SVT DLA experience?

[RoseQuoter]

Hi everyone,
I’m just reaching out to see if there are any other mums here whose children have SVT (Supraventricular Tachycardia) or similar heart conditions.

My daughter is 3 and has SVT — she takes daily medication, tires easily, and needs constant monitoring and rest throughout the day. We recently applied for DLA but were refused, and I’m now preparing a Mandatory Reconsideration.

I’d love to hear from anyone with similar experiences — whether your child was awarded DLA or you had to fight for it. Any advice or shared experiences would mean a lot.

Thank you so much 💛

My daughter is almost 5 and has had it all her life. It’s a benign condition on its own and I can’t see why it would affect her lift so much as requiring DLA. From what I’ve seen / read on Facebook groups most if not all people incl my daughter live a normal life and would not qualify for DLA. That is coming from someone who’s had quite complex SVT requiring multiple admissions, hours upon hours of time in resus, appointments galore. We still don’t qualify. Unless there is something else going on that is affecting your child’s ability to carry out normal daily life, I can’t see that you will win. Sorry

Completely different diagnosis but I applied for my daughter for DLA, we successfully got it for ASD. You have to demonstrate care needs - eg what she can't do, show what happens on a bad day eg can she feed herself, go to the toilet independently. Does it affect her day and night. You can get help with the applications from local disability charities, a little tip all local authorities have to have IASS groups for parents and carers of disabled children (they are great for advice and helping with DLA forms) also tik tok, Facebook groups have great tips for doing the application. I heard DLA is getting tougher from some of the Facebook groups that I'm on. But definitely do mandatory, use chat gpt to help. Big thing keep a diary. I found that helped.

“I understand that’s your experience, but every child with SVT is different. Just because some children manage without extra support doesn’t mean others don’t need it. DLA is about care needs compared to other children the same age, not just the diagnosis or how many hospital visits someone’s had. I know what I deal with daily — and I’m doing what’s right for my child.”

“Thank you so much for this — that’s really helpful and reassuring. I’m definitely going to do the Mandatory Reconsideration and I’ve already started keeping a diary. I didn’t know about IASS, so I’ll look into that too. It’s good to know others have had success by clearly showing the day-to-day care needs — especially on bad days. I’m using ChatGPT for support with the wording as well. Appreciate you taking the time to share