Overcoming the barriers to engaging with prostate cancer

Summary

Orchid is the UK’s leading charity for those affected by male cancer. In this interview, we speak to Ali Orhan, Chief Executive and Director of their Overcoming the Barriers to Engaging with Prostate Cancer project. 

Ali tells us how they are working alongside a network of volunteer community champions to improve awareness, support better outcomes and reduce health inequalities. 

Content

Hi Ali, can you tell us about yourself and what you do?

I have a dual role at Orchid as I am both CEO and Project Director of the Overcoming the Barriers to Engaging with Prostate Cancer project. I am responsible for the overall strategic direction of the project as well as representing the Orchid project team on various networks. An important and a really enjoyable part of my role is to train the Volunteer Community Champions with the knowledge they need to cascade this vital prostate cancer information within their communities.

Who does prostate cancer affect?

Each year, over 52,000 people are diagnosed with prostate cancer in the UK, and sadly about 11,500 people will die from the disease. Thankfully many will recover. Age is the most common risk factor for prostate cancer, and the older a man gets, the greater the risk. Prostate cancer is much rarer below the age of 50 but can also affect younger men. 1 in 8 men will be diagnosed with prostate cancer and this statistic doubles (1 in 4) for men from Black African and Black Caribbean heritage. 

What are the barriers to quick diagnosis and good outcomes?

There is low awareness of prostate cancer, even amongst those most at risk, and many people do not know the changes to look out for which could be a sign of prostate cancer. Yet cancers found early are so often the easiest to treat.

Also, we know that not everyone has access to mainstream prostate cancer messaging or is able to prioritise their health. This, coupled with the lack of awareness and some cultural taboos around the digital rectal examination (DRE), which may be part of the diagnostic pathway, can lead to late diagnoses with potentially poorer prognoses.

What are the aims and scope of the project?

The main focus of the Overcoming the Barriers to Engaging with Prostate Cancer project is to improve education and awareness within identified communities.

Since early 2021, Orchid has been recruiting and training Volunteer Community Champions in ten areas across England*. The aim is to give them the tools to cascade accurate information about risk factors, signs and symptoms, and diagnostic pathway. We want to support them to empower local people with information to help overcome barriers to engaging with their health and prostate cancer, including cultural taboos about rectal examinations. The champions can also signpost people to Orchid’s services (the helpline and website) and to peer support opportunities delivered locally by other charities and organisations.

Another important aim is to give our champions new skills and knowledge which will remain in the ten locations after the project ends in May 2024.

What tools and resources are the champions given?

Champions receive comprehensive training and are then supported by the Orchid team as they begin to cascade the information. They are equipped with a toolkit, fact sheets and sign posting leaflets to hand out.

The champions have talked to us about the difficulties in getting people to open up and talk about prostate cancer. In response, Orchid has given them interactive tools to help them start those important conversations with people in their communities. These include an interactive demonstration model which people can use to learn what a prostate feels like, so they can better understand what a health professional is looking for in a digital rectal examination (DRE). They also use a walnut to help people understand what size a prostate is, and a “Know your nuts” game to draw people in and get them talking.

How else do you support the champions?

Our Project Manager, Julia Depetrillo, keeps our champions up-to-date via a regular newsletter. The online drop-in sessions she runs also provide a good opportunity to discuss any issues which may arise if anyone needs any additional support or information. That said, both established and new champions always have access to the project team should they need it. 

There is no such thing as a typical champion. They all bring their own experience and knowledge of their local area. Some have been affected by prostate cancer, another cancer or know someone who has bee. Some have an interest in or knowledge of a particular community. Some cascade information in prisons to fellow residents.

If you are interested in training as a Champion, you can email Julia at julia.depetrillo@orchid-cancer.org.uk

Photo: Training three new champions in Nottingham.

Has the project been a success so far?

The project is a great success! In the last 2.5 years we have trained over 100 volunteer champions who now have the prostate cancer knowledge they need to raise awareness in their communities.

A few key stats I wanted to share:

• 31,197 people have been reached by the project already (target was 24,800)
• 2,439 project activities delivered already (target was 1240)
• 20,000 prostate cancer factsheets distributed
• Over 7,500 leaflets signposting people to further help either via Orchid or from local groups or charities distributed.

Have there been any surprises?

Despite using similar recruitment methods and adapting to local opportunities, the number of champions vary across the ten project areas, and there are fewer with lived experience than we would have expected. Nonetheless we are so happy with the wonderful team we have recruited, and the incredible volunteering they are doing which makes such a difference.

What are your personal reflections and hopes for the future?

A great hope is that as many champions as possible will continue to raise awareness of prostate cancer within their communities after the end of the project, and this is one of our current project priorities. The knowledge the champions have acquired through the training, conferences and catch ups will be long lasting, and Orchid will remain there to support them. And even though the project is coming to an end, we are still responding to requests for training as raising awareness within communities is so important. The knowledge and power our champions gain can never been taken away from them.

To learn more about prostate cancer, please visit Orchid's website.

If you have any questions or concerns, please call our freephone confidential helpline 0808 802 0010 which is open Mondays, Wednesdays and Fridays between 9am and 5pm. 

* Birmingham, Bradford, Bristol, Dudley, Leeds, Liverpool, Manchester, Newcastle, Nottingham, and Wolverhampton

Share your thoughts

Have you or someone you know been affected by prostate cancer? Or do you work in a role that relates to prostate cancer? What do you think the barriers are to men seeking help earlier and engaging with health information and services?

Please comment below (sign up first for free) or get in touch with the Patient Safety Learning team at content@pslhub.org to tell us more.