I am trying to starting a CML support group for the south west as sadly we are lacking in this area. I have spoken with the support nurse at the hospital where I am treated and she is supportive of the idea. But, I have no idea how to go about starting a group. So I am asking for ideas,please, if anyone has been involved with setting something up, please could you pass on some pointers for me?
I will shortly be putting up the CML patient & careers seminar poster at the hospital and thought it might be a good idea to tag something on with this at the same time.
Many thanks
Ali
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starting a support group
susan dickerson
Hi Ali, It is good to know that you are wanting to set up a support group in the south west, I have just set up a support group in the yorkshire region, it has taking a lot of time and hard work. I had a lot of help from my haemotology nurse who informed all the other nurses in this area, they have meetings on several occassions so it was a matter of them informing their cml patients and sending out letters to find out who would be interested in a support group. The problem being is that one cml patient cannot be given details of another cml patient who attends the same hospital or clinic or lives in your area so unless you find out some other way then all communication has to be through the nurses or consultant. The best thing to do is to keep posting on this site regarding the area and hospital or clinic that you attend so that other people will see where you are and then you should be able to make contact. I only found out that there are 2 more people with cml just down the road from me by posting on this site to tell people what I wanted to do,where I was and what hospital I attended. Good Luck I live in Queensbury Bradford West Yorkshire attend Bradford Royal Infirmary.It maybe too far for you to join us but you would be more than welcome at our meetings at St James Leeds for our support group meetings also Hammersmith have a support group Sue D
Sandy, sorry, I have put your contact details in a "safe Place" & now cant find them! Please could I have them agin or feel free to email me, ali@loram2028.fsnet.co.uk. Thanks.
Ali
I remember now - I'm the member with the son with CML who lives near Bristol, who you referred to on another thread! It comes back to me that we have had this conversation before..... If you do manage to get something started in SW I would be interested in being involved altho I am a distance away. My son has had a BMT (in Summer 2008) but is still undergoing donor lymphocyte top-up treatment and it can feel a bit lonely at times. The journey is far from being over! My email is kestrel.08 'AT' btinternet.com if you would like to be in touch about supp gp plans.
All the best,
kestrel