Paging Dr. Ghost: What to Do When You’re Not Getting the Support You Need From Your Child’s Diabetes Team
Let’s start with this: you are not overreacting.
Managing your child’s Type 1 feels like a full-time job, a part-time panic and an unpaid science degree. When you finally reach out for help- whether it’s about blood sugar chaos, pump problems or just a “why is this happening” spiral- you deserve a team that shows up, listens and supports you.
But what if they don’t?
What if your emails go unanswered, your questions feel brushed off, or you’re always waiting weeks for appointments?
You are not alone- and you’re not stuck. We’ll help you get the support your child needs, even when the system makes you want to scream into your coffee mug.
First, Let’s Talk About The Rage (Its Valid)
That frustration? That “I’m doing this mostly alone” ache? Yeah. A lot of parents have been there.
NHS diabetes teams are often lovely- but they’re also underfunded, overstretched and sometimes just not equipped for the level of day-to-day support you need (especially with a toddler’s tantrum-hypos or teen-growth-spurt insulin mayhem).
But knowing that doesn’t make it any less maddening. So let’s take that energy- and channel it into action.
Step 1: Check What You’re Entitled To
Your child should have access to a paediatric diabetes team which includes:
Consultant
Specialist diabetes nurse (DSN)
Dietitian
Psychologist or mental health support (in theory, at least)
You’re entitled to:
Regular clinic reviews (usually every 3 months)
Emergency support during illness or ketones
Help with school plans (IHPs, staff training)
Advice on tech (pumps, CGMs, Libre etc.)
Emotional wellbeing support for the whole family
If you’re not getting these, it’s time to speak up.
Step 2: The Polite-but-Firm Email Template
No one likes chasing professionals, but a clear, direct email can work wonders. Try this:
Subject: Follow-up: Support for (Child’s Name)-(NHS Number, if known)
Hi (Nurse/Consultant Name),
I hope you’re well. I wanted to follow up as we’re currently feeling a little unsure about next steps in managing (Child’s name)’s diabetes. We’re finding it challenging to (insert issue here- e.g., manage hypos, get tech advice, understand basal rates, support mental health).
We’d really appreciate some support or guidance- either by phone, email or a quick review appointment.
Thank you so much for your time and everything you do.
Best,
(Your Name)
(Your Contact Info)
Feel free to add “I appreciate how stretched the service is” if you’re in a diplomatic mood- or don’t, if you’re feeling a bit done.
Step 3: Phone a Friend (aka the PALS Team)
If things still aren’t moving, reach out to PALS (Patient Advice and Liaison Service) at your hospital. They’re basically the NHS’s built-in complaints-and-fixes department.
You’re not being dramatic. You’re advocating for your child. PALS can help resolve communication issues, get you a new point of contact, or move things forward when you’re stuck in the “no reply” loop.
Step 4: Get a Second Opinion (Yes, You’re Allowed)
If something feels really off- like advice that contradicts national guidelines, or serious gaps in care- you can request a second opinion or a referral to a different hospital’s diabetes clinic. You’re well within your rights.
Sometimes just switching to a new nurse or clinic can change everything. Fresh eyes. Better vibes. More support.
Step 5: Build Your Backup Crew
While you wait for better support, build your own dream team:
Online Communities
T1D UK Facebook Group- brilliant for parent-to-parent tips
Diabetes UK Support Forum
Children with Diabetes UK- events, resources, real talk
Helplines
Diabetes UK Helpline: 0345 123 2399 (Supportive, knowledgeable, not just for adults!)
Educational Resources
Digibete- videos, carb counting, mental health support
MyType1Diabetes- NHS-backed info hub
How to Cope Emotionally While You Wait
Vent somewhere safe. Talk to another T1D parent or write it all out in a journal/WhatsApp rant/sweary notes app entry. You’re allowed to be fed up.
Celebrate the small wins. A perfect pre-bed range. A tantrum-free injection. A non-diabetes day out. You’re doing more than enough.
Remind yourself: Your child is thriving not just despite your support- but because of it.
You are the glue. The tech support. The chef. The sleep-deprived pancreas. And when the system lets you down, you still show up.
Final Word: You Deserve Better Support (And You’re Allowed to Ask for It)
Don’t let politeness stop you from pushing for better care. Don’t let guilt keep you from asking for more time, more answers, or more help. And definitely don’t let a bad experience make you think this is just how it has to be.
You and your child deserve a team that doesn’t just tick boxes- but actually makes this daily grind feel a little more doable.
And if no one’s told you this lately: you’re doing a phenomenal job. Even when it feels like no one’s got your back- you’ve always had theirs.