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

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

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.

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

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.

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!

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

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.

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 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

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.

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.

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"

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)

Pharmacies can now prescribe for ear infection

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.

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.

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

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.

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!

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.

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.

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

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.