"My baby’s referral goes missing after waiting 6 months"

I’m sad to tell my story . It is a sad time that is filled with anxiety, worry , sadness and pain. Seeing my 1 year old baby not getting the support from the specialists that she needs is soul destroying .

It breaks me seeing her suffer and the system is failing her of no fault of her own .

It started in December 2021 when my daughter was 13 months old and first went onto cows milk. She immediately showed signs of intolerance. She would have explosive diarrhoea within 2 hours of consuming it and a large painful allergy rash appeared .

After taking my Health Visitors (HV) advice and still no improvement A doctor referred us to the dietician in January 2022. I was told there would be a long wait due to Covid but they didn’t know how long.

This wait time came with worry and anxiety. I didn’t know what was best to do with my daughters health. During this time my daughters symptoms worsened and we’ve never had any specialists help .

After 6 months of waiting and me regularly been told to just continue waiting. I was eventually told my daughters referral was never received. I was told it had gone missing. My HV discovered the referral was missing after directly contacting the dietician department .

The dietician has advised we are referred to paediatrics and I’m absolutely devastated to have been told it’s going to be a 41 week wait.

We’ve already waited over 6 /7months and now we are now told to wait an additional 10.5 months .

My daughter has had a wheeze that started around the time of weaning her. Her breathing issues have needed hospitalisation, her wheeze comes randomly and strongly we know this can be triggered by an allergy but she has never been able to get tested, we don’t know what is causing it .

She has red bumpy allergy rashes that appear on her face which come and go. Her nappies are so messy we can’t start potty training so this is now delaying her development. Her tummy bloats daily after food, it’s painful for her .

We need to get my daughter prioritised. She needs an allergy test to find out if its triggering my daughters breathing issues. We need her bowels to be functioning normally so it doesn’t delay her development skills with potty training .

Experiencing all this as a first time mum has affected my trust in the system. It’s affected my mental and physical health. Seeing my helpless daughter being failed by the system by no fault of her own is not acceptable.

I want to know how this will be prevented in the future? What support with be given to parents?