Type 1 in UK trying to get pump

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Permalink Reply by Vonda K on February 29, 2008 at 1:57am

I was told my son could not get a pump. To expensive. Only would get one if his blood sugar control was not good with injections.

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Permalink Reply by andrew statham on May 24, 2009 at 2:06pm

I sympathise with u vonda ive asked my diabetes speciliast about going on one,and because im well controlled he said ill be better off carrying on with 5 injections a day.surely we should be able to choose our own options.

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Permalink Reply by Vonda K on May 24, 2009 at 2:43pm

Get this. When in the uk I found out there was funding at the hospital we were at. He fit the criteria. When I asked one of the doctors about it he said " No, this is not a negotiation." and that was the end of that the doctor would not discuss it further. No reasons why.

In Feb we move to New Zealand and go to the doctor. She says he's a perfect candidate for a pump... but there is no funding! How infuriating is that!

Can I go to a country that has funding and says yes.

From what I can find out from my research there is no funding inside or outside of the hospital for a pump or for the consumables that go with it. A pump here costs NZ$7,000 - $8,500 and the consumables cost a further NZ $70-$180 a month.

You can get money if you are good at sport though or want to go on a trip overseas. Just not if you are sick!

And one last thing. The government here will pay for the strips for you meter and you can get the meter free but they will not pay for you to be able to prick your finger!!!

In the mean time we carry on writing letters to people asking for money! And that feels so demeaning like we have to beg for something most kids/people take for granted, good health free from daily injections!

I know others have it rougher/tougher. They have no food, no clothes, live in terrible pain etc etc and I am thankful that my son has food, clothing etc BUT why should he live with the fear of dying young or having complications in the future when there are pumps for him to lead a more normal life.

Thanks I needed that rant!

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Permalink Reply by Dee on February 29, 2008 at 11:50am

I am trying to get one but they take ages and ages to get back to you. You need to fit certain criteria which reads a little like a tick box steps. a) on multiple injections and carb counting eg DAFNE b) have poor HbA1C -which i think is actually quite low- about 7.5, well for me anyway, despite all the trying! c) have hypo unawareness d) or are trying to get pregnant. This list is only from memory from something I have found on line about criteria from NICE.

I want one more than anything- I have tried so hard to get my blood right for the two and a bit years during DAFNE but before then didnt have a chance and I have figured that in my 19 years of diabetes long acting insulin does not work for me. If you dont have any success I am so up for starting some kind of campaign over here!

The funding goes through your PCT so it is a case of post code lottery. My hospital have been very supportive and have sent off the forms to the PCT. On enquiring to three very local chemists - nobody they deal with is on a pump so I really need to keep my fingers crossed. I will let you know if I am successful.

Let me know if you go for it and how your application is going!

Dee

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Permalink Reply by Rebekah Humphrey on February 29, 2008 at 1:45pm

I think we should campaign. Hardly anyone haseven heard of the pump in the UK. In the US, somethinglike 8-% of type 1 diabetics are on or going onto the pump, and theyhave had it since the 70s. Here there is something like 5% (Figures may be wrong, but they are somewhere in that range).

The benifits of th pump are better control, so less complications, and a farmore normal life, as well as saving costs for needles. Sometimes, I can inject up to 7 times a day if I am doing a film shoot. and I eat particuarly slow burning carbs (then I often have to split my injection n two). Tht is 7 needles a day. Also, Lantis cots more than Novo Rapid

Good luck wit your quest. Do you suffer from Hypo Unawareness?

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Permalink Reply by Vonda K on March 1, 2008 at 9:07am

We are not carb counting yet as the dietitian has not replied back yet with our sons carb/insulin ratio. As soon as we have that we will crack on with it. His HbA1C is crap 9. something. When the last doctor increased his insulin though he a a heap of lows. He does not have hypo unawareness as his blood sugars are too high and don't often go low. When they do they crash and he can tell usually when he is 3.5 or above. I expect that will change when his blood sugars are sitting lower more often.

Everything here seems to be post code lottery. Schooling, Dentist, Medical care...

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Permalink Reply by Rebekah Humphrey on March 1, 2008 at 12:24pm

My HbA1C last time was 10. I am having another test done this week, so that was before I started carb counting. Currently working out my ratio.

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Permalink Reply by Ross Padden on July 8, 2009 at 2:54pm

I attempted to get a pump earlier this year and was unsuccessful. I didn't meet the NICE criteria. These included a very high HbA1c, frequent severe hypo's or unmanageable sugar levels(which interfere with normal day-to-day living) and multiple daily injections, amongst a couple of others. I was half expecting the specialist to say no because after all, it isn't cheap.

Pump therapy does exist in the UK but is relatively unheard of. I think there are lots of options, like MDI's, before getting to the pump, but the impression I got was that pump therapy is for people who perhaps really do struggle with managing their diabetes. I was told the majority of patients who do receive the pump were assesed as to being very likely to develop kidney problems in the future, it makes sense I suppose. Of course this might not be the case if you have your own reasons for getting a pump. Yes, I came away thinking well, what about the diabetics who do take an interest in their health and probably deserve to have something like a pump? But then there are some down-sides to having one too.

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Permalink Reply by Alison Finney on July 9, 2009 at 9:23am

Ross, pump therapy is (slowly) growing in the UK but what you were told about the majority of patients gettting them because of potential future kidney problems really isn't correct.

I had reasonable control before I got the pump (around 7%) but used the section of the guidelines that refers to "disabling hypos" to secure my pump - my view is that any hypos interfer with my life and my ability to do my job effectively. I have to admit, I went through the guidelines and worked out how I could make myself fit the criteria before I discussed it with my Dr.

If you're still interested in a pump, try contacting INPUT - they have some good advice on how to obtain pumps and can offer one to one advice in some cases - http://www.input.me.uk/index.php?page=how-do-you-obtain-a-pump

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Permalink Reply by Ruth Evans on March 1, 2008 at 4:50am

I've been thinking about asking to try a pump for a while. It really seems to depend alot on where you live. I've just moved to a new area (not a great one for getting a pump though) so I don't think it will be easy. I think a campaign sounds like a good idea! Maybe we can swop tips on how we are getting on?!

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Permalink Reply by Rebekah Humphrey on March 1, 2008 at 12:28pm

I agree. Why should it be that you have to live in the 'right' area just to get a pump. There is a goup which have been helping people get on the pump. I think we could work with them and perhaps organise a march in London or something. Make people aware.

I know that there are a lot of diabetics that have never even heard of the pump.

It isn't about everyone getting on the pump. It is about everyone knowing about it and beng given a choice.

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Permalink Reply by Dee on March 3, 2008 at 9:53am

I also agree - according to http://www.insulin-pumpers.org.uk/ as long as you follow the criteria there should be no problems with funding in the UK. They ask you contact them if you have had problems with funding.

We should definitely keep posting tips/updates etc to see how this goes for us. If any of us are rejected for funding then we should start the campaign then!

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