Test strips - DUK campaign

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Cheers It's good to Know
 
Northerner said:
Hi,

I read in another forum about this - it is a DUK campaign to stop test strip restriction and includes a 'campaigning tool' with a letter you can send to your GP:

http://www.diabetes.org.uk/FAQ/FAQ_3/#anchor_4959
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thanks northner i dont have a problem with getting testing strips but think its horriable that some people cant get them on script and have to pay for them 😡
 
Reading through the material, I notice that DUK's advice concentrates on the NICE guidelines which cover only England and Wales. There is no advocacy advice available based on the guidelines extant in Scotland (such as they are). This hampers people like me considerably in our efforts to secure a good level of treatment and support for ourselves and others. Once again, I find myself disappointed with DUK and their rather London-centric view of these islands.
 
I've sent an email to the DUK Advocacy folk today what reads as follows:

To whom it may concern,

I'm a recently diagnosed (two months ago) Type 2 Diabetic. Initially I was encouraged to test up to 6 times a day in order to get my blood glucose levels under control. However, shortly after diagnosis I decided to come home from London to Inverness where I have family who are able to help me should I need it. The surgery here does not support testing for 'diet controlled' diabetics which is what they call me. I've therefore been looking at your website for help in persuading them to change their minds. I'm facing a situation where I have to fight for the right to test as part of a regime that will allow me to control this disease, rather than let it control me. I need as much ammunition as I can find and I am greatly disappointed and dismayed to discover that all your available support is aimed at England and Wales. There is nothing there that is especially helpful for diabetics in Scotland. I would like to point out, that:

a) Your organisation is called Diabetes UK, not Diabetes England and Wales,
b) The NICE guidelines on which you rely do not apply in Scotland, and
c) The incidence of Type 2 Diabetes is apparently higher in Scotland than in the rest of UK

It would therefore make a good deal of sense if you could add to your advocacy packs a set which apply specifically to the situation in Scotland.

I look forward to seeing your response in due course and would be glad to help out with any relevant research and materials development.

Yours faithfully
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Think it'll light a fire?
 
Couldn't have put it better myself Alison, a glaring oversight on their behalf! Unless they have another 'Scottish' section hidden away deep within the depths of their labyrinthine website!😱🙄
 
Diabetes UK for all parts of the UK

Diabetes UK does have a Scottish helpline service, so perhaps they issue advocacy materials? Diabetes UK is not the easiest website to navigate by a long way. If we're highlighting the omission of Scotland, then we should also ask about the situation in Northern Ireland. I always think of NI, as I lived there for 6 months soon after diagnosis, while carrying out MSc research, and through a public health consultant, met a recently retired diabetes specialist who did wonders for my confidence and happiness!
 
AlisonM said:
Nothing much there so far either, unless you count a lot of dead links.
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Hi there,
did you mis this part ? Diabetes UK Scotland are already campaigning on self-management ....and they have already done the petition bit ...

"In January, we submitted a petition to the Scottish Parliament on the provision of structured education for people with diabetes. The petition has opened up new channels to make our case for support for self management and we hope to see it baring some fruit in 2009."

( I expect they mean "bearing" 🙂)
 
Hi PeterC,

To me that sounds like a petition to provide Education (eg courses such as DAFNE, DESMOND, etc) to help with self management.

It doesn't specifically mention making test strips available.

Thats my interpretation of the paragraph anyway.

NiVZ
 
Peter, if you read through the stuff as I've been doing, you'll see that there's no specific mention of testing as a tool for self-management. Testing gets mentioned in passing but is otherwise ignored. It seems that, as far as the Scottish NHS is concerned, self-testing isn't even on their radar. Also the Scottish DUK microsite lacks any of the advocacy packs available for England and Wales. The apparent situation here makes such packs absolutely essential as we seem to have so much further to go on our journey towards sensible treatment plans.

I've been following link after link, looking for some place to start, but when it gets down to the nitty gritty detail, most are dead ends. It does seem there is a process underway which may provide some improvement eventually, but as yet I haven't seen any detail on it. I'm trying to get in touch with an old acquaintance of mine* who's on the 'Parish Cooncil' (Scottish Parliament, in case you were wondering) to see if he can get me the gen I want. Then perhaps I'll have a place to start from.

*He's proving a little bit slippery. I may have to set my godmother on him, he's terrified of her and I've been gone too long to have much pull left.
 
I had a reply from a very nice lady called Jennifer:

Hello

Than you for contacting the Advocacy Service. I am very sorry to hear that you did not find the advocacy pack helpful. We are currently updating all the advocacy packs at the moment, including the pack on the availability of test strips. The updated pack will be more relevant to the UK in terms of the references used, although the information on the process of challenging test strip restrictions will not vary considerably.

I have spoken to my colleagues in the Diabetes UK Scotland office recently, who have informed me that the Scottish Intercollegiate Guidelines Network (SIGN) guidelines on the management of diabetes are being reviewed at present and should be available in March 2010. The current SIGN guidelines do not really aid any argument for prescription of test strips. In the absence of any firm guidelines it will be necessary to request a copy of the Health Boards guidelines regarding the prescription of test strips, as in some cases GP's will have interpreted the wording of them very strictly and there may be room to negotiate and make a case for prescription.

You may have thought of this already, but if you would like me to contact our Science and Information team and ask them to research any studies etc that may help with any argument for I would be happy to do so.

The link below will take you to the Diabetes UK Care Recommendations which you may find useful.

http://www.diabetes.org.uk/About_us/Our_Views/Care_recommendations/Self-monitoring_of_blood_glucose/

Thank you for offer to help out as regards information. I would very much like to discuss this with you, if you could let me have a contact number I could call at a time convenient to you or alternatively you can contact me on my direct line [deleted].

Best Regards
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A very helpful response as you can see. I'm going to call her later and see what I can do to make myself useful.
 
Had a long chat with Jennifer from DUK's Advocacy office today. Jennifer is also a Scot and had noticed the same gaps I did. She tells me the current advocacy documents are being worked on now and the new versions will provide advice for Scotland and NI as well. The SIGN Guidelines* are currently also being revised, though she doesn't hold out much hope that the new version will give much more support to the idea of self-management through testing than the old.

She's given me the name of a contact in Scotland I can talk to about my situation and is going to ask the Research Department to look up any research papers on the value of testing. She'll email me those sometime next week.

*SIGN is the Scots equivalent of NICE.

Jennifer said, there is a clear perception among professionals (based on accepted research) that testing leads some sufferers to become more anxious, while few know how to properly interpret the results. So, those who want to test need to persuade their medical team that keeping track of BGL through testing gives better control over the disease, that it helps them stick to the diet and exercise regime because they can see for themselves, on a daily basis, how that affects their overall health. If you can use these arguments, you may be able to convince your team to give you the strips and lancets you need.

All things considered, a very positive conversation.
 
Thanks for the update Alison. It certainly makes sense that people need to show that they are capable of using the results to improve their levels. It seems a shame though that many doctors seem to take the rather arrogant stance that most people aren't capable of making best use of the results, and in particular that they choose not to provide it to those willing to give it a try, at least.
 
Northerner said:
Hi,

I read in another forum about this - it is a DUK campaign to stop test strip restriction and includes a 'campaigning tool' with a letter you can send to your GP:

http://www.diabetes.org.uk/FAQ/FAQ_3/#anchor_4959
Click to expand...

Peter C said:
Hi there,
did you mis this part ? Diabetes UK Scotland are already campaigning on self-management ....and they have already done the petition bit ...

"In January, we submitted a petition to the Scottish Parliament on the provision of structured education for people with diabetes. The petition has opened up new channels to make our case for support for self management and we hope to see it baring some fruit in 2009."

( I expect they mean "bearing" 🙂)
Click to expand...
I HAVE DONE THT 2 YEARS AGO AND I RECIEVED 3 NICE LETTER FROM THE HOUSE OF COMMON SIGNED BY MY MP BUT NOTHING MORE😡
 
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