The current issue

Thousands of men affected by erectile dysfunction after prostate cancer treatment are being left with inadequate support.

Our research showed that 76% of men who are treated for prostate cancer experience erectile dysfunction (ED), only 30% told us their ED treatment met their needs. We felt this was unacceptable and all men with prostate cancer who suffer with ED should have best practice treatment available to them wherever they live.

Recommended guidelines on prostate cancer treatment tell us that men should have access to five different treatment options for ED. However, we carried out Freedom of Information (FOI) requests which showed widespread variation in the provision of these services across the country. 

What we're doing

We've been asking men and those affected by prostate cancer to lobby their own local health board – nearly 600 people have taken action and sent a letter to either their local Clinical Commissioning Group (CCG) or the Health Secretary, calling for change.

We've also been contacting NHS Trusts in the worst performing areas and asking what they are doing to meet the needs of prostate cancer patients. We’re trying to understand the barriers to providing good provision so we can find ways to help.

We're writing to all the Cancer Alliances and Cancer Vanguards in England, highlighting the difference in services across CCGs in their area, demanding that they address the current inequalities. We're also writing directly to the Health Secretary requesting a named person who is responsible for updating the National Commissioning Guidelines, which are nearly 18 years old.

Alongside this we've been developing an education programme for healthcare professionals to highlight the impact that ED has on an individual and the importance of ED provision after prostate cancer treatment.

However, there is still work to be done for all men to receive support for erectile dysfunction and we will continue to address these service provision inequalities.

We are:

  • Working with Cancer Alliances and Cancer Vanguards in England
  • Working across Scotland, Northern Ireland and Wales to address erectile dysfunction service provision variation
  • Working to get the National Commissioning Guidelines updated

The services we think should be available

Recent guidance on erectile dysfunction treatment, produced by us and Macmillan, recommends early intervention and a choice of five treatment options in order to give men the best chance of recovery. These are:

  • an appropriate choice of medication, including a daily low dose of tadalafil (Cialis®)
  • vacuum pumps
  • access to a NHS/HSC erectile dysfunction clinic
  • access to psychosexual clinics
  • counselling

Erectile dysfunction clinics are essential in providing support across both physical and emotional needs. However, our research reveals that only half of commissioners and healthcare providers provide this as an option.

Two commissioners admitted that they provide no support whatsoever, and almost 1 in 5 were completely unaware of the arrangements in their area.

Personal stories

John Burton's story

"When I was told I had cancer, it was like my world had imploded. I wanted to get rid of the cancer so I opted for surgery, but wasn't told about any of the potential side effects, which came as a massive shock."

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