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Author Topic: Call to Action via NKF re proposed Commisioning. Act Now  (Read 5869 times)
JW77
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« on: November 25, 2014, 11:05:19 AM »
Please take a look at the update from the NKF:

http://www.kidney.org.uk/home/news-2/dialysis-commissioning-full-briefing-and-urgent-call-to-action/



Do.. Fill in the NKF questionnaire.

DO write to, contact or email your MP, ASAP.

http://www.parliament.uk/get-involved/contact-your-mp/contacting-your-mp/






EDITED: Moved to advocacy area threads- kitkatz,Admin
« Last Edit: January 29, 2015, 03:30:04 PM by kitkatz » Logged
Creator of London Kidney Social: https://www.facebook.com/groups/LondonKidneySocial/

Medical stuff, includes 3 kidneys, cancer, meningitis, 1 heart attack and its long and not that interesting! Maybe one day I'll write a book.! `

I have an eclectic taste in music, I fly kites, I read, write, tog, blog and have a bit of a passion for multicellular eukaryotes, and kites.

Founder of Kites4Kidneys - Start making your kites for WKD 2015..
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iolaire
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« Reply #1 on: November 25, 2014, 11:35:04 AM »
Quote from: JW77 on November 25, 2014, 11:05:19 AM
Please take a look at the update from the NKF:

http://www.kidney.org.uk/home/news-2/dialysis-commissioning-full-briefing-and-urgent-call-to-action/



Do.. Fill in the NKF questionnaire.

DO write to, contact or email your MP, ASAP.

http://www.parliament.uk/get-involved/contact-your-mp/contacting-your-mp/

Assuming MPs have offices in their home districts I suggest that for something that you seriously care about (like dialysis) you visit your MP's office personally.  In person you have the opportunity to make sure someone in the MP's office understands how serious change is for you and your fears.  Its easy to just send and email or a letter but at that point your activity is a minor statistic.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
kristina
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« Reply #2 on: November 25, 2014, 01:56:40 PM »
Quote from: JW77 on November 25, 2014, 11:05:19 AM
Please take a look at the update from the NKF:

http://www.kidney.org.uk/home/news-2/dialysis-commissioning-full-briefing-and-urgent-call-to-action/



Do.. Fill in the NKF questionnaire.

DO write to, contact or email your MP, ASAP.

http://www.parliament.uk/get-involved/contact-your-mp/contacting-your-mp/

Would it not be more efficient, if a group of ESRF-patients would meet outside Parliament,
voice their concerns and hand out prepared leaflets to MP's ?
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
JW77
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« Reply #3 on: November 26, 2014, 06:25:34 AM »
YES..  people are working on a peaceful protest as well:)  Personally I'm all for that. Its the only way to get a message out via the media...
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Creator of London Kidney Social: https://www.facebook.com/groups/LondonKidneySocial/

Medical stuff, includes 3 kidneys, cancer, meningitis, 1 heart attack and its long and not that interesting! Maybe one day I'll write a book.! `

I have an eclectic taste in music, I fly kites, I read, write, tog, blog and have a bit of a passion for multicellular eukaryotes, and kites.

Founder of Kites4Kidneys - Start making your kites for WKD 2015..
https://www.facebook.com/kites4kidneys
kristina
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« Reply #4 on: November 26, 2014, 12:38:50 PM »


When and where ?
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
JW77
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« Reply #5 on: December 07, 2014, 05:45:12 PM »
I'll keep you posted..

https://www.facebook.com/groups/DXCampaigners/

Is probably the place to keep up to date.

J
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Creator of London Kidney Social: https://www.facebook.com/groups/LondonKidneySocial/

Medical stuff, includes 3 kidneys, cancer, meningitis, 1 heart attack and its long and not that interesting! Maybe one day I'll write a book.! `

I have an eclectic taste in music, I fly kites, I read, write, tog, blog and have a bit of a passion for multicellular eukaryotes, and kites.

Founder of Kites4Kidneys - Start making your kites for WKD 2015..
https://www.facebook.com/kites4kidneys
cassandra
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When all else fails run in circles, shout loudly
« Reply #6 on: December 13, 2014, 09:04:30 AM »
Please could you update here too? For those who don't do FB?

Thanx already, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
JW77
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« Reply #7 on: January 29, 2015, 02:21:08 AM »
Up date from the NKF Press release.

Apart from the rather unfortunate wording in the title, its a temporary success for all those involved.

http://kidney.org.uk/assets/Uploads/PRESS-RELEASE-Commissioning-Victory.pdf

I would not say I was 'Frighted and sick and distressed' by the whole thing, 'rather angry, furious and ready to fight' :)

It's a bad move for the NKF to play the pity theme in the press release, but hopefully they won't do it again.

So, we've won, for now...:)
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Creator of London Kidney Social: https://www.facebook.com/groups/LondonKidneySocial/

Medical stuff, includes 3 kidneys, cancer, meningitis, 1 heart attack and its long and not that interesting! Maybe one day I'll write a book.! `

I have an eclectic taste in music, I fly kites, I read, write, tog, blog and have a bit of a passion for multicellular eukaryotes, and kites.

Founder of Kites4Kidneys - Start making your kites for WKD 2015..
https://www.facebook.com/kites4kidneys
kristina
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« Reply #8 on: January 29, 2015, 07:28:31 AM »
Thank you JW77 for informing us about the very good news.
I am so glad that we have won ... for now...
Let's hope "they" won't include us in future-NHS-upheavals ...
Thanks again from Kristina.
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
okarol
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« Reply #9 on: January 29, 2015, 02:30:51 PM »
Mods: This is kidney related and should not be in off-topic.   :thx;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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