Stronger together: support services for people living with and beyond breast cancer Who we are and what we do Your guide to free services Breast Cancer Care is the only UK-wide charity providing specialist information and support for people affected by breast for your patients: contents cancer and the healthcare professionals who care for them. For over 40 years we’ve helped thousands of people feel better informed, more confident and in control, supporting them to Introduction 4 manage their day-to-day life and the emotional upheaval of breast cancer. How our services work 6 As a healthcare professional you know more than anyone that Helpline 8 a breast cancer diagnosis changes everything and that people Website and Forum 9 can feel overwhelmed, scared and alone. So we want to work Information resources and Information Points 10 closely with you to help ensure your patients get the best BECCA app 11 support, information and care. We offer expert, tailored and friendly support services to enhance and complement Moving Forward* 12 the care you provide. We’re here to listen, understand, care Someone Like Me 18 and help people move forward with more confidence when Living with Secondary Breast Cancer 22 hospital-based treatment has finished. Younger Women Together 24 For more information about our services contact us on Evidence of the benefits of our support services 26 0345 077 1893 or email [email protected]

*Moving Forward® is a registered trademark.

2 3 Moving Forward helps people to adjust to life after Introduction hospital-based treatment. It is provided in partnership As a healthcare professional you know that people affected by breast cancer have with NHS trusts and health boards across the UK. many different needs and concerns. Their diagnoses, prognoses and treatments vary Information and support encouraging self-management widely, as do their life circumstances. of ongoing physical and emotional issues is provided in Breast Cancer Care’s telephone Helpline, website, online Forum and Information four sessions over four weeks. Importantly, people also Points provide a wealth of information and support for everyone affected by breast have the chance to share their experiences with peers in cancer, as well as resources for healthcare professionals. And for groups who benefit a safe and caring environment. from a more tailored approach, we’ve designed services to meet their needs. See page 12

Helpline and Forum Questions about breast cancer? Or if Someone Like Me is a one-to-one peer support service your patients want more information, to talk things through that pairs a patient, friend or family member with a trained or find more support, Breast Cancer Care’s Helpline volunteer with similar experience. People are carefully experts are available by phone or email. And if they want matched for a variety of factors, including their treatments, to get in touch with other people affected by breast cancer personal circumstances, priorities and concerns. our online Forum is available 24 hours a day. See page 18 See page 8

Information resources in print and on our website Living with Secondary Breast Cancer sessions Our award-winning range of publications and other are monthly meet-ups supporting people to live with information resources are available in print and online. We secondary breast cancer, and complementing their also supply Information Points free of charge for hospital treatment and care. Regular sessions in a safe and relaxed clinics and cancer support centres. Topics covered by our environment give information about all aspects of living extensive portfolio include breast cancer diagnosis and with the disease, along with the chance to meet and talk treatment, and breast health. openly with other people with the same diagnosis. See pages 9 and 10 See page 22

The BECCA mobile app serves up trustworthy tailored Younger Women Together information and support information and supportive ideas for people trying to events are for women aged up to 45 who have been adapt to daily life once hospital-based treatment ends. diagnosed with primary breast cancer. This comparatively Daily ‘flashcards’ are delivered to their mobile phone. small group of patients often feel particularly isolated as See page 11 their concerns about family, fertility, career and sexuality are not usually the same as those of older women. See page 24

4 5 How our services work Find out more about how Breast Cancer Care’s services work, how they align with government policies and the evidence for their effectiveness.

Working in partnership Underpinning national strategies Our services can play a significant role in the implementation of supported People can access our services through and local pathways The Recovery Package self-management, enabling patients to our website or Helpline and we have ‘The Recovery Package is a series There is a strong commitment to make informed choices and encouraging Information Points in more than 160 NHS of key interventions which, when empowering patients in key national peer-to-peer support networks that often hospitals. These are stocked with our delivered together, can greatly policy documents: last for months or years. patient information so that it’s freely and improve outcomes for people living • easily available. Achieving world-class cancer with and beyond cancer.’ outcomes: a strategy for England 2015– But your help is invaluable, signposting 2020 . and explaining our services to your • Cancer Delivery Plan for Wales 2016– It was developed and tested by patients. Without this, it’s harder for us 2020 The National Cancer Survivorship to reach the right people – an invitation • Beating Cancer: Ambition and Action, Initiative. One element of the package from a trusted healthcare professional launched by the Scottish Government is an education and support event has been proven to be more effective to in March 2016 for patients to help them move encourage people to take up services forward with confidence after cancer than any type of marketing. Even better if These strategies highlight the need for diagnosis and treatment. it’s delivered face to face. high-quality information for patients living with and beyond cancer, and recognise However, the last thing we want to do is the benefits of support services. to add to your workload, so we provide you with all the tools and resources In England and Wales there is a you need. commitment to providing these key elements of the Recovery Package for We can help you to support your cancer patients (see Box). In Scotland, patients in the ways that best the strategy envisages health, social care meet their needs. and the third sector working together so that transition for everyone with a cancer diagnosis is not only supportive but also meets the needs of the individual.

6 7 Helpline Website and Forum If you as a healthcare professional have a question about breast cancer Our website is a wide-ranging resource of expert information about – or if your patients want more information, to talk things through or find breast cancer and breast health, as well as blogs and real-life stories so more support – our experts are at the end of a phone line. All calls are people know that they are not alone with their life-changing diagnosis. answered by specialist breast care nurses or highly trained Helpline staff.

Whatever your patients’ concerns, you We are open six days It also explains all our services, can be confident that the information a week and volunteering and fundraising ‘I really want to thank all of you… they’ll receive is clear, accurate and opportunities, as well as a wealth of on this forum… for making this up-to-date. Monday to Friday, 9am–4pm, information for healthcare professionals. extremely difficult time in my life Saturdays, 9am–1pm. Go to breastcancercare.org.uk as easy as possible for me to Call free on The welcoming online Forum is there deal with… You make me laugh, for your patients, with practical and make me feel better on a down 0808 800 6000 emotional support at any time of the day day. You give all the best advice or night. Whether they’re worried about from the heart but most of all, you their breasts, wondering how they’ll understand.’ cope with their diagnosis or treatment, or concerned about a friend, they’ll find this a welcoming community of understanding people offering 24-hour access to online support.

Visit the Forum at forum.breastcancercare.org.uk

8 9 Information resources The BECCA mobile app You can rely on our award-winning range of publications and other The BECCA app supports people as they come to terms with their information resources. Whether it’s for you or your patients, topics experience, delivering day-to-day strategies and tips direct to their mobile covered by our extensive portfolio include breast cancer diagnosis and phone. Simple flashcards cover a range of topics, from wellbeing and treatment, and breast health. mindfulness to insights from other patients, reminding people that they're not alone and helping them to adjust to life beyond breast cancer.

All resources are free, written by clinical The Information Points are stocked and The app can be accessed 24 hours a specialists and reviewed by independent maintained by volunteers recruited, day, complementing the Moving Forward healthcare professionals and people trained and supported by us. course and available for anyone to use if affected by breast cancer. Both our Our Information Points make it easy for they are looking for support to move on. print and online patient information people visiting breast clinics to find the Kim Hulme, 47, from Dartmoor in Devon, is accredited by the NHS England right leaflets and resources. They also was diagnosed in May 2016. She has Information Standard as high quality, help breast care nursing teams to keep been using the BECCA app since she user-friendly, accurate and up-to-date. patients well informed and save them finished treatment. See the full range and order free at time ordering supplies. breastcancercare.org.uk/publications ‘Living in a remote area, I felt Information Points ‘We’ve always used Breast cut off from support and was Cancer Care publications to back desperate for something I could Our patient information can be displayed up our discussions with patients, access online… BECCA has been on Breast Cancer Care Information but we also like patients to be absolutely perfect for me. It has Points, which we place on request and able to choose for themselves the reminded me to look after myself free of charge in hospitals and cancer booklets that may be useful to and helped me change how I feel. support centres. them. Our Information Point, in the For instance, I felt really wobbly Each stand has a selection of top titles entrance to the unit, is the perfect about exercise and needed to from our range of information resources way to display valuable resources know how to get back into it slowly including leaflets on breast health and to those we care for.’ – the app has helped me do that.’ breast cancer. The stands come in two Heidi Barclay, types: freestanding or wall-mounted. Clinical Nurse Specialist, Broomfield Hospital, Essex You can find the app by searching for ‘BECCA’ in the If you would like to discuss placing an App store and Google Play Information Point in your location, please call our Services Support Team on 0345 077 1893

10 11 Moving Forward The Moving Forward course supports people adjusting to life after Participants are: hospital-based treatment. Four weekly sessions provide the information ‘When treatment finished I was • helped to understand the impact that and support people need to help manage ongoing physical and delighted, but I also felt quite breast cancer can have emotional issues. Sharing their experiences with others in a safe and isolated. Breast Cancer Care • reassured that their fears and concerns caring environment is also important and one of the benefits highlighted enabled me to accept that I’m not are normal by participants. alone in my worries for the future, • supported in coping with anxiety and helped me find a way to • encouraged to feel confident in sharing share how I feel with those close their experiences within the group to me.’ • given the information they need about Suzanne, Birmingham the possible longer-term effects of The need treatment Research shows that many people with Moving Forward addresses some of The programme • supported in discussing changes in body image breast cancer are left with a range of these gaps by supporting patients to Typically, weekly three-hour sessions are • supported in discussing the impact on unmet needs following treatment. Factors manage their condition with knowledge run over four weeks, either in a suitable relationships that can negatively impact on their quality and confidence. And because this room in the hospital or at another local • helped to recognise possible symptoms of life include: reduces the need for expensive routine venue. Patients are asked to commit of recurrence, and advised on how to • side effects of treatment, including follow-up appointments, clinical time is to the full course, and up to 20 people report them and how to access more fatigue, lymphoedema and menopausal freed-up for other patients. attend, giving them the chance to get to psychological support symptoms As Moving Forward courses are planned know each other and share experiences. • physical changes such as weight gain and delivered in partnership with Sessions are run by a facilitator Healthcare professionals give talks on a and chronic pain healthcare professionals, together we commissioned by us, or by a member range of key subjects with allotted time • psychological problems such as can ensure that they provide information of Breast Cancer Care staff, assisted by for discussion and peer-to-peer support. anxiety, depression and altered body and support specifically tailored to breast trained volunteers. image cancer patients, acknowledging and Topics the course may include: • Introduction to Moving Forward • relationship, intimacy and fertility issues meeting the needs outlined above. • Lymphoedema – reducing the Attending the course risks and management Care and integrity are central to • Menopausal symptoms our work. We ask everyone taking • financial and employment problems • Activity and energy part in the course to show each • Cancer related fatigue other consideration, respect and • Eating for health – dispelling understanding, and respect the What we offer and how it works the myths confidentiality of the group. Looking for a way • Breast and body awareness National cancer strategies recognise • Relationships and We also ask you to commit to the We understand breast cancer changes everything. to move forward? communication whole course and attendWhen each you have breast cancer, everything If you’ve had treatment for breast cancer and are • Adjusting and adapting session. Please tell us as soon as The course is aimed at patients who • Complementary therapies. changes. At Breast Cancer Care, we understand these issues, with a clear commitment looking for support on how to adjust and cope, possible if you have any medical A course to help you adjust to life after treatment for breast cancer appointments duringthe the course,emotions, challenges and decisions you face we can help. Join us and meet other people like or if you’re no longerevery able to day. That’s why we offer vital support and are near the end of their hospital-based you on our Moving Forward course. attend the course soinformation we can offer and campaign for better care. to making the patient experience as The course is designed for people the place to someone else. that are approaching the end of People often tell us that although Whether you want to speak to our nurses or their hospital based treatment for treatment for primary breast cancer or finishing hospital based treatment trained staff, read reliable information or connect primary breast cancer, or those ‘WhentreatmentfinishedIwas important as clinical excellence and is a relief, they feel anxious about with someone who’s faced what you are facing who have recently completed delighted,butIalsofeltquite what’s ahead. We understand treatment. Please get in touch if isolated.BreastCancerCare now, we’ll help you feel more in control. your need for support doesn’t who have finished their primary treatment you’d like to attend the course but enabledmetoacceptthat providing support for people to live well end when treatment finishes, aren’t at this stage of treatment. I’mnotaloneinmyworries For breast cancer care, support and and you may need some time forthefuture.’ information, call free on 0808 800 6000 to come to terms with all the within the past two years. or visit breastcancercare.org.uk beyond a diagnosis of breast cancer, changes that have taken place. Suzanne,Birmingham So we’re working with the NHS to Course dates provide a Moving Forward course The Moving Forward course takes – a programme of information place in Sheffield, and runs for half through initiatives such as the Recovery sessions to help you adjust and a day each week over four weeks. adapt after a diagnosis. You’ll need to be available for, and commit to attending, all four Package (see box page 6). But pressure The course is designed to weeks of the course. help increase your knowledge, ‘I gained comfort from being in confidence and overall wellbeing. 26 January, 2, 9 & 16 February It provides information, support 2018 on NHS resources and the growing and professional guidance on a room with people who have all a range of topics to help you 20, 27 April, 4 & 11 May 2018 know how to cope with changes, numbers of people living with and beyond manage uncertainties and 6, 13, 20 & 27 July 2018 been in the same boat as me. And establish a ‘new normal’. Expert speakers are happy to answer 5, 12, 19 & 26 October 2018 breast cancer has left gaps in provision questions, and each course is attended by up to 16 people so 18, 25 January, 1 & 8 February now I feel that I’ve been given a it’s also a chance to get to know 2019 so that patients often miss out on this The breast cancer others in a similar situation. support charity chance at life.’ To find out more contact your breast care nurse or Breast Cancer Care on 0345 077 1893 or email [email protected] vital support. Moving Forward is a registered trademark, 2017 Carol, Registered charity in England and Wales 1017658 and in Scotland SC038104

12 13 The role of healthcare professionals Breast Cancer Care’s role Providing specialist knowledge in Structuring the course, including planning and delivering the sessions tailoring the content and assisting with sourcing expert speakers

Providing the venue and IT equipment Coordinating the course, handling the registration, administration and facilitation of the groups Referring patients to the course by Training and supporting Moving explaining the benefits and encouraging Forward facilitators and volunteers attendance to deliver courses The NHS and Breast Cancer Care Moving Forward resource Contributing to ongoing improvements Conducting the evaluation and working together From signs and symptoms of recurrence through review meetings compiling reports for each course We now run over 200 Moving Forward to dealing with fatigue and financial courses a year in partnership with NHS issues, this resource complements the We understand the pressures faced with briefings and a toolkit of resources trusts and health boards across the UK. Moving Forward course. It offers practical by healthcare professionals, so Moving to help them plan and deliver their The success is built on: solutions, sources of further support and Forward is designed to ensure that your sessions. We also carry out monitoring insights from other people in the • clearly defined partnerships involvement adds as little as possible and evaluation, providing partners with same situation. with clinicians, breast care to your workload. We provide speakers feedback and impact reports. nurses and clinical nurse specialists • programmes tailored specifically for breast cancer patients as a result of Breast Cancer Care and healthcare professionals working together to identify needs • expert speakers and high- quality information, including a copy of our comprehensive Moving Forward resource for every attendee • time allocated for informal group discussions and peer support • accessible times and venues Moving Forward: for people living with and beyond a diagnosis of primary breast cancer 14 15 Support from healthcare How do patients access the professionals ‘The course allows patients an ‘Sharing experiences with other service? opportunity to explore and discuss people with breast cancer can The programme is firmly backed by the The most straightforward way for patients the issues affecting them in a safe help patients to normalise their healthcare professionals delivering it. to access a Moving Forward course is and confidential environment, situation, make sense of what has They see it as complementing their work through direct referral from a breast care putting to rest any fears and happened and develop a range of in supporting patients through diagnosis, nurse or other healthcare professional anxieties related to their diagnosis strategies to help them adjust and treatment and recovery, and providing an to Breast Cancer Care’s Services and treatment.’ build their confidence.’ essential part of the Recovery Package. Support Team. Finola Woodhouse, Breast Care Nurse, Dr Emma Selwood, Western General Hospital, Edinburgh Clinical Psychologist, When we set up a course in partnership with you, we arrange a simple referral ‘We have had lots of positive system where patients are contacted feedback, particularly about the Meeting the specific needs of by us at the relevant time and invited to invaluable peer support that comes breast cancer patients ‘Moving Forward provides an register on the next available course. The through shared experiences and process works best when patients are Moving Forward is the only health opportunity to give patients a the lasting friendships that have told about the course at an early stage and wellbeing intervention specific broader perspective about breast developed.’ and when the course is seen as part of to breast cancer patients, providing cancer and how we make decisions Fiona Armitage and Angela Oakley, on treatment. As a clinician it is also the patient pathway. Breast Care Nurses, tailored post-treatment support and good to see patients in a slightly Royal Hallamshire Hospital, Sheffield information. In our 2017 survey of over Details of all Moving Forward courses are 800 course attendees, conducted by less formal and time-pressured also available on our website. independent researchers Frontline, 96% environment than the clinic.’ of respondents said that they preferred a Matthew Barber, Consultant Breast Surgeon, breast-specific format. St Johns Hospital, Livingston Call 0345 077 1893 ‘The Moving Forward course is Clinical nurse specialists understand Website breastcancercare invaluable in supporting patients, that the course can address sensitive .org.uk/moving-forward either during or at the end of their issues such as sexuality, body image, ‘The course is very helpful for treatment.’ menopausal symptoms and fertility, breast care nurses as well as Julie Smith, which can be difficult to discuss on patients, as it gives us a platform University Hospital Llandough, Cardiff generic cancer support courses. to discuss anything that patients Conversely, generic cancer support feel needs addressing, particularly courses can be dominated by the larger issues that are not always brought numbers of people with breast cancer, up in clinic.’ which can lead to people with less Mags Moore, Breast Care Nurse, common cancers feeling marginalised. Glan Clwyd Hospital, Rhyl

16 17 Someone Like Me Someone Like Me is a one-to-one peer support service, matching the patient with a trained volunteer whose experience of breast cancer and/ or personal circumstances are similar to their own. It is also open to partners, families and friends and accessed by telephone or email.

The need We aim to support people with whatever Volunteers go through a careful selection Every patient’s breast cancer is different, ‘I was trying to work out how I concerns them most. Our team will talk process followed by comprehensive and their particular concerns will vary too. would manage to go back to in depth with your patient to get a clear training, which includes role-play and The chance to speak to someone who work after my diagnosis. It was picture of their diagnosis and treatments, covers topics such as listening skills, has been through the same diagnosis the process of going back to work their personal circumstances and the appropriate disclosure, how to avoid and experienced similar concerns can after a long break that caused issues currently affecting them, for creating dependency and ending deeply complement the expert support me the most grief, rather than my example, having surgery, chemotherapy support. All are assigned an experienced provided by the clinical team. treatment. The service put me in and/or radiotherapy. This enables us mentor and they receive ongoing touch with Arlene, who has been to select the volunteer best placed to support, supervision and training Increasingly, patients are asked to make brilliant… It has been really useful provide the sort of support the patient throughout their time in the role. decisions about their treatment, for to talk to someone who “gets it” is seeking – whether it's making an The vast majority of our volunteers have example, reconstructive choices or when – she understands the fears, the informed decision about treatments or chemotherapy is predicted to offer only had a diagnosis of breast cancer but concerns and the hopes, and reconstructive surgery, coping with the some are partners of people who have marginal benefit. Speaking with a trained has helped me confirm what to shock of diagnosis, managing family life volunteer with first-hand experience of had breast cancer. Others have an do next.’ or regaining some sort of normality after altered gene that increases their risk treatments or who has faced a similar treatment. decision can help patients to make Lisa Rüll, Nottingham of breast cancer but have not had a informed choices. Equally, it’s for Our Someone Like Me volunteers: cancer diagnosis. people who might just be feeling down, What we offer and how it works • listen isolated or want to chat through more • offer emotional support and Someone Like Me is for people who emotional issues. practical tips have, or have had, primary breast cancer • share their own experiences without and people undergoing genetic testing providing medical advice or who have received a genetic • support patients in making informed diagnosis, as well as for their partners, decisions without being directive or family and friends. imposing their own views

18 19 How do patients access Case study: Jackie Milani, ‘Someone Like Me arranged for a the service? ‘We identify a patient’s concerns London volunteer called Annie to call me. Patients can access Someone Like Me through an assessment with Being diagnosed with breast cancer in She’d been through it six years ago. directly by phone, email or through our them. Often people feel isolated April 2017 was a ‘real shock’ for 59-year- ‘I’ve spoken to her a few times, and website. A member of the team will and vulnerable after they’ve been old Jackie Milani. Apart from having she is very supportive, uplifting, with a chat through their circumstances and diagnosed, or feel that they need children and having her tonsils out, she’d lovely voice and so positive. She helped concerns to enable us to identify the best to talk to someone about the not been in hospital before. She was so me to realise that if I needed support, it possible match. We can also, with patient treatment decisions they need to shocked that initially she couldn’t eat. was OK. She told me that once you get make. If we think that they’d benefit consent, accept direct referrals from She said, ‘My diagnosis was triple into the rhythm of your treatments, it from speaking to a volunteer who’s healthcare professionals. negative and while I was having my can go so quickly – which I found to be been in a similar position to them, chemotherapy I started to feel that I the case. I’ll tell them about the service or I’ll wasn’t coping and I really needed to ask for their consent to be referred. ‘I feel that I’ve learnt so much and Call 0345 077 1893 talk to someone who had had a It’s easy for me to drop the team an been so lucky. I’m now doing my similar experience. Email someonelikeme@ email with their name and number. daily, normal things like cleaning the breastcancercare.org.uk The patient then has someone to bathroom or going shopping. I can’t talk to outside of their family and sing the praises of the NHS highly Email support is also offered by some friends, which can help them feel enough. And having support from volunteers if patients prefer. Profiles of less alone.’ someone with the same diagnosis as me has been a great comfort.’ these volunteers are on our website Deborah Mumford, Breast Care Nurse, and they can be emailed directly. Royal Glamorgan Hospital Breast Cancer Care staff monitor the first contact emails to ensure all patients receive an appropriate and timely response.

20 21 Case study: Ione Wyatt, Dorset How do patients access Living with Secondary the service? Patients can get in touch by phone, Breast Cancer email or via our website. We try to speak to everyone before they come along to This service is for women with incurable secondary breast cancer, answer any questions and ensure the bringing them together to support each other, and providing information service will meet their needs. and support tailored to their particular needs. We are also happy to accept referrals direct from healthcare professionals if patients provide consent for us to contact them. The need What we offer and how it works Nine years after Ione had treatment When patients receive a life-limiting Our Living with Secondary Breast Cancer for primary breast cancer a scan for Call 0345 077 1893 diagnosis of secondary breast cancer support service has been running across backache showed that the cancer had it can affect every area of their lives. the UK since 2011. Working together spread to several parts of her body. Email secondaryservices@ Their practical and emotional support with the NHS, the service complements needs will vary as time goes on and the treatment, care and support that In 2014 at age 69, she was told she breastcancercare.org.uk they are likely to be on treatment for healthcare professionals provide. probably had around three years to live Website breastcancercare the rest of their lives. Yet our research but today is still well enough to attend .org.uk/lwsbc Monthly sessions held in a safe and a Living with Secondary Breast Cancer shows that all too often women with relaxed environment cover all aspects of secondary breast cancer have less group in Dorset. living with the disease. Just as important, Attending a session like this for this first access to a clinical nurse specialist Ione says: ‘I thought it would be very they also offer patients the chance to time can be quite nerve-wracking for than people with a primary diagnosis depressing but in fact it was quite meet and talk openly with other women a patient so we know that an invitation and that their information needs aren’t different. There was a lot of laughter, with with the same diagnosis. handed out by a trusted healthcare always met (research reports available at everyone having a chance to discuss professional accompanied by active breastcancercare.org.uk/secondary) Each group is led by a qualified their symptoms and what the latest encouragement makes it much more counsellor skilled in group facilitation and techniques might be, all guided by a likely they will come along. in supporting people with a life-limiting wonderful facilitator. ‘Diagnosis was like an earthquake illness, while the clinical aspects are as I was a fit, keen mountaineer. overseen by Breast Cancer Care’s ‘It’s joyful – it makes us forget about My strength and confidence were in-house secondary breast cancer clinical the negative things and feel much more destroyed. Knowing that it is nurse specialist. positive about what we CAN do with incurable means you have to face our lives. It gives people like me a real And for women under 45, we hold an your own mortality and I took a good reason for living a lot longer.’ annual event, Younger Women with long time to come to terms with Secondaries Together. This brings this. I can’t plan ahead with any people together for two full days, certainty and my life revolves round usually from Friday to Saturday, with my three-weekly visits to hospital, free accommodation on the Friday which have now been going on for night, giving them the time they need 11 years.’ to build supportive friendships. See the Chris Jowett, Dunlop, Kilmarnock next section.

22 23 There are also less formal small-group Once a year we hold a tailored event, Younger Women Together sessions with plenty of discussion on Younger Women with Secondaries subjects such as fertility, menopausal Together, for women in the same Younger Women Together information and support events are for women symptoms, intimacy and sexuality, and age group whose cancer has spread aged up to 45 who have been diagnosed with primary breast cancer breast surgery and reconstruction. All and is no longer curable. The format in the previous three years. These younger patients can feel particularly sessions are delivered by experts, often is similar but the topics covered are isolated; concerns about family, fertility, career and sexuality are not from within the NHS, and women have designed for this audience including, always the same as those of older women. plenty of time to ask questions. for example, palliative care, talking to The moments between sessions, children and adjusting and adapting to a including the Friday evening, are equally life-limiting illness. important as informal opportunities for How do patients access women to share experiences, talk about the service? The need the impact of their diagnosis and build support networks, which often last for Eligible patients complete a In the UK, fewer than 6,000 women many years. registration form. aged 45 and under are diagnosed with ‘Patients find the peer support from breast cancer each year. This means they meeting others in a similar situation Women are able to: invaluable and new friendships are unlikely to meet anyone of a similar • meet other women in a similar situation, are formed. They can talk openly age in clinic or while having treatment. helping to reduce their feelings of Call 0345 077 1893 about their fears and concerns in Additionally, serious illness may not be isolation a safe environment, learning and Email youngerwomen@ something they and their friends have • share experiences and talk about the understanding their own cancer breastcancercare.org.uk previously encountered. At the same impact of their diagnosis journey – allowing them to question time, a breast cancer diagnosis often • hear from and ask questions of expert Website breastcancercare and find out their own way to move forces women to make decisions about speakers on a range of topics forward.’ .org.uk/ywt their future much earlier than they would • learn how they can move forward with otherwise do and it can have a major Linda Hammel, Nurse Specialist in Breast their life after breast cancer impact on both their families and Care, St John’s Hospital, Livingston their careers. A typical programme What we offer and how it works Every Younger Women Together event includes presentations from healthcare ‘The London Younger Women Younger Women Together events bring professionals and discussions among Together event was fantastic. Not together up to 40 women for two full participants on topics such as: only did I make friends who “get days. They usually run from Friday to me”, but I learnt that I wasn’t on my Saturday with free accommodation for • the clinical management of breast own. So many of my issues were participants on the Friday night. cancer in younger women shared. It was great to be able to The event features whole-group sessions • breast surgery and reconstruction talk and to get so much advice with presentations from experts on topics • menopausal symptoms on what I can do and the support such as: • relationships and communication that’s out there.’ • intimacy and sexuality • management of breast cancer in Amanda MacLean • fertility after treatment younger women (diagnosed in 2015 when she was 41) • lymphoedema • physical activity • mindfulness and laughter • nutrition and diet myths • patients’ personal perspectives

24 25 Someone Like Me service Living with Secondary Breast Cancer Evidence of the benefits of A joint study of 44 women by Kings College London and Guy’s and St In 2016, we commissioned an our support services Thomas’ NHS Foundation Trust found independent study of the impact of that people using the Someone Like Me Living with Secondary Breast Cancer service had an improved quality of life (Breast Cancer Care, 2017), which compared to a control group and that found that healthcare professionals Moving Forward courses Changes in average quality of life they were less distressed and worried valued the service. Many saw it as Initial research (Kirshbaum et al, 2016) score pre- and post-course at three-month follow-up. Perceived addressing patients’ needs holistically conducted by Breast Cancer Care isolation also decreased during the study in a way that clinical services could not, with Calderdale and Huddersfield period for people receiving the service complementing clinical care and helping NHS Foundation Trust, showed that but increased significantly for those who healthcare professionals to deliver an the trial model for follow-up (Moving did not. integrated care pathway. Forward course followed by discharge Women using Someone Like Healthcare professionals also valued to open access) provided an acceptable Me reported: the fact that the service was delivered alternative to routine hospital-based • feeling reassured, empowered and outside the hospital, a place so often follow-up. This supported the evidence validated – 71% said they received associated with traumatic events such for a stratified pathway for low-risk cancer useful information, practical tips and as diagnosis and treatment. And they patients incorporating self-management support noticed that people receiving the service education. Moving Forward enables people to • experiencing empathy – 68% said they became more involved in decision- In 2017, as part of an economic become active self-managers of their felt less alone and isolated making, communicated more clearly and evaluation of Moving Forward, own health and wellbeing. This was • achieving ‘normalisation’ developed better coping strategies. It standardised patient self-reported demonstrated in our evaluation using • finding a ‘sounding board’ also helped healthcare professionals measures were used to explore further the Patient Activation Measure (PAM), • feeling that they were in a safe shared to raise difficult subjects: in fact, the impact of the course. This is one of a metric that measures changes in space healthcare professionals noticed that the first studies to evaluate a survivorship self-confidence within the context of • gaining strength the women now often started such intervention for cancer patients using EQ- self-management programmes. Our • thinking more positively – 73% said it conversations themselves. 5D, an internationally recognised tool for evaluation showed that Moving Forward gave them hope for the future Reference measuring quality of life. increases self-confidence. People who • changing their perspective Living well with secondary breast cancer: how our reported that they were struggling with support service helps. Impact evaluation report of The average EQ-5D score for the general The researchers recommended that the health concerns after breast cancer the Living with Secondary Breast Cancer service. female population is 0.85, considered to service be offered as part of a holistic stated that they were able to make and Breast Cancer Care, London 2017 be an indicator of ‘normal’ quality of life. care package complementing the work maintain positive lifestyle changes as a The Moving Forward course was shown of healthcare professionals at diagnosis, result of attending the course. to make a significant difference to quality during treatment and post-treatment. of life with the average score increasing Reference from 0.79 prior to attending the course, to M Kirshbaum et al. Open access follow-up care 0.83 one month after attending. for early breast cancer: A randomised controlled quality of life analysis. European Journal of Cancer Care, 2016

26 27 The breast cancer support charity Breast cancer changes everything. Breast Cancer Care understands the emotions, challenges and decisions people face every day. We know that everyone’s experience is different. That’s why we are here to offer support and information, and campaign for better care. For breast cancer care, support and infomation, call us free on 0808 800 6000 or visit breastcancercare.org.uk

Central office Sheffield office Breast Cancer Care Breast Cancer Care Chester House St James House 1-3 Brixton Road Vicar Lane London SW9 6DE Sheffield S1 2EX

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Registered charity in England and Wales 1017658 Registered charity in Scotland SC038104 Registered company in England 2447182