Author Topic: Scotland Support Group  (Read 45803 times)

Miriam Vered

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Re: Scotland Support Group
« Reply #15 on: May 04, 2015, 08:34:23 am »
Hi Brian,
Welcome to the forum.
All my condolences for losing Beth. Amyloidosis is rare at age 52, which probably contributed to the delay in diagnosis. Unfortunately your story of "bouncing" between different specialists before amyloidosis is diagnosed is all too common for patients of all ages.


I'll look into the statistics you asked for and get back to you.




 

georgeturner

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Re: Scotland Support Group
« Reply #16 on: May 04, 2015, 11:54:48 am »
Hello Brian,

Welcome to the forum. I'm very sorry to hear of the loss of your wife Beth at such a young age. Unfortunately your story of missed/late diagnosis of amyloidosis seems all so familiar and the fact that it was too late to save Beth is so very sad.

I am very interested in the work you are doing in raising the awareness of both the medical profession and the public about the diagnosis and treatment of amyloidosis. I, and I'm sure many others on the forum, would be pleased to help you in any way we can.

You would be most welcome on board our Scotland Group. Both Gail and Mark have AL amyloidosis and I have ATTR amyloidosis. We talked about how we could become more involved as a group. Mark has already some experience in talking to the medical profession.
We planned to meet again in July, but if you would like to meet sooner, I live in Glasgow and I'm retired so available to meet with you sooner if you wish. The others may wish to join us.

Best wishes to you and your young daughters.




Slainte Mhath,
George

spudair

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Re: Scotland Support Group
« Reply #17 on: May 04, 2015, 08:51:28 pm »
George, thanks for response, reading it on my phone, I will get in contact when back on desk pc, it's great support and if I can deploy something that helps others and remembers my wife I will feel good, be in touch soon. Brian


georgeturner

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Re: Scotland Support Group
« Reply #18 on: May 06, 2015, 06:06:07 pm »
For those of us in the Glasgow area, I have met with the support nurse who runs the Glasgow Myeloma Support Group with Myeloma UK. She is happy for Amyloidosis patients to attend their meetings, some do so already. Although Myeloma is linked to AL Amyloidosis, patients with other types of Amyloidosis would be welcome to attend.

The Glasgow Myeloma Support Group meets at -
Maggie’s Centre,
Gartnavel General Hospital,
1053 Great Western Rd,
Glasgow G12 OYN (next to the Beatson).

They meet from 6:30pm to 8:30pm on Thursday evening, every six weeks.
Their next meeting is on Thursday 21 May 2015.
Slainte Mhath,
George

georgeturner

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Re: Scotland Support Group
« Reply #19 on: May 15, 2015, 07:24:42 pm »
Additional Meeting.

I am planning to meet with Gail around noon on Tuesday 19th May at Kilmarnock bus station. It's in addition to our planned meeting sometime in July. We'll be having lunch and a general chat and catch up.

Mark and Brian, if you or any others are interested and available, it would great if you could join us.

I'm also hoping to go to the Myeloma UK meeting at the Maggie Centre near the Beatson in Glasgow on Thursday 21st. If you have any questions you'd like me to ask, post or e-mail them to me on the forum.
Slainte Mhath,
George

spudair

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Re: Scotland Support Group
« Reply #20 on: May 18, 2015, 10:27:34 am »
George,

Thanks for the invite
I work  (08:30 till 16:30 weekdays)

but in the near future I have holidays Fridays and Mondays during the school holidays
I will try and have a catchup with everyone during this time.

Regards

Brian

georgeturner

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Re: Scotland Support Group
« Reply #21 on: May 18, 2015, 11:29:56 am »
Thanks for getting back Brian.
I know some people have to work and you have your daughters to care for too. Maybe we can have our next meeting at the weekend. It would be interesting to learn about how you are progressing with the hospital. It would be great if it led to earlier diagnosis and more awareness of amyloidosis.

All the best.
Slainte Mhath,
George

spudair

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Re: Scotland Support Group
« Reply #22 on: May 21, 2015, 11:02:24 am »

George, As I read your Statement you gave me the energy to fight on for action for Patients

>>>It would be interesting to learn about how you are progressing with the hospital. It would be great if it led to earlier diagnosis and more >>>awareness of amyloidosis

I Started out with a great Guy in Ayr Hospital who was going to deliver on earlier diagnosis and more awareness of amyloidosis
However he was head hunted and I am now in someone else's hands and they are delivering nothing.

I have had two chats with the new person at the hospital but have now been written off with no verbal or written closure
I always said after a friendly approach I would close with an ombudsman audit of the path we followed during Beth's trouble.

I have told the hospital to get someone who can deliver onto the case or I bypass the friendly approach and go to the ombudsman

I will update you on the full saga when I get to chat with you.

Brian

georgeturner

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Re: Scotland Support Group
« Reply #23 on: May 22, 2015, 11:56:01 am »
Maggie's Centres

https://www.maggiescentres.org/

"Maggie’s offers free practical, emotional and social support to people with cancer and their families and friends. Help is offered freely to anyone with any type of cancer. Simply drop-in at any time - you’re always welcome."

I went along  to the Myeloma UK Group meeting last night at the Glasgow Maggie's Centre, and although I have ATTR Amyloidosis and not AL Amyloidosis, I was made very welcome by both the Myeloma UK nurse running the group and the Maggie's Centre staff. This is a great facility with a warm and relaxing atmosphere.

There are Maggie's Centres around the UK attached to NHS cancer hospitals. There is also a Maggie's Online Centre. I've attached a link to their website. Hope they can help.

Brian, great to meet you there and share our experiences. Take care.
« Last Edit: May 25, 2015, 10:39:03 am by georgeturner »
Slainte Mhath,
George

georgeturner

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Re: Scotland Support Group
« Reply #24 on: June 12, 2015, 01:17:39 pm »
July Meeting

I thought I'd better start trying to arrange our July meeting. I'm off on holiday 24th of June, followed by an appointment at the NAC 6/7th of July.
I'll be available to meet up from 13th July onward and don't have any preference on where we meet.
Gail, Mark, Brian and the others who have been in contact and anyone else who is interested and available, could you post or email me with dates/times and where you'd like to meet. I'll then try to sort out the most convenient time and place for everyone.

Look forward to seeing you all soon.
« Last Edit: June 12, 2015, 01:41:36 pm by georgeturner »
Slainte Mhath,
George

georgeturner

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Re: Scotland Support Group
« Reply #25 on: June 15, 2015, 11:33:41 am »
July Meeting

Gail is available to meet between the 13th and 24th of July except for the 15th and 22nd and is flexible as to where we meet.
If you would like to meet up, please post or email me with dates/time and where you would like to meet.

Slainte Mhath,
George

Mark McConway

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Re: Scotland Support Group
« Reply #26 on: June 15, 2015, 11:29:53 pm »
Hi George,

14th July looks free for me at the moment and any place in Glasgow would also be fine.

Mark

spudair

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Re: Scotland Support Group
« Reply #27 on: June 16, 2015, 10:47:12 pm »
Folks,

I am on day shift on 14th July, and on all other weekdays,but if anyone can at some point in the future meet on a weekend I will get to meet everyone eventually (Glasgow ok for me)
Met George in Glasgow last month and feel I have known him all my life.. Great guy

 Think I may have met Mark in London during my wife's diagnosis (5th May 2013)

georgeturner

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Re: Scotland Support Group
« Reply #28 on: June 19, 2015, 06:07:16 pm »
The next Glasgow Myeloma Support Group meeting is at the Maggie’s Centre, Gartnavel General Hospital, on Thursday 23 July 2015 at  6:30pm to 8:30pm. The meeting is open to anyone looking for support/information about all types of amyloidosis.
Details -
               http://www.myeloma.org.uk/wp-content/uploads/2013/08/Glasgow-Support-Group-poster-July-2015.pdf
Slainte Mhath,
George

georgeturner

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Re: Scotland Support Group
« Reply #29 on: July 03, 2015, 09:44:46 pm »
July Meeting

The plan is to have the July meeting on Thursday 23rd July at the Maggie's Centre, Gartnavel at 6:30. Gail, Brian and myself all plan to be there. Gail has suggested meeting up beforehand for something to eat. If anyone cares to join us let me know and we can arrange where and when.
Mark, if you can't make the 23rd both Gail and I can meet you on the 14th if you like.

If there is anyone else who is interested in meeting up, let me know by posting or e-mail.
Slainte Mhath,
George