New here...caring for my son and daughter

Hi my name is Lisa
I was advised to come here for advice and support.
My son that is 9 years old had open heart surgery at 6 weeks old bit since then has had knock on effects…he still has multiple holes in the heart leaking valves etc also he is still incontinent at night needs to wear tens machine aswell as have medication also has to have enemas every night on top of all this he is so hyperactive, destructive and cannot be left alone absolutely anywhere but still trying to get him assessed but it’s a nightmare…then there’s my 3 year old, she has pulmonary stenosis, hypomobility and hypoglycemia, her heart is stable and she’s doing well there however her hypoglycemia is hard to manage she often ends up going to hospital as her blood sugars drop so quickly it’s hard to maintain and she ends up not responsive, her poor little legs often give way due to her hypomobility and often ends up in a pushchair due to the pain…they are both under lots of different consultants and after all this the DLA have turned us down for my son so far and still waiting to hear about my daughter…i don’t know what to do!?
Between them they are under 7 different hospitals only 2 being local…

Hi Lisa - you really have your hands full!

The DLA decision certainly doesn’t sound right for your son - I’m not an expert but the care issues for both your children seem to fit what I understand of the criteria, so it’s worth seeking help with that. The CUK Helpline is able to help - because of the time you spend on your kids’ needs I’d suggest email rather than phone, to begin with. You can take your time and go back to it when there have been interruptions, which you can’t do on the phone. should get you there.

Dear Lisa
Welcome to our forum, you’ve certainly come to the right place to connect with other carers who will understand what you are going through. I would suggest, like Charles, to contact our helpline and see if they can advise you. Also aside from this we also run weekly online zoom sessions where carers come together to support each other, share advice and be there for each other. Please have a look at the sign up page and see if it something you might be interested in, there’s no pressure to share anything you’re not comfortable with. Here’s our online session info: care for a cuppa Online meetups | Carers UK
with all good wishes

Goodness Lisa,

you have your hands full.

Is your son in school? Does your daughter attend nursery?


Hi LIsa, you must be utterly exhausted.
Has anyone ever mentioned NHS Continuing Healthcare to you? It’s unusual, but not impossible, for children to be entitled to it. Google the “NHS Continuing Healthcare Framework”, there is a checklist for an initual assessment, then a longer assessment. Maybe one of the hospitals your son attends can help with an application.
As for him being turned down for DLA, be sure to appeal.
Long ago I supported a double amputee to claim. His application was refused as he didn’t need enough care. That tells you everything about the person reading the form!! He reapplied and was granted.
Have you had a Carers Assessment from Social Services, and have both your children had a Needs Assessment from SSD?

Thank you for replying he does attend school Andy daughter attends nursery I am still waiting to hear from DLA for my daughter:-)

Thank you for taking the time to reply to me I will most definitely be appealing it and I will contact carers uk for advice. Thank you :blush:


are they on ‘Early Help’ or do they have EHCP’s?


Hiya yes we have early help support worker and recently had a cdc referral bit no EHCP :slight_smile: X