When enough is enough?

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Sugarbum

Sugarbum

Well-Known Member
Relationship to Diabetes
Type 1
Hi guys,

I have been on here long enough now, I feel its time to be bold and start my own thread!:D

I was actually after some advice...
As I itterated when I joined in my hello message, I am struggling with my pump referal, and to be quite honest, now its getting me down.

The story is as goes.....
I have wanted a pump now for at least 1 and a half years, done a lot of research and have my sights set on one. I managed to get myself referred for the DAFNE course as a pre-requesite for the pump and I was very excited to have one notch on my belt. During the DAFNE course I came back on the DSN radar, as I wouldnt normally have seen one. She supported me fully in the pump, thought it would be great for me as I dont have a regular routine.

After the DAFNE I attended my doctor review. Yet again, I see another different doctor (story of my whole diabetic career!), who AGAIN would not refer me as he didnt know me. Told me he would write to me, and didnt bother. It was a bad consultation over all and my hope plumetted. I started seeing the DSN, I aired my frustrations as I wanted to complain to my so called Consultant :confused:and drop out their service. Afterall, we know my GP would have me back to do HbA1c's as thats another of his boxes ticked for funding:eek:! I was getting narked.

Now I am still waiting for my pump clinic referal, I emailed my DSN about it again the other week, its in the pipeline....still havent got it. I have my doctor appointment in May, my DSN has told me she has made sure this will be with my Consultant :eek: its true!

I just dispare....month by month passes.....nothing materialises....I want it really badly but Im running out of steam.....if I turn up in May and the appointment turns out NOT to be with my consultant I shall just leave. GRRRRRRRRRRRRRRR.

Sorry, that turned out to be the whole long winded story of my wilting pancreas. Perhaps it will just help to know I have it aired to people who most likely understand my frustrations. To my friends try and explain it is like being a 'Human ping-pong ball'. I think there is only so many knocks I can take, so many times I can chase things up, call, email and have my hopes dashed, before I say it "enough is enough".....
 
Hiya,
What you do is write to your consultant, cc to DSN and GP.
Point out that you have followed all the requirements as requested but.............. No pump.
Ask when you can expect to see the promised pump/start date for training.
Also contact INPUT
http://www.input.me.uk/index.php?page=contact-input

The consultant has to reply to your letter.

John Davis at INPUT will advise the best way to phrase the letter.

No1 rule though is do not give up.
 
Hi

Yep I agree, John Davis at INPUT is fab. I've met him loads of times now and he is fabulous, he has helped loads of people get pumps.

I would write a letter like Sue says as well. But did you know you don't have to get a referral from the hospital consultant. Your GP can refer you. I got a bit confused as to who your care is under as you mention both GP and consultant. If you can prove to your GP that you qualify for a pump (check out the NICE guidelines) then he can just refer you to which hospital you want to go to. Find out the best hospital that pumps nearest to you or at least accessible, it doesn't have to be your nearest one. It really is a post code lottery.

We were told by Gt Ormond St when my daughter was 6 months old she needed a pump. Back then you had to have your local hospital back you but they refused point blank so we struggled on. Finally we decided to go elsewhere and under the guidance of GOSH were sent to the hospital with one of the best clinics for children in the UK so we were chuffed.

Contact John or Debbie at INPUT. They have a new website
http://www.input.me.uk/
 
Thanks Sue, that is great advice and I have just constructed an email to INPUT informing them of my woes, hopefully they can assist.

Adrienne, I am under the care of the Diabetes clinic at the hospital. I did know I could go back to my GP for a referral but unfortunately he isnt keen on giving me few more test strips, so Im unlikely to get a pump worth a few thousand! I appreciate what you are saying though.

I find it hard as well becuase i compare myself to others in my DAFNE group too. There are 2 other people in my group who were referred, neither of them had considered it before the course, one was referred straight after the course, saw the professor and turned it down, and the other started on a pump 4 weeks ago. I know its individually assessed, but both of those friends see a consultant and I think this is key to getting where you want to go.
 
Sugarbum said:
Thanks Sue, that is great advice and I have just constructed an email to INPUT informing them of my woes, hopefully they can assist.

Adrienne, I am under the care of the Diabetes clinic at the hospital. I did know I could go back to my GP for a referral but unfortunately he isnt keen on giving me few more test strips, so Im unlikely to get a pump worth a few thousand! I appreciate what you are saying though.
It is your right to be refered to who ever you want. If no joy from your current consultant go elsewhere. That's what your GP is for. Your GP has a legal obligation to keep you safe if this means extra test strips he must give if you are on insulin, as you obviously are.

I find it hard as well becuase i compare myself to others in my DAFNE group too. There are 2 other people in my group who were referred, neither of them had considered it before the course, one was referred straight after the course, saw the professor and turned it down, and the other started on a pump 4 weeks ago. I know its individually assessed, but both of those friends see a consultant and I think this is key to getting where you want to go.
Click to expand...
Is this the same consultant that you see? If not there's your answer ask for a referal if not.

It took me a year of banging my head against a brick wall before I got my funding. I am funded through my GP though and have no contact with hospitals or consultants. A lovely Gentleman in the USA sent me his 6 mth old pump as he wasnt using it anymore. With the help of my GP's letter writing etc I was able to self fund until I won my battle with the PCT for funding.
The help and advice I had from John Davis and Lesley Jordan from INPUT was A1 and without their help I suspect I would not have succeded.
It is believed I am the 1st in the country to be funded via a GP.
I would class my GP as 1 in a million he went way beyond the call of duty in fighting for my funding.
 
OMG! A reply from John at INPUT already in my inbox!!!!

He also has told me to get my GP on it and has sent me an advocacy pack and will phone me on wednesday when he is next in the office. He is obviously familiar with the territory as he referred to the prof I am trying to get referred to by first name....

I shall do that. I am going to try and be positive and with the INPUT support perhaps I can get back on my game again.

Cheers guys.....
 
Wow that's great, John is brilliant.

However its not up to the GP whether you get funding for a pump or not and it doesn't come out of his budget. He can refer you to a consultant (this prof you want) easily. As soon as a consultant tells not asks, the PCT you need funding for a pump, the PCT cannot refuse. They have to give you funding, it is the rule.

Keep us posted what happens. John is the way to go. He will tell you the easiest (although as we all know nothing is easy) to go.

Good luck
 
Adrienne said:
However its not up to the GP whether you get funding for a pump or not and it doesn't come out of his budget. He can refer you to a consultant (this prof you want) easily. As soon as a consultant tells not asks, the PCT you need funding for a pump, the PCT cannot refuse. They have to give you funding, it is the rule.
Click to expand...

A GP can ask for funding for a pump.
Mine did and got it for me from the PCT.
The wording of NICE guidelines have been changed, which makes this possible
 
Hi

Thanks Sue, I didn't know that.

Think its maybe different for children then. The NICE guidelines changed for children last July but not sure they mention GP's, I'll have to have a look now, you have me intrigued.

So if a GP says to the PCT this person needs a pump, I am presuming it has the same clout and the PCT cannot refuse. Does it however have any impact on the GP's budget? I would think not and hope not.
 
Adrienne said:
Hi

Thanks Sue, I didn't know that.

Think its maybe different for children then. The NICE guidelines changed for children last July but not sure they mention GP's, I'll have to have a look now, you have me intrigued.

So if a GP says to the PCT this person needs a pump, I am presuming it has the same clout and the PCT cannot refuse. Does it however have any impact on the GP's budget? I would think not and hope not.
Click to expand...

Hi Adrienne, The funding comes from the PCT as is normal for pump funding.
My GP just wrote and told my PCT he takes full clinical responsibility for me being on the pump.
The GP is not mentioned in the guidelines. But the word NORMALLY is regarding the setting up of pump therapy. That was the lever used. :D
 
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