To want to take son to A&E because I literally can’t get any help from anywhere?!

[Mamatoautisticson]

The title may seem drastic but I am literally at my wits end!

I have an 8 year old autistic child with ADHD who is aggressive and self-harms (head banging, hitting etc).

I have tried everywhere to get help - GP who referred to paediatrician, paediatrician who have got a huge backlog and even with an urgent referral you still have to wait months and months, CAMHS who can’t see him for a matter of weeks either.

He is literally getting worse to the point where every single day it’s a constant thing - hitting themselves, throwing themselves on the floor, throwing things at other people to injure them, aggressive and destructive all day long!

We live near a paediatric A&E who have a specialist unit 24/7 assessment type thing and I’m wondering whether this will help us get any help sooner?!

I literally feel like packing up his bag and sitting down there until someone either medicates him so I can cope with him until other interventions can be put in place or this can help him be seen sooner by other agencies?!

I agree with this

no help as my DS not a deliberate danger to himself but I get the frustraition, we have been on waiting list for over 2 years.

Everyone who has assesed my DS confirms he needs help but then nothing happens, they say they will refer to 'this' department or 'that' department and then 'this' department take 6 months, do an assment then refer again elsewhere and 'that' department will just say 'request denyed'.

Every department acts shocked that the other department keep bouncing us and say we need to DEMAND help, then proceed to bounce is the exact same way... I cant demand help because we have never seen the same person twice (and we have seen NINETEEN specialists for assesments all of which have just referred to the next department) so dont even know who to complain too.

is the OP a threat to herself or others?

I understand, I really do how hard it is for the OP. However, I also know the other side. Many hospitals are on black alert, with no or very little beds available. Record long waits at the A&E.

The simply haven’t got the capacity to
deal with social issues. I’m sorry

Mother of DS5 autistic and with ADHD here. Also a self-harmer - prolific headbutter of walls and floors. Sorry, but this is normal for the NHS. It is vanishingly unlikely you will get any help from A&E and even more unlikely that the on-call pediatric team will start medication before he has been assessed for anything.

I don't mean to sound brutal - I have been where you are and it's horrendous. But there are people waiting days in A&E after a heart attack and anyone the staff can send home is leaving, whether it's morally right or not (it isn't, in your case). My DS wouldn't cope with sitting in A&E full of noisy people for minutes, never mind days.

What helped in our case was complaining to PALS, bringing a formal complaint against the hospital (escalated to ombudsman), badgering the GP for out of area referral (refused, but badgering and evidence of DS' distress motivated the GP to help us get things moving) and threatening to provide evidence of their neglect and delay - and the resulting state of DS - to the press. After literally years of waiting, we saw a new pediatrician who wrote a prescription for Ritalin and Rispiridone on the spot - within weeks, DS was like a different child. Happy, able and settled.

I am so, so angry about how the NHS treated us. I sincerely hope you find a way to get DS seen, but I really don't think A&E is the way to do it.

We have been in hospital 3 times in the last week (once for DS injury, once for DS disability which wasnt A&E but we walked through them empty A&E and once for me due to on going illness) and it certainly wasnt at breaking point.

It was basically empty each time and we where seen quickly.

I feel your pain, literally. My dd is twelve with asd and ds, we were recently referred to SS through school, who emphasised they were not concerned with us as parents but we were at breaking point. I spoke to the duty SW and explained that she was a danger to herself and others, very soon after we had a SW. Our Children with Disabilities SW has been great, but several months on we have the OK for overnight respite, but we have none as yet. These things take time and are scarce, sadly. I think you have nothing to lose by trying Paediatric A&E.

i would OP

i have a child who developed an eating disorder. Huge wait. We ended up in Aand E as I was worried about her heart (it was ok). But the nurse spoke to CAHMS about the urgency of the issue and we were seen earlier. They also checked her medically for me

the NHS is broken and you have to fight for your health and that of your children

I was in the same position when my son was 14. He’s severely autistic and non verbal. He has always been a fairly “easy” child but puberty hit and all of a sudden he developed terrible ocd and challenging behaviour. He was aggressive and violent on a daily basis and our previous happy little man just disappeared. It was heartbreaking. I booked to see the GP as I was at the end of my tether and a locum saw us. He was absolutely brilliant and got us an emergency appointment with CAMHS who saw us 2 days later. I’d say do it, what have you got to lose x

Sadly asd IS classed as a MH issue. I was told this when diagnosed. Disgusting isn't it!

not the same, but been to A&E a few times when very worried about ASD toddler DD (non verbal and prone to fever and extreme meltdowns) to rule out various worries bc of her extreme reaction and inability to communicate ( eg heat stroke / bladder infections / aftermath of head injuries etc) and they have always been of the view I was right to get her checked but fairly disinterested in the wider care context. I would be surprised if it helped to escalate/ accelerate your help situation and the risk of unwelcome SS intervention that was mentioned earlier is so scary

sounds awful and wish you all the best

Self harm is self harm whatever it’s due to and no one wants an 8 year old child to be hurt.
Youve been badly let down. Go to A&E, if it looks like a10 hour wait, or they’re at breaking point you can go home. But your son might just get the help he needs.

I feel for you as I have babysat for a friend to give her days off. I was self employed so could take time off work. What you are going through is hellish.

I know she has taken her son to a hospital with an urgent care attached to it. It’s better than having to sit in A & E for hours trying to calm down your child. Urgent Care were understanding and wrote a letter to her GP saying she needed help and that the situation meant as a Mum she was at breaking point.

I don’t know where you are but this was in the South. Hoping for the best outcome for you both. I moved since then and lost touch with my friend, but the Urgent Care nurse was the reason the GP expedited his treatment.

I know this is a long shot but has anyone suggested Citizens Advice?

I would go, say he head butted something extra hard and has been acting differently since, say you're worried about brain damage, then once you're in....pounce

I think commenting on A&E waiting times is only relevant if we knew where OP is based. Someone's experience may not necessarily be the same as some of the previous posters who have sadly struggled.
I think the OP is desperate and if her child is hurting themselves then there is a medical need.
I know of one parent in my sons school who rang social services and told them she could not cope anymore and was going to leave him - drastic measures. But they have a disability social worker and some respite. It's not ideal but parents are literally left without any options.
Summer holidays seems to be making matters worse for so many families. There needs to be more provision for SEN children - but of course that's a whole other thread
OP I hope you get some help.
I doubt taking a child with Special needs to A&E is anything other than a last resort

A&E won’t give you the outcome you’re wanting or needing.
Have you noticed any triggers?
I would definitely go private (but stay on the NHS waiting list), I’d travel to if necessary.
Also go to the SN boards for help and advice there, others who have been through similar will be more prominent over there.

Omg, I am in the EXACT same scenario. My DS's meltdown was so severe last night that I called a family member who is a medic and they said to call an ambulance. I didn't in the end but we are at absolute breaking point. DS has screamed and self harmed all day every day for weeks. I have never seen a child act like he did last night (I worked in an SEMH school), it was terrifying. I don't know what the answer is but if you do take him to A&E please come back to the thread and update.

according to who?

All NHS sources state that ASD itself it’s not a mental health condition, however, people on the spectrum are at increased risk

I’m so sorry OP.

We aren’t in the UK. We’ve suspected for a long time that DS1 has ADHD and as soon as he turned 6, he was assessed. Between our initial appointment and his diagnosis, was less than 4 weeks. He’s now on medication and is like a different child, at home and at school.

It breaks my heart that there are children in similar situations who aren’t being given the support they so need. The NHS is fucked.

For what it’s worth, I would go to A&E. Even if it’s just as a cry for help. I hope someone hears you x

@lovelychops yes, I instructed a solicitor specialising SN cases (in relation to the LA, not the NHS) and she told us that the only way to get help from the LA is to take the child to social services and threaten to leave them there until the support they are required by law to provide is made available. And to absolutely mean it.

One of the many problems with "the system" is that autism is categorised as a social and communication disorder, meaning that acute NHS staff kick the ball back firmly over the fence to the (non-existent) support in the schools and community. At least that's always been our experience, sadly even when there is a clear health need arising from the autism/ADHD diagnosis.

All NHS sources state that ASD itself it’s not a mental health condition, however, people on the spectrum are at increased risk

Yes, and I often wonder how much of that increased risk (in the UK at least) is caused by being consistently failed and overlooked by service providers for children, and surrounded by absolutely frazzled and enraged family members.

You only have to read a MN thread to see how much discrimination is faced by autistic people. It seems the process of learning that you do not deserve help starts young!

Please don't go to A&E call social services and ask for the Childrens disability crisis team they have experience of exactly what you and your ds are going through and will call you back quickly. The only thing A&E will do is refere you to CAMHS which will take months the only thing you'll gain at A&E is along pointless wait with a distressed child.

I say this as a parent of a severely autistic learning disabled 18 year old who has walked in your shoes many times. X

I work with autism and learning disability. If you don't have a social worker already call duty social Work team and explain that your close to a breakdown, that you need immediate help, they should send you someone that day. Don't let people scare monger you about having your child taken away!
Alternatively hospital for an in house assessment, will at least give you a 24 hour break if nothing else.
The services are unbelievably crap and I really feel for you.

This is the massive issue with the NHS, everyone complains about and villanises the general public for the massively over stretched A&E provision, 12 hour waits on hallways floors…etc but it’s 98% caused by SEVERELY LACKING SUPPORT SERVICES.

ok maybe 2% of people are going to A&E because they got a splinter or stubbed their toe and genuinely thought that was their first best option but 98% is people who can’t get a GP apt and/or have been on waiting lists for months for services with no light at the end of the tunnel.

yes in a perfect world nobody should ever go to A&E unless it’s life and death accident or emergency BUT in order to do that the responsibility lies with the system to not make A&E the last resort of desperate people who are being failed in every other area of care!

You've had good advice upthread but I just want to say how sorry I am that you're in this situation. I think a lot of people don't understand how unbelievably broken mental heath services are unless they are involved in them either as a patient or staff. They are absolutely fucked and I have never seen them so bad.

I'm a parent with a similarly diagnosed child. Prior to his medication appointment which we've had today in fact, I was told that if he went into crisis it was straight to A&E. So yes that is what I'd do.