I have been requested to start a new thread. Therefore the first sentence does not apply. The thread was on this link:
healthunlocked.com/pmrgcauk...
This reply is not directed at MhairiP, but at the thread as a whole.
I did pick up the first post on this thread, but due to some illness, I have been unable to respond to it until now. I apologise for the delay in responding.
Once again, I am replying to all the comments made on this thread.
Firstly let me explain that I picked it up immediately and then made some enquiries.
As there are only two people involved in this survey - and working in the NHS, I thought I would explain in more detail how it is being done.
The NHS is doing this survey which was instigated by a Consultant Rheumatologist, Dr C Kelly. Dr Kelly now is only doing part-time with the NHS. He is retired and continuing his valuable work in other countries that need assistance. He has done voluntary work for many years.
The basic information was gathered by PMR&GCAuk North East Support, this was done by two volunteers (both in the 70's) and then collated and the analysis done by two people who had the skills - again volunteers who also have jobs and did this in their spare time. The result of was that it looked like there was a problem.
PMR&GCAuk NES, a tiny charity, said they could find £1,000 to assist in this being taken further.
NIHR England then agreed to take the study forward. However, as we all know, funds are limited. Only the NHS undertakes this type of research as there is no financial outcome at the end. Just knowledge.
So, one person was allocated to do the research 2 days per week, the rest of the the working week is doing work as a specialist rheumatology nurse.
I sent the link to this thread so they could read it and try and answer the complaints.
The salient points are as follows:
We have worked and are still working very hard for this study and replied to all who have asked to join the study. We are up to around 400 at present so most of the applicants must be getting the paper work and returning it with no problems.
We have a lot of PMR at present and NEED MORE GCA and PMR with GCA to balance the study.
We have just started to tell PMR patients that we will get in touch with them at a later date if we need more PMR patients before the end of the study which will be in December this year.
We suppose out of 400 there will be participants that have struggled with the questionnaire, it is and must be protected so people cannot change anything on the form.
We are aware that some computers are not compatible with the form, those people have been happy to send me their postal address to enable us to send paper work.
The ones with emails bouncing back we are not sure what that is about as we have an nhs.net account. Some do go into the junk mail but to date we have picked them up.
We do write a small message asking them to return questionnaire, and we are very busy and it can take time.
We understand where they are coming from but it does say ‘thank you’ in the paper work for taking part in the study.
End.
So, yes there have been difficulties as there often are in life. In a perfect world and with unlimited resources, those difficulties would be dealt with speedily.
I can assure you all, that after taking part in another research project run by 'big pharma' with lots of financial gain at the end, that money was thrown at us, including first class travel, insurance, five star hotels etc.
Yes hopefully the outcome will be a better understanding and probably an alteration in diagnosis and, most importantly raising awareness that problem do occur with ears etc............all this good for the endgame, which is cause and once that is crackcd cure. It won't be in my lifetime, but it will happen.
So those of you who live in the UK, and have GCA only or GCA&PMR, you are still needed.
The email address is: susan.pugmire@nhs.net.
Postal Address:
Subject heading: Research: GCA&PMR.
E:mail: susan.pugmire@nhs.net
Postal Address: Sister Sue Pugmire
Co-Investigator/Research Nurse
Queen Elizabeth Hospital
Rheumatology Unit/Jubilee Hospital
Gateshead NE9 6SX
Some of you will recall, that the NHS internet system was hacked and all the email addresses had to be changed. That meant the first email address posted was changed and we tried to ensure that all our publications were covered with the new email address.
If we missed anyone, I apologise.
Finally, I find Libre Office (a free download) allows you to open and read most documents you receive.
Looks like I need to watch what I say
GCA some interesting info in large Swedish study
A little moan about the research project!
