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?!

Hi OP, I'm sorry this has happened. Our GP was kind and helpful (DD was violent to us) but knew very little. When I managed to get her assessed they took notes! Should have sent them a bill!!

We have spent over £4k on assessments for ASD and ADHD, psychiatrist, Relate, play therapist, optometrist, physiotherapist and podiatrist. We are still on the waiting list to see an NHS paediatrician.

Also trying to get an EHCP sorted before secondary school.

Sadly it's nothing new, been in the system myself for 18 years now since i was a teen, it's always been dreadful, the number of years i've spent on waiting lists is ridiculous.

Oh please, it's well known that mental health services are generally not great. Not saying that everything is awful, but there's a reason they've long been described as a 'cinderella service'.

When do we do this though? For example I'm either working or looking after my son between 8am and midnight. And he often wakes me in the night. It's a struggle to cope with work let alone any in-depth reading.

Fair point. I don’t have a good enough answer for you. 😞

(We’re not supposed to have to work so much for so little! Everything stems back to this bloody terrible government.)

OP I'm sorry I haven't had a chance to read the whole thread. But I just wanted to say that I completely understand where you are coming from. My eldest is diagnosed autistic and it's been hell trying to get her any help with anxiety etc. She gets crippling stomach aches with her anxiety to the point she can goes days without food or water because she is terrified she will be sick, (she suffers from emetophobia). We end up in these constant cycles where she becomes anxious about something, then her stomach starts to hurt, then she refuses food, eventually gets hunger pains, anxiety increases due to hunger etc. I've spoke to so many GPS and they all say there is nothing they can do. She doesn't meet the CAMHS criteria. Her anxiety started at around 6 and was at its worst during lockdown. DD is 10 now and even though she is still suffering she has started to find ways to cope. We ended up paying for private therapy which helped. I don't know if that is a possibility for you? You could push to get a referral to paediatrics, they should be able to refer for further assessments, but depending on your area you could be in for a long wait.

I speak as someone whose child has suffered a serious depression and will probably always do so. She had a bit of advice re CBT but that was all. She had to give up her job - and career.

The NHS cannot fund MH services adequately - it's just an impossibility because it's so open-ended. Even if all patients were offered, say, 6 counselling sessions, that would hardly ever be enough. MH problems are ongoing - sometimes lifelong. While we'd all wish for an ideal world, I just don't think it's possible for the NHS to deal with these very time-consuming, open-ended conditions properly. I don't know what the answer is - can anyone make any suggestions?

The NHS is on its knees and MH will always come further down the priority list than immediately life-threatening illnesses. I certainly don't know what the solution is!

@giggly you have no fucking idea, mental health support for kids is non existent. Wait to start an autism assessment in our area is 2 entire years, and all other support that can follow in school hinges off that ( it shouldn’t but it does) that’s a child struggling identified in primary school and not assessed until they are in high school. Oh and don’t expect any support for a child with suspected autism who also has anxiety as children with autism don’t qualify for mental health support. So no the OP is not wrong and you have also misunderstood what they closed. Your ignorance is astounding and it sounds like you think you’re an expert I sincerely hope you don’t work with vulnerable people.

It gets worse once you have an asd diagnosis. All MH is fobbed of as 'it's part of your asd'. Local services here regularly refuse MH support for asd children.

If she has sensory difficulties and you can afford it I would recommend finding a sensory integration trained occupational therapist (your local nhs may have one you can be referred too but not areas do, ours doesn't). They can assess her sensory needs and make recommendations about what can help. This may help others take you more seriously when they do a report. You could also use it as evidence that an education, health and care needs assessment is needed if you feel she needs an EHCP to ensure her needs are being meet at school. In my experience the issues you're having suggest school are meeting her needs which is no surprise if the senco has the attitude you've described.

I mean School are NOT meeting her needs

Yep, 26 months here when we joined the list. Though after a lot of work by the school, and the engagement and inclusion teams (DS is school refusing), we might be getting seen earlier.

Thanks everyone for your replies. I'm much calmer today and have finally managed to submit the extra information to the GP. I've asked if it's possible for referral to paediatrics as we're not sure of the root cause of the anxiety and SPD (I have a suspicion it could be ADD). Occupational therapist is another route, particularly if it gives us evidence to use for an EHCP. And on the broader issues this thread has raised about mental health more good news. I'm looking at relevant courses I may be able to undertake to gain a qualification in a relevant discipline to help parents and children in similar situations regarding mental health. I already have a good career but I've been considering what next, and I feel passionate enough about this to want to help others. Not sure exactly what/ how (I can't afford a full psychology degree, either financially or time wise). But I want to do something.

Glad things feel better today op.

Re the possibility of ADD - this was my first thought for my dd too, and she has been assessed for it alongside ASD. The doctor has diagnosed autism (dd is an expert masker - the doctor described the way her ASD presents as 'subtle, but not necessarily mild') , but wants to treat her significant anxiety before diagnosing ADD - the symptoms of anxiety can mimic the symptoms of ADD. Unpicking it all is so complex. The treatment my dd is having for her anxiety is working brilliantly, but it is geared up for ASD and is multi-pronged!

We saw a specialist paediatrician, who works alongside a clinical psychologist.

Am I correct you are thinking your child is likely neurodivergent and needs assessment? gatekeepers to referrals are often lacking necessary time and more importantly knowledge to refer. Then there is waiting and waiting. I’d look at the profile of asd and adhd and see if there is a strong suspicion of one diagnosis or whether it is unclear and both may be on indicated (higher incidence of adhd in autistic people than general population) and then look at referral processes and push for referral if indicated. In my area adhd is under 9 months asd 3-4 years do that may impact your next decision. I know the system from both sides and got this facilitated for DC2 who has now got an ADHD diagnosis. School said ‘but DC doesn’t mean anything by it’ as I highlighted behaviours that mirrored the adhd diagnostic criteria and they agreed DC had all the listed difficulties - as though I was being critical of my child rather than looking to make sure it wasn’t just me saying she needs accommodations. I think there’s still an attitude of labelling your child whereas I just want the correct label not all the negative ones easily assumed in place of that.

DC1 I’m not even trying on the NHS as he is bright, highly anxious and masks. It’s a 3-4 year wait for ASD assessment so I’m going to go private and have the initial consult next month. It’s a lot of money so I waited until he was in KS2 as didn’t want to pay for a ‘watch and wait’ assessment. Neither of them have significant behavioural difficulties at school DC2 will fall behind if I don’t scaffold things - including buying resources to teach things missed in class, labouring the reading etc with all the adhd accommodations -movement breaks, Increasing sensory input etc. I have a relevant professional background so have tried to fill in the gaps where I can. I can see children in both my DC’s classes who may benefit from further assessment but don’t have a parent that knows the system and how to navigate it as best as possible. My kids relied on my knowledge as someone who is neurodivergent and is also in a clinical role and it still took effort. It’s so unfair for these other children - but not my role as a parent to suggest anything to anyone in this context.

if you do get a diagnosis it may be more helpful for school having to acknowledge difficulties etc. That being said accommodations for neurodivergent individuals and managing things in a way that affirms neurodiversity is beneficial to all children so it’s not going to be a bad thing to try and implement additional strategies. Sensory Processing Disorder will not receive direct support on the NHS unless it is clearly linked to impact on function. It’s not officially recognised as a separate diagnosis in the UK although sensory difficulties will be acknowledged. SI informed OT can be good but be careful of a thorough assessment with detailed school recommendations from a private OT as these cannot always be facilitated. Proprioceptive input and looking at interoception is also good. There’s a lot of info on this if you look up those key words. I often highlight interoception to older children with asd/adhd as better managing emotional dysregulation requires a lot of sensory awareness and input. Initially (and maybe even longer term) this requires external scaffolding. Anxiety in ASD often presents differently to neurotypicals and if you’ve not met threshold I’d highlight that. It’s difficult though because clinically you need someone with not only a good understanding of neurodivergence but who is affirming of neurodivergent experiences and perspectives. It’s luck of the draw.

I’m not sure if that all makes sense but I hope you get somewhere with assessment and support.

I agree with the above.

Quite honestly I don't know what help you are expecting, especially as there are people of all ages who have far worse problems.

Try not to make too much of a 'case' out of your child's difficulties, that will not help and she is likely to outgrow it anyway. I can remember being similar at times when I was a child and nobody understood but it passed. Hopefully that will be the case with your daughter.

However, as you are so concerned, I hope you find someone who can analyse and find a way out of the difficulties. Remember it is far worse for her than for you but parenting is very hard at times.

People do not outgrow ASD and/or ADHD/ADD. Perhaps the op's dd does not have one of these conditions, but she is absolutely right to investigate and 'make a case' out of it. She is doing the right thing for her dd. It is attitudes like yours that result in people struggling into adulthood, often ending up with extremely poor mental health. So dismissive and ignorant.

Unbelievable that people still think children can grow out of autism! OP you might be better off asking in a different forum rather than AIBU as you are getting some very uninformed and frankly stupid comments.