In 2015 we published a paper in the International Journal of Urological Nursing on a new service for men on hormone therapy which we called ‘Staying healthy on hormones’. This was an innovative way to provide support and education for men on ADT regarding side effect management and metabolic effects.
We organised a seminar for men using hormone therapy away from the clinical area. The aims of the seminar were to understand the treatment and its side effects, offer advice regarding side effect management, suggest simple lifestyle changes to mitigate long-term metabolic effects and empower men to engage in primary care and play an active role in their monitoring and care (improve self-efficacy).
Five years later, the seminars are still an important part of the care pathway for our patients. To date,> 400 men and > 100 loved ones have attended the daylong event. I have presented in Europe, America, Australia and New Zealand. I am impressed and humbled by the way my fellow nurses have embraced the ideas and brought similar ideas to their own patient groups.
There have also been some exciting developments. We received a legacy donation from one of our patients for a project to support men with advanced prostate cancer. Using staff input and patient focus groups, we identified activities which would bring men and their loved ones together. The project is called the Advanced Prostate Cancer Club (APCC). To date we have provided 5 healthy hormone events, 4 day trips to destinations in and around London, including Kew Gardens and Leeds castle, 2 art class courses, singing workshops and 2 very successful Christmas Lunch socials (the most recent of which involved 55 members enjoying lunch in a riverside pub in Greenwich). We have a regular walking group. We have also provided Look Good Feel Better sessions, where men have participated in a pampering workshop and were advised on skincare. We have also run 3 ‘grave talks’ which are sessions run with the chaplaincy, palliative care and a local undertaker, exploring issues around death and dying in a safe space. Plans include an exercise club and memory book project. However, there have been (and still are) some challenges.
“…an innovative way to provide
support and education for men
on ADT regarding side effect
management and metabolic effects”
The biggest challenge is funding. In order to run the Healthy Hormone days, we need to hire a room and provide refreshments. We have used a variety of means to pay for this over the years. For example, with the support of pharma or with charitable grants. And currently with the large legacy fund mentioned previously. However, this isn’t sustainable funding, thus one of our biggest challenges is making this service future-proof. To this end we have asked the group to propose ideas about fundraising. We set up a charitable website page in order to facilitate this. Members are planning a concert and a golf day, and even before these events, donations from members have already exceeded £2600. The page can be found at https://uk.virginmoneygiving.com/APCC
Another challenge is the time commitment to make these projects successful. We have used some of the legacy funding to pay for a support worker who serves as a contact person and organiser for events. This has been transformational, and she has become an essential and valued member of the team.
Access for men
Whilst the interest in seminars has been very positive, we are aware that not all men can or want to attend. We are looking into the reasons why and have started a focus group for black men to see whether the club could provide specific services to encourage more participation from this community. The feedback was that these men would prefer activity-based groups
such as practical exercise classes. We are starting these soon.
Measuring the impact
Whilst feedback measured by questionnaires and by comments collected after events has been extremely positive, we are also working with colleagues to see whether attending seminars results in behavioural change in terms of diet and exercise. We are also collecting data on how attending the APCC affects measures such as anxiety, mood, and ability to socialise.
Most of the feedback consists of emails, cards and letters from the men themselves. Peer support is a major unmet need for this patient group (Patterson 2017). This initiative meets that need, as is shown in the following feedback:
“Many thanks for a most enjoyable social event at such a beautiful location. People were so relaxed and happy. You had everything organised perfectly. It made it so easy for us to mingle and meet new people”
“There is such an empathetic connection amongst us which makes it so easy to talk about our experiences. I am amazed how positive our men and their partners are”
“Made my day seeing all my lovely friends…..receiving a warm welcome. Many thanks. Each walk opens discussions in the beautiful autumnal colours”
“… it was good to even laugh with you after what has been a very difficult time following weeks of uncertainty and unreality. The thought of attending these events with others who are experiencing similar situations certainly makes the road ahead seem much more positive”
“Meeting the other people in the group and talking to them and sharing the experiences of their prostate cancer journey was an eye opener. It made us realise that everybody has a different story to tell and that we are not on our own”
“I was blown away by the kindness of the people attending and felt at home straight away”
“Such a blessing to be with such an amazing group of understanding people”
And from one 85-year old man after our “Look Good Feel Better” session:
“Eyes, hair, mouth, make up
The people they need to adore me
So Christian Dior me from my head to my toes
I need to be dazzling, I want to be rainbow high
So Lauren Bacall me! Anything goes
To make me fantastic, I have to be rainbow high”
– Patterson et al. Unmet Supportive Care Needs of Men with Locally Advanced and Metastatic Prostate Cancer on Hormonal Treatment: A Mixed Methods Study. Cancer nursing 40(6). 2017.
– Fleure, L. ‘Healthy on Hormones’: improving the experience of men with advanced prostate cancer. International Journal of Urological Nursing, 9: 44–49. doi:10.1111/ijun.12046. 2015.
Louisa Fleure, Lead urology oncology CNS, Guys and St Thomas NHS Trust, London (UK), Louisa.Fleure@gstt.nhs.uk