Diabetes UK Scotland have submitted a petition to the Scottish Government and we need your support. We have one chance to show the Scottish Government we are strongly against the present situation of postcode prescribing and we want equal access to all treatments no matter where you live. At present, generally Scotland lags behind England and other countries in diabetes treatment.
Please take a minute to sign the petition, anyone in any country can sign it. It only requires a name then a click in the validation email, so it very fast. Every member of the household can sign if they have their own email address.
Please support this and forward it on to anyone who may be kind enough support the cause.
lol, thanks guys! We need lots of support on this… after Glasgow’s great response today, our fight has just got harder! They are not convinced by the clinical evidence as outlined by SIGN, so they said at today’s Annual Review! Blinking heck some Glasgow clinicians wrote the guidelines, but they are not convinced by them even though the rest of the world accept the benefits of pumps! I could scream!!!
@aileen I think at this point I’d be questioning the credibility and competence of whoever is claiming not to be convinced about the guidelines – if they’re going against such a strong tide of expert opinion, I’d expect them to be an internationally recognised diabetologist/endocrinologist with significant experience in treating diabetes with insulin pumps.
Its always worth asking what experience they’re basing their decisions on. My PCT consulted an “expert” on whether CGM was a good idea for me. Without meeting me or seeing my records he said it wasn’t. A little bit of digging showed that while being an experienced endocrinologist, he’d never actually used CGM in practice because he didn’t like the idea of it. I got his opinion removed from the decision making process by asserting that he wasn’t competent to offer such an opinion.
In your case, are the people disregarding these guidelines really competent to do so? And if so, what evidence are their claims based on?
@Alison the answer is no as far as we are aware! It is non medical people on the board who are making these decisions… the ones who hold the purse strings.
I went through a similar situation myself when Marc was trying to get a pump. The one and only consultant in our area (Glasgow) said no, he said ‘not now not ever’ actually. He hadn’t seen Marc in almost 2 years when he made that decision. So I wanted a second opinion. I had a terrible fight for it, the health board said we could get an opinion by any consultant in Glasgow, but what was the point when not one other knew anything about pumps and had never prescribed one or even have a patient on one! Eventually with the help of my MSP we got out of area to a consultant who has a good number of her patients on pumps and was at least qualified to give an informed opinion on whither she felt Marc was suitable for a pump not. Getting her positive opinion didn’t actually get us anywhere as our health board would not take the opinion of another consultant in to consideration…. but that’s another story! We did eventually get a pump though as you know, really thanks to INPUT and some luck!
Anyway, back to pumps in Scotland. We do need to find out who exactly is making these decisions… it seems very strange when some of Glasgow’s HCP’s collaborated in writing SIGN guidelines! Thanks for raising that point.
This really is madness isn’t it? The poor provision of pumps seems to be a financial decision. But pumps aren’t *that* expensive – four / five grand per pump, a few day’s training and slightly more than MDI for the consumables I would guess.
Is there a way of comparing the relative costs of MDI v. pumping over a ten year period?
However, if one goes down this alley the argument comes down to whose figures are correct, rather than the actual matter in question – the provision of pumps.
I’ve been asking Diabetes UK to build the economic business case for pumps for some time – the pump companies have the data because they need it to get their products approved (I asked Medtronic about it when we were in Lausanne) but I haven’t been able to get them interested so far.
That said, I don’t think this is a case of not having the evidence, I think its more that they have to cut costs and this seems an easy route. NHS finances are generally run on a 3yr budget, so savings over 10yrs don’t really interest them. In which case I’d stick to the basics – the guidelines say X, you’re not delivering against them, and argue from there. But I seem to remember you Scottish types don’t abide by the NICE guidelines as much as we do in England – are there any guidelines that they’re meant to deliver against and do they include pump provision as a standard?
Scotland has the SIGN guidelines, which I think are like the NICE guidelines but less enlightened, flexible and happy-go-lucky. @aileen will be able to correct me on the details – I know very little about the hard-core details.
@Tim‘s correct, but our SIGN guidelines are just guidelines and not mandatory like NICE Technology Appraisals are in England. They are much harder to meet, and although they were updated last year they are more along the lines of NICE pump guidelines of 2003! You have to be blue lighted to the hospital to meet them.
These are the (evidence based) guidelines that our Health Board are now saying they are not convinced by the evidence for adults!!! Even though several doctors in our area were involved, and no doubt paid very well, to compile and write! I can feel an FOI coming on!
The marvel that is Google tells me there are approx 27k Type 1’s in Scotland. So 2000 pumps would mean approx 7.5% will have a pump. Research* says approx 20-25% of people could benefit from a pump, but 7.5% would be a start and at least gives people a target to hold the NHS to.
*Pickup JC. Are insulin pumps underutilised in type 1 diabetes? Yes. Diabetes Care 2006; 29: 1449-52