Any tips on getting funding from PCT for s/c pump

I have been on subcut Terbutaline for about a month now and the results have been brilliant. I feel like I have my life back - with a few modifications! I have a McKinley T34 which works well apart from the annoying beeps for almost an hour before the infusion ends. I have seen the Cane Chrono pump online and was thinking about applying to my PCT for funding. I don't really hold out much hope of getting funding, but does anyone have any tips they can give me? Thanks.

[KateMoss]

Hello Val,

Glad it is working for you.

Is your current McKinley provided for you on a long term basis?

I only have a Graseby on long term loan, not got the option at the mo of getting any upgrade so to speak.

I haven't had to apply for a pump as of yet so can't advise here.

The Chronos are very good but they need their own brand of syringes as they are so compact. This will need to be factored into the costings too as well as the pump. Whereas Grasebys & McKinleys will / should take any syringe as long as it fits and you can alter the settings.

Kate

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Hi Kate

Thanks for your reply. I have the Mckinley on long term loan. The only problem I have with it is the beeps! I have spoken to McKinley and apparently it has an old version of the software. My other hospital (I am under 2 consultants) have said they could supply me with a Graseby if I can't sort out the beeps. I was just hankering after the size of the Crono and thought it might be worth a try to get them to fund one, but I rather doubt that they will.

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Good luck,lucky you have your Mckinley in these desperate financial times, I had to fight for the best part of 12 months to get my Graseby. It's not a matter of what we like it is a matter of what we can get funded!

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UPDATE

I am still doing really well with the subcut.

I saw my consultant yesterday and they have been told not to give out pumps to people in the community. I don't think they are immediately going to take it off me, but I do now need to apply to my local pct for funding. Does anyone have any advice they can give me?

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Glad it's still working for u .... Im having success withit also... I have the crono Pump from hospital... Pct was to fund syringes and all other stock.. Seems noone in pct can sanction purchase of the stock so back at thr hosital to supPly all. Wasn't a problem til resp team where moaning about costs and budgets just hope they don't pull the Plug as still on a trial basis ....

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Just to be nosey, what r these pumpy things?

X

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charlie_warlie, they're a continuous subcutaneous infusion of terbutaline (Bronchodilator aka Bricanyl) using a small portable infusion pump (aka syringe drivers) such as Graseby pumps.

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Are they any good...or better than inhalers/nebs...my cons is wanting me to do methotrexate etc and that scares me. .. So im trying to find other options first!!

X

[KateMoss]

Charlie, sub cut infusion of Bricanyl (or Ventolin in my case) is used as a last resort when all other meds / avenues have been explored.

I wouldn't say it is better than nebs or inhalers if they work for you anyway.

It is a bit like having it IV though in a lower dose and at a constant dose.

It doesn't work for everyone and you can become tollerant to it, needing more.

I am using it all the time at the mo, and still need nebs, steroids, preventers, theophylline, singulair O2 when needed etc etc etc. I try to keep it to a minimum and ween off it where possible.

Basically it keeps me out of hosp as much as possible. I was started on it back in 1994 when I was spending over half my life in hosp on IV ventolin..........

Kate

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ditto Kate Moss, same here, about to go through the funding process for a new pump, hoping for for a replacement Chrono Pump

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thank you!! I know when I mentioned it before the asthma nurse wasnt all that keen on me going onto it and wanted to try every option posible...but they have also mentioned that they are running out of solutions...fingers xd the steroid nebs ive been on for a few weeks are going to start sorting me out soon...cons said it would take about a month before they become properly effective :S

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UPDATE

Just as a matter of interest, does anyone know how long the PCT funding process takes?? The hospital which loaned me the McKInley have been told by their medical supplies dept not to loan out pumps to community patients and so said that they would need it back. My GP put in an application to the PCT for funding in July and was trying for a Crono for me. Since then the McKinley pump stopped working so I had to return it. My local hospital has loaned me a Graseby, which I have to say is very easy to use and doesn't have the annoying beeps and is slightly smaller than the McKinley, but it won't deliver my full dose of Bricanyl.

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For my Graseby it took 9 months, and I am about to go through the funding process again for another pump, glad to know I am not the only one stuck in the community with a loan Graseby that doesn't work properly

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UPDATE

Just found out that the pct refused my application. My GP has spoken to my consultant who is going to fight my case.

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Oh no, Valj, that's rubbish news. Glad your doctor is going to fight your corner. Wish I had any advice to offer, but it's rather out of my sphere of knowledge! Do let us know how you get on!

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Hopefully things will stop being such a lottery and dependent on where you live. I'm in a similar position & need a specialist anti fungal drug. Was initially given funding for 6 months but am now applying for it long term as it's made such a difference. I know my docs are relating my application to the amount of money it saves ie no long hospital stays or trips to A&E & more importantly the chance to go back to work which seems to be the governments aim for everyone. Do you have any infoike this which could back up you application?

It's a horrible position to be in. I was told that if I came under one of the other PCT's my docs wouldn't have even tried as they knew there was no money. Maybe persistence will pay off & hopefully they won't have spent all of this years budget.

Fingers crossed for a positive outcome.

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Hi Rabbit

Yes I had all the evidence, before and after peak flow charts, I wrote a letter to my GP to support my application, reduction in sick leave etc. The worst of it is that I actually work for the NHS locally to where I live and until July when there were some reshuffles I worked for the same pct that has just refused my application. My GP had offset the cost of reduced medications, and A&E visits against the cost of a pump, but it seemed to fall on deaf ears. at the moment my asthma is playing up big time so I am off sick again and feeling so awful that I can't feel too upset about it.

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The snag is probably the fact that you have a working T34 Mckinley all be it annoying at times. The reason why my GP is going for funding for a new syringe driver for me is that my Graseby will be phased out and have to be replaced plus the back up system doesn't work as in when my needs servicing all repair very often there isn't a replacement. The new chrono if I was to be granted funding has a good service history and back up system.

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Sorry to hear about your application being turned down. At least you have the McKinley. I waited 11months to get funding for my McKinley and though the size is awkward it is making such a difference I'm just glad to have got the funding. My McKinley doesn't have annoying beeps though, just a couple of very soft beeps right before the syringe finishes. If it's a software thing can they load new software to your syringe driver?

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Katina

Thanks for your reply - thing is I don't have a working MckInley any more as it packed in and I had to return it. I have a Graseby on loan from my local hosp. but it won't deliver my full dose without splitting it into two and changing the syringe twice a day. I was told that the Graseby won't take 30ml syringes, but it seems to me that it would if only filled to 20 ml which is what I need. Do you know if this is right??

[KateMoss]

Hello Val,

When a 30ml syringe is filled to only 20mls, does it still fit in the driver? I haven't used 30ml syringes before,

Only 20mls (With 15mls in) or 2 x 10mls at double rate....

Kate