Campaign Summary
Prostate cancer is the most common cancer diagnosed in men in the UK, with 35,000 men diagnosed every year and one man dying from prostate cancer every hour. However, despite the incidence and impact of this condition men with prostate cancer have consistently reported worse experiences of NHS care than patients with other common cancers.(i)
Unfortunately, new research undertaken by The Prostate Cancer Charity on the experiences of men receiving hormone therapy, a common treatment for prostate cancer, suggests that this legacy continues - with many men missing out on vital information and support to help them live with the impact of prostate cancer and this treatment on their lives.
Feedback from the men who took part in this research makes for uncomfortable reading:
- Fatigue impacted on the lives of over 70 per cent of those who took part in the Charity’s survey (affecting their ability to work, conduct household chores and pursue hobbies) and 1 in 4 men who experienced this side effect found the impact it had on their lives difficult to cope with.
- 1 in 4 survey respondents said that hormone therapy affected their ability to work.
- 8 out of 10 said that they experienced erectile dysfunction as a result of their treatment – with a quarter of these men reporting that they found it difficult to cope with the impact this had on their lives.
- 1 in every 2 men reported serious issues related to their mental wellbeing, for example, feelings of depression, loss of confidence and cognitive problems.
Despite these experiences, over half of the men who responded to the survey said that they received ‘too little’ information before they began hormone therapy and ‘too little’ support whilst they were on the treatment. Many did not receive verbal or written information on the potential side effects of hormone therapy before they began treatment – nor were they asked by the healthcare professionals involved in their care about their experiences of side effects, or their support needs.
The Prostate Cancer Charity believes that the failure to provide information and to talk to men about the effects of this treatment means that too many are unaware that there are practical medical interventions and support services available that could help them better manage and cope with the impact of their treatment. This is unacceptable.
The Charity’s research also found evidence of serious issues related to the information and support needs of the partners of men who receive hormone therapy. When surveyed, significant numbers reported that they found the side effects experienced by the partner undergoing hormone therapy difficult to cope with, but nearly two-thirds said that they had not received appropriate support from healthcare professionals to help them cope with the impact of these side effects on their lives.
Together, these findings highlight serious short-comings in how well the information and support needs of men living with the effects of hormone therapy - and their partners - are understood and provided for. They also suggest that existing guidance from the National Institute for Health and Clinical Excellence (NICE) in England and Wales and NHS Quality Improvement Scotland (NHS QIS), on the standards of care that should be in place for men with prostate cancer, have not been implemented.
The Prostate Cancer Charity’s campaign, ‘Hampered by hormones?’, aims to highlight the needs of men on hormone therapy and their partners and to ensure that they receive the high standard of care and support they deserve and are entitled to. This includes access to appropriate information, the assessment of side effects and associated support needs and the provision of appropriate interventions and support to men (and their partners) to help them cope with and manage these side effects.
Through this campaign, the Charity is calling for the urgent full implementation of current guidelines on the care of men with prostate cancer to address the unacceptable gaps in care.
The Prostate Cancer Charity has also set out a number of recommendations to improve the information, support and care provided by the NHS to men receiving hormone therapy (and their partners). The Charity is calling on Government Health Departments across the UK, the National Cancer Survivorship Initiative in England and the Scottish Cancer Taskforce to review its research findings and take action in accordance with the Charity’s recommendations.
In the full campaign report, the Charity sets out in detail its key research findings and detailed recommendations for the improved care of men with prostate cancer.