PATIENT POWER in ACTION
Introduction and Background
Three years ago we decided to step up our prostate Cancer Awareness and Information campaign across Norfolk, after having had several worrying instances brought to our attention.
Many comments were made by men, who had been refused a PSA test by their G.P. In several cases this had occurred, even when there was a family history of Prostate or Breast Cancer… or both. The feed-back included such comments as “I wish we had known about the PSA test earlier”, some of these came from bereaved wives and partners. Moreover, the fact that over 50% of our audiences had no knowledge at all about Prostate Cancer, nor indeed where the gland was located and what its function was.
We referred these comments to our local PCTs, Urology Departments, local M.P.s and the then Health Minister, where they were treated with only limited interest and polite comment. As a result our Chairman, Ray Cossey, and the Committee, agreed that a more practical, active campaign was required.
The Planning Phase: Identifying Strategic Partners
We decided to arrange a programme of public meetings, offering free PSA tests. After contacting Kidderminster PCSG for more information, we were referred to the Graham Fulford Charitable Trust and to David Baxter-Smith, a Consultant Urologist; both were engaged in a National research programme involving PSA tests.
As our aims were similar we decided to join forces, adding a voice from the East of England, but using our own funds and organisational skills. In order to achieve the widest possible geographic coverage we decided to arrange a series of meetings in the Centre (Norwich), East (Great Yarmouth), and North West (Fakenham) of Norfolk. We had sufficient funding to allow us to undertake up to 250 tests at each meeting.
The analysis of the results of these three Mass PSA Testing Sessions is attached.
The Implementation Phase: The Programme Commences
We were able to recruit a volunteer team of eight phlebotomist-nurses and the co-operation of the Pathology Department of the Norfolk & Norwich University Hospital. David Baxter-Smith gave us his unstinting support and attended each meeting. He explained to our audiences the pros and cons and necessity of PSA testing and early diagnosis, together with his valuable oversight of the medical aspects of Prostate Cancer.
There was an overwhelming response to each meeting, with over 700 applications for our first event: both of the other events were also greatly over-subscribed. Those men we could not include were sent information leaflets and advised to consult their G.P for a PSA test. We explained that under DoH guidelines every man over 50 should be given a PSA test if he requests one from his G.P. They were asked to advise us if they met with refusal.
Our third meeting, which was held in Fakenham in September 2010, was our most successful to date. Donations from those present exceeded £2,000 which greatly helped to defray our costs.
Possible Higher than average Incidence of Prostate Cancer
The results from the 642 men tested, so far, appear to indicate a higher than average incidence of Prostate Cancer in this area. The local hospital Urology Departments have informed us of an increase in referrals, over the same period, in excess of 20%. This has, of course, increased the workload on local Pathology and Radiology Departments. In order to help alleviate this situation we have funded an additional state-of-the-art Bladder Scanner at a cost of £8,000. We have also contributed a further £5,000 towards the cost of diagnostic equipment for Prostate Cancer.
Attitudes are Beginning to Change
As a result of this activity the benefits of targeted PSA testing are now seen, by some of our former critics, to far outweigh its shortcomings. The attitude of local health professionals is, slowly but surely, beginning to change. Some ten G.P. practices have expressed both practical and financial support, with one Norwich G.P. personally donating £1500 towards our costs.
The Coalition Government’s view on screening has taken a dramatic leap forward, with the National Bowel Cancer Screening programme. The time seems ripe to press home the case for targeted Prostate Cancer screening, particularly for clearly identified risk groups. The cost of early diagnosis and treatment is far less than is incurred by late diagnosis. One drawback is the lack of co-ordinated data on these costs by the Anglia Cancer Network.
We can detect some light emerging at the end of a very long tunnel and, with similar activity by our associated Groups within the PCS Federation, we are more optimistic that attitudes will change faster than we have seen during the past seven years.
We have had enquiries from other PCSGs, in particular our friends in Ipswich PCSG, who have started implementing their own test programme. Our next step will be to co-ordinate our regional results into a more detailed briefing paper. This will summarise our findings and highlight what we perceive to be the shortcomings currently existing, which are affecting the early diagnosis of Prostate Cancer.
Addressing the Challenge of Geographic Inequality
With the annual number of new PCa cases, in Norfolk, now exceeding 450 and likely to increase, we have built up our volunteer support network across the County. We now have 29 volunteer PCa patients prepared to offer help, support and advice under the guidance of our Care & Support Co-Ordinator, David Wiseman, who has been trained by Macmillan Cancer Care.
Counties such as Norfolk, due to their size and rural nature, will often experience problems of geographic inequality. Our aim is to help to address this situation in a practical manner and to provide informed, practical support to all PCa patients at the point of diagnosis and beyond.
Summary and Conclusion
This Patient Support Group is now convinced that consideration should be urgently given to targeted PSA testing; for men who have a blood-line, family history on an incidence of prostate and/or breast cancer.
We know of one man, living in Norfolk, whose grandfather and father died of prostate cancer and whose brother had been diagnosed with it. Yet, despite, all these factors, his GP declined him a PSA because the patient concerned was not displaying any of the classic symptoms, which might indicate the possible presence of prostate cancer!
We tested the man concerned and he was found to have an exceptionally high PSA. David Baxter-Smith urged the man to seek a consultation with his GP and to show him David Baxter-Smith’s assessment. As a direct result of the opportunity we afforded this man of having a PSA test, he is currently receiving treatment for advanced prostate cancer.
Men with a family history of prostate cancer are shown, by many respected surveys, to be 3 to 4 times more likely to contract prostate cancer and his message needs, we feel, be conveyed to all GPs, as we very much doubt if all of them are aware of this hereditary factor.
The Analysis of the results of the three PSA testing sessions, which will appear via the link below, has been presented to the Clinical Services Director and consultant urologists at the Norfolk and Norwich University Hospital as well as the management of NHS Norfolk.
The various tables, pie-charts, and other diagrams shown, makes reference to ‘Red’, ‘Amber’ and ‘Green’.
refers to men who had an unusually high PSA level, which was of such concern
that our own consultant urologist advisor suggested they sought an early appointment with their GP.
refers to those men who had a level of PSA which our own consultant urologist
advisor recommended should be monitored at future, regular intervals.
refers to those who had a PSA level which was normal for their age; these men were advised by our own consultant urologist advisor that there was no cause for concern.