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We believe that every man should have access to a good quality prostate cancer support group. But what if there isn't one in your local area?
When Don Geldard, 74, was diagnosed with advanced metastatic prostate cancer in January 2014, there was no support group where he lived in Southport, nor West Lancashire. "I guess I slipped through the net," he said. I remember going into hospital and seeing gentlemen who were confused and unhappy. I'd get into taxis and speak to the driver about prostate cancer, chat to other men and I realised they all wanted to know more. So that was the beginning. I wanted to start a support group."
Don contacted Prostate Cancer UK in late 2013 and spoke to Yvonne Trace, the Support Group Developement Officer, in Southport. "We looked through the list of support groups in the UK," said Don, "and we realised that there were a lot of groups around Lancashire, a few between the Lake District and North Wales, but nothing in the middle. So I said to Yvonne 'I'm happy to set one up, but how do I go about it?' ".
"Yvonne spoke to local clinicians and hospitals and found that they were keen to be involved. So two consultants, two people from the local day centre, myself and Yvonne met in a local pub and decided it was an idea worth pursuing."
Together they set up the first group session in March 2014 at a local bowling club. Nobody was sure how many people might attend. Don said: "To be honest, I thought we might have half a dozen!" They were both amazed that 40 people came along.
Yvonne said: "The key to 40 was involvement from local consultants and services to circulate information. They probably sent 400 to 500 letters, patients in clinics were being referred and we worked with local organisations like Healthwatch to let men know support was out there."
The first meeting.
Don remembers the first group meeting well. "People arrived and sat at tables, it was quiet. But then we had health professionals giving talks on subjects like radiotherapy and chemotherapy and people asked questions. I had no idea what people do at support groups, none of us did really. But we wanted to throw everything into it."
Yvonne added: "We sent around a questionnaire asking people how often they'd like to meet and what we should discuss. We wanted to make sure we could deliver what they wanted."
At the second meeting in May, they had 80 people. "The room wasn't big enough so we had to do a bit of negotiating to get a bigger one!" said Yvonne.
Now the group meet every month with an average of 60+ people each time, a mix of men and their partners. Yvonne said: "What's worked really well is having a regular 'Knowing me, Knowing you' bit where people can share their story and talk about their journey. We have also had consultants giving presentations on side effects like erectile dysfunction. At first we thought 'Are we talking about this too soon?' but people asked questions and the group really bonded."
The way health professionals have given their time really impressed both Don and Yvonne.Yvonne said: "Local consultants and specialist nurses were so keen to be involved. They come from work at about 7pm, after a long day, but they still come to this meeting for two hours. They facilitated the first few sessions but by autumn 2014 we had people who were interested in running the group, which was great because it should be patient led. You need dedicated people who want to take it on."
The group now has a chairman, a treasurer and a secretary, plus other committee members, are an affiliate group of Prostate Cancer UK and in May 2015 applied for a grant.Yvonne said: "Every meeting there's a raffle and the money made from tickets covers the room hire and refreshments. The group is now in great shape and it's a testament to the hard work that everyone in the local area has put in. Through teamwork and a common goal, we've been able to move this forward and give men the local support they need. And I'm so pleased for Don, who's probably one of the happiest men you could meet."
Don said: "It's rather nice! In that first 15 minutes everyone's having a coffee, wandering around, chatting to each other. There's an awful lot of laughter and it's quite fun. I know some people have made new friends and hopefully we'll keep getting new people along. But the others do so much work, I don't do anything!"
I doubt the 60 plus people who regularly attend the support group, and benefit from sharing their story and meeting others would agree with that!
Sadly Don passed away in July 2015, however, his legacy very much lives on.
Thursday 1st August
Hurlston Hall, Hurlston Lane, Scarisbrick, Ormskirk L40 8HB
Guest Speaker: Sue Boyes - Support Group Development Officer, Prostate Cancer UK
Subject: An update on the work and research of Prostate Cancer UK
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Southport & West Lancs Prostate Cancer Support Group offers support and help to members and their families.
Medical advice about an individual's illness should always be obtained from a qualified medical practitioner.