Pump waiting time

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rachelha

rachelha

Well-Known Member
Relationship to Diabetes
Type 1
Hello

I am not sure if this should be in the new pumpers thread or not please feel free to move it.

I was wondering how long most people have to wait for a pump. I have been assessed and meet the NICE guidelines for a pump but there is a 15 month wait here in the Lothians to get one. Is this normal?


Rachel
 
Hi Rachel,
Once we got the consultant to say A needed a pump - we waited about 2 months. Have they said why there is such a long waiting list? Is it about staff training etc? I know things are different in Scotland and the legal side of things is a little different i think. There are a few on the childrens list who live in Scotland who are campaigning very hard to even get their consultants to agree to a pump - so i think you are ahead of them. Sorry i cant be much help - but i hope they bring it forward for you - or perhaps you could ask for a referral to another hospital who may have a shorter waiting list?🙂Bev
 
They only have funding for 25 people a year. So I am very grateful to have got on the list at all. I had not thought about a referral to another hospital, i might ask. I think the problem is just funding. I did ask about buying it myself, but I would still have to wait for the training so it would not be any quicker, and I am not sure how I would feel about doing this anyway. I am 35 and want to have kids, but as my levels are not great, they really want me to wait for the pump first. I feel that I have not got time on my side to wait for the pump, and then I assume it takes a while to get used to it too. Sorry, I am having a down day about it all today
 
Perhaps you could ask for a referral on the grounds of needing to start a famly? If your team are desperate for you to be pumping before getting pregnant - they have to understand that age is not on your side? (sorry to be blunt - but you know what i mean). They have to tell you what other hospitals do pumps and what their waiting lists are - so you can be referred and get a second opionion/chance to start pumping quicker than 15 months. This is how it works here anyway, everyone is allowed to be referred if they wish and the hospital have to refer you to a hospital that do pumps and have smaller waiting lists. Most hospitals dont like doing this - because they know they will get billed from the new hospital if they put you on a pump! If you buy your pump - most hospitals wont fund the consumables - which cost a lot.
If your consultant says you fit the criteria - they cant use funding as a reason for the delay. Have you been in touch with John Davis from INPUT? He will be able to give you all the necessary information as regarding your rights etc and how to proceed.

He gave me some brilliant information which i sent to our team and hey presto - we are pumping!🙂Bev
 
Hi Bev - thanks for your response - I have emailed John at INPUT. How long did the rest of the pumpers here wait for their pumps?
 
rachelha said:
Hi Bev - thanks for your response - I have emailed John at INPUT. How long did the rest of the pumpers here wait for their pumps?
Click to expand...

I can't compare unfortunately, it took us 6 years from being told Jessica needed at pump at 6 months old to finally getting one at the age of 6. It was all to do with hospitals etc and not getting referred and eventually GOSH got us referred and bingo. We waited a year once being referred as we wanted the sensor pump and it was only first out when we started pumping.

You shouldn't have to wait that long. Not sure what it is about funding. Who will only fund 25? Is it the hospital or the PCT stating this? It is different in Scotland though. The NICE guidelines don't apply. You need to find out what guidelines the Scottish system have. The NICE ones say that if the consultant says you need a pump, the PCT have to fund it and thats that !
 
I have done a bit more investigating on this. It turns out that the waiting list in the Lothians is now up to 2 years, but that is better than in other areas of Scotland. There was a debate in the Scottish Parliament recently about Scotland's poor provision of insulin pumps. Scotland is at the bottom of the league table of western health care systems’ delivery of insulin pumps. There is currently a consultation about the SIGN guidelines (Scotlands version of NICE) for the management of diabetes.
I had a response back from John at INPUT a someone who knows more about the situation in Scotland - very interesting, but not sure if there is actually anything I can do to improve the situation, apart from move to England.
 
Hi Rachel,

What an awful situation to be in?! Im horrified!

I was aware this was the case though, through this forum there have been a few threads on scotland previously. This seems ludacrious. I am really sorry that there is such a difference between the two places...

I live in London, I struggled to get on the pump but I have to say I think that was due to my poor luck of seeing a different doctor every six months and no-one really helping in that respect. The nurses were great and pushed for me and they were the ones who MADE it happen. I cant really be specific as to "how long it takes" becuase I had to complete the dafne course and also had a couple of other set backs.

There may not be much you can do but if you have the fire in your belly then its time to start the fight. How much do want this? Start writing and fast! I would write to the local MPs, the MP for health in scotland, magazines, diabetes UK, your local media, your consultant....make a drama of it! Its important stuff and people should know about it.

I also have another suggestion. It isnt my first suggestion as I dont feel you should HAVE to pay for it. but I know from cruising some of the american diabetes sites (and facebook groups about diabetes) that some people fundraise to get the money for their pump, particually those who cant afford it (I was told the new medtronic veo I have is ?2700). It raises awareness of this hiddeous deficit in the health system and also fundraises for your pump. If you had the pump in your hands, I wonder if you could take a break to somewhere in England where you could be taught your pump training?

Perhaps my suggestions seem extreme?! But trying to think out the box here and see how it can be done. I would suggest getting on a couple of other forums too, see how people are challenging this.


I started pumping a few months back, I am 32 and I adore it. If pumping is truely what you want, fight for it, I can assure you it is worth it.

Good luck

Louisa xx
 
hello. I'm still in talks about getting a pump, and not even seen a consultant yet 😱 i told the nurse erm...how long ago was it? 2 months?
 
Wow, some of these times are really bad. Any of you fancy a trip down to Eastbourne? I phone asking about a pump in October, got an appointment with the pump clinic for the start of next month and was told if I chose to go onto a pump I could start on one in January.

Rachelha,

Although I'm not yet a pumper what I would suggest that you do is go out of area. Get transferred to another team. Sorry if people have already suggested that option.

Tom
 
rachelha said:
I have done a bit more investigating on this. It turns out that the waiting list in the Lothians is now up to 2 years, but that is better than in other areas of Scotland. There was a debate in the Scottish Parliament recently about Scotland's poor provision of insulin pumps. Scotland is at the bottom of the league table of western health care systems? delivery of insulin pumps. There is currently a consultation about the SIGN guidelines (Scotlands version of NICE) for the management of diabetes.
I had a response back from John at INPUT a someone who knows more about the situation in Scotland - very interesting, but not sure if there is actually anything I can do to improve the situation, apart from move to England.
Click to expand...

On the other forum i am on (children with diabetes) - there is a small group of Scottish mum's who are campaigning to get more pump awareness in Scotland - i think they are planning some meetings etc - do you want me to ask if you could contact them? More people - more power and all that!🙂Bev
 
He he - you have already found them! This is the group i was thinking of - some are members of the childrens forum i am on. If anyone can change things - these mum's can! Are you going to one of the meets?🙂Bev
 
Hiya

Take a look at this group Rachel.

http://www.ipagscotland.co.uk/

This is my friend Aileen and her buddies. Aileen has been fighting for a pump for her son for a while now. He is at the in between stage I think of child and adult but even though he should have a pump they won't give him one.

I am trying to upload a couple of her leaflets but no idea if it will work. One of them is about a meeting on 24 November you may want to go to. PM me if the leaflets haven't appeared and I'll email them to you directly if you want.

Actually I think they may be too big so you'll have to pm me if you want to see them.
 
Adrienne said:
Hiya

Take a look at this group Rachel.

http://www.ipagscotland.co.uk/

This is my friend Aileen and her buddies. Aileen has been fighting for a pump for her son for a while now. He is at the in between stage I think of child and adult but even though he should have a pump they won't give him one.

I am trying to upload a couple of her leaflets but no idea if it will work. One of them is about a meeting on 24 November you may want to go to. PM me if the leaflets haven't appeared and I'll email them to you directly if you want.

Actually I think they may be too big so you'll have to pm me if you want to see them.
Click to expand...

Adrienne if you want me to put them on my web space just let me know.
 
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