Hello everyone, After attending and sharing my story at the Newcastle CLL conference I was encouraged to start a support group in East Yorkshire. I wonder how many people would be interested in helping/attending such a group.
It is my intention when I see my care team on 16th September to discuss the possibility of using either Bridlington or Scarborough hospitals for meetings.
Well done kitchengardener! Sadly it’s too far away for me but I’m sure there must be a need in your area.
Good luck!
Newdawn
Thank you for your interest, all we can do is try.
Do either of them have a McMillan centre ? I know support groups are able to access my local one in London. My little group use local pubs and restaurants.
Good luck
Colette
I will check on that, thank you Colette.
They may have existing support groups. Worth checking. I have recently got involved with patient information with McMillan because it was years before I knew they existed as they are in a building hidden at the back of the hospital. And how do you access information you don’t know exists !
Hiya!
I am interested in setting up a support group. Sadly am not in your area.
I would be very interested in learning how you get on and what you do etc
Jig.
Thanks for your interest, watch this space!!
Hi, I live in the North Yorkshire area. I would be interested in helping. I’m already trying to determine if there is sufficient support for a group in the Teesside area. There is a guidance document on setting up support groups available from CLLSA.
Michael
Hello Michael, I will let you know how things go when I speak to my nurse in two weeks.
Thanks for your interest
KitchenGardener
Well done and I hope you make a success of it.
We set up a support group in Plymouth (Devon) just over a year ago. We had over 60 people to the launch and regularly get 20 to 30 at our quarterly meetings. All the feedback has been that people appreciate having others in a similar situation to talk to and share with.
We started off with some help from the Hematology dept at the Plymouth hospital, as they had a list of people who were registered with CLL. Once we got going, we spread some of the tasks between those present:- Meetings organiser, Website design, Facebook group, etc.
THE NHS provide training for volunteer "Buddies" to be mentors to newly diagnosed or those about to start treatment, across all health sectors.
We published a small handout that each person could pass to their local health-centres to get the word out to future potential patients, and the newly diagnosed.
Leukemia Care, CLLSA, Bloodwise and Macmillan all fund and run support groups, so it may be worth checking if they have anything going already, or if you want to ally with them to get help in starting up something new.
Best of luck
N.
OwnedByACockerSpaniel.
Thank you for all this information, I will take this with me when I see the nurse and see what can be done.
Cardiff uses central library perhaps yours has meeting rooms available
Thank you so much for your reply, yes we two libraries in Bridlington, one of which has several meeting rooms so I will investigate that.
Unfortunately it is too far for me. We run a support group & this is how we came by our meeting place.
Firstly our committee thought that lots of people would be put off coming back to hospital premises and/or would think the group was affiliated . Where would we find conducive affordable room? It was suggested we look at the meeting places of other support groups. These were often church halls. We found the centre manager to be really supportive- we paid hardly any rent until we were established.
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