Author Topic: Scotland Support Group  (Read 45802 times)

Miriam Vered

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Scotland Support Group
« on: March 19, 2015, 10:14:00 am »
George Turner has kindly agreed to organise a local support group in Scotland.
He'll contact people who've shown interest and post arrangement details here on the forum.

« Last Edit: March 19, 2015, 10:35:20 am by Miriam Vered »

georgeturner

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Re: Scotland Support Group
« Reply #1 on: March 19, 2015, 11:10:13 am »
I've been asked by Miriam to organise the Scotland Support Group. If you are interested, please let me know where and when you'd like to meet and I'll try and arrange a suitable time and place for a first meeting.

Gail and Mark, I see you have expressed some interest. Any suggestions?

Anyone else who is interested, please let me know.

If we can start this going, hopefully it will take off.

Thanks.
Slainte Mhath,
George

Mark McConway

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Re: Scotland Support Group
« Reply #2 on: March 20, 2015, 12:14:17 pm »
George,

I'm happy to meet up in Glasgow at some point during April.  Depending on numbers, a coffee somewhere might be enough to start the ball rolling.  If there are a few people then we might need a room somewhere.  Perhaps we might be able to get an hour in a room at The Golden Jubilee Hospital.  I could make a few enquiries if that seems like the route to go.

Miriam, without disclosing names, are you able to tell us how many patients of the NAC come from Scotland?  Also, do you have a rough idea of where the majority live (eg. Glasgow, Edinburgh etc)?
« Last Edit: March 20, 2015, 02:17:05 pm by Miriam Vered »

Miriam Vered

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Re: Scotland Support Group
« Reply #3 on: March 20, 2015, 02:19:32 pm »

Hi Mark,


Regarding your question about NAC patients from Scotland, I don't have the figures but I'll look into it.
The consultants have said that they would prefer to advertise the interest of forum members in setting up local support groups rather than us approaching patients directly.
I will write an article on this in the next newsletter and we will produce a one page flyer to be given out at the NAC.
So right now only forum members are aware of the support group idea and the only people from Scotland who have expressed an interest are you, George and Gail.
But I thought it would be a good idea to get the ball rolling. I hope that if people see that a core group exists, it will then grow gradually as awareness spreads.
I have no idea how long it will take.
Perhaps if the 3 of you decide to meet up and fix a date and place, we could then advertise these details in the flyer?


georgeturner

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Re: Scotland Support Group
« Reply #4 on: March 20, 2015, 06:02:24 pm »
As Miriam says, I think there are only 3 of us from Scotland who are interested at the moment. I'm sure there are others in Scotland who might be interested, but may well not be on the forum. I had been planning to meet with Gail prior to being asked to organise this group. We had met again in Glasgow after our first meeting on the MRI Cycle Challenge, and it is my turn to travel to meet with her. I'm still waiting to see when she'd like to meet.
Mark, I'm retired now so I'm pretty flexible about where and when to meet. I don't know how flexible you are - work, family, etc., but a first meeting in Glasgow in April would be fine for me. I suggest we leave it a bit longer and see if we get any more interest. Then we can decide a place and time to meet. I think we'll be OK just meeting somewhere for a coffee and talking over how we want to proceed.
Your suggestion of the Golden Jubilee sounds good, if you'd like to make some enquiries for the future that would be great.
Hopefully once we get it started it'll grow, and we might be able to meet with some medical staff.

Look forward to meeting you, and hopefully some others, in April.
Slainte Mhath,
George

georgeturner

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Re: Scotland Support Group
« Reply #5 on: March 26, 2015, 05:54:24 pm »
Hi Mark, Gail and anyone else who may be interested.

Maybe we can get this going by trying to fix a date and time in April to meet in Glasgow.

I'm going down to London on the 13th for an appointment at the NAC on the 14th. I won't be back in Glasgow till the 19th. Apart from that and weekly injections which should be flexible, I should be available to meet up any other time.
If you can let me know by post or e-mail when you are available, then we can fix a date/time suitable to everyone . Also if you have any thoughts on where to meet please let me know.

Slainte Mhath,
George

georgeturner

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Re: Scotland Support Group
« Reply #6 on: March 26, 2015, 09:59:36 pm »
Mark,

Gail has been in touch.
She is free from the 22nd of April till the end of April except the 27th. She would probably come by bus, or train if that suits you better, and we could meet one another at the bus/train station.
Let me know if any of these dates suit, which one you would prefer, and if you have any thoughts on where we could go to talk things through.
Slainte Mhath,
George

Mark McConway

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Re: Scotland Support Group
« Reply #7 on: March 29, 2015, 05:31:53 pm »
George,

I'm fine for either the 22nd or 23rd April.  I'll be driving through to Glasgow.  Where is Gail coming from? 

If we finalise on Glasgow as the venue, there are quite a few nice cafes at the Trongate end of town - or even around George Square.  Depending on where Gail is situated, I could maybe pick you up in Glasgow and drive to her neck of the woods.  Mark


dkjcmw

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Re: Scotland Support Group
« Reply #8 on: March 30, 2015, 08:48:39 am »
A Scotland support group is something I would be interested in but as we are at the very early stage of diagnosis it may be a awhile before we feel ready for this. We are based in moray..

georgeturner

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Re: Scotland Support Group
« Reply #9 on: March 30, 2015, 12:15:04 pm »
A Scotland support group is something I would be interested in but as we are at the very early stage of diagnosis it may be a awhile before we feel ready for this. We are based in moray..
Hello,

Sorry I don't know your name, but I have read your posts. I hope you get your appointment at the NAC very soon. I'm due down there on the 13th of April for an appointment on the 14th. If you happen to be there at that time please feel free to ask for me if you want. I know how worrying the waiting is and I hope the forum has helped a bit.

We are just trying to start up these local support groups so if and when you are ready, please let us know. At the moment there are only three of us and we live in the central belt. It's a fair bit away from Moray, but much closer than London, so you would be very welcome.

Meanwhile, thinking of you and your husband and family and wishing you all the very best.
Slainte Mhath,
George

georgeturner

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Re: Scotland Support Group
« Reply #10 on: March 30, 2015, 03:02:02 pm »
Mark,

Gail is coming from Kilmarnock. She has suggested I meet her at 12 o'clock on the 23rd April at Glasgow Central Station. How does that suit you? Let me know if that's OK, we can meet you there or at a nearby cafe.
Look forward to seeing you again.
Hope you are keeping well. 
Slainte Mhath,
George

Mark McConway

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Re: Scotland Support Group
« Reply #11 on: March 30, 2015, 11:09:56 pm »
That's fine George.  I have your email so I can get in touch again that way if you like.  I'll pencil the 23rd in and make sure I'm available.

I don't mind driving us to Kilmarnock if that helps Gail.

georgeturner

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Re: Scotland Support Group
« Reply #12 on: March 31, 2015, 01:14:04 pm »
Mark,
Gail is happy to  meet in Glasgow for our first meeting then if it is just the three of us we can meet in Kilmarnock for the next one. She has suggested the Lighthouse in Mitchell Street for lunch?
Feel free to e-mail me directly or through the forum.
If there are more people out there who want to, and are able to meet up with us, please post or e-mail me on the forum. We are all prepared to be flexible about locations for future meetings.
Slainte Mhath,
George

georgeturner

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Re: Scotland Support Group
« Reply #13 on: April 24, 2015, 11:58:38 am »
We had our first meeting on the 23rd April at the Lighthouse in Glasgow. There are only three of us at the moment - Gail, Mark and George - but if there are any others who are interested just post a reply or e-mail me through the forum and I'll get back to you. We're hoping to meet up again sometime in July.

The meeting was very informal, but it was good to meet with each other, have some lunch, and find out a bit more about how each of us is coping with amyloidosis. None of us had heard of amyloidosis when we were first diagnosed and it's very frightening and you can feel pretty isolated as there is nobody you can talk to about it while waiting for the NAC appointment (thankfully I was advised not to search the internet). We are all doing well at the moment and appreciate the care and attention of all the staff at the NAC.
Slainte Mhath,
George

spudair

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Re: Scotland Support Group
« Reply #14 on: May 03, 2015, 09:22:01 pm »
Folks let me introduce myself
My Name is Brian and AL Amyloidosis came into my family Unit (Sept 2012)
I am the husband of the patient (My wife Beth)
Our family consisted of My Wife,Myself,Our 10 year old daughter and a 2yr old foster daughter
While walking our daughter home from school pushing our foster daughter in her pram my wife noticed issues with her breathing trying to keep up with our daughter , she  followed this concern up with a doctors appointment.
The doctors ecg machine highlighted an issue and my wife went on the hospital waiting list
She bounced over the coming 5 months between cardiac,respiratory,cardiac,haematology departments and they had no clue what could be wrong with her (Ayr Hospital)
In February she put perfume on her neck and her skin reacted to this and this took her into hospital
After 3 weeks the bloods , and urine checks stated she may have amyloidosis
However the checks on her biopsy’s showed nothing and came back clear
Ayr were very slow to act and as my wife was a staff nurse in many Ayrshire & Glasgow hospitals she lost faith in the local hospital and arranged to have a check in two Glasgow hospitals
They provided the data that prepared me for what followed.. The system had taken so long
To diagnose her and she was had now reached stage 4 heart failure due to the amyloid damage in her heart. (she also had the trouble in the skin and intestines)
Unfortunately by the time my wife had a name for her condition we were on bumpy ground
We headed south to NAC and she met up with Julian Gilmour .
Over the two days in London we had amyloidosis confirmed and the treatment plan drawn up
The biopsy’s that were clear in Ayr were rechecked in London and found to contain Amyloid
However on returning to Scotland and starting treatment my wife’s heart  was so badly damaged that the chemo just pushed her over the edge and she passed away  on 10 Jun 2013 (age 52)
I miss my wife everyday but my duty now will be to change what was wrong on our journey and  help design a quicker diagnosis path and patient care plan for future patients.
I am currently in meetings with Ayr Hospital and I would like to think by the time i complete this journey the patient plan for amyloidosis patients will be well documented and if you can help me design the plan all the better.
I also informed the hospital whatever we put in place will also be passed through the nhs ombudsman so we can get their input and even relay this to all other hospitals.
I was trying to start my own Scottish support group someday and also collate all accurate world data on amyloid and build a Scottish website to hold the links but also work with Nac so the two sites could work together for the patient.
George,Gail & Mark I have been on the journey as the husband and appreciate that the above is not
Very nice reading for you but I loved my wife dearly and i wish to become involved and help the people that are still around with the trouble.
Beth  had a medical background and had never come across this  in her 35yrs as a nurse
She also worked at the golden jubilee in the cardiac unit and had never seen it so in the heart
It must be very rare.
I now need to get the knowledge of this trouble into the public eye with your help if you will have me on board.
I work within a University and some day I hope to have NAC (Julian Gilmour) at one of our NHS conferences to get the knowledge out there on this trouble.

I only discovered you existed the day you were all meeting up

If Miriam can help I felt bad luck came to our door and wanted
if possible the numbers/stats on female cardiac amyloid in my wifes agegroup (52)
in my head and thinking back to our NAC visit.. cardiac involvement  in female 52 year olds is very rare


hope to hear from you soon

Brian