Setting up a self-help group

Philip Dunn, Founder and Secretary of the Prostate Help Association (PHA) tells the MHF about life before, during and after establishing the PHA

Being diagnosed with a prostate problem back in 1993 was frightening, especially as I had never spent a day in hospital since childhood. Turning to the internet and telephone books to find that there was no patient group was even more scary.

Out on your own, on the prow of the Titanic with the iceberg dead ahead !

From library books and other sources I gained some knowledge and made a decision to avoid the TURP (Transurethral Resection of the Prostate), a sort of reaming out of the prostate core and to opt for a microwave treatment.

Realising how this modest amount of information gain had improved my confidence in dealing with the situation, I printed some informative A4 sheets and put adverts in the free ad papers up and down the country. This produced a small amount of regular mail and it was tackled in slack periods at my insurance brokerage, built up over the previous 25 years. That is how the Prostate Help Association (PHA) was formed.

Christmas 1993 and Jimmy Young had a prostate special. My wife suggested I ring. The result, 2000 letters. Now this set me back on my heels somewhat. The small office printer could not cope so I contacted insurance companies I placed business with to ask for the loan of a laser printer. No joy. I contacted pharmaceutical companies who produced drugs et cetera for prostate sufferers. No joy. Eventually a colleague from another company lent me a laser printer for a month and we answered the letters.

The big leap

So in 1993 we became the first prostate help group in the country. As the postbag grew and help from any source government or business was apparently not available I realised that we had to rely on our own resources and began a modest information newsletter at £5 per year. In mid 1994 as my desk had more prostate related letters than insurance I made a decision and sold my brokerage to concentrate full time on providing information for men with prostate disease. Charitable status quickly followed and mentions simultaneously in two newspapers produced 6000 letters.

So here we are in 2001. We campaigned for more information on prostate cancer when no newspaper was interested in printing such wordage. We do so now about BPH and prostatitis, perhaps this latter disease too will one day become fashionable.

We now have a 21 page A4 magazine which goes to thousands of men not only in the UK but around the world. Our web site www.pha.u-net.com has had 122,799 visits as I write. The book I wrote on prostate cancer, the first book for the layman in the UK, revised and republished is still selling well, adding to the PHA funds. Our charity shop www.ishop.co.uk./ishop/451/ also helps to contribute.

Advice about setting up a help group

My advice to anyone wanting to start up a help group is find a way to be independent. Being tied to any one, government or business, especially by monetary ties restricts your independence. Get your head down, concentrate on your core idea, do not be led aside by fripperies such as pens with your name on, or advertising which costs money.

About the author 

Philip Dunn, Founder and Secretary of the Prostate Help Association is the editor and main writer of the Prostate Focus, he has also contributed to mainstream magazines and web sites such as Surgery Door. He spends several hours each day replying to letters from men and their wives, daughters etc about prostate disease.

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