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Our small, independent charity - the Edinburgh and Lothian Prostate Cancer Support Group (ELPCSG) – is now well into its third year of operation and continuing to grow in size and influence.
First and foremost, of course, we exist to provide support for our members and their partners, families and carers. We do this with our "buddy" programme by telephone, email and at our regular meetings at the Maggie's Centre at the Western General Hospital in Edinburgh, and in West Lothian at the Ability Centre, Carmondean Centre Road, Livingston. All members have personal knowledge of prostate cancer and will understand what others are going through, including the issues and anxieties that may gnaw away at an individual’s confidence. Guest speakers are also invited to our meetings to offer expert opinion and comment on topics as varied as the latest medical research to the benefits system and nutrition.
(Click HERE for full transcript of the message from Mike Shaw)
All our members have personal knowledge of prostate cancer and will understand what others are going through, including the issues and anxieties that may gnaw away at an individual’s confidence. Our ‘Buddy’ programme is designed to enhance this support and provide a friendly and helpful ear for newly diagnosed men, and we are continuing to work hard to make this service as good as it can be.
Providing support is all-important to our group, but we are also active in looking outwards to build partnerships in an effort to promote awareness of prostate cancer and treatment issues. This involves collaborating with other charities and being active in building links with local and national civic representatives and the media.
The ELPCSG lobbied long and hard at Holyrood and elsewhere to persuade the Scottish Medicines Consortium to approve Abiraterone for use on the NHS in Scotland. It’s a drug that not only extends life after all other treatments have run their course, but can also extend the quality of that life. This argument was won and we have subsequently given our support to men in Australia who are fighting for the same type of change. Their group is called The Advanced Prostate Cancer Support Group and is affiliated with the Prostate Cancer Foundation of Australia (PCFA).
We have also been active in collaborating on a project at the Western General Hospital to provide newly diagnosed prostate cancer patients with an audio recording of their initial specialist medical consultation where treatment options are discussed.
The aim has been to allow patients to revisit complex discussions about the management of their disease, and the recording can be shared with friends and family, and even their general practitioner.
By listening back to the consultation, it is hoped that men with prostate cancer will recall more information relayed to them during consultations which may, in turn, increase patients understanding of their disease, the treatment options and associated side effects of treatment.
During this process we generated publicity in the press, on radio (UK and Scotland), online and on BBC Scotland television. The Scottish Government described the project as worthy of being ‘rolled out’ across Scotland, and requests for information came in from around the UK.
Following the success of this collaboration, we also worked recently with NHS staff to film comments and feedback for a TIPS DVD - ‘TIPS’ as in ‘Tailored Information for the People of Scotland', and in this instance dealing with all aspects of prostate cancer. So do look out for this when it comes on stream in in the next few months. We’ll keep you informed of all developments.
Other media work has included supporting Scotland’s cancer specialists in their efforts to publicise the problems they have been describing in accessing drugs for treatment.
So you can see that we have been tremendously active in the last period. But none of this has been at the expense of our core commitment to providing support for our members, their partners, families and carers. Full details of our contact information and regular meetings can be found on this site. We look forward to extending a very warm welcome to you at our regular gatherings and perhaps to hear from you if you wish to volunteer some of your time and expertise to assist our work in the region.