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No new pumps (Scotland) :(

T

the_exile

Well-Known Member
Messages
76
Been on the waiting list for a pump for almost 2 years now (ideal candidate apparently!), asked about it at recent annual review and got told that all new pumps have been cancelled and that for the forseeable future they're off the menu (cost, cheers bankers), disappointed, was looking forward to getting up and running with one, although not as bad as 8 people who had booked 2 weeks of work and were 4 days away from getting their pumps when this decision was made!

Is this the end of insulin pumps in certain Primary Care Trust areas? Would certainly seem that way, the way I was told, felt as if it would be a loooooong time before they even considered issuing them again :x
 
Re: No new pumps

Not sure whether you live over the boarder or not..

In England and Wales PCT's are governed by Nice Guidelines which means that they are legally obligated to provide funding for insulin pumps to diabetics who fit the critera, as soon as the consultants says you need one they have to supply funding..

To refuse or to stall funding the pct will be breaking the LAW

However

Scotland is different

Not only have they got there own guidelines/policies but they are under no legal obligation to fund pumps at all... So it's an area that they have totally neglected because there's no legal comeback for them..
 
Re: No new pumps

Yeah I live just outside Edinburgh, that's shocking really, I feel a campaign against this decision coming on.............
 
Re: No new pumps

Scotland does have it's own version of INPUT, but can't think of there name at the moment, check out input's website they might have more information there!

I've got a sister up your way, she also lives just outside Edinburgh

Sad they don't put the effort into the diabetics as they do in other medical areas..

My sister has had fantastic care for a life long eye condition that makes her virtually blind both medically and support wise, a lot more support than she got when she was down this end of the country
 
Hi there, not sure how correct that info is. I live in Glasgow and started on my pump last week. This year 5 adults and 15 kids will be starting in the Glasgow/Clyde area, and I believe this is the norm year on year.

I was on the waiting list for a year and am so glad I got one, however I asked my consultant who denied the 'waiting lists' had been scrapped as reported in the papers? Not totally sure to be honest and am obviously now in a different situation as I am on a pump, but maybe things will work out for you soon. Keep speaking to your consultant and maybe also your local mp? May not help but more people on your side might be good.

Fingers crossed for you!

Gill x
 
What a shock..was it your consultant that told you that there was no funding for pumps in forseaable future? Have you asked him what his opinion is on this?

Have you been able to identify a way how to get this matter raised at a higher level?

Perhaps we could all start a petition for you and future pumpers and Scotland.....!!!!!!!

I feel so sad that you have been so disappointed when thinking you were going to get one....and for others in Scotland too.....perhaps they should stop the free prescriptions????

OOOps...better not go down the political line........and differences in the 'United Kingdom' - that we aren't!!!!!!

Please let us know your thoughts and how you get on.....and others in Scotland too....
 
Aaaaaarrrgghh I hope this doesn't happen in England! My consultant applied for funding for me in March, supposed to take 2-4 weeks, but no reponse yet. The DSN says all the recent applications are taking longer, I hope they're not stalling til they can turn me down
 
Sue
I feel sure that timings around March-July are more critical and longer in England due to no budgets left at certain points of the year.....England are a lot different to both Scotland and Wales. I am quite positive that this may be more behind reasons for delay...I hope so for you...and others
 

Hi Sue

I have a feeling you will know very soon. My consultant applied for my funding in March 2010 and I didn't know whether funding had been approved until June.
 
Sue
contact Input

Now your consultant has said you require a pump then for your PCT not to fund it would be illegal so it sounds as though they are stalling..
 

I did wonder if it was because the PCT were busy with year-end bean-counting etc, and a backlog due to staff using up their annual leave before the end of the holiday year. Hence I didn't hassle the DSN until May. Getting a bit worried now nonetheless.
 
jopar said:
Sue
contact Input
Now your consultant has said you require a pump then for your PCT not to fund it would be illegal so it sounds as though they are stalling..
Click to expand...

Hi Jopar

I've just emailed Input. Said I don't want to make a fuss about the delay at this stage (in case just an administrative issue) but asking if they know of any plans for funding to be withdrawn, in England and/or Scotland. I'll post when they reply.

Maybe the PCT are just stalling so my funding starts in the new financial year. I'm hoping Input will put my mind at rest that they're not stalling until worse news is announced.

My consultant and I agreed I need a pump back in November. Things went awry because he gave me wrong info about the process, I'll be gutted if I've missed out on a pump because of that delay.
 
iHs said:
I have a feeling you will know very soon. My consultant applied for my funding in March 2010 and I didn't know whether funding had been approved until June.
Click to expand...

Thanks, I've got everything crossed for luck. If/when I get good news, you'll hear about it!
 

I finally got the words 'Yes you can have an insulin pump' out of my consultant in december 09, maybe january 10, but first i had to jump hoops, reduce my hba1c, do the DAFNE course..

I jumped all these hoops.. and was told the same again, yes you can have a pump.

It was a case of 'we only have one nurse trained in insulin pumps', and 'she can only do one at a time and your third on the list'. Then in august time i was told 'she'd gone on LONG TERM sick leave'. Boy was i upset

i really wanted a pump for my sisters wedding, wearing a slim fitting floor length dress that to inject i had to undress myself i would have to leave the top table to find somewhere to safely do this.

I got a phone call in january, can you come in next week for pump training. 'HELL YES I CAN!!!!!!'

Got trained, hook up date was 21st february 2011. went very slowly may i add :lol:

Alot of times i felt like complaining or emailing or calling to basically ask where my pump was!

But i never did because i have such a good rappor with my diabetes team, i trusted they would deliver and being in a relatively small town i think i'm quite lucky to get one.

BUT if you do think you are being stalled for no good reason then do something about it! Like Jopar says you have been told you are eligible so it is the PCT's responsibility by LAW to deliver!

Hope you get there soon!
 
Thanks for all the replies folks, I was initially told I'd be put forward for funding in April 2010, but have heard not a thing since. Am really disappointed by this move as this would help me greatly, I've got absolutely no hypo awareness and haven't for a few years now, the first thing I know I'm hypo my legs go from under me, have ran my blood glucose levels a bit higher for ages (last hba1c was 8.4), not sure if it's related but been feeling a bit rubbish, lethargic, completely exhausted etc, have 3 kids aged between 1 and 5 so that'll probably have a lot to do with it! Anyway, I digress, I feel the pump would solve a lot of my problems, I could have tighter control, not be terrified of the next hypo, an end to between 5-8 injections a day would be nice too!

I'm going to make some enquiries with my DAFNE people and try and get a hold of the lady I spoke to about the pump initially (I see a different consultant every time I go to the hospital so I can't remember any of their names!) and perhaps get in touch with my local MP, hopefully if I shout loud enough I may get somewhere!

Will keep this updated as the shoutyness progresses
 
Received a reassuring reply from Input:

"Hi Sue
Thank you for contacting INPUT.

Its true that pumps are less readily available in Scotland, but as far as I know its only one health board that has stopped funding new pumps - see here: http://www.ipagscotland.org/news/232-diabetes-charity-up-in-arms-over-pump-threat.html

Its different here in England. Primary Care Trusts are obliged to fund pumps for those who meet the NICE criteria and whose healthcare teams say it is clinically necessary. Having had a NICE technology appraisal, it is now part of the NHS Constitution.

Three months is more than a reasonable time for the PCT to rubber stamp your consultant's application for funding. I would suggest you call your PCT's PALS office and ask them to look into it. I am also happy to contact them too, if you give me either the name of your PCT or your GP's surgery address.

Times are hard for the cash-strapped NHS, but certain things are enshrined in statute. The NHS and the Department of Health are completely in favour of insulin pump therapy and have commissioned various studies and working groups to increase availability, so I don't think you should worry! - http://www.input.me.uk/who-else-is-working-towards-greater-access-to-insulin-pump-therapy/

I hope that helps reassure you.

Best wishes
Lesley Jordan
---
INPUT
http://www.input.me.uk "

The DSNs who handle pumps aren't there til next week, I'll contact them then and if no joy will start making a fuss. Good luck everyone!
 
I'VE GOT FUNDING!
Sorry to shout, but I'm so pleased and relieved.
It has taken 12 weeks from applying, seems it was just an administrative delay.
I've chosen a Veo in Deep Purple and should get hooked up in about 2 weeks.

Phew
 
LittleSue said:
I'VE GOT FUNDING!
Sorry to shout, but I'm so pleased and relieved.
It has taken 12 weeks from applying, seems it was just an administrative delay.
I've chosen a Veo in Deep Purple and should get hooked up in about 2 weeks.

Phew
Click to expand...

Excellent news!

I was shouting off the roof tops when i got my date confirmed!

Hope all goes well and let us know how you get on when hooked up
 
As mum to a recently diagnosed T1 6yr old, would any of the pump users recommend this for my wee boy? He seems to be embarrassed about his diabetes, eg doesn't want the teacher to talk about it or explain it to the other kids, when I mentioned the pump, his eyes lit up and he said he wants one. He's too young to understand how things really work though, I've done some reading on it but I would want to find out as much as I can. I take it not everyone is suitable? And you have to apply for funding? I've so many questions burling about in my head - I'm glad I found this! I'll never be off it now! Thanks for any info or advice.
 

Will do, Ebony. I expect it'll be hard not to share!
Sue
 
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