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?

A home visit is not a reasonable expectation!

I agree with this - it’s virtually impossible to get one these days ime.

That doesn’t mean that the appropriate route of access is to book in as an A&E patient.

I work in an OOH’s GP service based in an A&E - the A&E attenders that get streamed over by triage are subject to normal A&E waiting times (I.e. we will do our best to see you within the 4 hour target), the people who called 111 and got a booked appointment with us are prioritised - so you could have been in the dept four hours at 2pm and still be waiting, but if someone turns up for their booked 2pm appointment at dead on 2pm, they’re going to be seen first. It’s to promote appropriate use of the NHS/111.

YANBU

My 4 year old had the same issue on Friday night but she wasn’t in agony, after calpol and nurofen and with sitting up (ear pain is worse laying down) it was manageable so waited until 8 and minor injuries was open and went prepared with toys, screen and a packed lunch box. Spent about 2 hours there.

These things aren't planned. She walks happily when she's well, and we have step ladders around the house so I don't have to lift her off the toilet or into the bath. But yes, this situation with her being ill and her dad away definitely shows a weak point in our home setup. I'll look up a special needs buggy, thanks.

Hope your daughter is better. Yes, lack of preparation on my part didn't help last night.
She's sleeping but I'll try propping her up when she wakes, thank you.

I’m really sorry. DD2 is also non verbal and has severe disabilities. I try to avoid A&E as much as possible and ring the GP. Even though the GPs are stretched and often fairly inaccessible to me as a patient I’ve luckily found that when I speak to a receptionist and state I’m ringing on behalf of X, my daughter, who has profound disabilities and has a very high pain threshold so when she exhibits distress it is usually at a far more grave point than a neurotypical person would and I think she has an ear infection, - they do get her in very quickly. I’m always very calm and use the words: “Unfortunately I do think she needs to see a doctor today”. It’s worked over three changes of GP practice but it takes a lot of calls and holding on phones. Once they get to know us there is a degree of trust as I don’t request same day appointments for anything non urgent . Luckily her current practice knows her well and they are always very responsive. I do drop in Christmas cards and farewell chocolates or booze when we move on.

I hope your daughter gets seen soon and I appreciate you may have tried the above and it hasn’t worked with your practice x

I just came on to write this! I think it might only be Boots pharmacies in my area but they can see you for things like this now and prescribe antibiotics if needed or offer advice. It’s a really great service if you ever need it

That was the fear last night. She couldn't tell me what was wrong and I panicked. It seriously crossed my mind that it could be appendicitis or something similarly awful. I'm sure exhaustion hasn't helped my mental faculties here. Feeling really shit..

Update on DD, she's still snoozing but the fever is gone again and there doesn't appear to be as much mucus as earlier. She actually just laughed in her sleep 🥰

To everyone that's posted, thank you. I'm feeling quite lonely, tired, worried, the works so it's nice to vent a bit and to get others opinions.

If it is ear pain some gentle heat on the ears works wonders for the pain I found when I had ear infections.
I hope she wakes feeling better and as suggested I'd ring 111 next time as ive actually found them helpful when I've rung out of hours and they can often get an appt somewhere to be seen.

Ah this made me cry! I hope you and your dd are well.
I couldn't get through at all today. The phone calls were greeted with an automated message stating they are extremely busy, but then nothing. One time I was on hold for 20 minutes before the call disconnected. I didn't have a chance to speak to a receptionist. This hasn't happened before, but then, I don't think I've ever called after a bank holiday weekend.

Glad she's snoozing and appears to be on the mend! Hope you are okay! Sounds to me like you are doing a brilliant job x

As a mum of a baby who is currently sitting in hospital with her for her 5th admission this year I feel your pain.

I feel like I know the system very well by now but still get very frustrated.

my advice would be GP first, the best option as there the least amount of sitting around waiting to be seen, but the receptionists can be a nightmare.

OOH via 111 is the best next option, but it can get ages to get to point of getting an appointment, being on hold waiting for call backs.

A and E waiting rooms are the depths of hell. I have found you need to be really tactical with triage (I must be a pro as the last few times we have been triaged we got sent straight through). Your problem was that she had calpol and would have been presenting better which meant she would have been classed as non urgent, as horrible as it sounds sometimes you need them to be at their worst when seen to actually be taken seriously. Also worth noting that you can ask to be seen again, ie her temperature seems to be up again and she is very upset and usually they will reassess.

Unfortunately I do agree with other posters, the NHS needs to change. Over the last 24 hours I have seen parents shouting at staff and refusing to leave despite being told by several doctors that their baby is fine. It took an overnight stay in the paediatric unit and senior consultant to convince them that their baby was just experiencing reflux. With time wasters like that it’s easy to see how it’s hard for our actually ill children to get the care they need quickly.

OP, firstly sending you some love and hugs, sounds exhausting and very anxiety provoking.
I think ideally once you’d arrived at A+E it would have been worth staying but this is probably something that could be dealt with by a GP. I know how hard it is to get through post bank holiday weekend but you can keep on trying if worried or try going via 111 for advice. Sounds like she’s doing a bit better now though so you may went to reconsider whether she needs seeing or not - if in doubt do 111 by phone or online. Definitely shouldn’t be home visit though for the reasons others have outlined - takes so so much longer to see one patient at home and in that time you could see 5 or 6 in surgery so not done unless absolutely essential.
Also wanted to say how much I admire you for listening to other posters and taking reasonable stuff on board - never easy to do especially when you’re knackered and anxious.
Really hope she’s better soon and you all get some sleep.

Whereabouts are you Op as if you're anywhere near Birmingham, Heartlands Hospital has a children's A&E & its great?

I'm sorry your DD is so distressed - my niece is now a teenager and non-verbal but can point and give more indications of what is wrong as compared to when she was 5 & it is such a worry.

I'd keep calling 111 as I've always managed to see a dr that way - not necessarily our own GP & have had to travel, but at least the DCs have gotten seen when it's been an emergency.

Good luck!

Sadly they often aren’t trained when it comes to managing the needs of children with disabilities. My autistic daughter has been left seriously unwell on 3 separate occasions thanks to poor triage. My personal favourite was when an out of hours doctor reviewed her and said she was fine - less than one hour later she was in resuss with severe dehydration. The very thing I was concerned about.

This is a well know significant issue for disabled children.

To the OP - as a fellow mother with a child with similar needs. Never ever leave the hospital.

So awful for you. I'm the mum of a child with high needs autistic also 5 and non verbal - a&e is hell. I do recommend special needs buggy we couldn't be without ours. Also, when my son has been really struggling with the waiting area and all of the people, we have often been moved to a quieter location, it's really hard in the moment sometimes to advocate, but if you really emphasise your child's needs due to their disability. Sometimes they can be accommodating, we've even had OT come to try and support.

Most A&E departments are creating child friendly areas which are so important. I would hope they have them in every hospital now. I hope your little one is feeling better.

Pharmacies can now prescribe for ear infection

Pharmacists can give you advice on a range of conditions and suggest medicines that can help.
They may also be able to offer treatment and some prescription medicine for some conditions, without you needing to see a GP (this is called Pharmacy First). Conditions they can treat as part of Pharmacy First are:

• earache (aged 1 to 17 years)
• impetigo (aged 1 year and over)
• infected insect bites (aged 1 year and over)
• shingles (aged 18 years and over)
• sinusitis (aged 12 years and over)
• sore throat (aged 5 years and over)

Nhs website

You're hoping for a vist for a 5yr old with a temp and earache?
This is why the system is so broken. Everyone thinks they are the only one who needs help and the most important.
What do you mean you couldn't get a GP appt this morning? GPs are supposed to assess all under 16s? Ring them back now and ask for an urgent appt.
IME people say they "cant" when what they mean is they "couldn't be bothered to hold on/try again/wait/not at their convenience"

Most people here do not have a disabled/nonverbal child so would not know how harrowing it is to wait in A&E for hours and hours.
It's difficult for everyone, but you would not imagine how much more so with a nonverbal child.
Most staff may not be very well aware of this either, they see a child that may look like any other. Hope your daughter feels better soon.

When OP said she could not get an appoinment she meant.. guess what... that she could not get an appointment. OP actually updated, if you were bothered to read, you would have seen what happened with the GP appointment.
It's after Easter, long bank holiday, no GPs from Friday to Monday, our line was busy non stop for 30 min and when we got through we were told they have no appointments left and we can ring tomorrow to try again. I repeat, there were NO appointnemnts and they could not magically conjure an urgent appoointments because there were none left.

I think this is awful. My dd is severely autistic and when we’ve been to an and e we’ve been seen immediately due to this to avoid her getting more distressed . I’m so sorry you are having such a dreadful time OP