This guest blog comes from Change Delivery manager, Steven Rowntree. He’s leading a project to make sure that men who have problems getting or keeping an erection after prostate cancer treatment – and by the way, that’s 76 per cent of men who experience treatment side effects - get the support they need to deal with it.
As if having prostate cancer isn’t bad enough, the side effects of treatment can often be incredibly difficult to deal with. And not having the support you need to deal with them obviously doesn’t help. So it was unsurprising that our Policy and Campaigns Forum – a group of health professionals and people affected by prostate cancer – asked us to take action to improve support for side effects. In particular, they told us that getting adequate support for erection problems after prostate cancer treatment was hugely important for men, and that levels of support varied widely across the UK.
To get an accurate picture of these issues we went to men, health professionals, and commissioners to find out more about men’s experiences of accessing support for erection problems and the barriers they can face in doing so. We found some big problems.
Health professionals told us that they often don’t feel confident treating men with erection problems after prostate cancer treatment. There are no national guidelines to help them support men with treatment-induced erectile dysfunction – which needs different management than erectile dysfunction from other causes.
52 percent of GPs and 83 per cent of practice nurses told us their knowledge of erectile dysfunction was neither up to date nor comprehensive enough for them to support men with prostate cancer confidently. We know this lack of confidence, and the embarrassment associated with talking about sex can be a big barrier. We’ve heard from a man named John, whose story poignantly sets out this issue:
[speaking about his first appointment with a nurse to talk about ED] "It’s not a subject most blokes want to talk about. She didn’t try to engage any conversation. I must admit it was a most uncomfortable experience and I decided not to return and hoped things would get better on their own. They haven't and four years down the road I am still unable to get an erection. I’m the first to say that maybe I should have said more and voiced my opinion, but I just felt very uncomfortable. And bearing in mind what I had gone through in the past months, I felt very let down."
76 per cent of men who have side effects from prostate cancer treatment have difficulty getting or keeping an erection. Early treatment gives the best chance of a full recovery, so if health professionals lack confidence in dealing with erection problems, then we have a big barrier to recovery that needs to be addressed.
Our survey also found that one third of men who had surgery for prostate cancer were never asked about their ability to get or keep an erection by their consultant, GP or nurse within the first six months of treatment. Nor were three quarters of men who had external beam radiotherapy.
And this is another part of the problem. The lack of guidance means that it isn’t clear who is responsible for supporting these men, and when, which can leave men ping-ponging between their GP and consultant.
That’s why we teamed up with Macmillan to fund a project that lead to the publication of two evidence-based management strategies for health professionals. They cover the treatment of erectile dysfunction after surgery, and erectile dysfunction after hormone therapy and radiotherapy and have appeared in the International Journal of Clinical Practice. We know GPs and practice nurses are inundated with guidelines and information, so we made quick-guides as well. You can download them at prostatecanceruk.org/edsurgery and prostatecanceruk.org/edradiotherapy - and take them to your GP or practice nurse.
Most erectile dysfunction treatments aren’t widely available to men on the NHS. Men with prostate cancer and some other health conditions including diabetes, MS and Parkinson’s, are able to get their treatment paid for. However, the prescribing guidance that controls access to these treatments is very old. It was written in 1999, when Viagra was newly available and health authorities were afraid it would become so popular that it would cripple the NHS. They thought that it would be a good idea to limit prescription to four tablets a month to stop this happening.
When Viagra came off patent in 2013 and became cheap as chips, the Department of Health decided that all men could have the generic version – salidafil – on the NHS. But they didn’t think to properly update the guidance and get rid of the strict limits of four tablets per month for other drugs such as branded Viagra. Four tablets just isn’t enough to help men with erection problems after prostate cancer to recover and avoid long-term difficulties. They also failed to list newer therapies like aprostadil, or devices like vacuum pumps, which are hugely important for men with nerve damage after prostate cancer treatment. Because these treatments aren’t specifically listed, clinicians across the country tell us that cash strapped commissioners use this as an excuse not to pay for them.
The prescribing guidance also lumps all erection problems together, regardless of the cause. This is despite the fact that best practice treatment for men with erection problems due to prostate cancer treatment is very different to best practice for men who have erection problems because of stress or anxiety, or just due to aging.
This isn’t good enough.
We’ve been working behind the scenes to get the prescribing guidance updated to fit the needs of men with prostate cancer, but we’ve faced hurdles at every turn. It’s up to NHS England to update the guidance, but we’re struggling to get them to do it. They want to leave it up to local commissioners to decide what to do. But the local commissioners told us that NHS England recommendations influence their decisions, so national guidance would make a difference to the treatment and support men receive. It’s like a never-ending game of pass the parcel, where nobody wins and men continue to receive poor levels of care. So now, we’ve teamed up with other charities to lobby for better guidance. It’s 16 years overdue and we think men deserve better.
In this guest blog, Jim Peters, a veteran prostate cancer blogger, talks openly about his first experience of using injections to help him get an erection after prostate cancer surgery. Be prepared for graphic detail.