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Patient presentation 2 - (full conference transcript)
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NKF Young Persons Group Progress
Jim Warham
James is a young transplanted kidney patient, who despite kidney failure, managed his schooling, went on to gain a degree, and amongst other things, currently helps to run the National Kidney Federations Young Persons' Group, and is a member of the NKF web team. To fit in with our theme of today's patient speakers who have achieved, in spite of, or as a result of, their renal failure, James is going to talk to us about the creation of the Young Persons'Group and the progress they have made so far.
I am going to talk about what's happened to the YPG since we launched one year ago, and some of the progress we've made and achievements we've managed both as individuals, and as a group.
The idea of YPG as a support group in itself has been around for some time. People have tried to start groups, individual units on a smaller scale, but as far as we know, nothings been done nationwide, so the incentive for the group really came from Sarah [Tyler], when she wrote to the NKF and identified a shared feeling for lack of support for young people with renal conditions, and requested contact from other patients. We had quite a good response to that. I offered to help, as did quite a few people. Michelle, who is my co vice chair person, offered to help, and at the time she was coming to terms with no longer being a candidate for transplantation, so that for her it was a turning point to actually face that particular problem, and cope with it in a positive way, she had in fact started her own web board but decided to put her efforts towards YPG instead. Last year YPG was born as a group from a variety of personal and shared reasons and needs. I shall point out that the main aim of YPG is a point of contact for young people with kidney failure, and a national support group as well as working together with the main body of the NKF's aims.
Where are we as a group? Well, we are just about everywhere. This is a year on, we now have about a hundred members, and we are fairly well distributed, almost nationwide. The main areas of YPG are Kidneytastic, which is our quarterly YPG newsletter. The first issue was published in December last year and it's receiving very, very positive feedback from our members. We publish a variety of formats including large print for those who need it. It's worth pointing out that it was originally called YPG News, the current name was decided after a competition, which was won by Samantha Garlic, one of our members, and sadly she passed away earlier this year so by continuing to produce Kidneytastic, we will be remembering her. The fourth edition will be out soon, so be looking out for it, and send us your contributions, cartoons, recipes, etc, letters, articles, tell us something basically about yourself, if you feel you have something to contribute, and we welcome that.
The second area has been the pen pal scheme, which is about putting people in touch with each other That's gone through various phases and we now match people based on whether they would like to communicate with someone local to them or a bit further away, nationwide. That's again getting very positive feedback, and that's about combating isolation, and so forth.
The YPG section of Talkline (click here to go to Talkline), which was created shortly after the creation of YPG itself, is again another form of communication. It's beneficial to both YPG members and those outside our age range, as it helps people to understand the specific needs of young patients, and there are specific needs, which have been identified clinically by the medical staff, as well as by ourselves. The advantage of that is it's very accessible, you can walk into any Internet cafe, library, or at home and get online, and its anonymous if you have a personal problem, or something that you don't want to put your name to, to discuss.
That almost concludes our talk. I can give you a little bit of data about YPG. We've had about 200 Talkline posts so far, we've got a roughly equal membership of male and female, and the majority are in the 18-40 grouping. We would like to increase the 0-18 membership, and that's something we are working on.
Moving back to the Talkline area of YPG, the topics of most interest that we've had are the welcome thread, which is basically introducing people to YPG, and we've had some exceedingly good feedback from that. The sort of things we are getting is people saying things like, "You've no idea how long I've been waiting for a group like this", and so we're obviously doing something right. The other most talked about topic is possibly, and unsurprisingly, Disability Living Allowance (DLA), and about a quarter of conversations are about that.
So that's YPG for you. Is it an achievement? Well, I think we feel that it is, certainly on a personal level, but we're going to let you make up your own minds about that. We have had a huge amount of good feedback, so we think we're doing something right, and we'd like to thank everyone who has given us support for that so far. As to the future, at the moment we're still a three person interim committee, so we hope to have a more permanent elected committee at some point in the near future, and we want you to come and talk to us and let us know what you want from YPG, and you can do that today or after the conference. So please do come and say hello.
Thank you very much.
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