Nursing Network News - Breast Cancer Now · 2016. 7. 20. · Intervention: LNGUS with endometrial...

ISSUE 21 • SUMMER 2016

IN THIS ISSUE

14

18

22

Conference Report: EBCC 2016

Nursing Network News

Breast cancer and preserving fertility

Moving forward after breast cancer

2 Nursing Network News

Section

References1. Paik S et al. N Engl J Med 2004; 351: 2817-2826; 2. Dowsett M et al. J Clin Oncol 2010; 28: 1829-1834; 3. Paik S et al. J Clin Oncol 2006; 24: 3726-3734; 4. Albain KS et al. Lancet Oncol 2010;11: 55-65.

The ONLY multi-gene assay that helps to identify patients at risk of distant recurrence1,2 and patients who are likely, or unlikely, to bene� t from chemotherapy3,4

Intended for newly diagnosed patients with early-stage, ER-positive, HER2-negative invasive breast cancer that is node negative or with 1-3 positive nodes1,2

This piece is intended to educate physicians on the clinical utility of the Oncotype DX® Breast Cancer Assay and should not be provided to patients. Genomic Health and Oncotype DX are registered trademarks of Genomic Health, Inc. © 2015 Genomic Health, Inc. All rights reserved.

Visit us at www.oncotypeDX.com

DECIDE WITH CONFIDENCETMINFORMING LIFE DECISIONS

GHI10448_0215_EN_INT

An individual question...

...An individual answer

D O I N E E D C H E M O T H E R A P Y ?

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Contact usbreastcancercare.org.ukFree Helpline 0808 800 6000(Text Relay 18001)

Calls may be monitored for training purposes. Confidentiality is maintained between callers and Breast Cancer Care

Nursing Network and professional developmentTelephone 0345 092 0802Email [email protected]

Scotland and Northern IrelandTelephone 0345 077 1892Email [email protected]

Wales, South West and Central EnglandTelephone 0345 077 1894Email [email protected]

East Midlands and the North of EnglandTelephone 0345 077 1893Email [email protected]

London and the South East of EnglandTelephone 0345 077 1895Email [email protected]

breastcancercare.org.uk 3

References1. Paik S et al. N Engl J Med 2004; 351: 2817-2826; 2. Dowsett M et al. J Clin Oncol 2010; 28: 1829-1834; 3. Paik S et al. J Clin Oncol 2006; 24: 3726-3734; 4. Albain KS et al. Lancet Oncol 2010;11: 55-65.

The ONLY multi-gene assay that helps to identify patients at risk of distant recurrence1,2 and patients who are likely, or unlikely, to bene� t from chemotherapy3,4

Intended for newly diagnosed patients with early-stage, ER-positive, HER2-negative invasive breast cancer that is node negative or with 1-3 positive nodes1,2

This piece is intended to educate physicians on the clinical utility of the Oncotype DX® Breast Cancer Assay and should not be provided to patients. Genomic Health and Oncotype DX are registered trademarks of Genomic Health, Inc. © 2015 Genomic Health, Inc. All rights reserved.

Visit us at www.oncotypeDX.com

DECIDE WITH CONFIDENCETMINFORMING LIFE DECISIONS

GHI10448_0215_EN_INT

An individual question...

...An individual answer

D O I N E E D C H E M O T H E R A P Y ?

150209_GHI10448_0215_EN_INT_advert_195x130.indd 1 06.03.2015 10:25:05

Contents

News

4 A view from…

Nik Thoren, Helpline and Ask Our Nurses Development Manager, Breast Cancer Care

5 Policy news in brief

Learning Together

6-7 Levonorgestrel intrauterine system for women on adjuvant tamoxifen

A summary of the Cochrane Review

8-9 Digital health

The role of digital technology in health

10 Yoga can support a breast cancer patient’s road to recovery

Jimmy Kwok discusses possible benefits of yoga for people with breast cancer

Sharing practice

11 Revalidation

Rachel Rawson, Senior Clinical Nurse Specialist, tells us about revalidation and how Breast Cancer Care can help

12-13 Using a tablet device to aid patient education when discussing breast surgery

Claire Liu, Nursing Network Award winner, tells us about her winning project

14-17 Conference report: European Breast Cancer Conference (EBCC) 2016

Dr Emma Pennery CBE, talks about the highlights of the conference

18-20 Preserving fertility in women with breast cancer

Helen Clarke, Senior Clinical Embryologist, discusses fertility options for women treated for breast cancer

21 Patient information refreshed

We’ve updated our patient information

22-25 Helping people to move forward after breast cancer

Learn about Breast Cancer Care’s Moving Forward courses from Kate Croxton, Head of Services (South)

26-27 Health literacy

The importance of clear information for people with breast cancer

About Breast Cancer CareBreast Cancer Care is the only UK-wide charity providing specialist support and tailored information for anyone affected by breast cancer.

Editorial boardDr Emma Pennery CBE, Clinical Director; Katie Parsons, Editor.

FeedbackThis is our 21st issue of Nursing Network News and we’d love to know what you think. Please email [email protected]

Your viewsWe’re always looking for contributions for future issues. If you have an idea you’d like to share with network members, please get in touch at [email protected]

Contents


A view from…

Nik Thoren, Helpline and Ask Our Nurses Development Manager, Breast Cancer Care. Nik talks about his role in the charity and our support services.I’m the manager for our telephone Helpline and Ask Our Nurses email service, working alongside our specialist nurses and experienced Helpline staff to ensure that we provide high quality support and information to those affected by breast cancer. My role involves overseeing the day-to-day running of the Helpline and identifying and implementing service developments. I’ve also recently taken over the co-ordination of the Nursing Network, responding to enquiries from our members and providing regular updates on network activities.

Telephone-based support and information has been a key feature of Breast Cancer Care from day one. Our founder Betty Westgate started out by answering calls from her home in Croydon from women who were worried about their diagnosis and treatment. Over the years the service has developed in line with changing client needs, requirements for robust governance structures, and advances in technology. What’s remained at the heart of everything we do, however, is our determination to provide evidence-based, person-centred, non-directive support and information to each and every person who picks up the phone or sends us an email.

I feel passionate about ensuring that we’re here for everyone affected by breast cancer, and crucially that people who need us are aware of our services. To widen our reach, we recently extended our Helpline opening hours to 7pm on Wednesdays, and adjusted

Saturday hours to start at 9am. Clients are also able to contact us by email through the Ask Our Nurses service and on social media, such as Facebook and Twitter. We’ll be continuing to explore options for utilising digital technology to reflect the changing ways in which people access information and connect with peer groups and organisations.

I was privileged to attend the recent Association of Breast Surgery (ABS) Conference in Manchester and met some of you at our exhibition stand. I was encouraged to hear lots of positive comments from breast care teams across the UK about our wide range of patient information resources, and the pivotal role they play in ensuring patients have access to relevant information during treatment and beyond. As a result I’m even more focused on increasing engagement with healthcare professionals and offering significant benefits to Nursing Network members, supporting professional development and revalidation. Keep checking the monthly email bulletins for news and developments.

A view from...

What’s remained at the heart of everything we do is our determination to provide evidence‑based, person‑centred, non‑directive support and information.

‘ ‘


Policy news in brief

New Cancer Drugs Fund model now liveOver the last few months, NHS England and NICE have been developing a new Cancer Drugs Fund (CDF) model in England, which started on 1 July. We explain the main changes to the new model below.

The CDF is now a ‘managed access fund’Promising new drugs will be available to patients through the CDF for a limited period of time. This will usually be around two years, to allow additional data on a drug’s effectiveness to be collected. This data will then be used by NICE to make a final decision on whether or not to recommend the drug for routine use.

A fixed annual budget of £340m Previously, the budget for the CDF had increased over the years in order to meet growing demand. The budget will now be fixed at £340m per year.

Re-assessment of drugs currently available on the CDFDrugs that were previously available under the CDF will be re-assessed under the new criteria.

For secondary breast cancer, these are:

• eribulin (Halaven)• pertuzumab (Perjeta)• everolimus (Afinitor)• trastuzumab emtansine (Kadcyla or

TDM-1)

As a result of this re-assessment, it’s possible that some drugs may be removed from the CDF. Patients will continue to have access to these drugs until this re-assessment takes place. If a drug is later removed from the CDF, those already having it will continue to have access for as long as it’s clinically appropriate.

We’ll be monitoring the impact of these changes on breast cancer patients in England.

Details of the new CDF can be found on the NHSE website at www.england.nhs.uk/ourwork/cancer/cdf

For more information about the changes, or if patients have come to you with any concerns, email [email protected]

Updates to NICE guidelines NICE is currently developing an update of its clinical guideline for early breast cancer, Early and locally advanced breast cancer: diagnosis and treatment (CG80).

We responded to the draft plans for this update. Our response is available at breastcancercare.org.uk/get-involved/campaign-us/what-we-think

A consultation on the draft updated guideline will take place January – March 2018. The final updated guideline is due to be published in July 2018.

NICE is also updating certain aspects of its clinical guideline for advanced breast cancer, Advanced breast cancer: diagnosis and treatment (CG81). There will be a consultation on the changes in February 2017. The updated guideline is due to be published in June 2017.

For further information about either of these updates, please email [email protected]

Cancer strategy implementation plan In May, NHS England revealed its plans to achieve the ambitions set out in the new cancer strategy for England: Achieving world-class cancer outcomes: taking the strategy forward. The implementation plan is available at www.england.nhs.uk/wp-content/uploads/2016/05/cancer-strategy.pdf

News

Information correct at time of press


Learning together

Levonorgestrel intrauterine system for endometrial protection in women with breast cancer on adjuvant tamoxifen

This is a summary of a Cochrane Review.

Review questionWill the use of a Levonorgestrel intrauterine system (LNG-IUS) decrease the risk of endometrial pathology, uterine pathology, breast cancer recurrence, or breast cancer associated death in pre- and post-menopausal women with breath cancer receiving adjuvant tamoxifen therapy compared to endometrial surveillance alone?

Population: Pre- and post-menopausal women with breast cancer on adjuvant tamoxifen Intervention: LNG-IUS with endometrial surveillance Comparison: Endometrial surveillance alone Outcome: The primary outcomes of interest were endometrial polyps, endometrial hyperplasia, or endometrial cancer. The secondary outcomes of interest were uterine fibroids, abnormal vaginal bleeding or spotting, breast cancer recurrence, and breast cancer-related deaths.

Type of reviewThis is a Cochrane Review containing a meta-analysis of four randomised controlled trials totalling 543 pre-menopausal and post-menopausal women with breast cancer receiving adjuvant treatment with tamoxifen.

Relevance for nursing Over 60% of breast cancers are hormone receptor positive, either

oestrogen receptor positive, progesterone receptor positive or both (American Cancer Society, 2015). As such, a common adjuvant treatment for these cancers is an oestrogen receptor antagonist. One of the most widely used medications is tamoxifen, a selective oestrogen modulator (SERM). This class of medication has greatly decreased the recurrence of breast cancer by serving as a competitive antagonist at the breast oestrogen receptor level. However, it does exert an oestrogenic agonist effect on several other tissues including the bones, vagina and uterus. This effect can lead to uterine hyperplasia, polyps, or endometrial cancer with the greatest risk occurring in those women who are post-menopausal (American Cancer Society, 2015). Current management includes the use of uterine surveillance only to detect endometrial or uterine changes early. A strategy to move from secondary prevention of uterine pathology to primary prevention is needed to achieve optimal care of these women.

Characteristics of the evidenceThe studies for inclusion in this systematic review were abstracted from 16 databases. Additionally, a Google search as well as a hand search of references was conducted to ensure completeness of the evidence. This search strategy yielded six potential studies. However, two studies were


Learning together

included in a previous review and were thus excluded. The final four studies were analysed via a meta-analysis.

The pooled data in this meta-analysis revealed a significant decrease in the occurrence of endometrial polyps at both the short-term (12 month) and long-term (24-60 month) follow-up times. Examination of the long-term follow-up data also indicated a decrease in endometrial hyperplasia. Additionally, there was an increase in abnormal vaginal bleeding or spotting in the LNG-IUS intervention group compared to control at the short-term follow-up. This occurrence decreased with time and was absent by 45-60 months.

There was no difference in risk found for uterine fibroids, breast cancer recurrence, or breast cancer-related deaths between the intervention and control groups. However, these outcomes had very low rates of occurrence in either group.

No cases of endometrial cancer were detected in either the intervention or control group. Therefore, no risk comparison could be made.

The Grading of Recommendations Assessment, Development, and Evaluation (GRADE) system was used to systematically grade the evidence and recommendations. The evidence in this systematic review received the score of moderate quality. This rating indicates that further evidence will likely have an important impact on the estimated effect of the findings (The GRADE Working Group, 2016). The limitations on quality of the evidence were due to small sample sizes and low occurrence rates for the examined outcomes.

Best practice recommendationsThe evidence suggests that there may be a modest reduction in the risk of endometrial polyps and endometrial hyperplasia with the use of LNG-IUS in women receiving tamoxifen for adjuvant breast cancer therapy. There is no data to support the protective effect of this intervention on the prevention of endometrial cancer in this population. There is insufficient data to comment on the effects of LNG-IUS in relation to breast cancer recurrence or outcome.

The use of the LNG-IUS produces more abnormal vaginal bleeding or spotting during the initial 24 months, which may prompt the need for further diagnostic testing.

Further research is needed to evaluate the use of this methodology for use in this population.

Research recommendationsThis review was limited by the small sample sizes available for evaluation as well as the low occurrence of the outcomes of interest. Future research is needed on larger populations of women receiving adjuvant tamoxifen therapy, particularly those who are post-menopausal. Larger studies are also needed on the effect of LNG-IUS on secondary breast cancer events and breast cancer-related deaths.

Author: Josie Bidwell, DNP, RN, FNP‑C; Assistant Professor of Nursing, University of Mississippi Medical Center; A Member of the Cochrane Nursing Care Field

References Dominick S, Hickey M, Chin J, Su HI. Levonorgestrel intrauterine system for endometrial protection in women with breast cancer on adjuvant tamoxifen. Cochrane Database of Systematic Reviews 2015, Issue 12. Art. No.: CD007245. DOI: 10.1002/14651858.CD007245.pub3. http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD007245.pub3/full The GRADE Working Group (2016). Frequently Asked Questions. Retrieved from www.gradeworkinggroup.org/FAQ


Digital health

Breast Cancer Care’s Assistant Director of Digital, Jo Wolfe, gives an update on the tech agenda in health and the latest digital health apps on the market.

Swipe right for breast cancer supportIt’s late afternoon in Breast Cancer Care’s central office and a group of staff and external technology experts is hard at work. The table is scattered with post-it notes, sketched diagrams cover the walls and there’s a plethora of Apple products.

Welcome to the Fuse accelerator where Breast Cancer Care has partnered with leaders in the tech sector to rapidly develop a new digital health app over three months. Internally, the project is called BECCA (Breast Cancer Care App).

Project BECCAAs Kristina Barrick, Digital Innovation Manager at Breast Cancer Care explains, ‘We identified a gap in the market for an app to support women who have finished active treatment and are trying to move forward.

‘We know this is an incredibly tough time for many women who struggle to adjust and adapt to life after breast cancer.

‘We were surprised to learn that over 70% of people accessing our website and peer support forum do so from their mobile or tablet. Our audience is quite tech savvy across a range of ages, so BECCA made sense as a solution.’

BECCA offers people a series of suggestions to aid recovery after breast cancer. These include exercise, mindfulness, pampering and fun activities. It could be something big like arranging a weekend away, or something very simple like making time to rest. A user can either accept a card and complete the suggestion or swipe

through multiple cards for more ideas. They can rate and review cards and see what other people recommend.

A crucial aspect of developing BECCA has been interviews and workshops with people affected by breast cancer. One woman told us, ‘I remember coming home after the last chemo and being scared… When you suddenly don’t have an appointment for three months you don’t know who to turn to. All of a sudden you’re out on your own.’

The explosive growth of digitalBreast Cancer Care’s desire to develop BECCA has coincided with the explosive growth of digital in both the charity and health sectors. The Fuse accelerator was created by the Centre for Acceleration of Social Technology (CAST) and funded by Comic Relief to support the development of tech for social good.

Dan Sutch, Director of CAST, says, ‘It’s been brilliant to have Breast Cancer Care among the first seven charities to take part in Fuse. We were impressed by the charity’s long legacy in digital innovation and the amount of research the team did in advance. This has given them a really strong foundation for the development of their new digital product. It looks like BECCA will have an exciting future.’

Digital change is also now a reality in the NHS. The 2014 report, Personalised Health and Social Care 2020, paved the way for the National Information Board (NIB) to be established. This coalition of experts meets regularly to drive forward developments in digital health services,


Learning together


focusing on establishing the NHS website as a single portal.

In late 2015, Baroness Martha Lane Fox – the Lastminute.com founder who has been instrumental in digitising government – joined the charge for a digital NHS. She urged NIB to focus on providing free WiFi throughout the NHS, prioritising the hardest to reach groups, enabling the NHS workforce to support patients in using digital services and promoting awareness and take-up of online primary care services. These recommendations are echoed in the NHS national cancer strategy.

Other digital tools for breast cancer patientsOne way that the NHS is funding digital health is through its own Innovation Accelerator. Participants in this programme include Health Unlocked – an online support forum for a wide range of conditions including breast cancer – and OWise, a website and app for people receiving treatment for breast cancer.

OWise launched in the Netherlands in 2013, but only came to the UK in February this year. The service allows breast cancer patients to assemble all the information about their treatment in one place and provides a visual overview with charts and diagrams.

Anne Bruinvels, OWise’s founder, comments that, ‘In a time where technology is fully embedded in our daily lives, I wondered why there were no smart, digital tools to support cancer patients during their treatment. Since OWise was launched we have witnessed the positive effects it has on breast cancer patients, their treating clinicians, as well as the patient-doctor relationship.’

Back at Breast Cancer Care, the Fuse accelerator is coming to an end. We will soon have a pilot app that we can test with more people affected by breast cancer, while we secure more funding to grow this new digital service.

Learning together

References OWise www.owise.eu CAST http://wearecast.org.uk https://healthunlocked.com Our Forum: breastcancercare.org.uk/forum

We are keen for Nursing Network members to give us their feedback on the BECCA project throughout the pilot. If you would like to be involved, please email Kristina Barrick – digital@breastcancercare .org.uk

Breast Cancer Care’s BECCA app

Card ID 7, Front Card ID 7, Back








10 Nursing Network News10 Nursing Network News

Yoga can support a breast cancer patient’s road to recovery

Dr Jimmy Kwok, PhD, talks about the potential benefits of yoga for people affected by breast cancer.Yoga, a Sanskrit word, is difficult to translate fully. The literal meaning is ‘yoke’ and it is generally interpreted as a practice or path that can lead to the attainment of ‘stillness’ both physically and mentally. It’s only recently that the scientific and medical community has awoken to the health benefits that this ancient practice might have in supporting people with medical conditions including cancer.

A landmark clinical study by Professor Lorenzo Cohen, Director of the Integrative Medicine Programme at The University of Texas, MD Anderson Cancer Centre suggested that yoga can benefit breast cancer patients undergoing radiotherapy. The study recruited 163 women with stage 0–3 breast cancer lasting over a six-month period. They underwent six of weeks of radiotherapy and were randomly divided into three groups that received different add-on instructions as well as their standard course of radiotherapy. Group 1 received three hourly yoga sessions per week; group 2 received three hourly simple stretching exercise regimes per week; group 3 was a control group that received neither yoga nor stretching regimes.

The most significant finding here is that women who practised yoga registered the sharpest fall in the stress hormone, cortisol (hydrocortisone). Cortisol is normally produced by the adrenal gland in response to stress. This is of particular importance because ‘blunted circadian cortisol rhythm‘– a high level of blood cortisol in the body – has been linked to worse outcomes in breast cancer. Unsurprisingly, women who practised yoga also reported qualitatively that they have better general health, physical functioning and psychological wellbeing.

The Society of Integrative Oncology in the US has also rated yoga as having ‘A’ level evidence, the top level, supporting its use for women with breast cancer. Other studies have suggested that breast cancer patients and survivors who practise yoga also experience:

• a reduction in fatigue levels• relief from ‘chemo brain’• alleviated depression• alleviated lymphoedema • improved musculo-skeletal pain

post-surgery.

Learning together

References Society of Integrative Oncology, integrativeonc.org Chandwani KD, Thornton B, Perkins GH, Arun B, Raghuram NV, Nagendra HR, Wei Q, Cohen L. Yoga improves quality of life and benefit finding in women undergoing radiotherapy for breast cancer. J Soc Integr Oncol 8(2):43-55, 2010. PMID: 20388445 Chandwani KD, Chaoul-Reich A, Cohen L. The role of yoga in breast cancer. Breast Diseases: A Year Book Quarterly 17:330-331, 2007.

About Jimmy KwokJimmy is Head of Oncology Service Line for HCA Healthcare UK. He gained his MA in Natural Sciences from Emmanuel College, University of Cambridge, and his doctorate degree in Clinical Oncology (Breast Cancer) at Imperial College, London. Jimmy has also interned at Harvard Medical School, Boston USA and the oncology department at Great Ormond Street Hospital, London. He has practised Ashtanga yoga for over a decade and qualified at the Ashtanga Institute, Mysore in India. He is a registered yoga teacher RYT200 with Yoga Alliance UK, and a keen advocate of yoga for cancer patients, working closely with Maggie’s Cancer Centres to promote its use in recovering cancer patients.

For more information, visit www.dryoga.co.uk


Revalidation and Breast Cancer Care

There are many ways Breast Cancer Care can help you with your revalidation. Rachel Rawson, Senior Clinical Nurse Specialist, tells us more.I have been part of many conversations over the last few months with nurses who are trying to get to grips with the concept of revalidation. From April 2016 all nurses will need to demonstrate that they practise safely and effectively. The process of revalidation will encourage us to reflect on the role of the code in practice and demonstrate that we are ‘living’ the standards set out within it.

From a personal perspective it has taken me several months to understand the process and what I will need to do in order to collect the evidence I need to revalidate. My own revalidation is due in November this year and while I have found the NMC (Nursing and Midwifery Council) microsite useful, I have been struck by the level of evidence needed to meet the new requirements. Working as a nurse in the charity sector allows me to be involved in many different aspects of learning and patient interaction which have the potential to generate feedback and evidence to support revalidation. However, I know from talking to nurses in the NHS that access to feedback and evidence can be less easy.

How can Breast Cancer Care support you?Five pieces of practice-related feedbackIn order to meet practice-related feedback requirements you will need to provide five pieces of evidence, which can come from different sources and in a variety of forms. They can be written

or verbal, formal or informal and can come from patients and service users, colleagues and management.

It may be that in the past you have supported us by delivering a session on our Moving Forward courses, Younger Women Together or Living with Secondary Breast Cancer. Taking part in these sessions – whether in the recent past or in the future – will generate evidence that can be used in revalidation.

35 hours of CPD including 20 hours of participatory learningAs part of the Nursing Network you will have access to our healthcare professional training, including a series of teleconferences throughout the year. Each teleconference lasts for an hour and fits into the requirement of participatory learning. For revalidation you will need to complete 35 hours of continuous professional development (CPD) over the three years relevant to your scope of practice as a nurse, including 20 hours of participatory learning.

In order to maintain accurate proof of the CPD your records must contain evidence, usually in the form of a certificate, that you undertook the activity.

If you need to access feedback for a session that you have contributed to, or you have attended a teleconference or forum and have not received a certificate, please let us know.

Sharing practice

If you want to know more about the sessions you can contribute to, or learning opportunities that we have at Breast Cancer Care, please email [email protected]


Sharing practice

Using a tablet device to aid patient education when discussing breast surgery

Claire Liu, Senior Specialist Nurse in Breast, was featured in our last issue as joint winner of the Nursing Network Award for Patient Support or Involvement. She tells us more about the project that impressed the judges.As specialist nurses we aim to educate patients to facilitate informed choice about their treatments. As breast reconstruction techniques develop, the complexity of the information and individual choice increases. It’s important to establish realistic expectations prior to surgery which can be enhanced by showing information from a range of sources1. Photographs can improve recollection and comprehension of new material as well as generating discussion and interest2. They are valuable aids when counselling patients about breast reconstruction, focusing the information to individual needs by showing differing body habitus, age and ethnicity3.

Objective of projectThe objective was to establish an educational tool employing a tablet device to display multiple images of all breast surgery procedures offered within the breast unit.

This would be used to educate patients about the different surgical options available, and to facilitate informed choice while managing aesthetic expectations from surgery.

Implementation of projectWe had previously used a book of photographs to educate patients about breast reconstruction. The need to include new surgical techniques was the catalyst to considering other modern

technologies. A tablet was chosen due to its capacity to store a large number of images that can be easily updated to accommodate surgical developments.

The implementation of the device was time consuming, and we encountered many challenges.

Engaging surgical colleagues’ support and co-operation was instrumental in obtaining consent for images to be used on the device. All staff share responsibility for the content available4. Explaining the need for separate consent and the availability of consent forms encouraged assistance. Consent was acquired pre-operatively when patients could appreciate how the images would be used. Inclusion of pre-operative images helps patients understand the entire surgical journey.

Delays in obtaining post-operative images postponed the initiation of the tool. This time was used to establish funding, and acquire and set up the iPads.

Discussion with several departments ensured the correct consent was obtained to use the images for this project, and safely transfer them to the iPad. Access to the picture archiving and communication system (PACS) was gained to allow access to the clinical images taken.

To ensure the safety of the sensitive and confidential information shown on the images an nhs.net account was


Sharing practice

obtained, as this account is set up to government standards5.

Each individual tablet required installation of images and was dependent on WiFi access.

Images were displayed in files with a colour coded title page to easily identify and highlight the surgical procedure shown. Additional information was given in the file name to assist discussion. Colleagues were encouraged to familiarise themselves with the files prior to patient consultations, in order to identify useful images to enhance their own practice and individual discussions.

Effect on patient careThe development of this device quickly rendered previous tools obsolete. The ability to store a greater number of images has significantly influenced the ability to provide individualised information. It enables thorough discussion of all aspects of aesthetics including scars, nipple preservation, shape, and risk of possible complications. Following implementation, the specialist nursing team has highlighted ways to further utilise the tool. Images showing bras and the early post-operative period have been a useful addition to the collection.

The introduction of images to explain complications has commenced. We

aim to enhance the recollection of information given to aid recognition of early symptoms that may require intervention. This also enhances the validity of informed consent.

Feedback from patients has been positive. They have highlighted the need for different age groups, ethnicities and physiques to be included. Suggestions to include photographs in the early post-operative recovery period and after further healing have been acknowledged and included. Many patients have provided extra images they feel would have enhanced their own understanding.

This is an ongoing project for which we continue to recruit. Colleagues use the tool independently to maximise their own practice. They are encouraged to seek consent for any image they feel would be beneficial.

As the concept becomes part of our daily practice we are purchasing more iPads to meet our service needs. The majority of colleagues prefer the standard size iPad to aid their discussion outside the clinic setting. However, the iPad mini has been useful, due to easy transportation, within the clinic setting.

Further work is being considered to identify what visual information patients find beneficial to aid their decision-making and preparation for surgery.

References 1 Saulis AS, Mustoe TA, Fine NA (2007) A Retrospective Analysis of Patient Satisfaction with Immediate Post Mastectomy Breast Reconstruction: Comparison of Three Common Procedures. Plastic & reconstructive surgery. 119:1669-1676. 2 JISC Digital Media. 2015. Guide. Available at: www.jiscdigitalmedia.ac.uk/guide/using-images-to-reinforce-learning [accessed 28 April 2015]. 3 Association of Breast Surgery/ BAPRAS (2012) Oncoplastic Breast Reconstruction. Guidelines for Best Practice. Available at www.associationofbreastsurgery.org.uk/media/23851/final_oncoplastic_guidelines_for_use.pdf [accessed 23 May 2016]. 4 Liu C (2015) How patients can use tablet devices to learn about surgical procedures. Cancer Nursing. 14(7): 24-27. 5 Health and Social Care Information Centre (2015) AboutNHSMail. Available at http://systems.hscic.goc.uk/nhsmail/about [accessed 27 April 2015].

Conference report: European Breast Cancer Conference (EBCC) 2016

The 10th EBCC was held in Amsterdam in March 2016. Dr Emma Pennery CBE describes some notable presentations from the conference.

Andersen, Z et al. Diabetes, diabetes treatment and mammographic density in Danish diet, cancer, and health cohort. Poster 158.This study reported on results from more than 5,500 women (4,500 were post-menopausal and the average age was 56) who attended mammographic screening in Denmark between 1993 and 2001. While other studies have looked at diabetes and breast density, this is the first to look at possible effects of diabetes treatment.

Analysis revealed 2.4% (137) had diabetes and 56.3% (3,212) had breasts categorised as mixed or dense. Overall, the women with diabetes were much less likely to have mixed or dense breasts. Interestingly, this finding applied to the women who managed their

diabetes with diet alone or oral drugs (such as metformin), but those using insulin injections had increased odds of having mixed or dense breasts.

The authors suggested this may be because insulin is an important growth factor for all body tissues, so it’s plausible it increases breast density. But the exact mechanisms are still unknown and more work is needed to determine how different treatments for diabetes could affect breast cancer risk. Although breast density increases risk, the study didn’t determine that insulin treatment makes breast cancer more likely and breast density is, of course, only one of many risk factors.

Key points • Breast density is a significant risk

factor for breast cancer (women


Sharing practice


with more than 75% density have a four to six times greater risk than those with a mammographic density of less than 25%).

• There’s a clear link between diabetes treatment and breast density. The use of diet or drugs for diabetes treatment decreased mammographic density, while taking insulin increased it.

• Further research aims to explore the effect of cheap, easily available drugs – such as metformin – on breast density and breast cancer risk.

Coles, C et al. Partial breast radiotherapy for women with early breast cancer: first results of local recurrence data for IMPORT LOW. Abstract 4LBA.Radiotherapy to the whole breast is standard treatment after breast-conserving surgery for women with early breast cancer, even those with a low-risk of local relapse. But it can result in side effects that adversely impact on comfort, cosmetic outcome and anxiety. So this phase III trial aimed to find out if full dose radiotherapy to the whole breast is needed in patients with low risk, early breast cancer.

More than 2,000 women aged over 50 (average age was 63) who’d had breast-conserving surgery for small (<3cm) early breast cancer, were recruited from 30 radiotherapy centres across the UK.

They were randomised into three groups.

1) 675 had whole breast radiotherapy at the standard dose of 40 Gy (the control group).

2) 674 had 40 Gy to the partial breast and a lower dose of 36 Gy to the rest of the breast.

3) 669 had 40 Gy to the partial breast (focused around the tumour bed) only (standard full dose to the breast tissue closest to the cancer, no radiotherapy elsewhere in the breast).

All patients were treated with intensity modulated radiotherapy (IMRT), a technique that can be carried out with standard radiotherapy equipment. Given as partial breast radiotherapy (focused around the tumour bed), it allows the dose to be adjusted to fit the area being treated and delivers an even dose of radiation which better protects the remaining breast, the lung and the heart in left-sided breast cancers.

The analysis showed that, five years after treatment, rates of local recurrence were very low across all three groups (1.1%, 0.2% and 0.5% respectively). Physician-reported adverse events and patient-reported assessment of changes in the appearance of the breast also did not differ across the treatment groups. But longer follow-up is needed because women remain at risk of local recurrence after five years.

Key points • At five years follow-up, for women

with early breast cancer, partial breast radiotherapy focused around the tumour bed provides as good local control (non-inferior) as whole breast radiotherapy, and is not associated with worse side effects.

• Longer follow-up is needed but may show that full dose radiotherapy to the whole breast may not be needed for everyone with early breast cancer.

Lambertini, M et al. Dose dense adjuvant chemotherapy, treatment induced amenorrhea and overall survival in premenopausal breast cancer patients: a pooled analysis of the MIG1 and GIM2 phase III studies. Abstract 5.This presentation reported on a meta-analysis of two randomised, phase III clinical trials comparing adjuvant chemotherapy given every two weeks (dose dense) with every three weeks (standard). There’s currently no robust evidence to recommend

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specific chemotherapy regimens for pre-menopausal breast cancer patients, and little prospective data on the impact of dose dense chemotherapy on the risk of treatment-induced amenorrhea.

Just over 1,500 women were included in the analysis with an average age of 44. All had either node positive or high risk, node negative breast cancer. Dose-dense adjuvant chemotherapy was found to significantly improve overall survival after 10 years (84.9% compared to 79.1% with standard chemotherapy), but was not associated with an increased risk of treatment-induced amenorrhea.

The improved survival was seen in women with hormone receptor positive and negative disease, but they were larger in those with hormone receptor positive breast cancer. It was also seen regardless of whether the woman developed treatment induced amenorrhea.

Key point • Dose-dense adjuvant chemotherapy

(every two weeks) significantly improves survival when compared to standard three-weekly chemotherapy for high-risk, pre-menopausal breast cancer patients, without increasing the risk of impaired fertility and premature menopause (a major concern for many young women).

Bundred, N et al. Effects of perioperative lapatinib and trastuzumab, alone and in combination, in early HER2+ breast cancer – the UK EPHOS-B trial. Abstract 6LBA.This was the presentation that received the most press attention in the UK. Newspapers caused a flurry with headlines like ‘new breast cancer treatment wipes out tumours in just 11 days’. The study authors then released a statement to emphasise the study applied only to women with newly diagnosed HER2 positive breast cancer

and to urge caution given we do not yet know what effect the treatment will have on long-term survival.

The results were from the UK EPHOS-B multi-centre clinical trial, in which 257 women (average age of 52) with newly diagnosed, operable, HER2 positive disease were recruited between November 2010 and September 2015.

The trial was designed to measure the effect of 10–12 days’ pre-operative anti-HER2 therapy. It had two parts; in part one, 130 women were randomised to receive no pre-operative treatment (the control group), or trastuzumab only on days 1 and 8 pre-surgery, or lapatinib only for 11 days after diagnosis and before surgery.

However, as evidence emerged from other trials of the efficacy of the combination of lapatinib and trastuzumab to treat HER2 positive breast cancer in other settings, the second part of the trial was amended so that, from August 2013, the next 127 women were randomised to the control group, or to receive trastuzumab only, or the combination treatment. For both parts of the trial, the women continued to receive standard care after surgery.

Samples of tumour tissue were taken from the first diagnostic core biopsy and then again during surgery. The samples were analysed to see if there had been a drop in levels of the Ki67 protein (an indicator of cell proliferation) or a rise in apoptosis (programmed cell death) from the time of the first biopsy. In addition, investigators reviewed the pathology reports on the tissue taken during surgery, and the women were then categorised as either having pathological complete response (pCR) if no active cancer cells had been found, minimal residual disease (MRD) if the tumour was less than 5mm in diameter, or other.

Results from the second part of the trial, analysed in February 2016, showed that, in addition to observing a drop


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in Ki67, for women who received the combination treatment 11% had pCR and 17% had MRD. For those women randomised to receive only trastuzumab, 0% had pCR and 3% had MRD and no patients had either pCR or MRD in the control group.

The group of women who responded to the combination treatment included women who had presented with stage 2 breast cancer (where it had spread to their lymph nodes).

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Slide from the EPHOS-B presentation

Key Points • It’s possible to get an early indication

of response (reduction or absence of disease) after only 11 days of pre-operative therapy.

• Approximately a quarter of women with HER2 positive breast cancer, who were treated with a combination of lapatinib and trastuzumab before surgery and chemotherapy, saw their tumours shrink significantly or even disappear.

• Further trials are needed to confirm the results and to determine if some patients may need only combination anti-HER2 therapy and can avoid chemotherapy.


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Preserving fertility in women treated for breast cancer

Helen Clarke, Senior Clinical Embryologist, Jessop Fertility, discusses options for preserving fertility in women who are facing treatment for breast cancer.Fertility preservation can be an important step for women facing the loss of their fertility due to medical treatments such as radiotherapy or chemotherapy. Some patients may struggle to talk about fertility issues, or may feel it’s inappropriate to bring up as they focus on their treatment and recovery. Some women may not have even started thinking about having a family when they receive their diagnosis, and so being informed about their options at an early stage can make all the difference to the life-changing decisions they may face.

Options for preserving fertilityWomen facing a loss of fertility might have different options to consider. Ovarian tissue freezing may be available to particular groups of patients (eg pre-pubertal females) but at the moment this opportunity is offered by very few clinics in the UK. A much more universal and accessible approach available to many women is that of egg (oocyte) or embryo freezing, also known as cryopreservation. This involves stimulation of the ovaries to produce a cohort of eggs, which are then collected. These are then either frozen as eggs, or inseminated with partner or donor sperm to produce embryos that are subsequently frozen. Both are then stored in liquid nitrogen.

Which centres in the UK offer fertility preservation for women?All IVF clinics in the UK that offer fertility preservation, assisted conception treatment or the storage of gametes and embryos are regulated and licensed by the HFEA (Human Embryology and Fertilisation Authority). The HFEA website (www.hfea.gov.uk) contains a directory of all of these clinics and the particular services that they offer, including egg and embryo storage.

What happens once the referral has been made?The fertility consultant and the referring doctor will communicate to determine whether or not a cycle of fertility preservation is appropriate. Some cancers are oestrogen dependent, and so it may not be in the patient’s best interest to be subjected to the artificially high levels of oestrogen that are produced during ovarian stimulation. Equally, the process of appointments, ovarian stimulation and egg collection may take three to four weeks in total, and such a delay to treatment may not be acceptable or appropriate for some women.

If time and medical issues allow, then the patient will attend the IVF clinic for her first visit, ideally with her partner if she has one. Although different clinics will have slightly different protocols, the overall pathway is likely to be similar irrespective of the clinic she attends.


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What appointments will be needed?The first appointment is likely to be a medical consultation during which the fertility specialist will provide verbal and written information about the cycle. The patient, and her partner if she has one, will have the opportunity to ask questions and in many clinics specialised fertility counselling will also be offered.

All patients will be screened for various viral infections before any eggs or embryos are stored. This is required by the HFEA due to a theoretical risk of viral cross-contamination between samples stored in liquid nitrogen. Because of the physical difficulties associated with storing eggs or embryos for viral-positive women, many clinics will not be able to offer egg or embryo freezing to women who test positive for HIV, hepatitis B or hepatitis C. However, the HFEA will have information about which clinics can accommodate such patients. In such cases it may be possible to treat a patient locally then transport her eggs or embryos to another centre that has the capability to store eggs and embryos from viral-positive patients.

There will also usually be an appointment with a specialist nurse who will discuss the practicalities, such as how to administer the daily hormone injections, and the patient will complete the consent forms that are legally required before egg or embryo storage can take place.

What happens during a fertility preservation cycle?Ovarian stimulation and egg collection is conducted in a similar way to the stimulated cycle in IVF treatment. A cycle usually takes approximately two weeks, but depends on the drug treatment used and how the ovaries respond to it. With the beginning of the menstrual cycle,

fertility medication routinely used for IVF treatment is self-administrated daily to stimulate the ovaries to generate mature follicles (small fluid-filled sacs containing the eggs). The ovarian response is monitored by trans-vaginal ultrasound scans and, in some cases, blood tests to monitor levels of oestrogen. When the follicles have matured adequately, egg collection is performed, either under local or general anaesthetic.

If egg freezing is to take place then the eggs will be put into liquid nitrogen storage later the same day. If embryo storage is planned then sperm, either from the patient’s partner or from a donor, will be prepared and used to inseminate the eggs. Any resulting embryos will be frozen one to six days later.

What issues will the patient be asked to consider?All patients having fertility preservation at a licensed clinic are required to complete HFEA consent forms which outline the specific conditions of storage for that particular patient. The patient will be asked to consider a number of difficult issues such as what she would like to happen to her stored eggs or embryos in the event of her death. The forms also specify the length of time that the eggs or embryos can legally remain in storage.

Another important consideration is whether egg or embryo storage is most appropriate. Once embryos are created using the patient’s eggs and her partner’s sperm then they legally belong to both partners. If the couple separates in the future and the male partner withdraws his consent then the woman would be unable to use the embryos to attempt to have a child, and the embryos would have to be destroyed. On the other hand, success rates are much higher using frozen embryos


compared to frozen eggs, so the patient will need to think carefully about her personal circumstances before making her decision. In some cases it may be possible to store a combination of eggs and embryos. These are all issues that will be discussed in detail with the fertility specialists and counsellors to help the patient reach a decision that is right for her.

How long can eggs and embryos stay in storage?Physiologically speaking, eggs and embryos can remain in liquid nitrogen storage indefinitely, without any biological deterioration. However, a limiting factor will be the storage consent period that is stated on the HFEA consent forms. The statutory period for egg and embryo storage is 10 years, but this can be extended by certification by a medical practitioner in certain cases where a patient may become prematurely infertile.

What happens when a patient wants to use her eggs or embryos to have a baby?The first step for a patient wishing to use her stored eggs or embryos would be for her to ask her GP to refer her to an IVF clinic. If she has moved since her fertility preservation cycle it will be possible to transport her eggs or embryos to a clinic nearer her home.

Are patients eligible for NHS funding for this service?Funding criteria for fertility preservation vary across regions so we would advise contacting the appropriate CCG for more information.

For more information about egg and embryo freezing and storage, visit www.hfea.gov.uk

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Our Younger Women Together events provide a setting to meet other women under 45 who’ve been diagnosed with primary breast cancer.Each event includes whole group sessions and a choice of small group sessions. Topics include medical management of breast cancer in younger women, fertility after treatment and breast surgery and reconstruction, with plenty of opportunity to ask questions.

23 and 24 September 2016Younger Women Together - Leeds

4 and 5 November 2016Younger Women Together - Bristol

3 and 4 February 2017Younger Women Together - Liverpool

Visit our website to find out more: breastcancercare.org.uk/ywt

Younger Women Together events

Breast

calcifications

This leaflet tells you about

breast calcifications. It explains

what calcifications are, how

they’re found and what will

happen if they need to be

followed up.

Although they’re more common

in women, breast calcifications

can be found in men.


Patient information refreshed

As an organisation working directly with people diagnosed with breast cancer, we wanted to let you know that we’ve refreshed the look of our patient information resources.

Why the change?You’re probably already aware that our ambition is for everyone affected by breast cancer to get the best treatment, information and support possible. In order for us to be there for people when they need us most, we need to make sure that everyone knows who we are and what we do. And to do this, we need a strong, recognisable brand.

In March this year we released some new brand guidelines that give our current look and feel a refresh, moving it forward and building on what we already have. The changes are quite subtle but will help us stand out as the main breast cancer support charity, so people know where to come when they need care, support and information.

Patient informationWith our new brand guidelines launched, we’re gradually updating all our patient information resources. You’ll begin to see lots of new-look publications at our information points and available to order online, containing the same high-quality, expert information.

Please continue to let your patients know that we can support them at difficult times with our information and free services. Together we can help people with breast cancer live their life.

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Treating primary breast cancerThis booklet describes the treatments you may be offered if you have been diagnosed with primary (early) breast cancer.

To download and order our patient information resources, visit Breast Cancer Care’s website breastcancercare.org.uk/publications


Helping people to move forward after breast cancer

Since 2008 Breast Cancer Care has worked with NHS hospitals to deliver Moving Forward courses. Kate Croxton, Head of Services (South), talks about the aims of the course and where we are now.The end of hospital-based treatment can be a time of mixed emotions for many people; often the feelings of relief and celebration that are expected fail to materialise. Many women expect to be able to return to the ‘normal’ life they lived before breast cancer; but a significant number struggle to do so and they feel different to the person they were before their diagnosis.

Difficulties in living with the ongoing physical and emotional side effects of treatment are common. Coming to terms with an altered body image and related sense of identity and the effects on relationships with partners and families can be a real challenge. For many, the biggest concern is the anxiety caused by the fear and uncertainty that their cancer might return, heightened by a lack of awareness to know how to spot the signs and symptoms of a recurrence.

Worryingly, evidence suggests that some of these physical and

psychological difficulties can persist for up to 10 years post-treatment, impacting significantly on a person’s ability to return to work or resume their previous role and responsibilities. It’s unsurprising, therefore, that rather than feeling jubilant at the end of treatment, many women report feeling lonely, isolated and lacking in self-confidence. Having access to information and support at the point when hospital-based treatment is finishing is therefore extremely important if breast cancer patients are to be empowered to manage their own physical and emotional health.

The need for enhanced and specialised ‘survivorship’ support for cancer patients is not a new concept in UK health policy. The National Cancer Survivorship Initiative (2013) recommended that all cancer patients are offered an integrated recovery package including patient education and support events, and this focus on supporting people to live with and beyond cancer was reiterated with the publication in July 2015 of the new cancer strategy for England, Achieving world-class cancer outcomes. Similarly, NHS England’s Five year forward view has, at its core, a strong commitment to empowering patients.

Ever increasing demands on the NHS and changes to follow-up care for breast cancer patients mean it’s even more pertinent that women are prepared and supported to self-manage the physical, emotional and social consequences of breast cancer. However, developing and

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I felt as though I had been asked to climb a mountain and I had been cheered on all the way – but now I had finally got to the top everyone had gone, and the wonderful view I had been promised just wasn’t there.Moving Forward course participant

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delivering supported self-management interventions in addition to doing the ‘day job’ presents a real challenge to NHS clinical teams.

So what’s the solution? Since 2008, Breast Cancer Care has been working in direct partnership with NHS hospitals to deliver Moving Forward courses. Co-designed with patients and breast care teams to address the information and support needs of breast cancer patients, the Moving Forward course is shaped around supporting people in their adjustment and recovery after breast cancer treatment, to find and establish their ‘new normal’.

Moving Forward courses typically run in local hospitals or breast clinics. They are free to attend, with participants normally referred by their breast care nurse. Each Moving Forward course is run over four half-day sessions for four weeks. Each week explores a different theme – for example, coping with side effects of

treatment – and comprises informal talks delivered by local healthcare professionals. Topics during the sessions can include, but are not limited to: cancer-related fatigue, recognising the signs and symptoms of a possible recurrence, physical activity, healthy eating and sex and intimacy. A member of Breast Cancer Care’s service delivery team co-ordinates and facilitates the course, working closely with the expert speaker to create an informal and interactive environment, where questions are welcomed and participants have the opportunity to share experiences and support one another. This means that as well as having access to an expert in each topic, participants benefit from built-in time for peer support from other attendees and from trained volunteers who are on hand for emotional support. This invaluable element of social action forms such an intrinsic part of Moving Forward.

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Breast Cancer Care’s Moving Forward course, week by week


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Where are we now?In 2015/16 we worked with over 30 NHS hospitals across the UK to deliver Moving Forward courses to 1,050 people. Breast Cancer Care’s evaluation has found that the courses have a significant impact on patient outcomes, with participants indicating an increased confidence about making future decisions related to living with and beyond breast cancer, staying breast and body aware after treatment, and knowing what information and support is available. The vast majority felt less isolated and had increased self-esteem.

As well as addressing patients’ concerns around fear of recurrence and a lack of self-efficacy, this demonstrates that Moving Forward can play an important role in supporting self-management and encouraging peer-to-peer support, often months and years after the courses.

So is working together the key? Breast care nurses tell us that Moving Forward complements their own work and means that their patients report less anxiety about breast cancer. Partnering with Breast Cancer Care enables beneficial group-based support to be delivered without encumbering clinical teams with the associated administration and co-ordination; time-consuming elements which often hamper the provision of this type of support. For Breast Cancer Care it enables us to put our resources where breast cancer patients tell us that they’re most needed and have the biggest impact. Together we can support people to live their life after breast cancer, rather than merely surviving.

Since we have been offering Moving Forward I have seen a huge benefit for the women who are able to attend. The course allows and promotes discussion of difficult and emotional topics in an environment which is supportive and confidential. Many women find it difficult to cope with side effects from their medication, are confused by articles they read in the media, about what

foods they should or should not be eating and what they can do to help promote good health long term.

Another important aspect that the course addresses is signs and symptoms of recurrence, which is a huge worry for the vast majority of women. Being able to give patients the opportunity to explore anxieties as well as how to identify any new changes that may need investigation and who to contact really does help give women who feel vulnerable a sense of control back in their recovery.

In a funny kind of way the hospital treatments became my new routine. Where before I was at the gym three times a week, I was now back and forth to the hospital. What I couldn’t cope with was when it all stopped and I didn’t know what to do with myself. I wasn’t well enough to go back to training again but I wasn’t ill in the sense that I needed to keep going to the hospital. I went on a Breast Cancer Care Moving Forward course, which really helped. I think it was the fact that all the sessions were by people with really specialist knowledge of their areas. There was a talk on stopping anxiety becoming panic – that was really useful. We were able to ask lots of questions.Moving Forward course participant

Our evaluations found that, out of approximately 950 respondents:

• 94% of people understood what they could do to help themselves live better after their treatment (compared to 38% before the course)

• 91% knew how to stay breast and body aware and which signs and symptoms they should report (compared to 35% before the course)

• 88% felt confident about making future decisions about their wellbeing (compared to 40% before the course)

• 93% knew where to find information and support (compared to 48% before the course).

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Moving Forward resource pack

Our Moving Forward resource pack is designed to help people move forward with confidence after treatment for primary breast cancer. It provides information and support concerning issues such as recurrence, ongoing side effects, relationships, wellbeing and financial practicalities. There is a particular focus on the emotional challenges of moving forward, such as coping with fears of recurrence, effects on sex and intimacy and dealing with anxiety and depression.

For all our publications, it’s essential we call on the experiences of people who have had breast cancer. For Moving Forward, we asked volunteers to complete a questionnaire on the various topics covered in the pack, and included their quotes and stories to illustrate and support the information given.

None of Breast Cancer Care’s publications would be possible without

the help of our clinical and lay reviewers. A number of healthcare professionals and people affected by breast cancer reviewed an early draft of Moving Forward, and we have reflected their feedback in the final pack.

Features of the revised Moving Forward resource pack:

• Refreshed branding throughout• Handy ‘publication pockets’ for each

section• NEW Clear, easy-to-use section

dividers for improved navigation• NEW ‘Your words’ – a selection of

inspirational quotes• Available as a downloadable PDF and

e-book for all types of e-readers

The new pack is available now from breastcancercare.org.uk/publications or by calling our Helpline on 0808 800 6000.

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If you are interested in finding out more about Moving Forward and how Breast Cancer Care can work with you to support your patients at the end of treatment for primary breast cancer, get in touch by emailing [email protected]


Health literacy

Breast awareness and breast cancer resources can be complicated. To support more people with clear information, health literacy must be considered, says Breast Cancer Care Head of Publishing Julia Bell.

There is growing realisation among health policymakers and healthcare professionals that much of the UK adult population has low levels of health literacy. This means people often can’t make effective use of patient information and public health messages.

The numbers involved are shocking. The UCL Institute of Health Equity (2015) suggests that, ‘In England, 42% of working-age adults (aged 16–65 years) are unable to understand or make use of everyday health information, rising to 61% when numeracy skills are also required for comprehension’. There is every reason to expect these statistics at least to be mirrored in the rest of the UK.

Health literacy levels affect outcomes, being ‘a social determinant of health and… strongly linked with other social determinants such as poverty, unemployment and membership of a minority ethnic group’ (Health Literacy UK, 2015).

At Breast Cancer Care, our aim is to make sure everyone affected by breast cancer has access to the best care, information and support. So we’ve been researching how we can improve access to breast awareness and breast cancer information for people with lower levels of health literacy.

In March I presented a poster about our research (see box below) at the

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Putting research into actionOur poster explained how we took three items of easy-to-read breast awareness materials out to 11 focus groups of people in areas of known deprivation and with low health literacy levels.

We are continuing to use the results of this work – carried out with the help of the Community Health and Learning Foundation – in all our patient information.

We are also developing new, more accessible resources. For example, you can now see the first iteration of What happens at a breast clinic? on our website breastcancercare.org.uk/breast-clinic.pdf

Nursing Network members will be included in the evaluation stage of new resources in the near future.

What is health literacy?‘The cognitive and social skills that determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health.’World Health Organization, 2015


annual conference in Glasgow of the UK Health Literacy Group (http://www.healthliteracy.org.uk) Health Literacy at the Deep End: Addressing Health Inequalities.

Co-chaired by two GPs – Chair of Health Literacy UK Jo Protheroe and Lead for Self-Management and Health Literacy Scotland Graham Kramer – the conference heard from health policy experts from all four UK countries.

Each in turn spoke about how health literacy needs are now firmly on the agenda, with increasing comprehension that people can’t be expected to act on health promotion messages, make informed decisions about their treatment or self-manage their condition if they aren’t able to understand associated health information.

This policy momentum was endorsed by the Chief Medical Officer for Scotland, obstetrician and gynaecologist Catherine Calderwood.

The conference featured a wide variety of presentations looking at different strands of activity.

• Jo’s Cervical Cancer Trust talked about developing a short film, Your guide to cervical screening, for black and minority ethnic women, co-creating it with women from the target audience group. Their work highlighted the importance of the cultural meaning of cancer for some communities as a barrier to early diagnosis.

• A study into whether and how community pharmacies might be able to support health literacy. This highlighted the importance of the role of healthcare professionals since by far the most popular way to receive patient information was on paper from a healthcare professional as part of a contextual discussion.

• A wide interpretation of the term ‘health literacy’ was brought to light by a study called Health literacy practices in a 3D social virtual world: A social model of health literacy. This explored the hypothesis that health literacy can be more than an individual attribute. It used interviews with participants in the virtual world Second Life, which demonstrated that ‘people use their social virtual world networks to search for, access, experience, appraise, understand and make decisions to use health information’.

• Other presentations included health literacy initiatives in an early years centre, among young offenders and in people with learning disabilities.

The diversity of approach did much to increase confidence that health literacy is genuinely being recognised and acted on as an important step on the road to greater health equality.

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References Health Literacy UK (2015) Why is health literacy important? Available at www.healthliteracy.org.uk [accessed 25 April 2016] UCL Institute for Health Equity (2015) Local action on health inequalities: Improving health literacy to reduce health inequalities, available at www.instituteofhealthequity.org/Content/FileManager/Publications/PHE/4a-health-literacy-full.pdf [accessed 17 February 2016] World Health Organization (2015) Health literacy and health behaviour. Track 2, 7th Global Conference on Health Promotion, available at www.who.int/healthpromotion/conferences/7gchp/track2/en/ [accessed 22 January 2016]

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For family. For friends. For Breast Cancer Care.Will you do something special this summer and help Breast Cancer Care to support more families affected by breast cancer? Host a Strawberry Tea by putting on a lovely afternoon tea with strawberry treats for friends or colleagues.It’s the perfect excuse to get together, and whether you raise £30 or £300, every penny means more support for people facing breast cancer.

Get in touch for your free fundraising kit. 0300 100 4442breastcancercare.org.uk/strawberry

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