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?

Has she got a paediatrician?
I have a non verbal teen I get how hard it is when they can't tell you
My son had a paediatrician and she waa great when the GP ws next to useless
In my nearest A&E we have a paediatric department which made it a bit easier

I'm sorry your dd is in such discomfort op but ear infections are not an emergency.

I had recurring ear infections as a child. They are very uncomfortable indeed but not life threatening. Please keep calm as your child will be picking up on your panic. No need to rush to a+e and get frustrated at triage.

YABU to expect to be seen within 2 hours at A&E
If it was an accident or an emergency you would stayed.
You would have complained if the staff hadn’t spoken to your daughter, and then you would have said she was being treated differently because of her disability. Sometimes people can’t win!

You would hope they would have some understanding of disabilities, but ime ,the understanding is very limited.

I agree with this. Looking at it another way, what if the nurse had addressed the parent only? Then it would be ‘I attended a and e with my poorly disabled daughter and the triage nurse barely spoke to her -how rude , she’s disabled not invisible’.

I'd be concerned that a child with presumed ear infection that hadn't been treated and had become lethargic, was vomiting and had facial swelling needed urgent reassessment in person not over the phone and ED may well be the right place for this.

Triage nurses do have training to understand disabilities. They're trained to assume competency. Not all none verbal people have no understanding so they have to assume your child does understand.

She will have taken your answers on board, but it's best practice to engage with the patient regardless of disability. I'm sure you'd complain if the nurse only talked to you and pretended your daughter wasn't there, so she's damned if she does and damned if she doesn't.

My daughter's consultants always talk to her rather than me. She's verbal with moderate learning difficulties and ASD and will not communicate with them at all. The information I give when she doesn't answer is always recorded but their focus is DD, so I'm not given masses of acknowledgement when I'm answering for her.

I do hope your Daughter feels better soon.

Yeah you should have stayed in A&E but yes you’re also correct that NHS primary care is in an absolutely dire state at the moment. Its terrifying how hard it is to see a doctor at the moment.

In this situation I would have called 111 over the weekend and it would have been dealt with.

Thank you all for the advice and insight. I know I am stressing and probably not the nicest either to deal with. I did manage to snooze in bed with her this morning when we got back but I have been throwing back coffees with sugar since.

I will check out the pharmacy if 111 doesn't call back soon, or if my girl wakes up distressed again. Thanks again to those who posted links, I'll have a read through now.

I don't know for sure it's an ear infection, but the glands under her chin are both swollen. Her nose is extremely runny, she's feverish, off her food and shes keeping both hands over her ears and won't let me touch or even look at them. She's also lethargic, but I'm not sure if that can also be the Calpol and nurofen. She vomited bile this morning, but then resumed drinking water before going back to sleep. Shes still in nappies, and they have been a bit drier but she's definitely passing urine.

Trying to get a history in the “child’s voice” is an important part of paediatric triage, it’s important that the nurse satisfies herself of your child’s inability to answer the questions, rather than just take the parents word for it. Some children in horrific situations are told not to speak to HCP’s (munchausens, abuse, etc), and the nurse needs to be sure that your DD isn’t one of those.

I noticed in one of your other comments that you were hoping someone would “come and see her”. Nobody is going to do a home visit on an entirely portable child, if they’re so sick that they cannot be transported by parents then it’s ambulance time. So don’t set yourself up for further disappointment in requesting a home visit, it won’t happen, just to manage your expectations.

I didn't because NHS website advised 3 days home treatment then GP. My daughter was unwell but not wailing in pain like she did last night. If she was like that sooner, I would have taken her to A&E in the daytime or called 111 then.

Thank you, yes that does make sense. I didn't think of abuse or Munchausen situations. I probably was unfair on the triage nurse.

I thought they do home visits here as I see the doctor cars around regularly. I do have a car so I can transport her, but the issue is if she is too sleepy to walk as I have a bad back and her dad is away. Worst case, if asked, yes I will absolutely take her to see the doctor if they can't come to us though.

To the people defending triage staff, I think it's completely understandable that OP was not impressed with them. While I understand all the difficulties and pressures on staff and will always support them when reasonable, one can only wonder how qualified they are to triage patients if they can't understand the basic meaning of "my child is non-verbal, therefore they are unable to answer questions". I mean, come on... If they can't understand that then they can't prioritise that patient properly.

I accompany several people to hospital quite regularly, and we've had triage experiences where they've seemed not to understand basics such as "the patient can't hear you and therefore can't understand or answer your questions in a noisy environment, they need to be triaged in a side room where it is quiet", and about other very common disabilities that needed to be taken into account, on different occasions. Sometimes good, sometimes terrible.

OP, IMO get your child sorted via the suggestions on here (if you haven't already), and then complain about the poor triage. That person needs more training to do their job properly. If they had an attitude on, as though it was inconvenient that your child is as they are, then complain about that too. This is the only way things get improved.

Notwithstanding the challenges with your daughters disability, a&e really isn't the place for an ear infection (unless there are other related health issues for your DD that might mean this could be more serious for her?)

While its distressing for the child (mine has had a few bad enough that the ear drum burst), there's not a lot can be done, except pain relief and perhaps antibiotics, and those could have been got at the gp. It would be very rare for it to become life threatening.

A&E is for life threatening "emergencies". My experience has been that when you actually need to be seen, you are seen quickly. Eg a baby with breathing problems will be seem in minutes. DS once needed steroids for very bad croup (struggling to breathe), they had him treated very very fast.

No pharmacist on earth should be comfortable assessing a child with complex needs for something like this so I'd scratch that off the list of options. She needs to be reviewed by someone who can assess whether the lethargy might be a sign of a developing more serious infection like mastoiditis/meningitis (in which case she needs pretty brisk hospital treatment) rather than just fatigue from the night out.

A home visit is not a reasonable expectation!

Its extremely inefficient use of doctors time. If you know you have a bad back, can you get a portable special needs buggy to transport her in a difficult situation? Excel elise takes up to 8 stone weight.

I wish mumsnet wouldn't have this blanket stance A&E is only for emergencies
It's been a Bank Holiday weekend ,GP,S are not open ,not everyone has a walk in centre a non verbal disabled child is ill ,if my non verbal disabled son was ill I would want him to be seen too ,because he can't tell me if he's feeling worse etc.

There is always out of hours GP cover throughout England (can’t speak for arrangements the rest of the UK). It’s accessed via 111, who will give appointments or arrange an OOH GP call back. So the general principles of A&E attendance remain the same despite the bank holiday.

I thought they do home visits here as I see the doctor cars around regularly. I do have a car so I can transport her, but the issue is if she is too sleepy to walk as I have a bad back and her dad is away. Worst case, if asked, yes I will absolutely take her to see the doctor if they can't come to us though.

If your dd is in a medical situation that is so extreme where you take her to A&E during the night then you wake her up for the journey from home to car and car to doctor's surgery.

2 hours! To be seen, not for treatment, some count booking in as being seen.

Which in my area is based in A&E ...

Home visits certainly do take place, but only for housebound people - usually those at the end of life, or who would be housebound whether they’re currently poorly or not - elderly people with mobility problems, bed bound, have carers 4x a day, ventilated at home, etc.

In my work (at an OOH GP service) if the patient is usually physically well, and has become acutely unwell rendering them housebound, generally that’s concerning enough that they need an ambulance instead, certainly the case for children, young adults, working age people, etc. But generally, unless they’re unconscious or very unstable (and needing ambulance) most people can get into a car to go to an appointment.

I completely understand, my experience of A&E with an autistic child is poor. The thought of having to spend 6 hours, with a non-verbal child and staff who just don't understand if frightening. It would absolutely have to be my last option now. Even a visit to the GP would be virtually impossible. What would help me would be if my doctors surgery listened to me and if they prescribed without needing to see my child for the basic needs. I understand the limitations on this but care passports and staff with poor training make the process worse.

I get that, but she was so distressed and it's very unusual for her to be this ill. I am assuming ear infection but I don't know for sure. I did know she was in pain but she couldn't tell me where or what is causing it. For her to be wailing in the middle of the night with tears streaming down her face is very distressing and difficult to deal with rationally. She has been a very healthy happy child. I can think of only a couple of illnesses when she was a baby, and nothing major in the toddler years other than sniffles.
I don't know if I was silly to take her to A&E or silly to leave or both. It's all pretty shitty and very difficult though, that's for sure.

I'm actually thinking it might be worth putting together an emergency bag for her, packed with essentials in case something like this happens again. In my panic last night I didn't pack toys and objects of comfort for her to make the waiting room a bit easier for her.