Achievements and Impact
Orchid’s Achievements in 2017
Over 50,000 men in the UK are diagnosed every year with prostate, testicular and penile cancer. Sadly these numbers are increasing. Now, more than ever before, Orchid needs to continue its investment in a dedicated programme of research to help improve our understanding of these cancers and find new ways to treat and manage them. Alongside the research programme, support, education and better awareness of the signs and symptoms of these cancers is needed – an early diagnosis and treatment can make a real difference, helping to save the lives of current and future generations of men.
Thanks to the generosity of our many supporters and stakeholders, we are proud of our achievements over the last year. The charity has continued to support people affected by, at risk of, or interested in male cancer through a range of services, education and awareness campaigns and world class research. We are particularly pleased to have extended our reach through community focussed work.
Orchid Male Cancer Information Nurses
Orchid’s part time Male Cancer Information Nurses (Rob Cornes and Katherine Mutsvangwa) have been working hard to ensure that men are supported with any questions about a cancer concern, diagnosis or treatment. They are instrumental in developing Orchid’s award winning specialist online and paper-based information. Through training events our Nurses also support health professionals at the forefront of looking after the patients affected by these male specific cancers. Highlights include:
- Over the past year the Nurses have responded to 1,750 enquiries via the freephone Orchid National Male Cancer Helpline 0800 802 0010, by email and face-to-face from men, their families, and health and social care professionals as they continued to guide and support men, their spouses, partners and other loved ones through the different challenges of their cancer journey.
- Rob has developed a new, Information Standards accredited, publication on testicular cancer. The Information Standard is a certification scheme for health and social care information, established by the Department of Health to help patients and the public make informed choices about their lifestyle, their condition and their options for treatment and care.
- Rob has developed a new edition of “About Penile Cancer” which includes a general introduction to the disease accompanied by six specialist leaflets including radiotherapy and chemotherapy. These are similarly accredited.
- Rob attended the first Penile Cancer Workshop at Southmead Hospital in Bristol in June. Eight patients attended the event together with specialist nurses to learn more about dealing with the challenges of body image and sexual function amongst other topics.
- Rob supported the third “Health and Wellbeing” day at Guy’s Hospital for testicular cancer patients. These events are designed to help men adjust and talk about the issues which they may face following treatment for testicular cancer and include both physical and psychological aspects. The meetings are organised by the specialist care team and include support from a psychologist.
Health, social and education professionals
Supporting health, social and education professionals to help ensure people at risk of or affected by male cancer have the best possible treatment and care has been, and will remain, a priority for Orchid. During the year we reached over 64,000 named health, social care and education professionals. Highlights include:
- Orchid’s Chief Executive presented at the Patient Symposium organised by Europa Uomo and Tackle Prostate Cancer. The event was part of the 32nd annual EAU (European Association of Urology) Congress which attracted over 14,000 healthcare professionals. Speakers included Professor Frank Chinegwundoh (Consultant Urological Surgeon), Chris Booth (Emeritus Consultant Urologist), Dr Lina Carmona Echeverria (Clinical Research Associate, UCL) and Lawrence Drudge-Coates (Uro/Onco Clinical Nurse Specialist and Honorary Lecturer, Kings College, London).
- Orchid’s Chief Executive, Education Manager and Nurses presented at the Royal College of Nursing (RCN) Congress in Liverpool. The presentation entitled: “Effective Communication-overcoming the barriers to communicating with men about male cancers” reflected on the changing landscape in communicating male cancer messages to patients, their families and the wider community, the key challenges to delivering and engaging men in healthcare messages, how these can be overcome and effective methods used by Orchid including public awareness campaigns and community based programmes. The presentation was followed by a Q&A session covering testicular and penile cancer, the changing attitudes of men towards their health and the issues of funding research in the future. The Congress was attended by over 5,600 healthcare professionals, researchers, and nurses and provided Orchid with a significant opportunity to share our strategies in communicating health and cancer messages.
- Orchid’s Chief Executive and Prostate Cancer Information Manager delivered a Study Day at the British Association of Urology Nurses (BAUN) Annual Conference in Glasgow. Topics included “Prostate Cancer – Britain’s Growing Problem”, “Encouraging and promoting prostate cancer services within diverse communities” and “Tackling the Roller Coaster – Psychological and Emotional Support”. Rob delivered a dedicated Workshop “Current Issues in Surviving Penile and Testicular Cancer” at the Conference.
Awareness and education
Orchid’s awareness activity in the community goes from strength to strength with the following key highlights:
- Reaching at-risk communities through our popular Male Cancer Awareness Roadshows, information events and high profile campaigns remains a priority. In the last 12 months we delivered 115 events including 21 day long Orchid Male Cancer Awareness Roadshows in the heart of local communities, many in areas of high deprivation. Orchid sets these Roadshows in busy community locations and in non-clinical settings such as shopping centres and markets, which has encouraged men to feel comfortable in seeking information. Over this period, the Roadshows attracted 4,065 visitors to our stands who took away more than 4,857 targeted pieces of Orchid’s specialist information. Over 536 visitors took the opportunity to meet the Education Team and discuss a male cancer concern.
- Orchid has launched the Young Person’s Testicular Cancer Project to engage School Nurses, healthcare professionals and education providers and equip them with specialist resources to improve their understanding of testicular cancer, its signs and symptoms and assist them to communicate cancer information to young people. These resources are being developed with input from a newly formed working group of experts including students, parents, School Nurses, other charities.
- Orchid’s Education Team comprising Orchid Nurses, Education Manager and key staff have been busy delivering information days and awareness events in companies, workplaces, schools and colleges across the UK. These information sessions provide opportunities for attendees to learn about male cancers and address any concerns. Feedback from attendees shows the difference these activities are making in terms of highlighting cancer signs and symptoms and encouraging an early diagnosis and treatment. Over the past year our Education Team delivered 90 talks and presentations.
Big Lottery Fund – Reaching Communities Programme
Building on our successful community based programmes, in August 2016 we were delighted to learn that the Big Lottery Fund – Reaching Communities Programme had made a grant award of £377,802 over three years towards a new project “Changing Lives – engaging black African and Caribbean men at risk of or affected by prostate cancer”. This project is a joint initiative with the charity Cancer Black Care, to develop new services and reach black African and Caribbean men affected by or at risk of prostate cancer across six London boroughs. Black men are more likely to get prostate cancer than men of other ethnicities: 1 in 4 black men compared to 1 in 8.
In September, Ali Orhan joined the charity as the Prostate Cancer Information Manager to develop and manage this important project. By way of background Ali has successfully developed, implemented and managed health awareness programmes for black and minority ethnic communities at the British Heart Foundation, Prostate Cancer UK and the sexual health charity Naz. He is also Chairman of the charity, Cancer Equality. He has a wealth of experience in targeting and working with communities to improve health outcomes and engaging healthcare professionals. Ali is also a trained nurse and qualified social worker.
Ali has been busy developing collaborative opportunities with Cancer Black Care. He has met nurse-led support groups in the target boroughs to identify joint working opportunities. He has introduced Orchid and the Programme to the networks he has built over the years and recently engaged the support of newly qualified Sarah Itam, the UK’s third and only black female Urologist.
Project staff have to date delivered six Prostate Cancer Awareness Roadshows, three nurse-led presentations, 17 outreach sessions and talks. Over 1,000 information resources have been disseminated, resulting in reaching a total of 812 individuals.
We are pleased to report there has been increased media interest in male cancer and the work of Orchid during the year. The charity has been proactive in commenting on cancer treatments, research developments, health campaigns, topical issues and in providing case studies. Highlights include:
- The ninth annual Orchid Male Cancer Awareness Week took place from the 3-9 April 2017. The campaign focussed on male specific cancers and in particular testicular cancer, highlighting the warning signs and symptoms, promoting self-checks and encouraging an early diagnosis. There has been excellent coverage of the Awareness Week with over 335,000,000 OTS (opportunities to see) including 16 national media mentions. Highlights include features in The Independent, The Sunday People, The Mirror, Huffington Post, The Weekly News, Chat magazine, Mirror Online, The Sun Online and The Express Online. Macmillan Cancer Support actively promoted the Week to their supporters.
- “Manversation: the campaign for prostate cancer conversations” aims to ensure that men currently living with prostate cancer fully understand the critical changes they should be looking for in their disease and the serious consequences that ignoring these symptoms could have. It encourages men to speak up about potential symptoms as soon as they experience them. Over 10.7 million people have now been reached through the campaign and video.
The new Big Lottery funded “Changing Lives – engaging black African and Caribbean men at risk of or affected by prostate cancer” project has been yielding excellent results in terms of securing media opportunities including:
- We partnered with The Voice to help disseminate 4,000 recently developed prostate cancer resources aimed at black African and Caribbean communities. The resources were included in goodie bags distributed at ‘Africa on the Square’. This popular annual event hosted by the Mayor of London celebrates African arts and culture from across the continent.
- We secured an interview on Colourful Radio to help raise awareness of prostate cancer and to promote Orchid. Colourful Radio is a multi-award-winning, unique, independent 24/7 music and conversation digital radio service. Programmes are inclusive with format variety such as talk shows, audio documentaries, drama, and multi-genre music shows. It is the largest African Caribbean owned commercial radio network in the UK and has a reach of over 2 million per week across all their platforms.
- We secured a television interview on the Islam Channel’s Health Show which is due to be aired in October-November. This is a UK-based, free-to-air, English language, Islamic-focused satellite television channel and reaches over 160 countries – in the UK alone it attracts over two million viewers.
Orchid’s Research Strategy aims to support medical education and scientific research and encourage innovative, new ways to tackle problems that need solving. Ultimately the objective is to promote, support and accelerate step change in cancer management. Priority areas include supporting the Orchid Tissue Bank, clinical research, molecular therapeutics, genetics, research into rare cancers and encouraging young researchers into the field of male cancer through training and career development awards. Highlights include:
- Professor Daniel Berney was awarded a grant for the project, The Orchid Research Tissue Bank: a bespoke trials-orientated Tissue Bank for investigation of prostate, testis and penile cancer. The Orchid Research Tissue Bank, based at Charterhouse Square in London, is led by Professor Dan Berney MA MB B Chir, FRCPath, one of the UK’s leading genito-urinary pathologists. Our Tissue Bank addresses the lack of a bespoke tissue bank for translational research, providing a link between the laboratory and the clinic. It houses one of the largest collections of penile cancer tissues in Europe and the resource is used by researchers and clinicians from the UK and internationally. Professor Berney’s team continues to collect vital genito-urinary tissue and to construct conventional tissue micro arrays and biopsy tissue microarrays for current and future research and the interrogation of currently used clinic-pathological predictive and prognostic biomarkers.
- Professor Yong-Jie Lu was awarded a grant for the project, Prostate cancer biomarker identification and treatment improvement through analysing and monitoring circulating tumour cells. Professor Lu’s Team is aiming to evaluate the benefit of using Circulating Tumour Cells (CTCs) analysis techniques to stratify prostate cancer patient treatment. The genetic analysis of CTCs will also help to understand cancer metastasis, thus accelerating the clinical application of blood sample based molecular diagnosis. This will be much safer, more convenient and more acceptable to patients and clinicians alike than tissue-based diagnosis, and consequently significantly improve patient management and outcome. With the success of this study, the team expects that people with prostate cancer could be monitored frequently by a CTC blood test to guide treatment modification for the best outcome.
- Dr Simon Rodney, Doctoral Research Fellow in Onco-Urology at UCL was awarded a 2017 Orchid Study and Travel Award. He attended the annual meeting of the American Association of Clinical Oncologists (ASCO) from the 2-6 June 2017. He presented the latest research findings from his PhD on the heterogeneity and drivers of penile cancer to an audience of over 5,000 leading healthcare professionals. His abstract, “Multi-region sequencing of penile cancer to reveal distinct patterns of heterogeneous actionable mutations” was accepted for both a poster presentation and panel discussion session.
- Orchid supported the UK National Penile Pathology National Group, Annual Meeting in at St George’s Hospital, London. This is a sub-group of the British Association of Urological Pathologists (BAUP) and consists of Sub-specialist Urological Pathologists working in Supra-regional Penile Cancer referral centres across the UK. The group meets annually and presents research, clinical and audit projects undertaken by members together with a slide seminar.
Organisations we work with
Orchid actively works in close collaboration with health and social care professionals, policy makers, and other cancer charities to bring about positive change for men and their families. This includes organisations and their members such as Cancer52, Macmillan Cancer Support, Prostate Cancer UK, the Cancer Campaigning Group, the Royal College of Nursing and the British Association of Urological Nurses (BAUN). Highlights include:
- Orchid’s Chief Executive attended the All-Party Parliamentary Group (APPG) on Cancer – Summer Reception – in July 2017 at the House of Commons. The event provided an opportunity to re-launch the Group, recognise those CCGs that had most improved their one-year cancer survival rates and launch an inquiry into the implementation of the England Cancer Strategy. Speakers included the newly appointment Parliamentary Under-Secretary of State for Public Health and Primary Care, Steve Brine MP, John Baron MP, Nicola Hunt from NHS England and Sean Duffy, Cancer Alliance Lead for West Yorkshire and Harrogate.
Building on our current success and achievements, Orchid’s strategy The Way Ahead 2017-2020 sets out our priorities for the next three years.
It is exciting and ambitious vision encompassing men, their partners, family members, friends, health and social care professionals, researchers, service providers, educators, policy makers, other cancer charities, our staff, Trustees, volunteers and donors. Working together we can achieve so much.