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 think it’s generally accepted that the diagnosis can be challenging in some people, the criteria they base their decisions on aren’t perfect, and there are so many variables. I completely understand your immense frustration, I honestly do, when you yourself have known from such a young age, but honestly I don’t think you’d get anywhere at all if you tried to sue, they will simply say they made the decision based on the information/how he presented at the time.

You can certainly try suing, OP, but I think you are extremely unlikely to be successful. I don’t see how you could prove negligence. Plus the process would take years, likely cost a huge amount of money, and probably make you even angrier and certainly extremely frustrated.

A gynaecologist made a massive error of judgement in my pregnancy with DS1. Due to this gynae’s error DS was born at 24 weeks. He has multiple disabilities as a result, including autism (please nobody pop up and tell me he’d have had autism anyway - it isn’t always genetic - every single one of his HCPs over the years have agreed that the autism is as a direct result of his prematurity). We thought about suing. The hospital told us verbally that a mistake had been made and gave a verbal apology, but they wouldn’t even put it in writing. They stated that even without the gynae’s colossal fuck-up, DS could still have been born that prematurely, and that would have been their defence had we sued.

I think your chances of successfully proving negligence are vanishingly small.

Anyway. DS1 has had an EHCP since he was 4. He didn’t get the autism dx until he was 9, and this included a previous consultant not diagnosing it. When diagnosed with ASD age 9, we were told he didn’t have ADHD. Aged 15 he got an ADHD dx. He does attend a special school but a huge number of students with ASD do not.

Honestly OP I think you have a rather rose tinted view of the EHCP and special schools allocation process. Good luck with it all but personally I would channel my efforts into getting the support he needs now.

This. Op - YABU.

No. Spend the money and energy progressing his prospects and chances now

If you've known since 2, diagnosis or not, honestly some of the things you've said your son now has issues with are things you as his mother could have worked on with him. (As well as his other parent)

As soon as we knew our son was Autistic we adapted the way we parented him and worked on the things he struggled with more than his peers way before he got a diagnosis. His issues can't be fully blamed on the NHS or school. I'm not saying you're to blame either. Sometimes there isn't anyone to blame, sometimes that's just how the person you love is and it's a case of accepting and moving on.

I self referred my daughter through the neurodevelopmental pathway form that I got from the GP as I asked. Then hoping to get an EHCP which you can also self refer for, so she can get into a specialist autism school. No school involvement. Is this a new thing that the school doesn’t have to refer?

Autism isn't a mental health condition but it is hard to diagnose, yes. It's unlikely that 5 different doctors would give 5 different opinions on something like autism, the diagnostic criteria is very clear, but it is somewhat subjective which is why the assessment is done by at least two practitioners who have to agree.

Sorry OP, but unless you can prove that the first doctor ignored NICE guidelines, you haven't really got a chance.

Diagnosis pathways vary from trust to trust which makes it much harder.

Well, how does it? If your child didn’t meet the criteria at the time given they and the criteria were probably evolving and changing in those 6 years - how is it negligent? There’s no conspiracy by health professions to ignore glaring red flags or not diagnose people. ASD has absolutely exploded in the last 10 years so it isn’t surprising that the diagnostic process has probably changed.

I understand why you want to sue, but unfortunately even with a diagnosis, all of the help and support you think your DS would receive does not exist for the majority of autistic children. My DD was finally diagnosed at 13 despite it being obvious at 18 months there were issues. She was non verbal until 7 for example. Having a diagnosis changed zero about her care and treatment. The NHS diagnosed her, sent a report through and then promptly discharged her.
I doubt you’d have a case even against the education authority, as the first thing they would ask is “ if the school was so damaging and unsupportive of your sons needs why didn’t you move him?”

No I don't think it's the NHS that has let child down. More the school as children get older they are very good at masking trying to mix in with they're peer's, You come also have done more taking DC to GP and asking for a referral.

No you should not.

IANAL.

I'm not sure you could sue- my understanding is there's normally a limit of 3 years to sue the NHS for medical negligence. Although maybe in your case it would start from when you received the diagnosis?

I'd also add that the money you'd receive in these cases is based on a number of factors, some of which don't apply- such as physical injury, loss of earnings and cost of care. You'd have to prove that any loss of earning/cost of care would have been mitigated by a diagnosis, which is hard to prove, because many parents of autistic children have to give up work or pay for care. I'm not sure how you'd prove loss of earnings of your child either, because the NHS didn't cause the disability, just failed to diagnose it.

Probably the only area you could claim damages is emotional injury, and again, you'd have to prove this was caused by the delayed diagnosis, and not having autism in itself- I'm not sure the delayed ECHP is proof, as this was ultimately still awarded before diagnosis.

I think you really need to speak to a specialist solicitor if you haven't already- they are the ones who can actually tell you if you can a) pursue your claim, b) if there's a reasonable chance of success and c) how much money you might stand to gain, and if it would be worth it.

It can take years to resolve these cases, and I'd say the next few years are crucial- if you now have an ECHP, your son can get support to study to 25, but finding the right setting for him that will enable him to succeed is likely key. It may be best to focus on this, rather than a case which I don't think would result in a large payout.

I would just like to challenge the misconception that 'special school' or 'specialised school' is only for children not capable of mainstream or in some ways not bright enough.
Two of my sons have attended special Ed schools, have been offered post 16 options and have gone on to university. With EHCP's.

Have a consultation with a solicitor if you think you have a case. No one here can tell
you whether you have a case or not. Though just from what you’ve laid out here, from the opinion of a non legal professional “, it doesn’t sound like you have a strong one.

It seems like you want some form of recognition or recompense from the NHS and you are rightly angry. But this will be a long, expensive and probably fruitless exercise and your son will still be in the same position he is in now.

Sorry, as I imagine this situation is awful, even worse when you can see how that initial diagnosis made it worse.

@Tandora not necessarily harsh realism in my case - the level of proof is set very high to be successful and even if a solicitor would take it on as no win no fee you still need money to pay for expert witness reports and that comes into thousands and it takes years and a lot of stress. The problem is that you had two difference medical opinions and with something like autism it is as we all know diagnosis is complicated (but as a Autism specialist consultant said to me " you can have a doctor with interest in autism doing a assessment or specialist - this can lead to problems getting a diagnosis" ) Its not that we do not have sympathy, most of us with children (now a mature adult in my case) within the spectrum have complex stories about assessment.

This would not be classed as negligence.

My son has had a diagnosis since he was 6. And the only real benefit is: melatonin for sleeping and later on he’ll have extra support for exams. I am still fully expecting him to go through rocky teens and for all I know he may well end up in your sons shoes regardless. A diagnosis is not a solution.

No. Don't be ridiculous!
It's very likely that DC didn't meet the criteria threshold at 11. Some of the criteria are quite subjective. A diagnosis doesn't always entitle them to extra support so it might not have made a difference.

We are 2.5 years in, and still waiting on our final assesment. She missed all of the last 2 years at school, and, could well now be turned down for college (despite having the right qualifications). We can’t ask about “reasonable adjustments”, or her a place for her (due to disability), as we can’t get a final diagnosis.

Its shit, and I’ve half a mind to sue them myself

No

My brother (now 44) was repeatedly misdiagnosed and my parents were blamed for his struggles. Only diagnosed in late 20s when they took him to a top professor and he was so angry for them

FFS I really hate this modern world. Get on with it. There are others in much worse positions involving late cancer diagnosis etc.

It's not a competition.

I know you’re angry but the NHS did not fail your son.