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Difficulty getting a pump

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Rosalind13

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Anyone else finding it difficult to persuade their specialist to agree to this, on the grounds of funding? I just can't get any reasonable control out of long acting insulin - my effort is there, my understanding is there, and my specialist says "you can't have a pump just because you want a new toy." My GP describes me as the most deserving case he knows but also told me that pump take up in my area is around 1% of type 1 diabetics (NICE target is 12%). He says that all local authorities are likely to be reluctant to fund in the current climate. Is this what other people are finding?
 
Find out the uptake of pumps at your hospiital..
Look at the NICE guidelines... Do you fall into their category of needing one.
Have you approached your Consultant? What was the reaction and reasoning from the consultant?
 
You cannot be refused a pump on the grounds of funding. If they agree that your treatment would be better with a pump, funding cannot be an issue, they are obliged to provide a pump regardless of what the PCT say.
If you go into google and search for the INPUT diabetes website, they have all the details on obtaining a pump.


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Hi Rosalind 13,
I know exactly how you feel, What everyone else are saying is right though, make sure your consultant gives you medical grounds for refusing a pump and that you get this in writing. However it doesn't matter that everyone else is saying is the way it should be, it doesn't always happen like this. The medical grounds that I'm being refused continued funding for the pump I alraedy have from my new (I've been with them almost 4 years) hospital is that my HbA1c is too high (6.9%) I hardly think that that level is too high considering before I got my pump my HbA1c average this is not even one of the highest was 14.8%. Input are excellent that's how I originally started on my pump in somerset. They gave me the name of a consultant in the same hospital who was in charge of the pump team a few months later I was on a pump. Unfortunately it doesn't always go on medical need but more on who kicks up the most fuss. Very sad but true!
Would you be happy to say what area or hospital you are in maybe somebody here has experience of them and has already got funding for a pump they might be able to give some insider knowledge.
Good luck Laura
 
Hi Pumppimp, I know excatly what you are saying, my DSN told me that my PCT didn't have any funding for pump's , my pct is southeastern & costal, so covers Kent. Saw my consultant at Margate, who after finding out that my blood sugar at clinic was 1.3 and that I was not flat on my back, decided that cell transplant would be the thing, so I said rather than all that, why not try a pump, so he referred me to our local pumping centre at Ashford. In between all this I rang my pct and got told that they have funding for pumps I'm now traveling 30miles for my consultant vists, but he's still trying the same thing as the old consultant, but now when I go hypo, I now also start to fit, which is not good . So I'm contacting him again, to say that this has now become dangerous.
 
Hi Julie1471,
I hope you manage to get another appointment soon with your new consultant. As previously said INPUT are great at assisting people to get a pump. They help you phrase questions better help you ask the right questions and put you in touch with the right people in that PCT/ hospital who can make the decisions about whether you get a pump or not. so If you need them give them a shout. Sometimes it helps to be very direct with HCPs not rude but just direct, tell them that everything they have told you, you have already heard from your last consultant, you would like to start on a pump, you fit the nice guidelines beacuse of x,y,z. What needs to happen so that you can get one. Usually if you're not already carb counting then that has to be completed first. Best of luck on your quest I think my pump is awesome and I hope that everyone who would like to try one will get a chance.
Laura
 
My local health board ha a waiting list of over 23 people most of these people have been waiting over two years. They claim that they don't have enough funding for pumps. They also refused to help me get one aswell even if I was paying for it xx


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Hi Lauren,
This is such a common thing to hear when I've been gathering evidence for all my little campaigns. There are not actually allowed to be waiting lists I wonder if anyone on the waiting list has this written down anywhere? The only reason to refuse a pump is on clinical grounds I know that doesn't happen but the more info you have the more of a fuss and awarness you can kick up. Unfortunately it's a bit different in Scotland compared to the rest of the uk. We are not supposed to have waiting lists either for pumps but there are quite a few areas that have them. In England Wales and N.Ireland the NHS is a whole and the NICE guidelines have to be followed. In Scotland The NHS is NHS Scotland and seperate from the main NHS, this means that the NICE guidelines have to be read but don't have to be followed. This gives some good stuff like all girls under 18 got the HP vaccine perscriptions are free to everyone etc, but unfortunately pump provision is the lowest in the UK and I'm sure there are lots of other people missing out on treatment they think would help them. What health board are you in?
 
i was turn down when i asked about a pump 10 years ago.
the resan i was given it is like having a chemacil factory in the home.
my blood is all over the place still is and have very limited vision in one eye.
lost the other eye a few years ago after having pain for over 14 mounths and all that hospital was saying there is nothing wrong.
i hade the same truble with that same hospital many years ago with a detached retna that was left for a year befor sending me to moorfields in london.
have not been back to the local hospital now for 8 years.

david and gd lassie
 
I was recommended for pump therapy a year ago and funding was approved after 9 months - finally got my pump yesterday after a further 3 months wait. There are only 30 type 1s on pumps in my PCT (an area covering about 750,000 people - so I guess less than 1% of type 1s)
 
The UK has the lowest percentage of type 1's on pumps out of the US, Canada and Europe. Probably because we are NHS funded rather than involving insurance companies or self funding. This is the downside I guess, it's certainly worth examining then carefully using the arguments for a pump when asking for one.




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We have a lower pump up take in the UK, than Israel , says something, doesn't it.
 
Aould be intersting to have a posting where we could just anonymously post which hospital gave us our pump and how long we had to wait and how long we've had it...
I know my old pct had incorrect data on a website saying how many users they had.
This was two plus years ago.. The website said they had 50 pump users... I was at the time only number 13...
 
Hi, my daughter is now on the interested list as our consultant keeps correcting me as we are not allowed to say waiting list! She along with two other children around the same age 8yrs old have had the green light. We are all carb counting for them, multiple injections, courses done. But the two person team that were supposed to be giving them the pumps and supporting them are down to one at the moment so they won't entertain it at the moment. The children were supposed to be getting them at Easter and now they are talking about the summer. Most disappointing for everyone concerned. My husband wants to go above the teams heads and find someone more senior that he could persuade to move things alone. They have already told us they have more pumps than people so funding is not the issue just manpower. But I am reluctant that yes we could somehow manage to get the pump before the summer but are then left on our own with no support and an annoyed diabetic team. Anyone any thoughts.
Mx
 
I had to move to a different hospital to get my son pumping. The difference in care has been eye opening. We went for our first consultation at the end of November and he was on the pump with fantastic education and support by the end of January. It's been life changing for him and I just wish the standards were consistent at all hospitals as its post code lottery in the UK. I just hope that things change so that everyone who wants a pump has access to one.
 
I've been asking for a pump for my daughter for a while - last appointment the consultant agreed she was a good candidate and said she would put her on the list. Not heard anything since. If I don't get anywhere at her next appointment in 2 weeks I'll be changing hospitals. We're under Leicester.

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Hi Rosalind 13

Nearly 4 years ago I asked my consultant about insulin pumps and he told me his been trying for the last 15 years to get
them for his patients but it was all politics and funding, I told him I was going to write to the hospital and ask.
I phoned PALS and got the name of the person in charge and asked if I could see them, this when on for a couple of weeks, eventually I wrote a letter to the PCT, I was very persistent and kept phoning the PALS team, they were really nice and helpful they kept me inform of what was happing, and after about a year I got the news that WHIPPS Cross Hospital was given the go ahead for insulin pumps, I was the very first patient to received insulin pump and 8 others followed, don't give up hope be persistent and write to your PCT.

All the best Joaquin
 
It took me several years of trying to persuade my Diabetes team to let me go on a Pump, I had met the NICE criteria all that time, even getting a number of complications (Eyes and legs) before switching to my local hospital (had gone to Good Hope in Sutton originally as they diagnosed me) and spoke with the DSNs there and within 12 months I had been offered a pump. I had to go on a BERTIE course, DAFNE not being available here, then I had to show a bit of improvement in my HbA1c which dropped a small amount but was still too high, so I was given funding last July and have been pumping ever since. It was hard work getting the funding in the first place but it has been worth all of the effort to get it.
 
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