To be pissed off that I can't get a doctor for my daughter?

[JennyBeanR]

Just that really. Need to vent. Over the bank holiday weekend my daughter has developed what I suspect is an ear infection. Fever, off her food, and screaming in pain. She's non verbal so can't tell me exactly what is up but she seems to be pulling on her ears more than usual. We've kept her temperature at bay by alternating Calpol and nurofen but last night she was in so much pain, wailing for hours so I took her to A&E. She'd had meds before arriving so fever started to reduce. Triage didn't seem to give a crap and just kept asking her questions to which I repeatedly said she doesn't understand and can't answer...

Left A&E after 2 hours as she was becoming more distressed and I saw estimated wait was 6 hours (which would overlap with GP opening). Tried GP this morning and can't get through. Finally gave up and called 111, now waiting for a clinician to call back. Meanwhile my girl is lethargic, puffy faced, feverish, and still off her food. She vomited after waking today and is pretty much unable to sit up without crying. I'm on my own with her this week and feel so worried and stressed. She can't tell me what's wrong so naturally I keep worrying it's the worst possible thing and not the likely ear infection. Lack of sleep isn't helping.
So yea I'm pissed off at my local NHS at the moment. I know they work hard but this just feels ridiculous.

So AIBU to be completely pissed off at this poor service on behalf of my daughter?

Local pharmacy can now prescribe antibiotics for simple ear infection so that’s what you should have done to avoid it getting worse. So you didn’t even need the GPZ

if she’s now vomiting I would go to A&E and not leave until you are seen

I think you are getting a hard time on here. Most people are not considering the additional issues posed by having a non-verbal child or an autistic child. ‘Just do x’ may be manageable if you have a neurotypical child that you can have a conversation with and especially if you have support at home, which you do not. In addition people are assuming it is an ear infection, whereas you, with all the additional info you have from actually being with your DD, had rightly not been able to rule out other things.

You have been doing your best whilst under stress and sleep deprived. Ideally the NHS would be funded and resources in such a way that you should never have been able to get to the level of worry you got to. The NHS should be able to assess and reassure parents in your situation.

I think you’ve also been particularly unlucky. With an ill infant, or a (verbal) older autistic child I have been seen within hours by a GP several times when they’ve been in far less distress than you are describing. In A&E, again with a less distressed autistic child, I have been offered, by the receptionist, a quieter place to wait (which we took up, after a while when DS became more distressed) and “anything else that would make things more manageable”.

Also our local hospital has a passport system for people with additional needs. You can fill it out with details about how to communicate with the passport holder, their likes and dislikes etc etc. The hospital keeps it on record and staff should look at it before interacting with your DD. You have to update it every year. We got what we got offered in A&E without this though.

But isn't actual A+E . They may be located there but will be GP run and usually accessed through 111.

Thank you for this. I am going to look into the care passports as that would be very helpful in these situations.
I am exhausted, but definitely feeling better now. I tried gp surgery again and managed to get her an emergency appt. Turns out it wasn't an ear infection at all, but tonsillitus! She's been given antibiotics, and already taken the first dose. The doctor was very reassuring about the lethargy, puffy face etc so I'm much less worried now. Looking forward to a good nights sleep.
DD is laying in her bed now with her tablet and her toys and although still not hungry, is drinking normally.

Did you miss the point that due to OPs Dd being non verbal an ear infection was her best guess? As it turns out it wasn't even her ears that were the problem - hence why she needed to be assessed by a doctor!

OP I’m sorry you’ve had such a rough time of it. I know that people of all ages with learning and communication disabilities get a worse deal from the healthcare system unless they have strong advocates. Hope things get better from here on in.

There is Mandatory training on Learning Disability and Autism the team can be contacted on [email protected].

While it will not help with your current situation it might be useful to be aware of for any future need.

I do,hope you daughter is seen soon and makes a speedy recovery

This won't be the case though if many patients came in off of CAT1 ambulance calls, cardiac arrests, strokes, patients going into resus.

They won't put the needs of a child over a patient about to lose their life.

this Is an area for development in many hospitals, their services to autistic people are often hit or miss.