To not have realised how woeful mental health support is in the UK

[Whatafustercluck]

Long story but essentially we are sure that 6yo dd has some kind of neurodivergent condition which manifests as anxiety induced sensory problems and extreme emotional reactions.

We've jumped through various hoops, done the courses, implemented strategies etc. But there are residual concerns, such as this morning, first day back, tummy ache (anxiety induced) uncontrollable sobbing, her uniform was uncomfortable and it took every reserve of energy and empathy I have to coax and encourage her to school.

When we were discharged from the mental health practitioner before, we were told to get back in contact with the GP if concerns persisted. So today I dutifully did so, using the online consultation system. No option for 'mental health', 'sensory problems' or even 'anxiety' (which I would have thought would be a fairly standard category) and had to instead put 'stomach ache' which of course took me down a totally different route of questioning.

Did what I could, received call back from GP (good so quickly, obviously). Had to go over the past 2 years of stuff to provide background I had assumed would be on our records. Was then told "I'm not sure what you want to get out of this". How I held it together I will never know. No compassion or understanding. I was then asked to put it all in writing (which I have done multiple times before with various services) and go back on e consult to add the attachments.

Have spent all morning writing up notes, evidence of difficulties etc and went back on to upload them. They've closed the fucking case!! So now I have to open a new one, and again there's no option for mental health so back to square one. I am seething.

I know I've been very naive, but I had absolutely no idea how broken things have become. How many people must harm themselves, attempt or actually take their own lives before action will be taken?!

I totally agree

You sound like a really caring mum OP. And your situation sounds very stressful.
Just a thought..
Had the school SENDCO offered any support? It might be worth asking them what they can offer your daughter (for example, ELSA sessions or maybe further investigation as to why your daughter is experiencing these challenges at the moment).

My DD experienced similar MH challenges and sensory differences in primary school, and she was diagnosed with autism a few years ago. My GP had dismissed my concerns for years, and her school didn't have a robust understanding of autism, so didn't recognise the signs in her.

Trust your instinct and push for further investigation if you feel that she needs more support. I am glad that I did, as my daughter is doing well at school now. The diagnosis really helped her understand herself better, and enabled school to put proper support in place.

You’re complaining that a GP form was hard to fill in, but you still got a call back from a doctor the same day?

No I was using the GP's form as an example of a symptom of a much bigger problem in which mental health issues are essentially invisible to GPs, but there are no other routes in for support - everything is "go back to you GP". Well, GPs clearly don't have a sufficient awareness of MH issues to help. What use is an econsult platform that doesn't have even the most basic mental health categories on there?

Also, I found this book really helpful in understanding how to support my DD at home.

Avoiding Anxiety in Autistic Children: A Guide for Autistic Wellbeing (Overcoming Common Problems) amzn.eu/d/itp9S8Q

Thank you.
The school SENCO is unfortunately from the same school of thought as some of these replies. Dd masks well at school, the fallout is at home. We've come a long way in managing her extremes, but I want her to thrive in life, not just survive.

IME you will need to manage this yourself because the GP's objective is to get you to fuck off. I have a ND 16yo and I have done everything myself re anxiety, education, bullying, the whole lot. For 16 years I've worked like a dog to help him and I have been successful, whilst people look at me and think I'm lazy as I'm a SAHM. Nobody gives a shit apart from you, the UK is disgraceful.

The CAMHS waiting list is about 3 years in my area. Pre covid it was 2 years. This is fairly standard.

Of course your case was closed by the previous involvement as you were told the outcome of treatment

I think you've misunderstood me. They opened the case this morning, I had a consultation, I was told to log back in and add supplementary written information/ evidence and when I did, it had been closed.

This is going to be deleted but, who the fuck do you think you are to tell a stranger they've never met that their kid (who they know a damn sight better than you do) isn't neurodivergent?

Are you the same type of cunt who tells an autistic kid they'd be fixed with a slap and a spot of national service.

Honestly, they say people with autism lack empathy. Sometimes it's the fucking neurotypicals you've really got to watch out for.

And if you get treatment, once it has finished you go to the back of the three years queue if you ever need any top up / refresher treatments. It is not a functioning health service and hasn’t been for some time.

Completely agree with everything you say here, but particularly your point on empathy in ND people vs NT people - my experience is that it is the latter group who tend to lack it. I believe (needs a citation) it is because the typical human is wired to only emphasise with people who are like them.

Extensive experience for many decades (seriously decades) with family members. Hospital stays/differing diagnoses etc etc. Also worked in the sector for many years. OP it has always been this way. It’s at the bottom of the pile for funding, it always has been. Slight improvements with care in the community but then locking people up in institutions is quite expensive. The “care in the comm” can also be code for ….. you’re on your own good luck with that.

Whilst I have lots of empathy for how difficult it is for you, SPD is not a mental health condition and places like Camhs aren't normally commissioned to deal with this. Children with SPD may have symptoms such as anxiety as a result of their condition but it is the condition that is causing the issue and not an underlying mh condition.
You as a parent really are best placed to help your child manage this by learning about and supporting them with their responses to sensations and situations. Once you actively learn and become aware if they would normally under-react, sensory seek or over react then you can help them to overcome each difficulty.
This can be through changing activities, 10 mins on a trampoline, creating a den, wobble cushions, thinking about your own dress - are you wearing too much perfume? Changed washing powder etc? Could you offer a sensory diet? Seek support from an o.t instead of a gp maybe? All these things will help but it's a slow job.
Peer support parent groups often contain tonnes of tips to help you with ideas.

Op I'm sorry to hear you are struggling to get the support your DD needs. It is awful how hard it is to get mental health support or to get people to take your concerns seriously about ASD when you child masks at school.
Can I just say you sound like a great mum for fighting your DCs corner. Getting her support when she is young should really help. 💐

Do you have a child with SEN?!

Is there a SENDIASS in your area that could help? They're local authority adjacent.

Have a look at Facebook and see if there's a SEND parent group in your local area, they're usually a wealth of knowledge on who to poke/prod. Ours sometimes do meetups so its a great way to find a tribe if you need that.

It's shocking. I have several family members with MH problems. Dh has recently been told he has been put on the waiting list (at least 2 years!) for counselling!
I am so sorry you're having to deal with this. It shouldn't be so difficult.

That's frustrating. Sadly, too many parents find themselves in this situation.
Schools and GPs are the gatekeepers to the diagnostic pathway, but their understanding of neurodivergent conditions is often seriously lacking, resulting in too many girls being overlooked.

The government says that early diagnosis is key to securing positive outcomes.

Keep pushing. For years I was told that I was the cause of my DDs difficulties and that I was causing her anxiety, but they did eventually listen. We invested in a private play therapist, and it was her report which made the school listen.

The best thing you can do is educate yourself by googling everything (and not just looking at the first few results - go deep), listening to seminars, reading scientific papers, reading real accounts of people with similar issues and always having your daughters back while encouraging her forward.

(I feel like this with every part of my life with the UK as it is. Self & family preservation. Community with what I have left.)

No I was using the GP's form as an example of a symptom of a much bigger problem in which mental health issues are essentially invisible to GP.

I spoke to some GP friends and acquaintances about this a pre-Covid. They simply said they aren't trained in mental health issues and like everything else it is dumped on them.

As a PP said mental health has always been underfunded.

It doesn't help that some of the healthcare practitioners who are suppose to be helping you with mental health or anything else, themselves are suffering mental health problems due to their own work environment.

SENDIASS were really helpful. A representative came to a meeting with the HT and advocated for us. Also SOSEN and IPSEA offer excellent advice.

I’ve currently been waiting 7 months for MH support after being referred by my GP.
Maybe if the previous support had been more that 4 phone calls on relaxation techniques I wouldn’t now be on a waiting list.
The previous ‘help’ was supposed to be 12 sessions (because that’s all you get) of CBT, yet I was given a trainee learning CBT who told me more about their partner/holiday/sports/life than I got to tell them about mine.
I previously had such severe MH issues I was suicidal, the ‘help’ for that was a prescription of tranquillisers. 15 years of misery.

DS (sn) has been repeatedly failed by CAMHS.

MH provision in this country is appalling.

What are you hoping to achieve? Sen? Anxiety? Camhs? Referral to paed or camhs? Ask GP for counselling?

You need to be very specific in your end goal, and tell Gp that's what you want and don't take no for an answer. I fear most of the above GP referrals will get rejected though because that is standard.

All the above will take a long waiting time. You are best off arranging private counselling in the meantime.

I said I wanted her referred to whichever service can provide further assessment of her difficulties as we'd like to pursue an ehcp to ensure her needs are met at school.

If you think GP has poor knowledge of MH. If the case this morning was closed. Both require complaint to GP practice manager?