Scotland - pumpers and anyone wanting a pump...

[Alba37]

Hi everyone,

iPAG have managed to secure a meeting with the Public Health Minister, Michael Matheson. This is a great opportunity to raise awareness of Type 1 Diabetes in Scotland to the government. We are trying to cover as wide a range of the population with Type 1 in Scotland wanting pumps as possible. We will be handing out a reference sheet with as many different examples as we can get and would be grateful if anyone could help by us by giving us some information? Please forward this email on to anyone who may be interested.

The format will be roughly like this:

Person's name (first name only or anonymous if the patient prefers):

Age and length of time with diabetes

A few bullet points about what they are suffering with their diabetes (be blunt to get attention and show the challenges of living with diabetes if possible) Even just saying members of your group have a pump, or you have met others on pumps on holidays, weekends etc. Why can others get one but not you? Does your clinic have their own guidelines, do they not follow guidelines at all? Anything to show the inequity and unfairness of the service in your area

Followed by a route map along the lines of:

- asked for a pump on xxx date, told I met the criteria but no chance of getting one, referred to DAFNE on xxx date, waited two years for a course, did DAFNE on xxxx date, still no better and no further forward.

We need to keep these short.

We also want to illustrate what people have to go through to get a pump. We would like to hear the journey which people have had to get their pumps. A few bullet points with timescales would be great.

If you can you please help by either completing your own case history or ask anyone you know who has a pump or is trying to get one to help it would be much appreciated. You can send them to info@iPAGScotland.org or write on our facebook page.

Thanks!

Aileen

p.s. a reminder the closing date for the VoyageMD travel competition are the end of the month. Good luck to anyone submitting an entry.

Adults http://www.voyagemd.com/best-short-story-competition/
Kids http://www.voyagemd.com/young-person-diary-comp/

 

[Northerner]

Hope you get a good response, I have tweeted the thread 🙂

 

[Alba37]

Hope you get a good response, I have tweeted the thread 🙂

Thanks!

 

[Robster65]

SOunds like a brilliant move to get as many cases highlighted as poss. Well done on being so proactive.🙂

Sadly Twitter's down at the mo but I'll retweet Northerner's if it comes back online.

Not in scotland but don't like inequality or lack of governmental responsibility.

Rob

 

[suziepoo]

I moved from Manchester (where I was given the pump with no conditions - because I'm severely needle phobic!!) and have just had my first appointment with the consultant in Aberdeen.

They've forced me to sign a contract stating they will take my pump away if I don't reduce my HBA1c and don't test sufficiently. Told the consultant this was just adding extra pressure and would cause massive problems if they took it away.

Apparently, this is because the pumps cost ?2k per year but surely having a Type 1 diabetic who isn't on any form of insulin would be more expensive??!!

My HBA1c has reduced from 11.4 to 10.4 in 6 months. He's also insisted I increase my insulin rates significantly more than my previous consultant recommended.

Not at all happy with the treatment I received and am really tempted to head back to Manchester for the sake of my health!! It took me long enough to get decent support there without having to start all over again - with the added threat of having my pump taken away.

Sorry, but I'm really not happy with the consultant!!!! 😡

 

[everydayupsanddowns]

Will RT your request Suziepoo

Re: your consultant - shame that you are feeling added pressure (not good). Good news that your A1c is dropping, though at 10 I would be quite worried by it myself in terms of future complications. I guess this is what your consultant is seeking to tackle with revised ratios etc. what are your day-to-day levels like. Are you getting big rises after food? Big rises overnight? Lots of big swings up and down? Wondering if your Cons might be missing part of the picture, given your concerns

 

[Pumper_Sue]

I moved from Manchester (where I was given the pump with no conditions - because I'm severely needle phobic!!) and have just had my first appointment with the consultant in Aberdeen.

They've forced me to sign a contract stating they will take my pump away if I don't reduce my HBA1c and don't test sufficiently. Told the consultant this was just adding extra pressure and would cause massive problems if they took it away.

Apparently, this is because the pumps cost ?2k per year but surely having a Type 1 diabetic who isn't on any form of insulin would be more expensive??!!

My HBA1c has reduced from 11.4 to 10.4 in 6 months. He's also insisted I increase my insulin rates significantly more than my previous consultant recommended.

Not at all happy with the treatment I received and am really tempted to head back to Manchester for the sake of my health!! It took me long enough to get decent support there without having to start all over again - with the added threat of having my pump taken away.

Sorry, but I'm really not happy with the consultant!!!! 😡

Hi Suzie,
Firstly well done on the drop of your A1c, that's a fantastic result.
Does your new consultant not know it's best to reduce a high A1c slowly? If not then he best go back to endo school 😡
Have you got the book pumping insulin by John Walsh? This will also help you no end in lowering your A1c safely.

Please ask for your Contract back as there's something you wish to check on it............. then add to it signed under duress.
The consultant has his maths wrong as well it's aprox ?1200 a year. Besides he didn't provide the pump it was your pct in Manchester. So it's not his property to take either. 😡

 

[trophywench]

I was wondering about the 'ownership' issue too Sue! Surely Aberdeen are only providing the consumables until the contract expires? You can't count the insulin or eg test or ketone strips, because you'd have to have them anyway. Plus of course! - you are saving them the cost of replacement pens and 4 boxes of needles a year!

 

[suziepoo]

Hi Trophywench and PumperSue
Thanks for your thoughts on my pump ownership! You're quite right that Manchester paid for the pump and so Aberdeen will only be paying for the consumables. If they threaten to take it away, I will remind them of this and the fact that it will cost them a lot more to deal with a T1 diabetic who is unable to inject insulin properly!!
Since being on the pump, my insulin has increased significantly from the 17 units a day to roughly 25 to 30 a day!!
I have got that book and will re-read it again as I last read it in April last year.
I did put a note on the contract to state that it had been provided by Manchester and my consultant had promised that I would never have to go back on injections again.
If they do threaten to take my pump away, I will insist on putting my case to the panel and explaining the circumstances behind why I got the pump so quickly and why I need it - none of which the consultant was bothered to ask about. The lovely dietician has more information on the issues I have had than he has.
The dietician emailed me late yesterday and has been fab! She's spoken to the dietician in Elgin (only 10 miles from home) and has told her that I want to go on the DAFNE course and could she arrange it. Love someone who does what they promise!
Thanks for your support and I'll let you know how I get on.

Sue xx

 

[Alba37]

SOunds like a brilliant move to get as many cases highlighted as poss. Well done on being so proactive.🙂

Sadly Twitter's down at the mo but I'll retweet Northerner's if it comes back online.

Not in scotland but don't like inequality or lack of governmental responsibility.

Rob

Thanks Rob! As you say, It's all about everyone having the same choices, we only want equality.

 

[Alba37]

I moved from Manchester (where I was given the pump with no conditions - because I'm severely needle phobic!!) and have just had my first appointment with the consultant in Aberdeen.

They've forced me to sign a contract stating they will take my pump away if I don't reduce my HBA1c and don't test sufficiently. Told the consultant this was just adding extra pressure and would cause massive problems if they took it away.

Apparently, this is because the pumps cost ?2k per year but surely having a Type 1 diabetic who isn't on any form of insulin would be more expensive??!!

My HBA1c has reduced from 11.4 to 10.4 in 6 months. He's also insisted I increase my insulin rates significantly more than my previous consultant recommended.

Not at all happy with the treatment I received and am really tempted to head back to Manchester for the sake of my health!! It took me long enough to get decent support there without having to start all over again - with the added threat of having my pump taken away.

Sorry, but I'm really not happy with the consultant!!!! 😡

Hi Suzie

Sorry you've had such an awful experience : ( Can I use your story for the meeting please? Could you tell me how long you've had Type 1 and what it was like for you before getting a pump?

Well done on getting your hba1c down, you just need to carry on with the good work you've been doing. There are small things that can help reduce your hba1c, like basal and ratio testing, accurate carb counting, bolusing before food and taking one or 2 extra tests a day and correcting the result. Sometimes it very hard finding room to improve when you are already doing everything possible but you just have to keep trying, you have shown a improvement already. They should have been encouraging you not threatening you

Aileen

 

[suziepoo]

Hi Alba
I'm happy for u to use my story in your meeting. However, I don't want to put all the details on here (it's been a difficult 2 years in more ways than one!!) - so could you send me your email address and I will send you an email?

Thanks
Suzie

 

[suziepoo]

My very nice former DSN from Manchester is arranging for them to pay for one more year's worth of consumables for my pump!! She also confirmed the pump is mine and can not be taken away. She has also offered to speak to my former consultant and arrange a strong letter of support if I need it!!

Now that's what I call supportive!!!

PS I'll claim a breach of my human rights if they continue to threaten to remove funding!!! 😡