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?

I'm really surprised by the answers here - I would sue.

Yes, I would sue. I'd be considering suing the school too.

However, the defense is a big, fat shrug, and the very valid point that you could have chosen to seek a private diagnosis.

Well you never asked for a reassessment in all that time.

Did you challenge the decision? Did you seek an EHCP? Did school put any help in place?

To be fair, there's not much help available even with a diagnosis and most of it can be accessed without a diagnosis.

The threshold for medical negligence is very high. It’s not my area but in order to succeed you’d basically have to establish that in the light of all the information and evidence that the relevant clinicians had or were able reasonably to obtain at the time, no reasonable clinician could ever have formed a view that he did not have ASD. To get any compensation you would then have to prove that outcomes would have been different if he had been diagnosed. Very difficult OP.

Isn't it a panel that decides? So yeah yabu it's not just the NHS that decides.

He was diagnosed at St Thomas's an NHS hospital in London by a consultant in the children's neuroscience dept as opposed to NHS Paediatrician at local development centre, so I don't think they'd have much of an argument that they're wrong as well.

Of course the outcome would have been different!

He'd have got an EHCP for a start and been referred to children's disability teams, had a chance of a specialist school rather than the Head of his mainstream school constantly trying to manage him out due to low level behaviour issues directly related to his ASD.

He was given a diagnosis of borderline learning difficulties at age 11. Didn't get shit from that.

Why didn't you refer yourself?

Yes, or at least explore the possibility. I don't think it will benefit you much (or at all - it would probably a hugely negative experience) but if you win it could help parents in future

I understand why. I have a similar story (I brought it up with hv at 2 year assessment, then at school, finally got an assessment y8 but told no, moved house new la and got a diagnosis aged 17 - a very frustrating processes). However the freeholds for negligence are high, its difficult to prove your dc loss in financial terms because dc was school age, wasn't earning a wage. The nhs can say too much masking at first assessment, not enough evidence I think it would be very difficult to get. I would concentrate on getting dc the support/education needed (especially before he turns 19 as education will be free). Also is he claiming pip or any other benefits he's entitled to? Can you get a referal for support before he turns 18? dc turned 18 2 months after diagnosis so got no support because then classed as an adult, college put him on a waiting list for assessment for support knowing he'd have left before he got anything so the sooner you do these things the better.
I understand your upset and frustration but I think it would be futile.

As a diagnosis wasn't given at age 11 because of " lack of evidence", it's hard to see how you could blame the school too, they did refer even though they presumably had little evidence either.

YANBU but unfortunately no matter how much of a shitshow the NHS becomes or how many times they eff up royally and ruin people’s lives, it is the golden cow that can never be criticised or held to account so I wouldn’t expect the outcome you deserve.

You dont need a diagnosis to get an EHCP or attendance at specialist school, the support offered by schools is not diagnosis dependent and often where children do have a diagnosis, the support isnt there anyway.

All levels of professionals can be wrong, just as all levels could be right.

Sorry I'm now thinking about it and it might not be a panel that disagnoses - im thinking of ehcps.

You don't know he'd have got an EHCP. Or a place at a special school or that the disability teams would have done anything

YABU

Autism is a spectrum. It presents in many different ways, and was poorly understood, even 5 years ago. The NHS is made up of human beings, not machines.

You do realise that autism isn't something that the NHS treat? They can say that your child has it but the school etc would be the ones working to support your child. Neuro diversity isn't really the responsibility of the NHS except ensuring that people can access appropriate care in an accessible way.

You would be unreasonable to sue the NHS especially as they couldn't actually do anything to change the fact your child is ND

No, I would not.

I would probably be angry (as you are) but I would not want to portray the idea that this single event at 11 somehow ruined his life. I would want to demonstrate that he still has his whole life in front of him and encourage looking to the future, not the past.

Considering his poor mental health now I would not want to feed an idea that everything is the fault of the Dr who saw him when he was 11.

But I am only answering this because it's asked on a general board. I have not been in your position.

Sadly as a SEN parent I think the emphasis is on you to push for support. My son was diagnosed at 2 and it's been non stop challenging decisions and pushing for more support. It's a terrible system and I'm so sorry you've been so let down. Are there any autism services locally for your sons age?

@Sugargliderwombat
In my area, it's a multi disciplinary team that gives any diagnosis, the community paediatrician collects the evidence for the team.

I did push for reassessment. How do you think he got his diagnosis at 17?

I was told Paediatrician who wrongly diagnosed would have to agree to a reassessment. Seriously! She told me I was making excuses for him!

Took her about 18 months to do the referral. Then 2 year wait for the actual assessment in London. Diagnosed on the spot!

Dear OP,

I am so sorry that nobody helped you and your son properly until he was 17. It’s shit and it’s unfair, it sounds like school in particular blocked you many times and left you with doubts. 💐

I’m a late diagnosed Autistic and you both have my absolute greatest sympathy, knowing can make a colossal difference to Autistic peoples lives and a lack of a diagnosis really multiplies our suffering ☹️

I think you should do whatever brings you both the most support and peace at this point. X

I really feel for you and your son but I think it would be almost impossible to provide negligence in these circumstances. There are various elements needed to prove clinical negligence but you will need to show that there was a breach in the duty of care abs that breach caused an injury or loss that wouldn't have otherwise occurred. I think you'd struggle to prove a breach of duty of care where there was a judgement made based an an assessment of your son. I think you'd also struggle to meet the criteria of showing how the breach, if there was one, caused a loss. This last bit is often the most tricky because there is a very high bar for this.

It’s very difficult to prove he would have got an EHCP.

One of my DDs has an ASD diagnosis and wouldn’t been eligible for an EHCP and didn’t need one either.
My DSs EHCP was issued for a speech difficulty before he got his ASD diagnosis. Much of the support was tailored for an ASD child before he was even referred for assessment so the diagnosis didn’t change anything in the EHCP.

You stated that your DS was diagnosed with borderline learning difficulties, did you use that to push for an EHCP? With that he would at least have reached the threshold for an EHCP assessment.

No.