Useful links

taken from Small Gland, Big Problem 4th Edition
by Professor Roger Kirby, Health Press 2011

When seeking further information and support, it is important to choose your source carefully. The internet, in particular, is a popular source of material, but sites are unregulated and much of the information is unvalidated and sometimes frankly promotional. The sources listed below are just some of the myriad books, websites and charities out there, but they should provide further sources of help and information about all aspects of prostate disorders, their treatments and their effects. Although the sources have been put into different groups (and some are listed more than once), there is considerable overlap and the headings are just suggestions as to the best place to look for information first.

General health and lifestyle

  • The NHS provides guidance on portion sizes for fruit and vegetables at www.5aday.nhs.uk, or telephone the NHS Responseline on 08701 555455 and ask for a leaflet with details of typical portion sizes.
  • Men’s Health Forum (www.menshealthforum.org.uk) adopts a number of strategies to improve the health of men and men’s health services. One of these is a website called MALEHEALTH (www.malehealth.co.uk), which provides essential, accurate and easy-to-use information about the key health problems that affect men. It also includes an online health check.
  • Health of Men (www.healthofmen.com) is a 5-year Big Lottery Fund initiative that provides “quick clear health information for boys and men”. This includes advice about all aspects of lifestyle, such as eating, exercise and dealing with stress, as well as other men’s health issues.
  • NHS Direct gives a wide range of information about health, conditions, treatments and local services. It can be accessed either by telephone (helpline 0845 4647), via the internet (www.nhsdirect.nhs.uk) or, if you have digital satellite television, via the NHS Direct Interactive service.
  • www.embarrassingproblems.com is a website that covers health problems that are difficult to discuss with anyone.
  • SAGA Health (www.saga.co.uk/health_news) provides broadly based health information for the over-50s. It also includes sections on medicines and supplements, as well as complementary medicine.
  • The website for the journal Trends in Urology and Men’s Health (www.trendsinurology.com) has a ‘patient resources’ section from which many helpful leaflets and information sheets can be downloaded.

Prostate disorders

  • Prostate Action (www.prostateaction.org.uk) provides clear concise and up-to-date information. Phone on 020 8788 7720 or email info@prostateaction.org.uk to get in touch.
  • UK Prostate Link (www.prostate-link.org.uk) provides a searchable database of quality-assessed links to prostate cancer information on the internet. It also has links to a number of sites featuring personal experiences.
  • Macmillan Cancer Support (www.macmillan.org.uk) provides comprehensive information about all aspects of prostate cancer from diagnosis to the latest clinical trials. Helpline (staffed by specialist cancer nurses): 0808 808 0000.
  • The British Prostatitis Support Association (www.bps-assoc.org.uk) is a web-based organization that offers information and support to sufferers of prostatitis, male chronic pelvic pain syndrome and interstitial cystitis.
  • Health Press publishes a number of books by Professor Roger Kirby and others covering prostate disorders. Patient Pictures: Prostatic Diseases and their Treatments provides a simple guide to the most common procedures used to treat prostate problems. Fast Facts: Prostate Cancer and Fast Facts: Benign Prostatic Hyperplasia, although written for doctors, are also read by patients wanting more detailed information. Order from www.fastfacts.com or telephone 01752 202 301.
  • The Prostate Cancer Charity (www.prostate-cancer.org.uk) provides information about all aspects of prostate cancer including diagnosis, treatment and side effects. You can phone the helpline on 0800 074 8383 or email the charity via the website.

Treatment

  • Besttreatments (www.besttreatments.co.uk) is run by the British Medical Journal with the aim of helping you make better health decisions. It looks at all the best research evidence and decides how well treatments work.
  • The National Institute for Health and Clinical Excellence (NICE) produces evidence-based guidance for the NHS. Enter ‘prostate’ in the search box on their website (www.nice.org.uk) to see the latest guidance.
  • The American Cancer Society (www.cancer.org) provides an online decision tool to help you understand the treatment options for prostate cancer and the possible side effects.
  • Bandolier (www.medicine.ox.ac.uk/bandolier) is an independent journal about evidence-based healthcare, written by Oxford scientists. They find information about evidence of effectiveness (or lack of it), and put the results forward as simple bullet points of those things that worked and those that did not.
  • The National Cancer Institute in the USA (www.cancer.gov/prostate), as you might expect, provides comprehensive information about prostate cancer, but also includes information and current news about clinical trials and trial-related data.

Continence

  • The Bladder and Bowel Foundation (www.bladderandbowelfoundation.org) offers information, advice and expertise about bladder and bowel problems, no matter how small. Their helpline is staffed by specialist nurses who will be able to give you the information and advice you need, and also tell you where to find your local NHS specialist continence service: 0845 345 0165.

Sexuality

  • The Sexual Dysfunction Association (www.sda.uk.net) has a wealth of advice on male and female sexual problems. Helpline: 020 7486 7262.
  • Sorted in 10 (www.sortedin10.co.uk) offers information about erectile dysfunction and gives advice on approaching your doctor and treatments available, as well as advice for partners on dealing with impotence.

Practical support

  • Macmillan Cancer Support (www.macmillan.org.uk) provides information on practical issues via its website.
  • Marie Curie Cancer Care (www.mariecurie.org.uk) also provides information and support. You can contact them by phone on 0800 716 146 or by email at supporter.services@mariecurie.org.uk
  • Your local library may also be able to provide you with details of services available from your local council.

Support groups

  • Websites such as Macmillan Cancer Support (www.macmillan.org.uk) have online communities where you can share experiences with others.
  • Local support groups will enable you to meet others in a similar situation. Your GP surgery may be able to put you in touch with relevant groups.
  • The American site PSA Rising (www.psa-rising.com) provides information and support for prostate cancer survivors. The site offers online forums and the latest news about prostate cancer and its treatment.