Supporting men affected by male cancer
Every year over 50,000 men in the UK will be diagnosed with prostate, testicular and penile cancer. Of these men over 47,000 will be diagnosed with prostate cancer, over 2,400 will be diagnosed with testicular cancer and over 630 will be diagnosed with the rare penile cancer. Sadly, these numbers are increasing. (Figures Cancer Research uk; 2014).
Orchid is the UK’s leading charity working on behalf of anyone affected by or interested in male cancer – prostate, testicular and penile cancer. Established in 1996 by testicular cancer patient, Colin Osborne MBE and the oncologist who saved his life, Professor Tim Oliver, Orchid exists to save men’s lives from male cancer through a range of support services, education and awareness campaigns and a pioneering research programme.
- I) Support services – Orchid offers everyone affected by or interested in male cancer an extensive range of services. We offer a comprehensive information service staffed by specialist Male Cancer Information Nurse Specialists, a freephone National Male Cancer Helpline 0808 802 0010 and email firstname.lastname@example.org, a portfolio of publications which are independently reviewed and evidence based, an award winning DVD ‘Know Your Balls…Check Em Out’, a testicular cancer microsite “Your Privates” and educational resource pack, a telephone based Testicular Cancer Counselling Service, a dedicated website and newsletter low-down. Staff also run Roadshows across the UK offering support and information in the heart of the community. All our services are free of charge. Demand for these services continues to increase – last year we distributed over 490,000 items of information, an increase of 36% on the previous year.
- II) Education and awareness campaigns – on a national level Orchid raises awareness of male cancer and educates men in the signs and symptoms of cancer. The Orchid Male Cancer Information Nurses and volunteers work closely with health and social care professionals, other voluntary organisations, community groups and support networks, schools, universities and local companies to deliver education and health awareness programmes and wellness sessions thereby ensuring men of all ages are well informed.
In 2011 we launched the Orchid Community Golf Programme as part of our continuing commitment to education programmes for young people. This is a unique, exciting opportunity to bring golf to young people. Using specialist SNAG (Starting New at Golf) equipment, the programme is designed to encourage young people to keep fit and healthy whilst promoting good citizenship, community sport and learning about male cancer and the work of Orchid. The programme has already attracted over 18,500 participants. Throughout the year we run campaigns on a range of issues. The annual Orchid Male Cancer Awareness Week has quickly become a recognised campaign in the healthcare diary and is featured in national, regional, local and trade media. The sixth Orchid Male Cancer Awareness Week took place from the 7-13 April 2014 and the focus for the Week was testicular cancer. The Week saw the launch of the first Orchid National Male Cancer Helpline staffed by our Male Cancer Information Nurse Specialists. An independent survey of 3,000 men aged 18-50 from across the UK was commissioned, to gain insight into current levels of testicular cancer awareness, how these compared to 2009, how often men visited their GP, and who / where they turned to when they had concerns about their health. Highlights included: 82% of men believed that awareness of testicular cancer had improved in the last 5 years, two thirds of men in the UK admitted that they still don’t know how to correctly check themselves and 1 in 4 men would tell their mum or partner if they found a lump, rather than their GP. The Week attracted support and interest from companies, schools, universities, health and social care professionals, individuals, other charities and the media. Building on the success of this annual campaign, Orchid launched the first Male Cancer Awareness Month from the 1-28 February 2015. Male Cancer Awareness Month was designed to raise awareness of male-specific cancers; highlighting the early warning signs and encouraging men to seek an early diagnosis and increase their chances of survival. A key focus was the relationship between fathers and sons, emphasising that testicular cancer is the most common cancer in men aged between 15 and 45. The campaign included:
- “Check your Chaps” Campaign. “Check your Chaps” was a high profile testicular cancer awareness campaign on the Lorraine programme. The aim was to encourage women and men to be aware of the signs and symptoms of testicular cancer and to carry out regular self-checks. Supported by Brian McFadden, member of the boyband Westlife and his wife Vogue, the week long campaign saw interviews with TV doctor Dr Hilary Jones, Dr Jonathan Shamash and Orchid case studies.
- Fathers and Sons. The campaign launched with “Fathers and Sons”, a viral video highlighting the importance of talking to children about cancer. Introduced by Alexander Ludwig, star of the Hunger Games and Vikings, the video is a humorous take on a serious message: showing a father making numerous attempts to bring up the awkward subject of testicular cancer with his sons. The video cleverly demonstrates there should not be any awkwardness because the sons are more than willing to “talk balls” with their father. To accompany the video a new booklet “Talking to your children about cancer” for families affected by male cancers was launched. Topics include why communication is important, what kind of information should be communicated to children, when and how should children be told and making sure children have the right facts.
- Survey. An independent survey was commissioned to gain insight into general awareness of male cancer, where people get health information and the types of conversations parents have with their sons regarding the signs and symptoms of testicular cancer. Highlights included:
-42% of parents surveyed do not regularly talk to their children about health issues or concerns
-20% of parents surveyed have never had a “health” conversation with their children
-30% of parents surveyed do not feel confident discussing the signs and symptoms of testicular cancer with their sons despite this being the most common cancer to affect young males
Other activities during the Month included the launch of the new Orchid website, a penile health z-card, Roadshows and health information sessions and fundraising events. The campaign was featured across a range of media – highlights included features in The Mirror, The Herald, Mail Online, You Magazine and The Express. III) A pioneering, world class research programme – our funding of innovative research in the cancer field remains a key focus of Orchid’s work. The research programme aims to encourage, support and fund research into the causes, prevention and treatment of male cancers. It has identified new ways to treat male cancers and improved our understanding of how these cancers behave. The four programmes of research include molecular biology and cancer genetics, histopathology, cancer epidemiology and clinical trials. In December 2011 we were pleased to announce the appointment of Professor John Kelly as the Orchid Chair in Male Genito-urinary Oncology. Professor Kelly is a Consultant Urological Surgeon, Professor of Uro-Oncology and Clinical Lead of Uro-Oncology based at University College Hospital, London. Alongside existing research commitments we approved an exceptional grant in March 2013 for an exciting new global research study led by Professor Tom Powles, a leading expert in the field of testicular cancer. The aim of the study is to improve the understanding of the development and progression of testicular cancer and to offer the possibility of new treatment and management techniques for men with testicular cancer that has returned and spread beyond the testis – these patients are currently likely to die from the disease. The study will involve collaborations with researchers across the United States, Germany, Italy, UK, France, Denmark and Ireland and now places Orchid firmly on the global map. In 2013 the Orchid Study and Travel Award Programme was launched aimed at supporting young people in the field of male cancer research. Building on these many achievements, the implementation of the new Orchid Research Strategy 2013 -2016 promises to make a real, tangible difference through supporting research which will improve our understanding of the risk, diagnosis and treatment of male cancers. Ultimately our aim is to promote, support and accelerate step change in cancer management thereby improving the outlook for men and their families.
Working in partnership with the business community to make a difference
In recent years Orchid has enjoyed a number of successful partnerships with the business community including Paperchase, King Sturge, Next, Bath Rugby Club, Brooks Brothers, The Bluebeards Revenge, GCS Recruitment, Easy As HGV and Raging Bull. We were chosen as a beneficiary of ICAP Charity Day 2011 to support the Orchid Tissue Bank and are the Charity of the Year for ASDA Distribution in 2015. Our work with their UK depots, their 15,000 colleagues and the local community is helping to ensure we can support even more people affected by or interested in male cancer.
Working in partnership with other organisations to make a difference
Orchid works in partnership with other voluntary organisations and networks to campaign for improved services for men and their families including Cancer Research UK, Network for Patients, Macmillan Cancer Support, Teenage Cancer Trust, British Association of Urological Nurses, British Association of Urological Surgeons and the Penile Cancer Supra-networks. Orchid plays a full part in the Cancer Campaigning Group and Cancer52, an equivalent collaborative concerned with less common cancers (i.e. all those except prostate, lung, breast and bowel disease) that together account for around 52% of all cancer deaths in the UK. Orchid’s Chief Executive is on the Board of Cancer52. In 2012-2013 Orchid took part in a number of important projects. The charity was invited to join an advisory panel for PEPC, a www.HealthTalkOnline.org.uk project on penile cancer funded by the Research for Patient Benefit programme of the National Institute for Health Research. The penile cancer site was launched on the 23 October 2012 at a Reception at the Royal Society. The site is an important source of support and information for men and their families and has been featured in national media including Radio 4 and The Guardian. Orchid was also invited to join the National Cancer Intelligence Network – Urology Site Specific Clinical Reference Group (NCIN Urology SSCRG). NCIN is a UK-wide initiative, working to drive improvements in standards of cancer care and clinical outcomes by improving and using the information collected about cancer patients for analysis, publication and research. Sitting within the National Cancer Research Institute (NCRI), the NCIN works closely with cancer services in England, Scotland, Wales and Northern Ireland. In England, the NCIN is part of the National Cancer Programme. Orchid has taken part in several roundtable policy discussions to examine variations in prostate cancer care and to campaign for improved services. Three new reports were launched: in February 2012 “The Forgotten 10,000: Getting it right for men with prostate cancer” was launched with support from Ian Liddell-Grainger MP. “Prostate Cancer in BME Communities Raising Awareness and Improving Outcomes” was launched at the end of November 2012 with support from Paul Uppal MP Vice-Chair of the All-Party Parliamentary Group on Men’s Health. In October 2014 we launched “More to do: Identifying and tackling the unmet need in prostate cancer care” with support from the Rt Hon Paul Burstow MP. The report highlighted shortfalls in the quality of information and support offered to men with prostate cancer compared to other cancers and made 15 specific recommendations to drive change and improve prostate cancer services and overall quality of care.
Meeting our commitments
Orchid relies on voluntary income to meet its commitments to supporting men, their families and those with an interest in male cancer. Funds are raised through individuals, events, the business community, trusts and foundations.
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