Prostate cancer patients ‘abandoned to deal with erection problems alone’

Thousands of prostate cancer survivors affected by erectile dysfunction are being abandoned without adequate support, according to new data discovered by a Freedom of Information (FOI) request from Prostate Cancer UK.

The results received from 235 health commissioners across the UK show there is patchy and insufficient care offered for erection problems – such as medication, vacuum pumps and counselling – leaving thousands of men with unnecessary long-term physical and psychological damage. Now we're calling on the public to take action by campaigning for better care in their area.  

A postcode lottery of support for erectile dysfunction

A common side effect of prostate cancer treatment, erectile dysfunction affects 76% of men recovering from the disease. But it can often be rectified if the right care is available.

Our FOI request, though, reveals a postcode lottery of support. Just 13% of the UK's local health commissioners provide the breadth of treatment and services needed to give men living with this challenging condition the best chance of recovery.

Current treatment guidelines recommend early intervention and a choice of five options: an NHS erectile dysfunction clinic, an appropriate choice of medication like tadalafil (Cialis®), vacuum pumps, psychosexual clinics, and counselling services.

But our FOI request found:

• Only 51% of commissioners offered an erectile dysfunction clinic
• Two commissioners admitted offering no support whatsoever 
• 17% were completely unaware of the care for erectile dysfunction they offered in their area

In fact, a recent survey found as few as 1 in 4 men were offered support or medication to deal with the issue after being treated for prostate cancer.

Devastating effects for men and their relationships

"When it comes to treating erectile dysfunction following prostate cancer treatment, early support and treatment is vital," says John Robertson, a Specialist Nurse at Prostate Cancer UK.

"I regularly speak to men at rock-bottom because they can no longer get or maintain an erection. Not only can it put a complete stop to a man’s sex life, it can have devastating longer-term implications, including depression and relationship breakdowns.

"It's therefore incredibly concerning that only a handful of men are getting the support needed to overcome this condition, and it’s shocking that in some areas men aren’t getting any support whatsoever."

Demand better care where you live

In a bid to put a stop to this wide disparity in care, Prostate Cancer UK is calling on the public to put urgent pressure on health funders in the worst performing areas to ensure they are held accountable for improving access to treatments and support.

"This is an issue that has been swept under the carpet for too long and thousands of men have been left to suffer in silence," says John.

"Erectile dysfunction is a debilitating health condition and it must be taken seriously by the NHS and commissioning groups. Now is the time to take action – everyone can do their bit to make sure men across the country get access to the vital support they need.”

Brian's story: "Adjusting has been incredibly difficult"

Brian White was diagnosed with prostate cancer at the age of 41 and had an operation to remove his prostate last year.

"My partner and I were made fully aware of the possible side effects – incontinence and erectile dysfunction – but I was so focussed on getting rid of the cancer that the longer-term implications didn’t really come into question.

"One year down the line and I’m still in remission, but I’m living with the harsh side effects of my treatment. Thankfully my incontinence is much better, but I’m still struggling with erections.

"I’m only 42 and my partner is 36. Sex and intimacy is so important to us, as it is to most relationships, and adjusting to a different way of life has been incredibly difficult. The spontaneity of our sexual relationship has gone and now every intimate moment has to be planned well in advance.

"Things are certainly improving, but the road to recovery is a long one. I want to make everyone aware that support for erectile problems shouldn’t be a 'nice to have' – it’s essential.

"Before any man undergoes treatment for prostate cancer he needs to be safe in knowledge that there is appropriate care on the other side to help him with the aftermath. The fact that some men don’t get access to any support whatsoever is shocking."

Read more men's stories of dealing with erectile dysfunction:

• Colin Hutchins: "I had no erectile function whatsoever following the operation, but over time this has really improved."
• Craig Lister: "On top of having terminal cancer, to then be stripped of your sexual function was another barrier I had to deal with."
• Paul Kallay: "Since surgery, I’ve had erectile dysfunction. I’ve tried a few different treatments and I found the vacuum pump works quite well for me."