Diabetes Research Networks in the UK

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Copepod

Much missed Moderator
Relationship to Diabetes
Type 1
Worth mentioning about the Diabetes Research Network, which serves England - see http://www.ukdrn.org/
For Scotland, see Scottish Diabetes Research Network http://www.sdrn.org.uk/
For Wales, see Clinical Research Collaboration Cymru http://www.cf.ac.uk/medic/subsites/drnwales/
For Northern Ireland, see Northern Ireland Clinical Research Network http://www.nicrn.hscni.net/
In general, there are opportunities to take part in trials, public patient involvement etc. Websites offer lots of information, so please look round them. Most networks allow you to register your interest(s) online.
 
I registered with Diabetes Research Network through their website some time ago but heard absolutely nothing back! Not even an acknowledgement!

Same goes for Diabetes UK too - I sent my story to them again via the Your Stories page on their website but heard nothing whatsoever back. Again not even an acknowledgement!

I'm not certain that any of them deserve our support. I'm coming to the conclusion that they are only interested in raising funds to pay their own wages, fund a lifestyle and keep themselves in jobs. I might be doing them an injustice but I've cancelled my standing order to Diabetes UK after having paid for nine years.
 
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I do understand how you feel John, sometimes I feel as though all I am is an interested party that can be tapped for extra funding. I can't speak about the research thingy as I haven't tried it yet, but not getting an acknowledgement is poor practice - even if they don't need you for any projects, they could at least offer some thanks for putting yourself forward. Actually, I would have thought that your experiences would be very valuable, given the way you have successfully adapted your diet to produce significantly improved levels.

People's experiences with DUK also seems patchy - some excellent work is done, it seems, in some areas like the holidays etc. but they could really do with reinforcing their 'grassroots' support - again, some acknowledgement at the very least, better organisation of their website, a stronger 'push' for local support groups etc.

I'm going to read up on the research thing and might register - will let you know if they respond, if not, I'll ask why!😉
 
I think it is also worth contacting the suppliers direct - I am just about to tart testing a new blood testing pump that doesn't require test strips for Roche - but this was through my DSN!
 
I think it is also worth contacting the suppliers direct - I am just about to tart testing a new blood testing pump that doesn't require test strips for Roche - but this was through my DSN!

Hmmm what sort of 'tart' Admin?

Hopefully not sweet ones, they will really make you consume that insulin 😉 and as for the fat in the pastry, you've been warned 😛
 
Well, some time after registering with DRN, I was invited to a PPI (Public & Patient Involvement) conference, at which people with diabetes were asked to suggest areas for research - I suggested researching the effects of new technologies such as internet, message boards etc. DRN paid travel expenses, provided food etc.
I guess response depends what you sign up for - asking for email newsletters is a good idea. DRN is not a fundraising body, so it's wrong to assume any similarity with Diabetes UK. If you haven't had an acknowledgement, worth using "Contact Us" email to ask why not?
 
.............If you haven't had an acknowledgement, worth using "Contact Us" email to ask why not?.........
Hi Copepod - Yes maybe!

However, I'm not certain that I'm that keen to start chasing after organisations that do not have systems in place to at least send out formal acknowledgements - if only as a matter of courtesy - to people that offer their services free of charge. Personally, I consider that I have better things to do with what time I have left in this life.

By the way, I ticked all the boxes "signing up" to help in any way that I could. I certainly didn't just sign up for email newsletters. In any case, I haven't received an email newsletter either.

As regards whether or not Diabetes Research Network is a fund-raising body, I'm fairly certain that if we looked at it closely we would find that they will be receiving very large funding from somewhere even if they aren't receiving it directly from us diabetics as Diabetes UK do.

These days, I keep driving away from high-powered diabetes-related meetings at the local hospital and trying to work out in my mind why the healthcare professionals that I meet seem to have so many problems. Most often, they blame these problems on the managers of the local Primary Care Trust. They say that these managers almost totally ignore diabetes dilemmas that are ongoing in the hospital. Moreover, the same PCT managers continually fail to attend meetings that they are supposed to be present at. Moreover, they treat requests to attend these meetings with healthcare professionals seemingly with total disdain.

Most of the time, I come to the conclusion that these healthcare professionals and managers aren't really that bothered about solving the growing problems of diabetes. I consider that they are more interested in maintaining their own employment status and building empires to enhance their status - and of course making this year's healthcare budget stretch as far as they can simply to get them to the financial year end.

What happens to diabetics in the longer term doesn't really come into the equation because a lot of these people aren't likely to be in the same job next year or the year after. Usually, they will have moved on - usually through promotion to an even better-paid job. Certainly, I wouldn't expect to learn that any of them have been given the sack. The problem then becomes someone else's and will become next year's budget for the beancounters to mismanage.

It really is a major dilemma!

Best wishes - John
 
http://www.ukdrn.org/about_us.html "The DRN is a network of primary and secondary care centres throughout the UK supported by the Department of Health for the purpose of conducting high quality clinical research in both the commercial and academic sectors. " So, all tax and NI payers contribute to DoH, which supports DRN; no other supporters of DRN are mentioned.
As a researcher on less than the the average graduate starting salary doing a job that does require a degree, 4 months into an 11 month contract that may or may not be extended, I'm sure that not all researchers are well paid, nor securely employed.
I'd suggest searching for MRC (Medical Research Council) funded research, which includes a considerable amount spent on diabetes research, both prevention and treatment. MRC, like other research councils, is government funded, and aims to support excellent quality research which will benefit the country and citizens. see http://www.rcuk.ac.uk/links/mrc.htm
 
I registered with Diabetes Research Network through their website some time ago but heard absolutely nothing back! Not even an acknowledgement!

Same goes for Diabetes UK too - I sent my story to them again via the Your Stories page on their website but heard nothing whatsoever back. Again not even an acknowledgement!

I'm not certain that any of them deserve our support. I'm coming to the conclusion that they are only interested in raising funds to pay their own wages, fund a lifestyle and keep themselves in jobs. I might be doing them an injustice but I've cancelled my standing order to Diabetes UK after having paid for nine years.
Still never heard anything back from Diabetes Research Network many months later - maybe eight or nine. Pathetic!

I've just sent them an "I'm unimpressed" message.

I'd be interested to know whether anyone else had this sort of experience with the organisation in question?

John
 
Very frustrating...particularly as the DRN was mentioned at the recent User Rep Day as a good thing to access.
 
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