services. picked the one with the scar,
so I am trying to embrace my
Carlie-Ann spoke to her body, but it’s not always easy.’
oncologist, and they wrote a
letter to the plastic surgery ‘I have tried putting normal
department to highlight the pictures on my dating app but
impact it has had on her mental it’s awkward as then I have to
health. But it hasn’t helped. have a conversation about it at
some point. I now use the photo
Despite implant-based from when I won the competition,
reconstruction restarting locally, which helps. It’s hard as I just
Carlie-Ann is still waiting for want the conversation to be
DIEP flap reconstruction. light and flirty, but it affects
how you come across.’
‘DIEP reconstruction and implants
are done at different hospitals.
I could possibly get it sooner
if I wanted implants but I feel
DIEP flap would give me better
balance. It’s had an impact on
dating and my self-confidence.
It’s affected how I see myself.’
Carlie-Ann has had very little
information on how long she’ll be
waiting for her reconstruction.
22BREAST CANCER NOW DELIVERING REAL CHOICE
Continued use of the independent Improving data collection
sector and weekend capacity RECOMMENDATION: The HES database includes
During the pandemic, NHS England details of all hospital admissions,
also commissioned facilities in A&E attendances and outpatient
The backlog and long delays
the independent sector to deliver appointments. Following the GIRFT
facing those awaiting breast
dedicated ‘COVID-protected’ review of breast surgery, work has
reconstruction or risk-reducing
surgical cancer hubs.64 As part of been undertaken to agree new
surgery must be addressed.
the recovery of elective services, codes for breast surgery including
weekend capacity also has already NHS England should: reconstruction, alongside a manual
been used for lower priority breast to clarify their use. This will help
surgery, such as reconstruction or • Incorporate breast to ensure that HES data accurately
risk-reducing surgery. Depending reconstruction within reflects the breast reconstruction
on local availability of the the Referral to Treatment that is being undertaken. These are
independent sector, which is target, so the timescales expected to launch in April 2023.
largely situated in London and the for recovery set out in NHS
South East, it may be possible Elective Recovery Plan apply Moving forward, data on breast
to provide additional space and to it, and long waits are reconstruction – such as rates of
time for breast reconstruction eliminated moving forward different types of reconstruction
through its continued use and and outcomes - will also be
use of weekend capacity in the • Work with Breast Cancer available to trusts on the Model
independent sector and NHS. Now, ABS and BAPRAS Health System, to help them drive
to establish a plan of improvements in patient care.
A reconstruction rota recovery for breast
Another way to deal with the reconstruction services However, the analysis of the
backlog would be to create a FOI requests undertaken to
reconstruction rota.65 Under this • Support Cancer Alliances inform the content of this report
model, patients would be allocated and ICSs to introduce or highlights the variability of data
to the next available list and continue to deliver initiatives collected across different trusts
surgeon rather than being referred to address the backlog, for example on waiting times for
to a specific consultant.66 This may such as dedicated elective delayed breast reconstruction.
affect patient choice in relation surgical hubs, continued use This is vital in understanding
to their surgeon, but it could also of the independent sector, issues with access and backlogs.
provide an option for those who and reconstruction rotas.
want or need to prioritise the
timing of their surgery. Patients RECOMMENDATION:
who choose to stay with the
surgeon they already know, should
Consistent data must be
not be penalised for doing so.
collected on the number of
patients waiting for breast
reconstruction and risk-
reducing surgery, and how
long they have been waiting,
both locally and nationally.
NHS England should also
include breast reconstruction
in the single integrated audit
programme for breast cancer.
23BREAST CANCER NOW DELIVERING REAL CHOICE
CONCLUSION APPENDIX
Methodology and data sources
Patients who choose Action must be taken to To help build a current picture of
reconstruction must have address these challenges, breast reconstruction services,
access to the surgery that reduce variation and we undertook a variety of work,
is right for them – whether improve the experiences including:
that is implant surgery of those choosing to have
or free flap surgery. breast reconstruction. • Interviews and meetings with a
range of healthcare professionals
They should be able to choose To achieve this, NHS England culminating in a summit on
an immediate reconstruction, should work in partnership 27 April 2022 which brought
or to delay surgery until the with ICSs, Cancer Alliances together key stakeholders,
time is right for them. And and trusts, to implement the including members of the charity
if more than one surgery is recommendations outlined sector, ABS, BAPRAS, and
required for a satisfactory in this report. They must also healthcare professionals. The
outcome, they should be able engage with stakeholders purpose of the summit was to
to access that too – including Breast Cancer Now, discuss the key issues affecting
no matter where they live. ABS, BAPRAS and patients breast reconstruction and to
who are considering, waiting explore potential solutions
However, worrying gaps in for, or who have had breast
everything from information reconstruction, to ensure • A UK-wide online survey of
and support to the number that the views of patients and 2,586 people affected by breast
of trusts providing free flap health professionals are taken cancer who had received or
surgery and surgical teams into account and to foster were awaiting breast surgery,
alongside the impact of a coordinated approach. including risk-reducing surgery
disruption caused by the and breast reconstruction. The
COVID-19 pandemic, mean survey ran between 30 March
that women’s choices are and 9 May 2022 and focused on
being severely curtailed. This is experiences of breast surgery, in
having a sometimes devastating particular breast reconstruction
impact on their wellbeing,
self-image, and self-esteem. • Six interviews with people
with breast cancer about their
experiences of breast surgery
‘ACTION MUST BE TAKEN TO • FOI requests to hospital trusts
across England asking about
ADDRESS THESE CHALLENGES, local restrictions and the current
state of breast reconstruction
REDUCE VARIATION AND services following the impact of
IMPROVE THE EXPERIENCES the COVID 19 pandemic. The FOI
requests were made to trusts on
OF THOSE CHOOSING TO HAVE 24 May 2022 and responses were
BREAST RECONSTRUCTION.’
collected until 5 September 2022
The GIRFT review of breast
surgery (2021) also provided a very
helpful picture of access to breast
reconstruction across England.
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