Off to see my MP

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pottersusan

pottersusan

Well-Known Member
Relationship to Diabetes
Type 1
On Friday (provided there are no national disasters, on which I wouldn't place any money!) I'm off to meet my MP, Oliver Letwin, in my quest to get an NHS funded CGM. I'm told he is a good constituency MP. I'm hoping he will write to my diabetes consultant, with copies to lots of people like the Dorset Clinical Commissioning Group, in support of my case.
I understand that the Tories are meant to be launching a Diabetes Strategy next year, so will be mentioning that too.
It will be an interesting experience, but also, hopefully, a productive one.
 
Best of luck Susan. Mention that you're posting this experience on this site and others will be watching the outcome closely! 🙂
 
Good luck Susan! 🙂 Hopefully, you won't have to meet him alone (if you know what I mean 😉)
 
Good luck and hope its the right out come.
 
Hi Susan, has your consultant tried to get you funding or refused to submit a funding request? Do you know if there are any other people at your diabetes clinic who have CCG funding in place for a cgm?

I hope you get some positive help from the Right Honourable gentleman.
 
good luck, I hope you get everything and it works out well for everyone
 
Flower said:
Hi Susan, has your consultant tried to get you funding or refused to submit a funding request? Do you know if there are any other people at your diabetes clinic who have CCG funding in place for a cgm?

I hope you get some positive help from the Right Honourable gentleman.
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refused to submit a request 'cos the nhs aren't funding them... Untrue😡
He's already had a letter from my surgeon telling him to stop messing up my life ( very politely:D but pointedly)
 
I look forward to your report on the meeting, I hope it will serve to put more pressure on that consultant and get the desired results.
 
Good luck today Susan! I hope he gets right behind you in your campaign! 🙂
 
Good luck from me too!🙂
 
pottersusan said:
refused to submit a request 'cos the nhs aren't funding them... Untrue😡
He's already had a letter from my surgeon telling him to stop messing up my life ( very politely:D but pointedly)
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Well in all honesty that's not the NHS refusing to fund them it's the consultant refusing to do the paperwork.
Once the request has been denied by your CCG then you will have a ammunition. All you could be doing now is putting your endo's back up and make him feel he can't work with you.

I applied for sensors via my GP the answer was no as no one else had got them so it wasn't fair on anyone else if they gave them to me. GP did point out it was doubtful there were many type 1's with diabetes and Addison's and he had never heard me say it wasn't fair.
Lucky for me I looked on the charities site and applied for help from one of those the request was granted within days.
 
Well, I arrived early (I'm always early) and Oliver Letwin was ready and waiting. He was slightly taken aback by the DF but recovered well. He'd done his homework and understood why I was there. After questions and reading my surgeon's letter of support, which he described as 'very strong', he suggested that I ask my diabetes consultant again to apply for a cgm or even supply sensors for my 2nd hand cgm. If he refuses, I should contact Mr L again and he will write direct to the CCG for Dorset, bypassing the consultant.🙂
This is what I was hoping he would say. He certainly thought I a good case.

The Tory Diabetes strategy being published next year is basically a T2 strategy. I pointed out that it must be made clear that being overweight is not the only reason for T2 - not all T2s are overweight and not everyone who is overweight is T2 - as we all know very well, but Jo Public doesn't.

He looks a tad uncomfortable in his photo with the DF, but he did it willingly. :D

I must admit I was more impressed than I expected. I might even vote for him next time! 😱
 
Sounds like good progress Susan 🙂 I hope the consultant agrees finally - it's nonsense that you have been through all that you have for them to deny you what amounts to a few pounds in the scheme of things, but which would make life so much better for you.
 
Mr Letwin was astonished at my surgeons letter to diabetes consultant. He has obviously read lots of such letters but said that was the strongest he'd seen! I've asked my new GP to write too.
They hope you'll take the line of least resistance, but he's met an immovable object in me.

Mr L was impressed by the joined up thinking of us diabetics sending the DF round the country - so hats off to you. Whether he'll look at her blog I don't know.
 
pottersusan said:
Mr Letwin was astonished at my surgeons letter to diabetes consultant. He has obviously read lots of such letters but said that was the strongest he'd seen! I've asked my new GP to write too.
They hope you'll take the line of least resistance, but he's met an immovable object in me.

Mr L was impressed by the joined up thinking of us diabetics sending the DF round the country - so hats off to you. Whether he'll look at her blog I don't know.
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If you look on the net you should be able to find the info for you ccg on how to apply for individual funding, I know with my ccg the patient can also write a letter to strengthen their case.
 
Pumper_Sue said:
If you look on the net you should be able to find the info for you ccg on how to apply for individual funding, I know with my ccg the patient can also write a letter to strengthen their case.
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Thanks for that info. I'll have a look.
 
Really pleased it went so well, Susan. Here's to a CGM-funded New Year!😛
 
I want to SCREAM 😡

Just got an email from my MP with the response of the Chief Officer of the CCG:

It keeps on about me not being clinically exceptionally different from any other Type 1 😡😡

  1. I'm not Type 1
  2. If I was Type 1, how many other T1's are missing their pancreas, stomach etc?!

Have sent the letter on to INPUT, as they will now get involved.

The letter does admit some shortcomings in the original letter, which is really big of them!

Apparently 'all relevant clinical information was considered' when the decision was made - I would beg to differ on that count. If anyone stopped for a moment and actually thought about the ramifications of all my chronic conditions and their impact on diabetes I would be astonished.

I wonder whether my diabetes consultant will be prepared to do another application or not. I'm due a new pump in May, after which I was proposing to get referred back to my local hospital, who now run a pumping service. So if he won't do it, I'll ask my new consultant to do it. (That potential consultant will be my 6th consultant in 5 years😱)

In the meantime I'll keep restarting the sensors as much as I can🙂
 
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