Please please please do not give up.I was utterly miserable for about two hours after reading the announcement: I’ve been asking for a pump for the last ten years or more and refused each time.
I won’t be one of the 150,000. Too old. HbA1c under 7.5. Not pregnant. Only 103 hypos over 90 days. Highs rarely greater than 12.6 despite Libre 2’s unreliability once numbers pass 9
So after 54 years of the relentless 24/7 it’s just get on with it, more of the same.
I’m really glad, however, that the tech will be available to more people. I wish it were there for all, but what a relief for all who’ll be given it.
It took me over four years to get a pump even though I'd been put on the pump programme by the clinic and they had written numerous times to the then CCG for funding. The situation was complicated by living in one NHS trust and the clinic being in another. In the end it was the strong intervention of one of the GPs at my practice that got the funding. He was very persistent with them and I recommend that as a course of action.Please please please do not give up.
I truly believe that if you shout and continue shouting that you will get one, I had to push against rejection for mine, I built a strong relationship with my DSN which really helped, my main case was based on NICE guidelines on the basis that it was 'affecting my quality of life' I was micro managing, had made some fundamental life changes to cope with my T1d and this proved to be strong enough to win my case, you need to get your armour on and go into battle, but do not give up, perseverance is key.
It took me over four years to get a pump even though I'd been put on the pump programme by the clinic and they had written numerous times to the then CCG for funding. The situation was complicated by living in one NHS trust and the clinic being in another. In the end it was the strong intervention of one of the GPs at my practice that got the funding. He was very persistent with them and I recommend that as a course of action.
On my second pump and never looked back.
-R
Please please please do not give up.
I truly believe that if you shout and continue shouting that you will get one, I had to push against rejection for mine, I built a strong relationship with my DSN which really helped, my main case was based on NICE guidelines on the basis that it was 'affecting my quality of life' I was micro managing, had made some fundamental life changes to cope with my T1d and this proved to be strong enough to win my case, you need to get your armour on and go into battle, but do not give up, perseverance is key.
Will pm you, that's a silly wait time..My quality of life is most definitely affected. I suspect that the local CCG, which is notoriously tight fisted, will be burying its loot following the announcement, but I’ll keep trying.
I know the surgery’s DSN is good. However, I’m already on a long long waiting list to see a Consultant: having to hang on til end of September 2024! Waiting time 44 weeks - and that’s following the six weeks between request and reply!
I think this is amazingly exciting news for many T1s, albeit far from all of us. But the proof will be in the cooking - does this 5 year rollout actually start and stay on track? Sadly the NHS is drowning under so many unfulfilled initiatives. Fingers and toes crossed!The 5 year roll out on this has got to be better than the 10 year (mirage) wait for the “cure..”
I would agree..I think this is amazingly exciting news for many T1s, albeit far from all of us. But the proof will be in the cooking - does this 5 year rollout actually start and stay on track? Sadly the NHS is drowning under so many unfulfilled initiatives. Fingers and toes crossed!
@Jaylee How frustrating - sounds a waste of your time and that of the endo! Unless do you use a CGM and share that with the diabetes team? My reviews (I self fund a G7) follow a typically pattern of my endo being mostly unhappy with my hypo pattern, but he is also super helpful with my general health markers which is where I feel for you with not having bloods done in time to discuss with the endo. Do draw up a list of general questions re your blood results for your DSN especially liver and kidney function, plus follow up with GP if not satisfied with advice.I would agree..
I can’t ever make sense of what my team is doing. Got a phone appointment with an endo early next week.
But I’m not getting any blood work taken with the usual till the week after..??
Oh, then a DSN is going to ring the week after that.
I’m thankful I got nothing serious going on..
Gotta very much agree with this, it can still take a lot of work - probably a lot more for some than others - I'm the slighter older 670g automode and it does require a fair/large amount of attention - even when I dont think I've done anything wrong it can still be chaoticWhilst the news of this closed loop tech becoming more accessible is fantastic, it is still not a cure and cannot be campaigned as an artificial pancreas solution. as someone who uses it already and has done for the past almost 3 years, I still have to cope with highs/lows and when things go wrong they can very quickly go wrong. I still have to do alot of work to keep myself in range, I am lucky if I get 70% TIR per week, in fact I am more so between 60-65% each week which is below NICE guidelines.
If you are already achieving a good TIR on injections or pump therapy then you're doing brilliant, but please don't view this as a magic solution to perfect control.
Yep, to elaborate my agreement.Whilst the news of this closed loop tech becoming more accessible is fantastic, it is still not a cure and cannot be campaigned as an artificial pancreas solution. as someone who uses it already and has done for the past almost 3 years, I still have to cope with highs/lows and when things go wrong they can very quickly go wrong. I still have to do alot of work to keep myself in range, I am lucky if I get 70% TIR per week, in fact I am more so between 60-65% each week which is below NICE guidelines.
If you are already achieving a good TIR on injections or pump therapy then you're doing brilliant, but please don't view this as a magic solution to perfect control.
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