Building a Better Health Service


The personal story that helped to shape GP guidelines

The most challenging issue for Tom Hope after he was diagnosed with prostate cancer was accepting that he had the disease. 

“I had not caused it – I don’t drink, smoke and exercise regularly. I knew it was unlikely to cause me any difficulty and was unlikely to kill me. I was in total shock. I had no symptoms or any difficulty with my urinary function.” said Tom.

Tom has been using his own personal cancer experience to help others and to shape the Prostate Cancer GP Referral Guidelines.

In 2009, on an annual visit to his doctor to get his blood pressure checked, the then 62-year-old has blood samples taken as part of a ‘normal annual NCT check’.

“About a week later my doctor contacted me and said that there were some high blood test readings and he would like me to see an urologist. I didn’t realise what the readings were or what they might mean,” he explained.

“The urologist was concerned that my PSA readings had jumped from 2.9 to 4.5 and recommended a biopsy. The biopsy showed I had low grade prostate cancer.”

He was given the option of surgery to remove the prostate, which carried a risk of incontinence, or active surveillance.

“Active surveillance involved getting a blood test every six months to monitor his PSA and visiting my urologist every six months and getting a Digital Rectal Examination (DRE) to monitor the status of the cancer. I decided to follow Active Surveillance as I did not wish to risk incontinence. I knew I could always opt for surgery at a later stage if I changed my mind,” he said.

“Now nine years later after two further biopsies, both of which came back clear, and PSAs moving  in the range 2.7 -7.3, I can say I am in good health.”

In May 2013, he was invited to join the Irish Cancer Society’s Survivor’s Support Services as an Active Surveillance patient and received four days’ training, and became part of their support services talking to patients who were referred from the ICS Help Desk or the Daffodil centres.

“I joined Men Against Cancer (MAC), a support group for men who have been diagnosed with prostate cancer and became part of their committee back in 2014. I volunteered to be a volunteer driver for the Irish Cancer Society bringing patients to their hospital for their chemotherapy, which I do once a week,” said Tom.


The launch of the Prostate Cancer GP referral guidelines. 

“In October 2016 I was invited as a patient representative to join the NCCP committee reviewing the Prostate Cancer GP referral guidelines. This was an experience I really valued, participating in the review of the guidelines over six meetings, being given a chance to input the patient’s perspective of the test, receiving the results, reaction, anxiety and uncertainty.

“At the same time, I got an understanding of the perspective of the GPs, urologists, pathologists , researchers and urology/oncology nurses on the research papers and the other medical issues that were considered as part of the review.”

He encouraged other cancer patients to get involved and have their voices heard.

“After my experience of participating on this NCCP committee, I would encourage any cancer patient to participate on a committee as patient representatives or in support groups where they can help others by sharing their treatment experience and find it a most fulfilling experience,” said Tom.

New National Cancer Control Programme (NCCP) Prostate Cancer GP Referral Guidelines aim to provide GPs with information on how to refer patients with suspected prostate cancer, to one of the eight Rapid Access Prostate Cancer Clinics. 

Prostate cancer is the second leading cause of cancer in men, after skin cancer. Over 3,300 men are diagnosed with prostate cancer in Ireland each year.

Dr Barry McGuire, Chair of Guideline Development Group and Consultant Urologist, St Vincent’s University Hospital said, “The guidelines should better assist GPs in guiding patients on whether they should have a PSA test or not, and include new more detailed groupings that specifically address clinical concerns relevant to the patient’s age.

“As patient involvement was key to ensuring patient needs were identified, prostate cancer patient representative Tom Hope was invited to sit on the Guidelines Development Group.”

Eileen Nolan, Programme Manager NCCP, said they were delighted to have Tom join the working group.

“Here at the NCCP, we have informally adopted a motto ‘Nothing about patients, without involving patients’. Tom’s experience provided practical advice and unique patient insights that improved the guideline,” she said.

Dr Eve O’Toole, Research & Guideline Programme Manager, NCCP, added, “This guideline integrates the best research evidence with clinical expertise and patient preferences to allow informed shared decision making between the GP and the patient with regard to prostate assessment.”