Prostate Cancer Support Association (Central England)

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The Need for a National Federation of Prostate Cancer Support Groups

The Prostate Cancer Support Federation is a national organisation set up to represent, with a single voice, the views and concerns of the patient-led prostate cancer community. There are currently many independent patient-led prostate cancer support groups and charities in the UK. These groups are very active in providing help, support, and information to patients and their carers. Many are also active in raising awareness and helping to influence local medical opinion and practice. The establishment of a federation will in no way interfere with any of these activities. However, it is recognised that if we can speak with a single voice on a range of PC related issues then we can have far more influence and impact than when we act individually.

The Launch of the Prostate Cancer Support Federation
The Federation as an organisation has actually been in existence for several years. Its core members have worked hard to try and influence NHS policy. It has also always had a national Help Line. However, the time has come to formally involve, consult, and represent the many independent groups up and down the country. Therefore, the Federation staged an “Inaugural Conference” on 28 April this year. All PC support groups were invited to send representatives. The attendance was excellent with 55 members representing 30 independent support groups. The conference was addressed by four guest speakers - three leading research specialists, and the CEO of Prostate Cancer Research (which funded the launch). There was also a ‘business’ session to elect members to the Federation committee, and consider issues of funding and oganisation. The detail of these sessions is covered elsewhere. However, a number of important points were clear to those attending:
· The existing trustees and active members of the Federation are well respected in the relevant medical and research communities. They have the contacts and influence to persuade key research specialists to address the conference.
· These members also have the necessary knowledge and background to engage and influence policy makers and opinion formers. If such people can now speak on behalf of a wider community then they will carry far more weight.
· Prostate Cancer diagnosis and treatment is developing all the time. It is important that we are aware of the latest treatment options and success rates, so that we can guide and give reassurance to our members.
· There are a number of PC related issues that need to be dealt with at a national level if we are to have any hope of success:

Availability of treatments. Not all prostate cancer treatments are uniformly available – a ‘post-code’ lottery still exists for some treatments.
Awareness. More needs to be done to make men aware of the possibility of PC and how best to use and interpret the PSA test.
GP Awareness. The attitude of GPs to men expressing concern about the possibility of PC is not always supportive. It is vital to have balanced information and guidelines so that GPs encourage men to discuss and deal with these concerns.
Improvements in NHS service. While significant improvements have been made in the level of service to prostate cancer patients more can be done.
Research Priorities. The Federation is highlighting the benefits to its members of having a say in influencing research priorities.

Watch this space
The Federation has it’s own Newsletter, Prostate Matters, copies of which will in future be sent out with our own local Newsletter. Also, our own web site will be modified to make it easier to view Federation news and campaigns.