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Diabetes team communications

J

JayLucas

Newbie
Messages
4
Hello

My son was diagnosed type 1 in February. I was just wondering how often the team communicate and visit your child. My son has not had a visit for 120 Days and they have not called to check in for 66 days. We have contacted the hospital and even after the meeting with the diabetic psychologist where she said that she would get them to give us a call, they failed to do so . Is this normal? Your thoughts please.
 
Hello and welcome to the forum.
I hope you and you and your son are settling into the new regime? I am not sure how old your son is but if something feels wrong you could call the diabetes department wherever he was first treaded to nudge things along. It would be useful for you to know what to expect particularly in regards to the psychologist and his/her waiting list.
When I see a consultant for my t1, I will typically get a 3 month or 6 month or annual review date set and generated as I leave plus the right forms to get blood tests done for standard checks. I would have thought your son being newly diagnosed would get a 3 month review by phone.
IN the meantime you can post here or call the diabetes UK careline for sympathetic and knowledgeable heads during what must be a stressful time.
https://www.diabetes.org.uk/how_we_help/helpline
 
I'm in Ireland, so different health service. Nevertheless, my care has been disrupted by the pandemic causing:
  1. Hospitals cancelling all outpatient clinics
  2. Medical staff (of all fields) not permitting face-to-face meetings
  3. Clinics run by a skeleton crew, as most work from home
  4. Lockdown (not being able to use public transport, not travelling outside your home county) and
  5. Cyberattacks (unusual sure, but Ireland's health service's IT was shut down after the Russian attack on May 14, and is still under repair)
I haven't had a review in two years, though I'm supposed to have one every three months. They serve little purpose other than for me to talk about my situation and get my meds reviewed. Do you know, my endocrinologist didn't know what The Dawn Phenomenon was until I got into it while we discussed my wakening hyperglycemia, something I'd been trying to deal with for eight years. Diabetes is best managed by you taking the initiative (a NURSE told me that when I said I had difficulty getting help. She actually said "You're supposed to handle it YOURSELF" AND I said "not without SOME assistance. YOU people told me that's what you're here for.") Ahem, always good to vent. You're probably best off meeting people who are in the same boat, parents with diabetic kids. A big part of managing diabetes is learning to anticipate the sandtraps and side-stepping them.
 
You should have a phone number and email address for a DN at the hospital clinic. I would suggest you email through your finger prick readings, dosing and food diary recorded over week for comments, ask for dietary advice, school management advice, exercise management, what funding is available for pumps, FGM, CGM's, a 6 monthly HBa1c, what courses are available etc, etc. You need to chase them.
 
Hi

The pandemic has not affected service, they have never said that and they did visit in Feb when in lockdown. I agree though that they don't know what they are doing. I have learned more from self teaching, like the dawn phenomena. I sorted my sons morning high simply by giving him a pint of water when he wakes up as this satisfies 10 hrs of dehydration and stops the body from breaking food down quicker to obtain water from his food.
 
Hi

I have contact details, when you text them you get nothing back and when you ring the hospital about issues and ask them to get a team member to call you back, they don't. I had a meeting with the Psychologist and she said she would get them to call and it's been a month since the meeting and no call.
 
Maybe try the community DN at your GP surgery? If nothing else she/he will know the hospital team. Ultimately go along in person on a clinic day and make a nuisance of yourself! Your son will likely still have some insulin being made in him but this won't last forever so you need to get him established with regular clinic appointments. It seems as if you're on your own right now and that's not fair or right.
 
In your shoes, I would be pushy and phone them every day until someone returned my call.
 
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