Orchid Patient Advocacy Group (OPAG)
Background
Orchid is dedicated to creating accurate, accessible, and relevant information for people who have been affected by prostate, testicular and penile cancer and those involved in their care and support.
Over the next few years, we will be reviewing and updating our current information as well as developing new information resources to help meet the needs of the increasing number of people being affected. We are also working with other patient focused organisations to develop collaborative projects and resources.
To help ensure that we provide accurate and useful information, we are forming the Orchid Patient Advocacy Group (OPAG). This group will consist of a dedicated number of healthcare professionals with a comprehensive knowledge of prostate, testicular and penile cancer, and professionals promoting patient advocacy, who can review and help shape our future information to ensure it is of the highest standard.
Rob Cornes
Male Cancer Information Nurse Specialist
Rob qualified as a Registered General Nurse (RGN) in 1991 at Barking Havering and Redbridge Hospitals NHS Trust (BHR).
He began work as a staff nurse on the urology ward becoming Charge Nurse in 1997. He left the ward in 2003 and took up the position of a Clinical Trials Nurse partially funded by Orchid. In 2004 he became a Uro-oncology Clinical Nurse Specialist at BHR and remained in this post until 2013.
He has been with Orchid for over 10 years. In his different roles he has met literally thousands of men affected by male cancer and gained a valuable insight into the information that they need. He is a firm advocate of both written and verbal information, having learnt from experience that both make a huge difference to patients and their families. He has also been the Chair of a large prostate cancer support group based in Essex, PHASE, as well as supporting other peer support groups for testicular and penile cancer. Rob’s expertise led to Orchid working closely with eUROGEN a European organisation dedicated to improving the outcomes for rare urological conditions by enabling equitable access to diagnosis, treatment, and care for patients across Europe. Along with two independent patient advocates Rob is an advocate for penile and testicular cancer for eUROGEN. He also represents penile and testicular cancer advocacy on behalf of Orchid within the European Association of Urology, (EAU) Patient Advocacy Group. Both these roles have led to him giving talks at International Conferences including the EAU Congress, the largest urological conference in Europe. This passion for improving support and outcomes for those affected by penile cancer led to the creation of International Penile Cancer Awareness Day which now follows on from Orchid’s Male Cancer Awareness Week.
Sinead Collins
Male Cancer Information Nurse Specialist – Penile Cancer
Sinéad began her nursing career at The Christie in Manchester, and it was during her 13 years in oncology nursing that she developed her interest in uro-oncology and penile cancer in particular. Having completed her nursing degree and advanced Practitioner Master’s degree, Sinéad developed nurse led clinical services before moving to Maggie’s cancer support charity. She joined the Greater Manchester Cancer Alliance during the pandemic as a project manager and later led services in urgent care.
Sinead is leading Orchids Four Nations Penile Cancer Programme.
Katherine Mutsvangwa
Born in Zimbabwe, Katherine came to the UK in 1990. She trained at the Princess Alexandra and Newham School of Nursing and Midwifery – Royal London Hospital to become a Registered General Nurse (RGN).
Among many experiences of cancer nursing, Katherine has worked as a GRASP Project Co-ordinator for cancer services. GRASP is a workload measurement tool that assists in the management of nursing services. In 2000 she received a BENTLEY award for best nursing and best achievement at Bart’s and the London Hospital for her work with GRASP technology.
Katherine decided to specialise in Haematology Oncology Nursing in 2001. This gave her an interest in new cancer treatments. It also made her want to spend more time educating people and supporting cancer patients and relatives.
She became a Senior Research Nurse for Genitourinary cancers at St Bartholomew’s Hospital, supporting testicular and prostate cancer patients, as well as working as an Orchid Information Nurse Specialist. Katherine has also had extensive experience working with the African Caribbean community. She is currently the Quality Lead for the NHS North East London Clinical Commissioning Group, Newham.
Suresh Rambaran
Suresh has over 30 years of experience in cancer nursing, and extensive experience in cancer information.
He has worked for the NHS, Cancer Backup, Cancerlink, Prostate Cancer UK, Macmillan and Orchid. Throughout his career, he has worked tirelessly helping hospitals and other health facilities improve their service provision, making them appropriate and sensitive to the needs of patient religions, customs and culture.
Suresh’s area of specialisation is prostate cancer and he was the first person from a Black or Ethnic Minority in the UK to be appointed a Cancer Information Specialist (CIS). In 2013 he was awarded a Queen Elizabeth II Diamond Jubilee Medal for his contribution within the NHS and voluntary/charitable sector.
Liz Fowles
Liz has been a BACP registered and accredited counselling practitioner since 1999 and is one of the few counsellors to have gained accreditation status from the British Infertility Counselling Association (BICA). Liz is currently working towards Senior Accreditation status with BICA (SAMBICA). Liz also won a Millennium award in 1999/2000 enabling her to research the importance of counselling provision for individuals and couples experiencing trauma and loss in pregnancy.
Her past experience includes working as a substance misuse counselling practitioner for a local addiction charity (NECA) from 2006 to 2013, and as a locum practitioner to help reduce waiting lists within the NHS in mental health services. Since 2013 she has worked for the NHS as a counselling practitioner at a Fertility Clinic and an Obstetrics, Gynaecology and Midwifery unit.
Liz has a successful private practice working with patients worldwide and is part of the Petal’s specialist counselling service.
Liz has worked with Orchid since 2021 counselling men who have been diagnosed with testicular and penile cancer and has also supported NHS Consultants dealing with individuals suffering trauma following the Covid pandemic.
Michelle Greenwood
Michelle qualified as a nurse in 2008 at City University and worked on one of the medical oncology wards at St. Bartholomew’s Hospital for several years. This was followed by a short stint as a Community Nurse in the Ealing area before returning to Bart’s as a research nurse for Genitourinary cancers, mainly prostate and renal clinical trials. She was then the Ocular Melanoma Clinical Nurse Specialist (CNS) at Bart’s before returning to the GU team again at Bart’s as one of the Macmillan Urology Oncology CNS’s for eight and a half years covering renal, bladder, prostate and testicular cancer.
Along with a colleague, she set up and still a testicular cancer support group which has been meeting for 6 years, as is a United Kingdom Oncology Nursing Society (UKONS) Champion as well as the Chair of the UK National Germ Cell Group.
Michelle has worked with many different agencies and charities to develop and deliver education to nurses and other allied healthcare professionals and participates in awareness drives for patients. Michelle is currently a lead CNS at Imperial Health.