DM PAD Trial

[AndBreathe]

This came up on Facebook, posted by Diabetes UK. It is the study I participated in, on Friday of last week. I'm Facebook hopelss, so unable to post the link from there, so have the link directly to the study.

DM PAD Trial | Faculty of Medicine | Imperial College London

www.imperial.ac.uk

It was very interesting, with a bit of an MOT blood flow in my lower legs. I will be returning within 6 weeks for an MRI for the second part of the study.

It is an extremely non-invasive study, open to all types of diabetes. If any of you are able to have a go, I would encourage you to do so.
If we don't help the curious people learn new "stuff", we'll never move closer to really understanding the full mechanisms of diabetes.

 

[everydayupsanddowns]

Greatvto hear you took part @AndBreathe

So important for researchers to be able to find volunteers for research projects 🙂

 

[AndBreathe]

Greatvto hear you took part @AndBreathe

So important for researchers to be able to find volunteers for research projects 🙂

It's only the second I have qualified for. Usually researchers are looking for folks on certain meds or with specific complications, which thus far I have avoided.

During that appointment, I had my second ever filament and pulse tests. Apparently, I wasn't alone in that regard. Shame.

 

[everydayupsanddowns]

It's only the second I have qualified for. Usually researchers are looking for folks on certain meds or with specific complications, which thus far I have avoided.

I registered for a research database (a decade ago) where researchers could discover people who met their criteria.

Never heard a peep!

I did get involved in a couple of trials in my first years of diagnosis, but those were organised at the hospital I attended - so I guess I was easier to find?

During that appointment, I had my second ever filament and pulse tests. Apparently, I wasn't alone in that regard. Shame.

I've had a few over the years, but often have to say something like ‘are you going to check pulses and sensitivity’?

I get the impression HCPs think people won’t want to do it!

 

[AndBreathe]

I registered for a research database (a decade ago) where researchers could discover people who met their criteria.

Never heard a peep!

I did get involved in a couple of trials in my first years of diagnosis, but those were organised at the hospital I attended - so I guess I was easier to find?



I've had a few over the years, but often have to say something like ‘are you going to check pulses and sensitivity’?

I get the impression HCPs think people won’t want to do it!

I guess I'm fortunate to be located close to an NIHR and have become involved there in a number of ways, from focus groups, to PPI involvement to study Steering Boards. There is some fascinating stuff going on out there.

 

[Sarahp]

This came up on Facebook, posted by Diabetes UK. It is the study I participated in, on Friday of last week. I'm Facebook hopelss, so unable to post the link from there, so have the link directly to the study.

DM PAD Trial | Faculty of Medicine | Imperial College London

www.imperial.ac.uk

It was very interesting, with a bit of an MOT blood flow in my lower legs. I will be returning within 6 weeks for an MRI for the second part of the study.

It is an extremely non-invasive study, open to all types of diabetes. If any of you are able to have a go, I would encourage you to do so.
If we don't help the curious people learn new "stuff", we'll never move closer to really understanding the full mechanisms of diabetes.

I took part in the new screen tool trial, it’s amazing progress plus you get reassurance on how your looking after your legs when you volunteer to help a very worthy cause.

 

[Sarahp]

I registered for a research database (a decade ago) where researchers could discover people who met their criteria.

Never heard a peep!

I did get involved in a couple of trials in my first years of diagnosis, but those were organised at the hospital I attended - so I guess I was easier to find?



I've had a few over the years, but often have to say something like ‘are you going to check pulses and sensitivity’?

I get the impression HCPs think people won’t want to do it!

The database is supposed to not be working fully, I am training as a NHS volunteer for research here in southwest and apparently there’s a new super version going to be rolled out that works better, not sure of date yet but can let everyone know when it goes live?
There’s a general feeling near me that if a local hospital isn’t promoting studies they get little interest or only get interest from those at generic risk not living volunteers which is what the need for the PAD study. In nine months I was the only person to volunteer!

 

[helli]

I have just completed a 12 month trial for what turned out to be the Moderna Spikevax. It gave me an extra jab when the covid rates were rising,
A few years ago, I was on a 12 month trial for a new ultra fast insulin from NovoNordisk. I believe it became Fiasp. This gave me extra diabetes care about 4 years after I was diagnosed.
Both trials I responded to requests for candidates. I have been on a couple of databases but never received any call up from them.

 

[trophywench]

I'd like to take part since nobody except me has the slightest interest in how well mine isn't doing, nobody ever 'reviews' it or even asks me about it, whatsoever. I used to see a nurse at the local hospital every year, but that stopped after a year or two.

There's nowhere/no link to volunteer so no idea whatever whether anywhere (Hospital) else in the UK is participating.

 

[Sarahp]

I'd like to take part since nobody except me has the slightest interest in how well mine isn't doing, nobody ever 'reviews' it or even asks me about it, whatsoever. I used to see a nurse at the local hospital every year, but that stopped after a year or two.

There's nowhere/no link to volunteer so no idea whatever whether anywhere (Hospital) else in the UK is participating.

Hi Jenny, will find a link now, it’s happening all round the country, back in a few mins!

 

[Sarahp]

I applied through this link https://bepartofresearch.nihr.ac.uk...y=Peripheral arterial disease (PAD)&location= you find the hospital/location closest to you and click the link, under contact details you will find a email address and some had phone numbers and make contact saying your interested in taking part, they then come back to see if your suitable, I have leg wounds so that’s why I was suitable. If you have any questions do say, happy to try and explain, they were really nice to me and explained everything they were doing and was more relaxed than a typical clinic appointment, my follow up is next December and I got a written update on my risk areas afterwards

 

[Sarahp]

I'd like to take part since nobody except me has the slightest interest in how well mine isn't doing, nobody ever 'reviews' it or even asks me about it, whatsoever. I used to see a nurse at the local hospital every year, but that stopped after a year or two.

There's nowhere/no link to volunteer so no idea whatever whether anywhere (Hospital) else in the UK is participating.

Just read the links again, the bottom one is one I took part in hope this direct link works https://bepartofresearch.nihr.ac.uk/trial-details/trial-detail?trialId=8472&location=&distance=

 

[AndBreathe]

I'd like to take part since nobody except me has the slightest interest in how well mine isn't doing, nobody ever 'reviews' it or even asks me about it, whatsoever. I used to see a nurse at the local hospital every year, but that stopped after a year or two.

There's nowhere/no link to volunteer so no idea whatever whether anywhere (Hospital) else in the UK is participating.

I have details too.

If you have a prior diagnosis of any PAD, I understand this rules you out.

However, as I say, I have contact details for the work being done in Leicester, at the Glenfield Hospital (which is part of the nation programme.)

 

[trophywench]

Ah - I've got PAD in legs. (The one trial said Leicester Royal were taking part, not Glenfield but I know they look after different bits of you at the two, not sure what where though as never lived in Leics) Don't understand what is meant by PAD being present on imaging. Er, what imaging? Do they sometimes have to do X rays/scans, if they think it might not only be in your legs?

 

[Eddy Edson]

Ah - I've got PAD in legs. (The one trial said Leicester Royal were taking part, not Glenfield but I know they look after different bits of you at the two, not sure what where though as never lived in Leics) Don't understand what is meant by PAD being present on imaging. Er, what imaging? Do they sometimes have to do X rays/scans, if they think it might not only be in your legs?

Ultrasound can be dodgy - results are very operator dependent & it's really just not that accurate esp if calcification is advanced. CT angiogram is much better but at least where I am usually not done unless a procedure is being considered.

I got one done a couple of years after DX when my walking distance overnight went from "lots" to "little", and it was a real eye-opener. Imaged, the femoral artery in my bad leg looks like a dried up river bed in 3D from groin to knee - completely blocked and just completely hopelessly f'ed. But the leg also has a huge network of collaterals snaking all over the place. My vascular surgeon called it "wonderful" and said he'd never seen anything like it tho maybe he says that to all the PADies.

My two prior ultrasounds on the other hand said (a) "5cm blockage just above knee and a few collaterals" and (b) "dunno blockage, looks like some collaterals". This has been an eye-opener for me re ultrasound accuracy ...

 

[Sarahp]

Ah - I've got PAD in legs. (The one trial said Leicester Royal were taking part, not Glenfield but I know they look after different bits of you at the two, not sure what where though as never lived in Leics) Don't understand what is meant by PAD being present on imaging. Er, what imaging? Do they sometimes have to do X rays/scans, if they think it might not only be in your legs?

Did you have a MRI or Ct scan at any point? As part of the trial I had a Ct angiogram to check and compare with the new Doppler device they are testing.

 

[Sarahp]

I have details too.

If you have a prior diagnosis of any PAD, I understand this rules you out.

However, as I say, I have contact details for the work being done in Leicester, at the Glenfield Hospital (which is part of the nation programme.)

It’s amazing progress, looks like imperial are coordinating for the country, I had my tests done in Plymouth and was their only interested candidate despite us having a dedicated diabetes centre here.

 

[trophywench]

My GP compared my pulses in my ankle and groin and the hospital repeated that and then moaned like hell at me when they wouldn't allow me on their treadmill since I had bare feet when I took my shoes off. I've never been a treadmill ever before or since. No other tests. Prescribed me Clopidogrel which gave me raging heartburn, GP said nothing he could do about that, other than give me extra tablets and I strongly object to having to take a drug because of the side effects of another, so I stopped taking it.

 

[Eddy Edson]

My GP compared my pulses in my ankle and groin and the hospital repeated that and then moaned like hell at me when they wouldn't allow me on their treadmill since I had bare feet when I took my shoes off. I've never been a treadmill ever before or since. No other tests. Prescribed me Clopidogrel which gave me raging heartburn, GP said nothing he could do about that, other than give me extra tablets and I strongly object to having to take a drug because of the side effects of another, so I stopped taking it.

Not even doppler ultrasound and also not even an ankle-brachial index ... Sounds completely pathetic. I'm sure that these people are falling well short of UK care standards for PAD.

Can you get to see a vascular specialist?

 

[Sarahp]

My GP compared my pulses in my ankle and groin and the hospital repeated that and then moaned like hell at me when they wouldn't allow me on their treadmill since I had bare feet when I took my shoes off. I've never been a treadmill ever before or since. No other tests. Prescribed me Clopidogrel which gave me raging heartburn, GP said nothing he could do about that, other than give me extra tablets and I strongly object to having to take a drug because of the side effects of another, so I stopped taking it.

I agree with Eddy that is not sufficient, can you see anyone else at surgery about referral to vascular surgery or at least podiatrist who can do the dopler test for you, I paid for my first one private due to my leg wounds, wasn’t really bad but enough to make me short for cash for a few weeks. When is your next diabetic nurse review? They can refer to podiatrist without Gp involvement in my surgery.