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JW77
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« on: June 04, 2014, 03:38:07 PM »

Anyone from here attending the National Kidney Federation conference in Blackpool in October this year.

The 2014 theme is 'Taking Control'

http://www.kidney.org.uk/about-us/conference/nkf-annual-patients-conference-2014/

Day attendance is just 50 pounds, and local Kidney Patients Associations often fund members to attend the event.

The full timetable is not yet finalised, but highlights include Celebrety Chef and transplantee Lawrence Keogh.
« Last Edit: June 05, 2014, 06:11:31 AM by JW77 » 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.

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kristina
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« Reply #1 on: June 05, 2014, 02:55:18 AM »

Thanks for this information, JW77.

Could you please elaborate, how the theme "take control" is meant ?

Do they talk about the possibilities to enable patients to take control what sort of dialysis they would prefer,
no matter what is suggested by the NHS ?
Or does it mean that ESRF patients could be enabled to  also chose their nephrologists/doctors/GP?
Or does it mean that kidney patients get easier access to their medical file and/or their personal choice of medical treatment?
I mention this because I have heard that for example NX Stage is allowed by NHS officials,
but some nephrologists don't seem to be overly keen on NX Stage and I wonder why ...

Do you know the agenda for this  NKA conference,and who are the speakers?
What does it cost to take part and when precisely does it take place?
Is it "only" accessible for NKA members ?
(I mention this because I am not a member of NKA ...not yet anyway....)

Thanks from Kristina.
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JW77
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« Reply #2 on: June 05, 2014, 06:15:31 AM »

See edited post.

The NKF is made up of local Kidney Patients Associations across the UK.
Any kidney patient can receive a copy of the NKF's magazine Kidney Life (see the NKF website)

Can't anser your questions about the itinerary as they're not finalised.

Question about NXstage is another thread all together:)

I'd be happy to share my views and experiences on that in a new thread:)
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
kristina
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« Reply #3 on: June 05, 2014, 08:03:39 AM »

Thank you JW77,
I shall try to find out more information as soon as they have become finalized
and I shall also start another post to find out about NXStage in the (NHS) UK.

Thanks 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 ...
JW77
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« Reply #4 on: June 06, 2014, 01:39:08 AM »

@kristina.

I'd wager the theme will be somewhat along the lines of patient self management and care, how to deal with issues when things go wrong. Thats just a guess. I might be wrong!

I've asked about it anyway:)

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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 #5 on: June 06, 2014, 02:05:29 AM »


Thanks for asking them about more information JW77, it is very much appreciated.

Kind regards 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 ...
JW77
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« Reply #6 on: June 06, 2014, 07:03:10 AM »

@kristina

Heres a rough outline, without the names of the guests etc. As you can imagine it takes a LOT of organising by the NKF to organise an annual patient conference which hosts up to 400 people each year:)

NKF Patient Conference - Hope you have now seen this advertised in Kidney Life magazine. We hope you can all make it this year especially as we will have celebrity chef and kidney patient, Lawrence Keogh doing a cooking demonstration for us. The Theme is taking control and it will be in the Blackpool Hilton on the 10-12th October 2014. The Blackpool Hilton is situated right on the seafront near the Blackpool Tower, arcade and restaurant's/ pubs. The illuminations will also be on.

Prices per person per night ;-
Fri night single £80 / double £45
Sat 24hr single £130 / double £110
Day Delegate £50 pp
Gala Dinner £27

Friday - Optional Chairman's meeting with an update on Kidney Research and a quiz later in the bar. Other than that the evening is free for you to explore Blackpool.

Sat - Conference and Gala Dinner with entertainment and DJ

The 24hr rate includes the Saturday conference, lunch, coffee/tea, gala dinner with comedian and DJ, overnight stay, breakfast on the Sunday and the new ' open forum question time.
Saturday's conference will have professional and patient speakers covering PD through to Transplants, a debate and Lawrence's Keogh's cooking demonstration.

Sunday morning following the council meeting will be an open forum question time with the speakers from Saturday.

We hope to see you all there, you can book online at the link below

http://www.lawrencekeogh.com
http://booking.kidney.org.uk/

If you want to learn about the sort of format the conference runs, you can listen to last years presentations via the NKF website:
http://www.kidney.org.uk/about-us/conference/nkf-conference-2013/


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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
Zach
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« Reply #7 on: June 06, 2014, 08:30:48 AM »


If you want to learn about the sort of format the conference runs, you can listen to last years presentations via the NKF website:
http://www.kidney.org.uk/about-us/conference/nkf-conference-2013/


I found the audio podcast of the "1st Afternoon Session-The Big Debate, Home Dialysis" to be very interesting.
I recommend it to all.

 8)
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
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JW77
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« Reply #8 on: June 08, 2014, 01:36:56 PM »

Might have to have a listen myself:)

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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
JW77
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« Reply #9 on: June 11, 2014, 08:32:44 AM »

Rough outline (as patient and professional speakers can sometimes cancel)
But they will include, a TV celebrety chef (and transplantee)
A surgeon, a patient speaker transplantee.
A debate with 2 transport providers (patient transport is a pretty vital issue AND problem for some)
Also a parent of a kidney patient, and another speaker on transplantation:)

Generally a good mix and a chance to meet, great and enjoy the Blackpool Illuminations.

I'll be booking as soon as I get confirmation of funding from my KPA:)

Info WILL be on the NKF website as its updated:)

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..
https://www.facebook.com/kites4kidneys
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