Susan Knox

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The Breast 24 (2015) 287e289Contents lists avaiThe Breast
journal homepage: www.elsevier .com/brstViewpoints and debateThe European patient advocacy perspective on specialist breast units
and accreditation
Susan Knox*
Europa Donna e The European Breast Cancer Coalition, Piazza Amendola, 3, 20149 Milan, Italya r t i c l e i n f o
Article history:
Received 26 November 2014
Received in revised form
5 January 2015
Accepted 28 January 2015
Available online 18 February 2015
Keywords:
Breast cancer advocacy
Specialist breast units
Quality assurance
Accreditation
Best practice
Multidisciplinary team* Tel.: þ39 02 365 92280.
E-mail address: susan.knox@europadonna.org.
http://dx.doi.org/10.1016/j.breast.2015.01.013
0960-9776/© 2015 Elsevier Ltd. All rights reserved.a b s t r a c t
Europa Donna-The European Breast Cancer Coalition has been advocating for all women to have access to
care in specialist breast units since 2003. Two European Parliament Resolutions, (2003 and 2006) as well
as the Written Declaration against breast cancer in the EU of 2010 called on member states to ensure that
all women in the European Union have access to treatment in such units set up in accordance with the
“European Guidelines for quality assurance in breast cancer screening and diagnosis,” by 2016. Once
mammography screening implementation according to EU Guidelines commenced, it became evident
that it would be essential to have high-quality units where women would receive specialised treatment
upon diagnosis. Europa Donna was a member of the revision committee for Chapter 9 of the 4th edition
of these Guidelines (2006) which provided a detailed description of these services as previously defined
by EUSOMA. Moreover, the 2010 Written Declaration on the fight against breast cancer in the EU called
on the Commission “to develop a certification protocol for specialist breast units in accordance with EU
Guidelines by 2011”. The most important thing for a woman diagnosed with breast cancer to know is
where to go to get the best treatment, i.e. she needs to know that the clinic or unit is accredited as having
implemented appropriate quality standards that meet EU Guidelines thus ensuring provision of high
level breast services, and that her national health system will pay for it. Progress on accomplishing this
has not moved quickly, nor has it been accepted by all stakeholders involved.
© 2015 Elsevier Ltd. All rights reserved.While much has been done to implement specialist breast units
across Europe, it is important to emphasise once againwhy this is of
such importance towomen andwhy Europa Donna, Europe's breast
cancer advocacy organisation, continues to fight for these services
to be available to women. This needs to be reiterated because there
are still many medical professionals who question the need for
these units, the need for specialist practitioners in this field, and
who would like to convince their health ministries that breast
cancer can be treated effectively in the general hospital setting,
with general surgeons performing the surgery. This is indeed
frightening in 2014 when we consider the many very complex and
sophisticated procedures that have been added to the arsenal of
treatments that should be made available to women and that
require a specialist unit with a multidisciplinary team (MDT) e.g.
sentinel node biopsy, genetic counselling, ultra sound and MRI
when indicated, intra operative radiotherapy, gene array testing,
immediate breast reconstruction, advanced breast cancer clinics,not to mention access to the newest drugs and targeted treatments
that have been proven effective. The most effective, up to date
treatments and procedures are available in specialist breast units
and not in general hospitals. Specialist breast units have tracking
and monitoring to measure outcomes, to provide data on pro-
cedures so that they can be analysed and services improved over
time; for instance, they ensure that women who are eligible are
offered lumpectomies instead of mastectomies, and that services
are provided and followed up in a timely manner.Why care in breast units is important
There are 500,000 newly diagnosed cases of breast cancer and
143,000 deaths in Europe every year [1]. Studies have shown that
women who are treated in a specialist breast unit will have a 18%
better chance of survival [2] and theywill also enjoy a better quality
of life knowing they have received the best possible treatment for
their diagnosis. Breast cancer is a complex disease; there are many
types of breast cancer and each must be diagnosed correctly
through optimum pathology and radiology, and analysed by a
S. Knox / The Breast 24 (2015) 287e289288multidisciplinary team (MDT) to determine the correct therapy for
that individual woman. There is no longer just one type of breast
cancer; the treatment plan, followed from the outset based on the
MDT decisions, is critical for the success of the treatment, and the
life of each woman. Also joint decision making is often vital in
deciding treatment, in that there may be more than one choice and
the woman's preference, her own vision of herself, must play a role
in making the right choice for that woman. All the options must be
explained, and examined, so that the woman can arrive at the best
decision in her particular case. One size does not fit all.
For a woman diagnosed with breast cancer, the knowledge that
she is being treated in a specialist centre or unit for this disease
where all the proper protocols will be followed and all options
discussed by the MDT and with the patient, is essential. The
moment of diagnosis is a time when a woman is concerned with
many issues making her more fragile and in many cases rendering
her less adept at making the right decisions for her particular case.
Regardless of howmuch research can be done today on the internet
and the fact that initiating treatment is not usually urgent, women
at this juncture are faced with many challenges. They are often
caring for children and families, have career responsibilities and
now must make decisions that potentially will require months of
treatment, and that may result in side effects lasting for years.
Breast cancer is not just a hospital stay. It is a long and often
arduous journey.
Key elements of a specialist breast unit [3e5]
The required specifications of specialist breast units ensure that
appropriate care is undertaken for the entire journey of the patient
from diagnosis through treatment and follow up. The treatment
must be carried out by specialists trained and with significant
experience in treating this disease: specialist breast surgeons,
specialist breast radiologists etc. There must be a multidisciplinary
team and each case discussed in team meetings. Quality assurance
mechanisms, performance and auditing, alongside defined quality
objectives and outcomemeasures, must be included. Theremust be
data monitoring and constant review of cases. A specialist breast
care nurse or professional with equivalent training is part of the
core team; she explains the pathway to the patient, and ensures
that the patient understands not only what will take place in the
unit at the outset, but also what will take place after she has left the
unit, as the journey continues. Every aspect of care needed during
the journey must be provided by the breast unit including appro-
priately trained breast specialists, necessary up to date equipment,
treatment plans, survivorship plans, clinics for MBC patients, psy-
chosocial support and palliative care.
These elements are all described in the EU guidelines, and in lay
language in the Europa Donna Short Guide to the Guidelines [6], as
well as in the EUSOMA guidelines. Following guidelines is essential
as they describe best practice, and standards that can be measured
over time. Nonetheless many women in Europe are still not aware
of these, nor do they have access to services set up in accordance
with them. Since 2001 Europa Donna has been carrying out an
annual training course for women from all of its 46 member
countries; to date over 750 women have taken this course; experts
and professionals in the field give their time each year to educate
thesewomen, many of whom are survivors, on the science of breast
cancer and the most up-to-date procedures, treatments and
research. A key motivation behind advocacy training is that we
have seen first-hand that women treated for breast cancer in many
countries, and who want to become advocates, do not know what
best practice is, because they have not experienced it themselves.
Each year we query the group to see howmany have been treated in
a specialist breast unit and the response remains quite low, even in2014, at about 20% of the survivors present. A training course of this
type is essential in order to ensure that advocates have the correct
messages to take back to their countries.
Why accreditation of breast units is important
Breast units still do not exist in many countries or in many re-
gions of countries. Of those that do exist, many have not been
accredited by any governing body.
The Breast Centres Network set up by ESO [7], has gone a long
way to both raising awareness of the importance of breast units and
to encouraging their establishment. EUSOMA has developed an
accreditation system with quality indicators [8] indicating key
standards that must exist and be monitored regularly. Breast units
may request certification through an independent body, European
Cancer Care Certification. Nonetheless, there are still many coun-
tries where no breast units exist that in any way conform to the
guidelines and there is a risk that there are now entities calling
themselves breast units without meeting many of the standards
outlined in the guidelines.
This is why an EU accreditation protocol is essential: the women
of Europe deserve to knowwhich institutionsmeet EU standards so
they can be sure they are being treated with the most up to date
treatments carried out by established experts in this field. They
must be assured that all breast units meet the same set of standards
across all countries.
The European Parliament Resolutions called for women to be
entitled to treatment in certified multidisciplinary breast centres
and confirmed that these units should be established across the EU
by 2016 [9,10]. The EU Written Declaration called on the Commis-
sion to develop an accreditation protocol for breast units by 2011
[11] and in 2012 the European Commission committed to carrying
out this project and seeing it through to completion [12].
Conclusion
Time is passing and we are behind schedule. Some progress has
beenmade but not enough. Breast cancer incidence is increasing, so
the need for accredited services is even more compelling.
Women who are treated in specialist breast units have better
outcomes: a better chance of leading a longer life and a better
quality of life compared to those who are not. We all need to work
harder e advocates, health professionals, politicians, health min-
istries, industry leaders, and the European Commission, to ensure
that all the women of Europe have access to be treated in a
specialist breast unit by 2016 and that these units meet one set of
EU standards.
Conflict of interest statement
None declared.
References
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The European patient advocacy perspective on specialist breast units and accreditation

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The European patient advocacy perspective on specialist breast units and accreditation

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