To want to sue the NHS for not diagnosing Autism

[HufflePuffllePuff]

DC had full assessment at age 11, told did not have ASD. Assessment was a 2 years to wait, should have been referred earlier but school negligent and wouldn't refer.

Later reassessed at age 17 (after another 2 year wait) and told clearly does have ASD.

That they didn't get a diagnosis at age 11 (just started secondary school) has had a massive impact on education and has led to where we are now. No qualifications, no skills, no hope of a job, debilitating mental health issues, no living skills, spends most of the day in bed, won't go out due to social anxiety.

Now I can understand that in some people ASD is diagnosed late as it hasn't been picked up on.

This was though.

I knew from around age 2 but HV fobbed me off. GP said school must refer when issues started immediately after they started. School refused to refer until they were 9 because they decided he was immature and naughty.

Full assessment was done at age 11 but was told they 'didn't meet criteria' and why did I want a label anyway <side eye>. At 17, doc said he was very surprised at previous conclusion.

3 year time limit to sue is very close.

Would you?

No, I wouldn’t sue. What’s the point?

There is a very long waiting list for ASD assessments and children do have to carry on with their education. However, your SENCO at school should have been more proactive and engaged with the educational psychologist to consider what additional support your child needed, regardless of a diagnosis.

Between the SENCO and your GP, you should have been referred to the disability social services team to get a social worker to advocate on your behalf. But as his mother, I would have expected you to be more proactive too. Nobody held our hands when our sons started school, as soon as we realised they weren’t learning in the same way as their peers, we pressed for a social worker, HV, educational psychologist, speech and language therapy and OT. While we were waiting for assessments (a few years!) we attended workshops on autism and ADHD and joined special needs sports clubs etc to get to know other parents and trade experiences.

I don’t think suing anybody is productive. Just learn from it - ie only rely on yourself to get things done. It’s bloody frustrating and we had to get our MP involved at one point, but unfortunately you have to be pushy.

My trust only give me 4 theatre lists a month... And half of those are either short of an anaesthetist or oda...

I could try harder I guess, if you fancy being operated on in my garage, or the car park, with no anaesthetic.

Well, after my last experience with an NHS surgeon, I'd politely decline in the first place and save you the hassle, then make an appointment to see you in your private practice when you have the time and the inclination to do a decent job!

Autism isn't a thing that you either have or you don't have like measles! The same person would be diagnosed by one professional and not by another, neither is right or wrong.
Which is why a diagnosis of autism isn't helpful in itself and it is the impact of the condition that impacts the help required.
No kid is going to get specific input at school because they have autism because the stand alone diagnosis is meaningless.
The help will come because of difficulties they experience with this that and the other. Did he get this sort of help? If not take that up with those who failed to meet those needs. And remember lots of children will experience the same difficulties and never have a diagnosis.

What's the point of putting all your energy into fighting the NHS? Put your energy into helping your son now.

If I were to sue for something like this, I would say to sue for a change in how they test when the initial tests show that the person is close to the numbers for being diagnosed. I think at such times, they should test again 90 days later. Automatically, not with the parent having to appeal and fight for it.

Sorry If I missed it OP but did you not seek private treatment for him?

Quite apart from anything else, it's very expensive to sue someone/a body of people.

I feel similarly, my daughters diagnosis took 9 years and she has fallen apart in that time, unable to go to school, unlikely to get her GCSE's. Mental health deteriorated. I'm not sure how you can sue but it feels so wrong that the system is failing our children and having a huge impact on their lives

You are being unreasonable.

im autistic. My daughter is autistic. I work in an autism specific environment for over 30 years.

rarely do people actually understand autism. If they’ve said no…you can try and go independently but that doesn’t mean the NHS are wrong.

educational support isn’t determined based on diagnosis. It’s based on evidenced and identified needs. If your son got no where it isn’t because he wasn’t diagnosed.

I don’t have the time to wade through all the posts. Why did you not have your own diagnosis? You could have had a private diagnosis. Yes you’d have to fight for school support. Yes it’s costly but less than half the price of a holiday.

Sometimes life isn’t fair, but we fight for our children and pay when authorities don’t cough up!

Poor you, and you have been let down badly however is there professional advice you can get on your chances of success?

As I understand, this is a fairly complex process and there would need to be clear evidence of negligence (not just a different opinion on what should have happened at age 11) ) and clear evidence of detriment that would have been categorically avoided by a diagnosis earlier and that DS issues are not as a result of other factors. (I am sure they are not but that’s what the health authorities will argue in defence).

No. Of course you shouldn’t try to sue the already crippled NHS. A diagnosis would have made very little difference to your sons prospects as he would have got the little support that’s available for being a low achiever with it without a diagnosis.
min the big scene of NHS errors, it’s not a biggie.

Put your energies into supporting your son, he vlearly needs it. Don't wate time and money suing the NHS

The NHS it’s on its knees. Your son in healthy. Medicine isn’t an exact science. If people keep suing the NHS there will be no money to even provide services like this.

many schools refuse, they think they know better and can manage

you are not going to get anywhere by suing imo

and tbh you could have asked the GP again if the school didnt see the issue

Getting a diagnosis of ASD or ADHD doesn’t result in child automatically getting a EHCP (in particular FT support) nor does it mean that child would get a place in specialist provision. You describe child as having ‘low level behaviour issues’ and borderline learning difficulties - these needs are definitely not severe enough to additional funding, not in LA where I was SENCO.
No, I wouldn’t sue as school just have to prove child was getting additional support (you actually describe head supporting him) and quite often parents think that this support is a TA or another adult ‘Velcro-Ed’ to child’s side but it isn’t necessarily this. It can be many things.

No. ASD can be incredibly hard to get a definitive diagnosis. And what you experienced is pretty normal. Concentrate on the here and now. I don't think you have a claim.

I understand why you want to sue OP as you must be very sad and angry at what 'could' have been, had you had a diagnosis sooner.

Yes, as PP have said, a diagnosis alone wouldn't have necessarily been enough to get the support to meet his needs, but it would've been a good starting point! In my experience it's hard enough to get professionals (I'm thinking school staff especially) to understand needs when you have a diagnosis, and without it, it's surely even harder.

To prove medical negligence is very difficult. My understanding is that there has to be both clear evidence of injury, and then following from that, clear evidence that the injury caused damage. I don't think either would likely be possible in your case, but perhaps it would be worth talking this through with a solicitor to be certain.

Try to focus on moving forward now, and well done for finally getting the diagnosis and EHCP! If you can, put some of your energy into learning the legal framework around SEN law and in turn, adult social care law (The 2014 Care Act). Use the legislative guidance to help you. This will be the best thing you can do and will equip you with the knowledge you need to maximise your DS's support (and prevent further failings) in the future.

Spend your money and time directly on your son.

Sue? No. You can't prove they were negligent. You can't sue the nhs because life hasn't worked out the way you'd like. I'm sure lots of us have had issues with them, we could have sued but didn't. Years of stress for a few quid? No thanks. As so many others have said put your efforts and resources into helping your son now, it sounds like he needs it.

HufflePuffllePuff, I feel awful about this. I am so sorry! My first reaction was, 'Don't do it they'll make you so upset!' That was before I read through your responses and the story of your son. In a short time I was horrified. I have some professional experience in Autism but it's from a while ago.

I think you need to fight this battle for your son. He has seriously been let down, poor young man. Did the latest diagnosis come as a bit of a relief? It often does to older people who say "I knew I was different!". Anyway, 4 detentions in a day is utterly ridiculous and the school should have asked for an assessment.

Are you in touch with the the National Autistic Society? www.autism.org.uk/
I think it might be worth seeing what help they might be.

I wish your Dear Son (wanted to write in full!) the very best for his future and you too in your dedicated support for him. I hope we'll hear from you as to how things turn out. He deserves compensation for the help he did not receive and damages for the sufferings he endured as a consequence. I do hope the the NAS can find you a Solicitor. With my best wishes and love to both of you.

I can imagine it's incredibly frustrating for you OP. You just want the best for your child bit diagnostic criteria changes frequently. He may not have met he indicators at the time. I'm not sure what suing rhr NHS would achieve.

With great respect, many people are saying do not seek redress for the most ridiculous reasons. The NHS may be 'poor' and 'crumbling' but that does not mean it can overlook the needs of a teenager for 6 years.

It is true that the diagnosis is not meant to be the basis of the monies given or decision of placement. It should be done entirely on needs as specified by the individual case. This teenager clearly had huge emotional needs but they were only 'met' with dishing out detentions! Where was the support for his real needs? Who had looked into those? Did anybody analyse his sensory needs for example?

With every complaint the service should improve. It is not just one young man who might get at least something to help him, but the hope that younger teenagers will be properly assessed and not left in limbo just because one person made an assessment that was insufficient when he was 11.