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 wouldn’t be considering suing but I can see why you’re frustrated and upset.

My son is awaiting a diagnosis (which I’m pretty sure he’ll get), and I’d be very confused if they told me he wasn’t autistic at this point. Also the part of being asked why you want a label- I also got asked this at his first referral, which I found very odd! The HV asked what I was “hoping to achieve” by seeking an assessment. I don’t know what the expected answer is to that or why it’s asked- but I just said I wanted to understand my son and give him the best opportunity to be supported in the way that he needs to be. He is the way he is, a “label” is really inconsequential to his actual experience, but could be helpful in situations where his behaviour needs explanation.

Did you request a second opinion when you were told there's nothing wrong at 2 and 11?

Those saying a diagnosis is not a 'golden ticket' for support services, not that anyone wants that golden ticket anyway, it's a shit ticket. Funny how he was immediately eligible for a disability social worker, eligible for a referral to the adult ASD disability team etc. Not that they're any use of course as all we get is phone calls and visits with no actual action but still 6 years earlier intervention while at school could have had an effect.

At the very least he could have been eligible for a specialist ASD school of which the ones I've looked at require require a formal diagnosis.

His recent Educational Psychologist assessment report states that his late diagnosis is likely to be the reason his outcomes have been so low and if he'd had earlier support he would have achieved better and his LDs may not be LDs at all but due to not being able to engage as no support to.

For a start you have to sue within a certain time period (3 years I think) second unless you have what a solicitor advised as a good case you would have to pay yourself (and that will be 10s of thousands in legal expenses) and even than you would have to pay for a specialist to read all your son's medical notes and give his opinion and that will cost thousands .... to sue you need a clear cut medical case and as someone whose adult daughter is within the spectrum (and as others may guess from my comments we have sued the NHS for negligence on a very serious surgical event I know something of the system)
If its within three years you could do a hospital complaint (you have to do that first before you sue anyway)and from our experience get support) its frustrating my dd was diagnosed with epilepsy and given drugs for it for several years before she was finally diagnosed with asd (after I fought for it with NAS support) and no, it never occurred to me to sue
I don't think you would have a chance and it would cost you the earth

If you want to sue anyone surely it should be lea for not providing adequate support.

You really are being ridiculous.

You haven't a hope in hell.

That's why I tell all my friends not to rely on school at all. If you see something amiss, take it into your own hands. For example, if the school refused to send a referral for an ASD assessment, I would have gone through my GP to get this done etc.
Agree with this.
EHCPs are needs driven and don't require a diagnosis

Some children have a diagnosis and no EHCP.Others have no diagnosis and an EHCP.

Schools aren't the gatekeepers and can only report on what they see.

As parents it's our duty to appropriately challenge professionals and pursue different avenues for our children.

Payment come from insurance how can you be an adult and not realise that?

Your DS now has an EHCP.
If he’s not receiving the provision outlined in the plan than have a judicial review.
If the plan is poor or the LA aren’t naming your college of choice then appeal the plan.
Focus your energy in areas you can help. Your DS can keep his EHCP up to age 25 if needed - make sure it works for him.

@Cocobutt

Your view of specialist schools are a bit ignorant. There are specialist schools for very bright children and most are independent. Parent primarily put their children into these schools because of provision that children are unable to receive that level of provision in mainstream.

Firstly I am really sorry about your situation,your frustration and distress are palpable- and unsurprising. Given what others have said upthread, surely the way forward is to focus on your son’s best life GOING FORWARD. In any case,this is not the US where we have to pay for every damn thing so medical negligence lawsuits are commonplace, to repay the considerable financial outgoings involved in putting right or dealing with a mis diagnosis. This is the NHS: so every thousand pounds you might receive in compensation means a granny won’t get her hip replacement or a daughter might not be offered the birthing choice she wanted. All of this costs money; thanks to our lovely Government, the NHS’s is constrained, and finite.

You're correct about adult services, in my area the client has to have a diagnosis to be picked up by the ASD adult services

But I would love to know what local authority you are under for a children with disability SW. Is he now open as a CHIN?

With my LA there is no way he would be open to children's services in the disability service without significant physical disabilities.

Ed Psychs dont really understand how the systme works unfortunately, they think they do but will often talk about services and supports which dont exist so her assumption that he would have progress with this or that with an earlier diagnosis is pie in the sky Im afraid.

As others have said, medical negligence is quite a high bar. It isn’t simply a matter of them having got it wrong.

I can see why you are frustrated and angry. And I can see that a settlement might help your DS get the help he needs now to become more self sufficient and get more out of life. However this may not be the best use of your energies.

Suing someone isn’t a walk in the park, it likely will take significant time and focus and possibly money too. Time and focus you could use to help your DS more directly. If there isn’t a good chance of winning a decent amount, you (and your DS) would be better off if you learnt to let this go and move on.

I think your best bet is to find a solicitor who comes highly recommended and is prepared to take it on a no win, no fee basis, as then you will get a fairly brutal but accurate view of your chances of getting anything significant.

You might also benefit from some counseling and learning to forgive the people who fought you throughout your DS’s childhood. Not for their sake, but for yours. It can eat you up and leave you unable to get the best from the future. And you and DS deserve a break from that bleakness.

I haven't RTFT so apologies if this has already been raised. If you're wondering about a claim, it's worth enquiring with a few firms. Contact the Law Society and they'll be able to give you details of firms who specialise in this area. Make sure you go to a specialist and not just a firm dabbling in clinical negligence. Check whether they're accredited for clinical negligence work.

A couple of things to bear in mind:

1. Assuming your son has capacity, when he turns 18 it will be his decision to sue rather than yours.

2. in cases involving children, the limitation period expires on their 21st birthday

I am sorry about how you have been treated and I can totally understand your frustration, but I think suing would not help you or your son. It would be months and months of more stress and just increase your sense of injustice.

Its very difficult when you have been battling schools for years - but that might have been the case even with a diagnosis. We spent years battling for a diagnosis, eventually went private after waiting for so long, years explaining to the school what it meant, whilst DD mental health nosedived. School refused to apply for an ECHP. So we waited till secondary - a year to get an ECHP, then another year battling for each individual teacher to implement it. Then you get a change of teachers and you start again.

Its great you have a disability social worker now but that is not the norm. We have fuck all - we were on a CAMHS waiting list so long so we had to go private for a psychiatrist, a therapist. Our autism contact worker is so far behind they literally never catch up and we have not heard from them in about 4 years.

We now homeschool. Everything that has happened that has helped DD I have had to do. And it takes all my energy. I don't think I could do that and sue the NHS at the same time. I know it is shit, and its unfair, and you deserve for someone to say - we are sorry, we fucked up. But its not going to happen and it is just going to take your energy away from all the remaining fights ahead.

I think your blame and frustration is wrongly directed.
The NHS will have worked with the information they had and the information they gained at the assessment.
They meet your son for a limited amount of time.
Yourself and the school are the ones with the long term knowledge.
Your frustration should be with the people who didn't assist you and help provide the supporting information to the NHS.

My son was diagnosed at 3, he’s had all the stuff you say would have changed the outcome for your son, he attended a specialist school and had support outside of school. He’s 18 now and almost exactly as you describe your son. He rarely leaves the house due to anxiety, he has no qualifications and very little independence. His mental health is awful even with medication. You don’t know things would be any different had he been diagnosed earlier. Sounds like the issue was the school not giving proper support.

At the very least he could have been eligible for a specialist ASD school of which the ones I've looked at require require a formal diagnosis

That is true op. You do need a diagnosis if you want your child to a specialist schools for children on the spectrum (as an example).

An EHCP is not written based on a diagnosis, it is based on need. Most of the children I wrote EHCP submissions for didn’t have a diagnosis.

Diagnosis doesn't automatically lead to additional support. Additional support, where needed, is supposed to be given regardless of whether or not a diagnosis has been received, therefore the fault doesn't lie with the NHS for failing to diagnose, but with the education system that failed to identify and support his additional needs. If the decision makers in his school and other settings failed to support him solely because he didn't have an ASD diagnosis then that was very wrong of them, and it is they that should be held accountable, not the NHS.

My DS has a diagnosis. This entitles him to diddly-squat. Fortunately, the school he is at is well aware of their duty to provide additional support as needed and they give the same support to my DS as another child with similar needs but no diagnosis would get. Also fortunately, the level of support he needs is relatively modest (e.g. he doesn't need a 1:1 TA as some do). My DS doesn't have an EHCP but if his needs couldn't be met without additional funding, the application for an EHCP would be all about his needs and the existence or otherwise of a diagnosis would be irrelevant.

So YABU, sorry.

But I hope you find a way to move forward positively and find ways for your DS to thrive. It's not hopeless, there are many opportunities to learn and grow which specialise in helping young people on the spectrum so I hope that you find the right one to help him.

What would you do with the money?

@secular39

That isn’t actually true. I work in special schools and whilst is blindingly obvious to anyone our students are autistic some of them have not actually even been through the EHCP process. They’ve never been able to cope in mainstream hence why they’re with us.

My daughter is clearly but masks at school and hospitals so it's easily missed.
She is on the waiting list for assessment but I'm not holding my breath for a diagnosis.
She has got a private diagnosis but school won't use it they want an nhs diagnosis before they will get her extra much needed support!
Girls are so much harder to diagnose (her brother was diagnosed age 3) so I'm expecting we will have to find our own support.

When my DS was diagnosed, the consultant was at pains to explain that my son's diagnosis of ASD was very much relevant at the time it was done (a snapshot in time he called it) and that things can change. Not that ASD goes away, but in terms of diagnosis and assessments, he said it tells you what his profile and diagnosis is today but if you redid it in six or 12 months then it might be different. That sometimes people can fall out of the diagnostic criteria at different times. I didn't question this at the time but thinking about it now, I'd love to ask him more. Anyway my point is that I'm not sure you can sue for negligence in this instance unless you've had legal advice that says otherwise?