Update on the Your Ears project!! We need your help if you live in the UK.
Posted , 11 users are following.
We need YOU…………….. to be one of 500.
RESEARCH PROJECT: ‘YOUR EARS’
May 2017 we asked you to take part in the above research: 'YOUR EARS'
April 2018: only 155 have taken part in this study and the target is 500.
we are 345 short of the target.
Preliminary findings show that there is a connection but the NHS cannot take it forward without your input.
I am appealing to all of you to help yourselves and people in the future who will develop GCA and PMR.
I know that only patients who live in the UK can take part……. it is down to us in the UK and it costs you nothing except your time.
Researchers all over the world are looking for cause, cure and better diagnostic procedures.
Will you help or am I asking too much?
The Research & Development section of Queen Elizabeth Hospital Gateshead NHS Foundation Trust is to continue research following the result of the basic survey which we did last year on ‘Your Ears’
In late May 2017 we met with Dr Kelly and Susan Pugmire. They advised us that the NHS would now undertake qualitative research. We had donated £1000 start-up costs. All future costs will now be paid by the NHS.
They need at the very least 500 people with GCA , GCA&PMR and PMR. It would be amazing if we could get more patients to participate.
YOU now need to contact the Queen Elizabeth Hospital Research and Development in one of the following ways:
E:mail: Susan.pugmire@nhs.net
Subject heading: Research: GCA&PMR.
Postal Address: Sister Sue Pugmire
Co-Investigator/Research Nurse
Queen Elizabeth Hospital
Rheumatology Unit/Jubilee Hospital
Gateshead
NE9 6SX
Plus your postal address.
Once your initial enquiry has been received research documentation will be sent to you and if via the postal service a prepaid envelope will be supplied for you to return the completed documentation.
Mavis R Smith
Chair
PMR&GCA uk North East Support
Charity Reg No: 1138409.
1 like, 20 replies
EileenH
Posted
Sorry about all the spacing ! I had edited it before posting - what a waste of time!
However - please, everyone in the UK who has not yet registered for this research project, please do so now. If you have friends with PMR or GCA, or at a support group for example, who don't use the forum, please ask them to join in too. It is so important that we get the numbers up for this project as it really does look promising.
It is for all of us, not just for GCA patients but also for PMR people too.
lodgerUK_NE EileenH
Posted
I would like to add that if anyone who took part in the first time around and did not get a response, it could be because the NHS net was 'hacked' and in the middle of it all we had to change the email address and it took a bit of time to sort it out.
If this time around, you do not get a response, send me a PM and I will take go into 'warrior' mode.
Thank you and Thanks PMRpro.
dmart7 EileenH
Posted
Thanks for this but I don't know what this is all about. Those of us like me who have developed PMR over the last year have never heard of the project and would understand the request if given more info, or a link to it. It doesn't help that "Your Ears" doesn't sound like an intuitive title, and without knowing more I am nonplussed what is meant by "Preliminary findings show that there is a connection...."
EileenH dmart7
Posted
mary19068 EileenH
Posted
Hi EileenH
'OUR EARS' are a connection to what? more details needed...what are our ears to do with PMR and GCA?
EileenH mary19068
Posted
EileenH
Posted
dmart and mary:
A couple of years ago it was noted at a support group meeting that a large proportion of patients with GCA attending also had hearing and balance problems. It has been mentioned in the past in the medical literature that ear problems may be associated with PMR and GCA but many doctors at all levels appear to be unaware of this and when patients complain of ear problems of any sort it is often discounted.
As a result of that, a very basic questionnaire was published on the forums, open to all at that point, to assess if more investigation was required. The results showed there was and for the last 9 months the invitation to participate in the next stage has been one of the pinned posts on the homepage of the PMRGCA forum on this site. Unfortunately this is only open to residents in the UK and I cannot find the original version as it has been updated. That is immaterial - you do not need to have participated in the original and have the contact details in this post.
You can find more information about the importance of ears in GCA/PMR in this copy of the PMRGCAUK northeast support charity Newsletter:
http://www.pmr-gca-northeast.org.uk/assets/pmr_resource_64.pdf
where a rheumatology consultant has written an article about the link between ears and GCA.
The original project was under the title "Your ears" and was on the home page until today when I was asked to post this. I didn't know it had been superceded.
I hope this is enough information for you to consider requesting the documentation if you live in the UK.
dmart7 EileenH
Posted
lodgerUK_NE EileenH
Posted
Janey64 EileenH
Posted
As I stopped Pred last November and officially do not have it, can I take part?
I saw a rheumy as I was in a lot of pain, and he said, as you are off Pred I can do imaging, so one MRI of hips and ultrasound of shoulders later, which showed bursitis, I had steroid injections and now have more movement no pain or stiffness.
I also had really low Vit d. Unfortunately consultant recommended a loading dose not a month in the Caribbean sunshine - most disappointed!
He said how can you brush your hair with such stiffness. Forget my hair, it’s my bra I can’t get out of in the evening!
lodgerUK_NE Janey64
Posted
Yes Janey you can there is a place on the research questionnaire for you to add your special details and also you can add a comment page. No problem at all.
I hope you were given at least enough Vit D (I had 40,000 units per day for two weeks, another blood test and another two weeks on 20,000 units per day. Since that episode, I have taken 1,000 units per day, maintenance dose, I buy them at Boots 90 days tablets at just over £5. Low Vit D causes aches and pains just like PMR and it is an exclusion test before you are diagnosed with PMR, but nobody seems to do it. So ask.
Janey64 lodgerUK_NE
Posted
Hi Losger
Thanks for the reply. I had a Vit D test before I started Pred - it was fine- and also an ultrasound of my shoulders - there was not bursitis.
My muscles started to feel wasted, and I found I felt better after I started the loading dose. I am now on 1,000 units a day. I need to have the blood test repeated in 6 months.
Interestingly my GP did not want me to have a Vit D test, or to see a rheumy. I found out it cost £208 at my local private hospital, don’t know what it costs for the NHS, which explains why GP not keen to pay for it.
EileenH Janey64
Posted
Your GP is ignorant, like a lot of his peers it seems. It costs £28 for you to order a private vit D test from the same lab that does NHS ones:
http://www.cityassays.org.uk/Vitamin%20D%20Blood%20Spot.html
https://betteryou.com/vitamin-d-testing-service
If the GP bought 10 they would be cheaper, even cheaper when bought in bulk.
Next your GP will be telling you it is too expensive to refer you for a cancer screening.
Janey64 EileenH
Posted
I feel like a new women!
lodgerUK_NE Janey64
Posted
At hour Hospital, around £21 for a full spectrum blood test and that includes Vit D, minerals etc.
If just for one test, price is lower, so if you just have Vit D around £15. However all trusts seem to have different prices. Next time ask your GP or Practice Manager how much and then if they seem reluctant, ask if the local Commissioning Group have set the prices.
If you had given him a copy of the guidelines - he should have changed his mind.