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Research 'YOUR EARS' Part II Next Step for YOU to take.

 
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mrsK



Joined: 03 Jun 2016
Posts: 409
Location: Gateshead

PostPosted: Mon Jul 17, 2017 11:56 am    Post subject: Research 'YOUR EARS' Part II Next Step for YOU to take.  Reply with quote

The Research & Development section of Queen Elizabeth Hospital Gateshead NHS Foundation Trust will now undertake qualitative research following the result of the basic survey which we did last year on ‘Your Ears’. We donated £1000 start-up costs. All future costs will now be paid by the NHS.

They need at the very least 300 people with GCA, 300 with GCA&PMR and 300 with PMR.  It would be extremely useful if more patients participate. Increase in numbers make it more viable.

YOU now need to contact the Queen Elizabeth Hospital Research and Development in one of the following ways with your name and address.

Subject heading:  Research: GCA&PMR.

E:mail: Susan.pugmire@ghnt.nhs.uk

Postal Address: Sister Sue Pugmire
                          Co-Investigator/Research Nurse
                          Queen Elizabeth Hospital
                          Rheumatology Unit/Jubilee Hospital
                          Gateshead   NE9 6SX

Once your initial enquiry has been received research documentation will be sent to you via the internet or post.  The postal reply will include a prepaid envelope for you to return the completed documentation.

We are also be placing this information on our own forum: http://pmrandgca.myfunforum.org https://patient.info/forums/discu...e/polymyalgia-rheumatica-and-gca,   https://healthunlocked.com/pmrgcauk

The first part of a long journey showed that further research was essential and whilst we will be kept in the loop the hard work will now be done by our NHS.  This sort of research is not undertaken by Pharmaceutical Companies. Without the NHS this research would not be undertaken.
The NHS works in a quiet sort of way and the important contribution it makes to research and development is often overlooked or not just known.  Please do not put this aside thinking ‘I will do it later’, we need you to do it now – so block and copy and help with this research.

A more detailed explanation can be found in the Summer Issue of ‘You are Not Alone’ which is on the website click ‘All Newsletters’ on Home Page. Now it has been handed over this is the final part that PMR&GCAuk North East Support have to play. We will be given progress reports.  If you have questions you can send us an email.  

Mavis Smith
Chair
PMR&GCAuk North East Support
Charity Reg No 1138409.

website: www.pmr-gca-northeast.org.uk
E:mail pmrgcafightersne@g.mail.com

PS: Now you know why I have been a bit busy.

PPS: Newsletter will be on website later this week, after distribution to members by post. It is a more detailed explanation and Password on Back Page.
_________________
GCA  Feb 2007  60mg pred
        JANUARY 2012  ZERO PRED.
        November 2011 REMISSION  

Club Zero Member

It's Not What You Gather, But What You Scatter That Tells What Kind of Life You Have Lived, Let's scatter a little good.
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mrsK



Joined: 03 Jun 2016
Posts: 409
Location: Gateshead

PostPosted: Tue Jul 18, 2017 4:18 pm    Post subject: Reply with quote

Has anyone done this yet?

Mavis.
_________________
GCA  Feb 2007  60mg pred
        JANUARY 2012  ZERO PRED.
        November 2011 REMISSION  

Club Zero Member

It's Not What You Gather, But What You Scatter That Tells What Kind of Life You Have Lived, Let's scatter a little good.
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MrsE



Joined: 31 May 2016
Posts: 685
Location: Italy

PostPosted: Tue Jul 18, 2017 7:15 pm    Post subject: Reply with quote

I'm waiting to hear if furriners are acceptable...
_________________
PMR since autumn 2004, pred since summer 2009. Started on 15mg, lots of problems - but 5mg Jan 2014 - Jan 2016 and another flare!
"Maybe I can't stop the downpour, but I will always, always join you for a walk in the rain."
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BettyE



Joined: 03 Jun 2016
Posts: 420
Location: Norfolk England

PostPosted: Tue Jul 18, 2017 7:30 pm    Post subject: Reply with quote

I'm assuming that only current patients are any use?
_________________
PMR 1999  30mgs to nil 3 yrs  few problems. Clear 5 yrs, ret Feb 2008.  On 15 mgs. more difficult ride. Muscle weakness, more pain, yo-yo dosing, depression.  1 mg. (May 2013 )

Hip replacement 23.5.2013 Zero pred. 28.10.2013.
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mrsK



Joined: 03 Jun 2016
Posts: 409
Location: Gateshead

PostPosted: Tue Jul 18, 2017 8:56 pm    Post subject: Reply with quote

Eileen

Use Whitby address or tell  them on the form you belong to us and who you are..........ie OMERACT etc..............


BettyE   = past and present needed..............it is important for comparison purposes............so I am given to understand.


Even I have to apply and have not even seen the documentation yet.  

Remember, I had GCA for 5 years and now coming up to end of 6th into remissionI lost 25% of my hearing and did not even realise why and neither did my Consultant all those years ago.   even ask me the question.  So I lost it all...........too late.

When you get your newsletter  (posted today) you will read the Consultant's story.......................... The article is headed  'Serendipity'
He loved the title I gave it.
_________________
GCA  Feb 2007  60mg pred
        JANUARY 2012  ZERO PRED.
        November 2011 REMISSION  

Club Zero Member

It's Not What You Gather, But What You Scatter That Tells What Kind of Life You Have Lived, Let's scatter a little good.
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Mrs G



Joined: 03 Jun 2016
Posts: 215
Location: New Forest

PostPosted: Wed Jul 19, 2017 9:00 am    Post subject: Reply with quote

Thought it would only be current patients I must admit it does fade a bit when you get further into remission but I will contact them and see if they want me !

Rosemary
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PMR Ist bout Oct 2002 age 54 20mg clear in 2 years then 4 years free but returned Oct 2008 age 60 Started on 20mg again A rollercoaster Reduced slowly in remission March 2013 Club Zero
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mrsK



Joined: 03 Jun 2016
Posts: 409
Location: Gateshead

PostPosted: Wed Jul 19, 2017 9:04 am    Post subject: Reply with quote

Rosemary

They want everyone they can get............it widens knowledge.

Remember Oak trees grow from little acorns.   Very Happy

cat
_________________
GCA  Feb 2007  60mg pred
        JANUARY 2012  ZERO PRED.
        November 2011 REMISSION  

Club Zero Member

It's Not What You Gather, But What You Scatter That Tells What Kind of Life You Have Lived, Let's scatter a little good.
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Mrs G



Joined: 03 Jun 2016
Posts: 215
Location: New Forest

PostPosted: Wed Jul 19, 2017 9:10 am    Post subject: Reply with quote

Done !

Rosemary


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PMR Ist bout Oct 2002 age 54 20mg clear in 2 years then 4 years free but returned Oct 2008 age 60 Started on 20mg again A rollercoaster Reduced slowly in remission March 2013 Club Zero
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