National Amyloidosis Centre Patient Forum

Amyloidosis => Local Support Groups => Topic started by: Anita Horton on June 12, 2018, 06:42:13 pm

Title: Birmingham support group
Post by: Anita Horton on June 12, 2018, 06:42:13 pm

Hi, I am wondering if there is anyone in the Birmingham area who would like to meet up for a chat/,support ?
I am a little disgruntled at not having much support from my local hospital, today it seemed i knew more about AMYLOIDOSIS than the consultant, she explained she didn't know much about it !!!
It occurred to me that there is no-one nearby if you need to vent. I know family and loved ones are fantastically supportive, but sometimes they can be too close and I never want to upset them.
If like me you would just like to bend the ear of someone who really understands, then please get in touch.
I have had AL amyloidosis since March 2013 and a SCT in June 2014. I am 50 years young !

Title: Re: Birmingham support group
Post by: nvroberts on June 18, 2018, 09:52:51 am

Anita,

Disapppointing to hear you do not get much help from your local hospital. I am not too far away, treated at Derby Royal where I get very good help.  Which Birmingham hospital is it? Maybe you can ask to be transferred to another one.

I am not aware of a Birmingham support group, but if you can find any other local patients maybe I could manage to get over that way to meet up, though it would be a big effort as I am not in great condition.

Title: Re: Birmingham support group
Post by: Lesley on June 27, 2018, 10:25:32 am

Hi Nita

if you want to bend an ear via text or phone - do you have my mobile number? it would be good to just chat. I know what you mean about being isolated though I do have good support from my local hospital. A Thought Nita - do you have Ellen Watters email from Myeloma - she has given me such incredible support. Let me know if you want her details.
Loves and hugs hun
xxx

Title: Re: Birmingham support group
Post by: Duran on August 18, 2019, 10:32:32 pm

Hi, I live in Birmingham & happy to join a local support group 😊

Title: Re: Birmingham support group
Post by: sandra.quinn on October 07, 2019, 10:30:28 am

Dear all,

I was wondering whether there was anyone in the Birmingham Support Group (a carer/family member) who would like to be an author for the next edition of AL amyloidosis Matters. I would really appreciate hearing from carers who are interested in contributing.

To get in touch email me at sandra.quinn@myeloma.org.uk

best wishes,

Sandra Quinn

Patient and Carer Support Manager
Myeloma UK