Blood glucose sensors delay in Norfolk and Waveney

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Southstander

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Type 1
I hope this ok to post. I live in Norwich where NHS commissioners have decided to delay the implementation of NICE's recommendation that blood glucose sensors should be available to all Type 1s on prescription, pending a 'business case' being assembled at a date to be confirmed. The CCG has said on local radio they don't know if they have the money to pay for what I have found to be a fantastic step forward in diabetes treatment.

This is extremely disappointing and a slap in the face for type 1 diabetics. Norfolk has always had a poor record in providing sensors and now we are likely to slip to the very bottom of the table as others around the country implement the NICE recommendation (we are currently second from bottom).

I have raised this with the commissioners and local media in recent weeks. Healthwatch Norfolk are now interested and are asking type1 diabetics who are annoyed about what has happened to email their viewpoint to enquiries@healthwatchnorfolk.co.uk, You can also call on 0808 168 9669 (Monday to Friday 10am to 4pm).

So if anyone in Norfolk and Waveney is reading this, please spend a couple of minutes to let Healthwatch know what you think.

I am funding the sensors privately, but there will be thousands of type 1 diabetics who currently can't afford to buy this life changing technology and will now have to wait further while our CCG deliberates. We need to pressure the powers that be to fund them as NICE intended when it made its recommendation.

Thanks.
 
It’s confusing how this all works, and why when the research is done and guidelines published the individual CCGs then seem to duplicate the work.

Where I live, the Libres aren’t yet available to T2 who meet the nice guidelines because the CCG is doing their own review to decide what the criteria will be to be eligible for them locally. These things shouldn’t vary locally, frustrating for you to have to wait and self fund because of your postcode.
 
Frustrating isn't it? I naively thought that a NICE recommendation would translate into action locally. It is meant to be a National Health service after all!
 
Saoirse said:
Can I suggest you write to Dr Partha Kar (who is amazing) in Portsmouth about your experiences drparthakar@gmail.com. he has been leading on diabetes tech nationally and is very clear that the *only* criteria for access to flash cgm is having T1D. hope you get better news soon
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Worth a try, but in this case the CCG has considered it and is worried they don't have the money. I suspect he gets a quick resolution where it's a case of persuading a consultant of the benefits, but persuading a CCG probably takes a bit longer.
 
Bruce Stephens said:
Worth a try, but in this case the CCG has considered it and is worried they don't have the money. I suspect he gets a quick resolution where it's a case of persuading a consultant of the benefits, but persuading a CCG probably takes a bit longer.
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I’m not suggesting Dr Kar can get the OP a sensor directly. However he is the national lead and can ask questions as to why agreed, evidenced, prescription is not being implemented. Flash cgm is now prescribablefor T1D. There are no other criteria. Your ccg does not have any reason not to prescribe it.
 
Thanks everyone for these helpful comments. I am in touch with Partha, who I agree, is an absolute legend. He has even offered to go through the CCG's books and find the money for them, but there is zero chance of that happening because of NHS politics. He is the only clinician to have spoken up so far. So I am doing my own campaigning with media coverage, letters to my MP another activities etc which is interesting but a bit draining. However, I'm not going to give up and we will get what we deserve...eventually. I had hoped Diabetes UK might take the issue up, but so far, despite a series of calls, I have had nothing back. I'm going to approach the Chief Executive direct if I don't hear anything shortly. I am due in clinic this month (no appointment letter as yet) and will raise my case individually but I already know what the answer will be because by self funding my blood sugars are quite good. So I either give up and make my condition worse or carry on paying out £100 a month. All a bit Catch-22!
 
Southstander said:
Thanks everyone for these helpful comments. I am in touch with Partha, who I agree, is an absolute legend. He has even offered to go through the CCG's books and find the money for them, but there is zero chance of that happening because of NHS politics. He is the only clinician to have spoken up so far. So I am doing my own campaigning with media coverage, letters to my MP another activities etc which is interesting but a bit draining. However, I'm not going to give up and we will get what we deserve...eventually. I had hoped Diabetes UK might take the issue up, but so far, despite a series of calls, I have had nothing back. I'm going to approach the Chief Executive direct if I don't hear anything shortly. I am due in clinic this month (no appointment letter as yet) and will raise my case individually but I already know what the answer will be because by self funding my blood sugars are quite good. So I either give up and make my condition worse or carry on paying out £100 a month. All a bit Catch-22!
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Sounds very frustrating and just the sort of thing that Diabetes UK should be getting involved with!
 
Southstander said:
So I either give up and make my condition worse or carry on paying out £100 a month. All a bit Catch-22!
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That certainly shouldn’t be necessary! Even under the old mandatory NHS England criteria, one qualification for access was having seen improvement in BG results from previous self-funding.
 
Update: Diabetes UK have contacted today me to say they are aware of the issue in Norfolk and Waveney and they are holding a webinar next month with NHS England for commissioners etc in the East of England to highlight the importance of the new NICE guidelines. It is hopeful this will lead to a change of position. So hopefully some movement there. My MP is also raising his concerns with the Ministry. Of course, this should not be necessary, but fair play to Diabetes UK for stepping up.
 
Southstander said:
Update: Diabetes UK have contacted today me to say they are aware of the issue in Norfolk and Waveney and they are holding a webinar next month with NHS England for commissioners etc in the East of England to highlight the importance of the new NICE guidelines. It is hopeful this will lead to a change of position. So hopefully some movement there. My MP is also raising his concerns with the Ministry. Of course, this should not be necessary, but fair play to Diabetes UK for stepping up.
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That is good news. Have to say I'm a bit astonished that it seems the CCG commissioners have the right to disregard NICE guidelines if they feel like it. I wonder what the legal position is about that.
 
This just represents everything that is a waste of money - the existence of local CCGs who determine what can be prescribed. They don’t see that if their salaries didn’t exist, they could find the money. Such unnecessary organisations don’t exist in Scotland, so you are as likely to get CGMs prescribed in Shetland as in Gretna. ( that’s two days travel).

Just as an aside, I saw an advert for nurses to work in Scotland because they are better paid than in England ( as are the doctors). NHS England is just a morass of managers who try to run it as a business, but it isn’t that - it’s a public service.
 
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