I agree and thankfully you are under a consultant and DSN. I was told by a local community DSN I should be officially diagnosed and be under the care of an endo consultant but my GP/DSN disagree so I only have the absent for the last 2 years DSN! Fortunately I feel a responsibility to keep things under control and have invested in Dexcom but god only knows what my BP, cholesterol and Thyroid are up to?!
I’m so happy you are getting the support you need after your recent diagnosis! I wish you all the luck in the world and when you are offered to go on a T1 Ed course…. Do it! It was an absolute revelation for me and has really helped me to keep things under control. In Kent it’s the Kat1e course but nationwide it’s the DAFNE course. Take the opportunity when you’re offered it because it really will give you the knowledge to control this. x
When you say “my GP/DSN” do you mean the nurse at the GPs surgery who sees the diabetics? Going by NICE guidelines T1s should be handled by the local diabetes specialist clinic. As LADA you are essentially a T1. You are entitled to ask for a referral which should not be refused out of hand as otherwise they are denying you access to technology which can only be prescribed from the clinic. I would put your case in writing.
Hi Patti, thank you for your reply and yes I meant my DSN at my GP surgery. I’m familiar with the NICE guidelines on T1 but when I requested referral to an Endo my request was shot down twice by both my GP and DSN saying it was not an appropriate referral as my care was being provided by my CCG…. Or not as the last couple of years has evidenced!
Excellent that you have had seamless engagement from your healthcare provider despite the rubbish situation that’s been ongoing… Yay for Geordie healthcare!
I’m shocked that your previous DSN had no knowledge of pump usage or education (To be honest I think my DSN would take the same stance) I know here in the U.K. that most diabetes patients needing insulin therapy treat with MDI because that is the treatment that is offered 1st line but the truth is Diabetes treatment has moved on and some patients prefer to pump. I’m pharmacy staff at a children’s hospital and a paediatric diabetes nurse recently asked me about the possibility of pharmacy filling patients insulin pumps (because their doses are so tiny) with measured insulin/Sodium chloride so these patients can easily calculate bolus doses when needed. I am excited!
Don’t they put saline solution into a pump when you first get one, as a practice before you go 'live' with insulin? I’ve seen new pump users referring to it on here.
As @helli says there are trained pump nurses at the clinic I am under at the County hospital, but there are DSNs who have clinics at local cottage hospitals. I was sent to see the one in the nearby town by the Endo as he insisted that due to my low Hba1c I must be having too many hypos. He is a pompous man who, despite authorising Libre does not look at time in range to see that I wasn’t having numerous hypos. As I said, a bit of a waste of time. She did qualify in pump therapy just before she left for another area! I have no idea if she is being replaced, but I have an appointment now with the oump nurse on 23 November to discuss my replacement pump.
With babies/toddlers on pumps their dosing is so tiny that insulin alone would be impossible to dose without being diluted.
Apparently it’s the hospital pharmacy staff that fill the pumps. It’s a trial going on at Alder Hey and another hospital (not sure which one) so I assume that the pumps need filling and replacing every 3 days. My boss is looking into whether this would be financially viable for us to take on at the kiddies hospital I work at in Central London. I think because it’s a trial it won’t be rolled out to Paed nurses until data proves that it benefits the patients but also as pharmacy professionals we need to confirm the dilution is correct and that it can be replicated by other healthcare professionals or in the future, parents. It’s all up in the air at the moment so I look forward to what’s to come (Ie closed looping etc)!
Ok I understand now. I met a couple of actual real life DSNs at the T1 Ed course I did and they were brilliant, really knowledgeable and one of them said I should be under the care of an Endo. I did have doubts about the diabetes nurse at my gp practice when she phoned me to tell me she was going to have me taken off the monitoring register. She called back 2 days later to tell me the spec. Diabetes gp refused her request. Maybe if I were T2 and in remission/well controlled that would make sense but that’s not the case?! Wtf?! I will pluck up the courage to write to my gp asking for a referral. Thank you for your very wise advice @Pattidevans.
