Penile Cancer Support Service – Scotland
Although a relatively rare cancer, there is a higher incidence of Penile Cancer in Scotland relative to the rest of the UK – 70 cases a year in a population of 5.2 million, against 562 cases in the rest of the UK population of 60.2 million. Also, those affected by Penile Cancer in Scotland are being diagnosed at a younger age. The reasons for these two statistics are not yet clear but the impacts on those affected are huge.
In order to raise awareness of the signs and symptoms and to better provide support to those affected and their families, Orchid has established a Penile Cancer Support service in Scotland.
Information and signposting for those affected by Penile Cancer and their families
Our service in Scotland is based in Glasgow and offers information and support of a non-clinical nature to those affected by penile cancer and their families.
Shirley Young, our Penile Cancer Information Manager – Scotland, provides this face to face, by telephone, by e-mail and digitally using Zooms or Teams.
As well as sharing Orchid’s literature and knowledge about this rare but devastating cancer, Shirley signposts people to our nurse-led National Male Cancer helpline on 0808 802 0010 or to email email@example.com where patients can take their clinical enquiries. Shirley can also signpost people to appropriate agencies local to where enquirers live across Scotland.
These agencies might offer such things as:
- Welfare rights advice
- Employment rights information
- Housing advice
- Information about continence issues
- Counselling and emotional support
- Massage and other complementary therapies
Shirley is supported in this work by two retired nurses, Liz and Evelyn, who have run a number of highly successful roadshows in shopping centres across Scotland, raising awareness amongst the public. They have also delivered training events to patient groups and NHS staff.
It is planned to set up Penile Cancer peer support groups in Scotland for those affected – both individually and for both them and their partners, virtually via Zoom or Teams at first and then as the Covid vaccine programme is rolled out, in a blended virtual/in-person way.
As Scotland is such a large country, with a small population, it makes sense for us to continue to offer these two options beyond the pandemic to make them as accessible as possible.
Working in partnership
As we develop the service in Scotland, we will be working closely with NHS Urology and Oncology Consultants and Clinical Nurse Specialists at the two Penile Cancer specialist centres – the Beatson Cancer Centre in the West of Scotland and the Western General Hospital in Edinburgh, to make sure we put the needs of patients at the heart of our service delivery.
We already have good relationships with Macmillan, in particular the Glasgow Libraries’ project, Maggie’s Centres and the Alliance, all of whom promote our service and raise awareness of Penile Cancer amongst the people they serve. We are also part of the Scotland Cancer Partnership Forum.
As restrictions ease these organisations hope to offer us practical support such as venues and co-facilitation for our support groups and health professional training sessions.
Influencing policy and practice
Shirley sits on the Cross-Party Group on Cancer and had the opportunity to contribute to the development of Scotland’s Cancer Recovery Plan.
A Scottish Penile Cancer patient has been appointed as a Patient Advocate to the European Reference Network for Penile Cancer – eUROGEN. In this role they are contributing the patient voice and helping to develop improved patient treatment and support. Orchid is also a Patient Advocate organisation with eUROGEN and is contributing to a number of work streams, including patient pathways and patient information.