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Prostate cancer patients ‘abandoned to deal with erection problems alone’ - Prostate Cancer UK warns

Press Release   •   Nov 17, 2016 15:09 GMT

Thousands of prostate cancer survivors affected by erectile dysfunction are being abandoned without adequate support, new Freedom of Information (FOI) data obtained by Prostate Cancer UK has revealed.

Today, the UK’s leading men’s health charity has issued a warning that patchy, insufficient care for erection problems is leaving men across the country with unnecessary long term physical and psychological damage, and is calling on the nation to take action by campaigning for better care in their area.

Erectile dysfunction is a common side effect of prostate cancer treatment, affecting 76% of men who have been treated for the disease1 but it can often be treated if the right care is available.

However, the results of recent FOI requests issued by Prostate Cancer UK2 reveal a dramatic post code lottery of support with just 13% of local health commissioners across the UK providing the breadth of treatment and services needed to give men living with this challenging condition the best chance of recovery. These findings are reinforced by the results of a survey of over 500 men with erectile dysfunction after prostate cancer treatment3, in which as many as 1 in 4 (24%) men claimed no one offered them support or medication to deal with the issue.

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

“As a specialist nurse, 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 is 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.”

It is the responsibility of commissioners (CCGs in England, Health Boards in Scotland and Wales and Health & Social Care Trusts in Northern Ireland) to bring about change at a local level. In a bid to put a stop to the 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.

Recent treatment guidance for erectile dysfunction produced by Prostate Cancer UK and Macmillan Cancer Support recommends early intervention and a choice of five treatment and support options in order to give men the best chance of recovery4. Treatment and support should include access to a NHS erectile dysfunction clinic, an appropriate choice of medication including daily low dose tadalafil (Cialis®), vacuum pumps, and access to psychosexual clinics and counselling services. Erectile dysfunction clinics are widely regarded as the most essential service, as they provide support across both physical and emotional needs and help men to understand what they should expect at each stage of their recovery. However, the FOI results revealed that only half (51%) of commissioners could confirm that they offer this as an option. Two commissioners admitted that they offer no support whatsoever and almost 1 in 5 (17%) were completely unaware of the arrangements in their area. 17 commissioners failed to provide satisfactory information for all questions raised in the request.

Robertson continued; “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. 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 White from Leeds (42) was diagnosed with prostate cancer at the age of 41. He had an operation to remove his prostate in October 2015.

“My partner and I were made fully aware of the possible side effects – incontinence and erectile dysfunction, but at the time I was so focussed on getting rid of the cancer – 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.”

To join the fight and campaign for better care for men in your area, visit: bettercare.prostatecanceruk.org

For further information on erectile dysfunction visit: prostatecanceruk.org/erectiledysfunction or speak to Prostate Cancer UK’s Specialist Nurses on 0800 074 8383.

Ends

Notes to Editors

References:

1. Prostate Cancer UK. Men’s views on quality care in prostate cancer: What does good quality care mean for men with prostate cancer? Total sample size was 610 UK men. Fieldwork was undertaken between October 2011 and January 2012 [Internet]. 2012. Available from: http://prostatecanceruk.org/media/2491129/prostate_cancer_uk_quality_care_survey_report_june_2012.pdf

2. Prostate Cancer UK submitted Freedom of Information requests to 235 commissioners (CCGs in England, Health Boards in Wales and Scotland and Health & Social Care Trusts in Northern Ireland) across the UK through the ‘What Do They Know’ website asking if they commissioned a number of erectile dysfunction treatments and support services focusing on the 5 identified erectile dysfunction support services.The response rate was 98.7%. Requests were undertaken between May and June 2016. An example FOI request can be viewed here: https://www.whatdotheyknow.com/request/erectile_dysfunction_service_pro_6?nocache=incoming-811116#incoming-811116

3. Prostate Cancer UK. Erectile Dysfunction After Prostate Cancer Treatment. Total sample size was 561 men and 54 partners. Fieldwork was undertaken between August 2013 and March 2014. The survey was carried out online and on paper. 2014

4. Macmillan Cancer Support and Prostate Cancer UK. Treating erectile dysfunction after radical radiotherapy and androgen deprivation therapy (ADT) for prostate cancer. A quick guide for health professionals: supporting men with erectile dysfunction [Internet]. 2015. Available from: http://prostatecanceruk.org/for-health-professionals/guidelines/erectile-dysfunction-after-surgery

Macmillan Cancer Support and Prostate Cancer UK. Treating erectile dysfunction after surgery for pelvic cancers. A quick guide for health professionals: supporting men with erectile dysfunction [Internet]. 2015. Available from: http://prostatecanceruk.org/for-health-professionals/guidelines/erectile-dysfunction-after-surgery

FOI results:

Table 1: List of UK local commissioners (CCGs in England, Health Boards in Scotland and Wales, or Health & Social Care Trusts Northern Ireland) that provide the least support for men with erectile dysfunction as a result of prostate cancer treatment in the UK (between 0-2 ED services and do not offer ED Clinic) and 20-year prostate cancer prevalence (number of men living with and after a diagnosis of prostate cancer).

Commissioner (ranked by the number of ED services provided) Number of ED services provided out of a maximum of 5 20-year prevalence (number of men) 20-year prevalence (age-standardised rate per 100,000 men) The rate can be used to directly compare areas of different population size
Northern Health and Social Care Trust (Northern Ireland) 0 1722 732
Western Isles Health Board 0 136 1000
NHS Castle Point, Rayleigh and Rochford CCG 1 991 1181
NHS Ealing CCG 1 1042 623
NHS Heywood, Middleton & Rochdale CCG 1 901 873
NHS High Weald Lewes Havens CCG 1 909 1134
NHS Hillingdon CCG 1 897 673
NHS Hounslow CCG 1 608 487
NHS Mid Essex CCG 1 1832 992
NHS North East Essex CCG 1 1442 953
NHS Oxfordshire CCG 1 3024 964
NHS Southend CCG 1 841 1000
NHS Vale of York CCG 1 1961 1184
NHS Wandsworth CCG 1 1024 698
NHS West Hampshire CCG 1 3341 1278
Southern Health and Social Care Trust (Northern Ireland) 1 1288 719
Orkney Health Board 1 81 774
NHS Harrogate and Rural District CCG 2 1054 1367
NHS Hastings & Rother CCG 2 853 986
NHS Stockport CCG 2 1635 1186
NHS Warwickshire North CCG 2 840 915

Sources of prevalence data:

Public Health England/Macmillan Cancer Support. Macmillan-NCIN Cancer Prevalence Project. 20-year cancer prevalence in the UK (as of 2010) - England/Scotland/Northern Ireland Cancer Prevalence Tables [Internet]. 2015 [cited 2016 Nov 9]. Available from: http://www.ncin.org.uk/about_ncin/segmentation

About Prostate Cancer UK

Prostate Cancer UK leads the fight against prostate cancer. We fund ground-breaking research, drive improvements in treatment, and fight injustice in care. Now we’ve set ourselves the toughest challenge yet: to stop prostate cancer being a killer.

Through shifting the science over the next 10 years to focus on radical improvements in diagnosis, treatment, prevention and support, we can make prostate cancer a disease the next generation of men need not fear.

Whilst we focus on the future we must also ensure better support for all men now. Prostate Cancer UK has a number of programmes aimed at reducing unacceptable regional variation in treatment and care throughout a man’s journey with the disease.

Prostate cancer statistics:

  • 11,287 men die from prostate cancer in the UK each year. That's one man every hour.
  • It’s the most common cancer in men, with 330,000 living with and after the disease in the UK.
  • Prostate cancer is set to become the most commonly diagnosed cancer of all in the UK in 2030 - which is why we must all act now to curb its power to kill.
  • Men over 50, black men and men with a family history of prostate cancer all face a higher than average risk of the disease.
  • Prostate cancer treatment often causes devastating, long term side-effects.Incontinence and erectile dysfunction strike at the heart of what it means to be a man.
  • Anyone with concerns about prostate cancer may contact Prostate Cancer UK's Specialist Nurses in confidence on 0800 074 8383 or online via the Live Chat instant messaging service: www.prostatecanceruk.org. The Specialist Nurse phone service is free to landlines and open from 9am to 6pm Monday to Friday with late opening until 8pm on Wednesdays.
  • Visit www.prostatecanceruk.org now to help beat this disease.

Prostate Cancer UK is the UK’s largest men’s health charity. We aim to help more men survive prostate cancer and enjoy a better quality of life.