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?

suing for medical reasons is hard, it needs to be iron clad.
my husband had heart problems and was misdiagnosed 3 times over a period of 8 months. Ended up on life support and a significantly different heart because of it. No case for us and it was a clear failing in many areas

@MissWings

There is a difference between special schools and specialist schools.

A special school is quite generic. Most are maintained and can include a range of needs. You do get some special schools which do cater for just Autistic children, but they usually take a range profile of these children (in some cases anyway).

A specialist school are mostly independent and they take a specific profile of a child. so you have dyslexia schools, MLD or Speech language and communication schools, DLD and Autism, Mental health/anxiety. Within those school, the child, in additional of the diagnosis, has to fit the profile of the majority of the students (can undertake a mainstream curriculum) and most of these schools have lots of provision. You will find that they have an on-site speech and language therapist, occupational therapist, physiotherapist, clinical psychologist etc etc. Most of the parents who choose these schools do so in the knowledge that they will be unable to get (I don't 3X welly occupational therapist delivered by an OT) this sort of a provision in mainstream school. You can though- within a specified EHCP but it's often not integrated within school.

You do get some children who cannot manage mainstream and they end up in special schools. But for the majority, I believe anyway, parents put their children into specialist school so that they can get tailored support whilst still teaching their maximum potiental.

This is very interesting and true! DD diagnosis has changed from 'mild' (aspergers in old terms) to 'complex' over the last 8 years. I hadn't realised that this was recognised as a thing though.

What do you hope to achieve by suing? Money? Every second of time and money that the NHS spends on defending themselves is time and money not being spent on someone else's care. Please don't do this.

What payout are you expecting?
What will you do with it?
What damages have been caused as a result of a late diagnosis?

No and personally that’s a dick move. It wouldn’t have honestly made that much of a difference to your life, things like DVLA don’t need official diagnosis so it’s not a finance thing. Some children can mask the symptoms very well like my own DD.

Dp you think that maybe you feel a little guilty so allre subconsciously trying to shift that blame? Like many others have said there is no telling what way things would have turned out if he did get the diagnosis earlier. Unfortunely lots of asd teens end up like your ds. I have one myself(an asd teen) and feel like inspend my life watching him like a hawk because I am so aware of the mental health difficulties that can come alongside asd.

On a positive note a know a young man with asd in his early twenties who like your son left school with nothing, he spent a few years in his room doing nothing but recently got his first job. Things can and do change as they get older and the teen hormones leave the system.

With ASD you'll often find that one professional will diagnose someone with ASD based on their professional opinion whereas a different professional might have a different opinion and not diagnose ASD. You often get quite a bit of disagreement amongst clinicians as it very much relies on observations and judgement but also different clinicians sometimes have very different opinions of what ASD actually is.

Absolutely not, what good will it do you? Isn’t the NHS cash-strapped enough?

Pre covid had a terrible belly ache to the point I couldn’t walk. I phoned the doctor who refused to see me and referred me to the pharmacist for a bladder infection. The pharmacist then phoned the doctor, saying in his opinion it wasn’t that, unfortunately the surgery pulled rank and refused to listen. Long story short -it turned out by appendix had burst into my womb. Very nasty. My friend is a lawyer said that as long as you get the treatment, or diagnosis in the end- it’s nigh on impossible to sue.

Two different GPS insisted the school had to refer for assessment as DS was school age.

I went as soon as he started school as issues arose immediately (refusing to sit at desk, sitting underneath it, not sitting on carpet, running around in circles while blowing raspberries- probably stimming).

School refused to refer until Yr5 after lots of threats of exclusion, not allowed on school trips due to risk assessment, constant meetings with Head and SENCO. They said he was just immature and silly and didn't want to learn. DS's twin (an angel and highly academic) was there along with older DC and DS was very happy there despite constantly being told off as it went over his head so DH wouldn't let me move him. Think they decided DS was the 'demon' twin.

So happy when I got them into an outstanding secondary school too (not, as they were driven by results so didn't want DS there).

HV told me I was lucky to have a big house with space and loads of toys so should be grateful as she saw families with no space or money for toys and I couldn't compare him to his twin as they develop differently. Was not coping? (while he was literally bouncing off the walls in the background)

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.

@secular39

I’m sure there are some good specialist schools but all of the ones I’ve been to, although absolutely fantastic in every other way, do often restrict them in some way especially with HE and careers.

I believe my county gets less funding that other counties so maybe this is part of the issue but it’s something I get frustrated about regularly, as it is such a waste of talent and if they’re in care or have parents with SN then they’re even less likely to reach their full potential as they won’t have the support after they leave either.

Honestly OP, I’d channel your energy and frustrations on helping your son moving forward.

When he was 11 he may not have ticked every single box 🤷🏻‍♀️ It’s a shit system, I agree. But the dx process is very strict.

My dd went through assessment aged 16 - exact words upon discharge “frazzled dd has a very spiky profile, we just can’t place her, we can’t give her a dx of asd as she travels to college and likes music However, we’ve no doubt if she’d come through the system aged 7 or 8 she would have been given a dx of ASD ….. makes no sense whatsoever 🤷🏻‍♀️

Op. Honestly I think this might be impossible to win. As assessment is generally done over a day or two and you'd have prove that you ds clearly displayed autistic traits at the assessment that any reasonable doctor should have recognised as autism.
The balance of proof is any kind of medical negligence is really high and even more so in NT conditions. Absolutely sue if you can afford it ; you never know but absolutely don't wrack up huge legal bills pursuing this as it will be very hard to win.

Oh .. and a dx DOESN’T mean an automatic EHCP - and to be honest, school should have applied for this anyway for your ds given his difficulties in school, you don’t need a dx to get one. School have let you down way more than the NHS.

I understand. Frankly it might be worth speaking to a solicitor about the possible outcome.

If I could sue our local authority for the hell they put us through and money they cost us fighting us at the first tier tribunal whilst refusing our son the education and care he obviously needed (the tribunal upheld our case) I would. But those cases are expensive and hard to win so I left it.

I totally get your anger and hurt I really do.

Firstly, limitation does not start running in the case of children until they are 18. So they have until they are 21 to bring a claim. If they lack capacity limitation can't be argued as defence. So my first point would be to step back and take a breath, if you do wish to litigate you have some time.

It's an important point, but if your son has capacity at 18 the decision is out of your hands he is the one who has to make the decision to litigate (if litigation had been commenced he would then have to take over bringing the claim).

I can understand why are you angry. Posters saying, what difference would it make? I am sure would take a very different view if the disorder was a physical disorder which they felt had been missed.

It sounds like you have been fobbed off for years. While in a perfect world support should be based on needs not diagnosis, the reality is services are so stretched that diagnosis are often the key to getting support.

The fact that your son was not diagnosed at 11 does not mean the professionals doing that assessment were negligent. ASD does not have a test/scan to diagnose, it's a professional opinion. Many children who have "milder" ASD may not be picked up until they are older because of masking. You would have to prove that the assessment was performed negligently. The fact your son was diagnosed later does not meant the initial one was performed incorrectly. You would have to prove in that assessment no reasonable body of medical opinion would have reached the conclusion they did. That will be a difficult task. It's not like a blood test was read incorrectly saying there was no problem and you can see from the levels it was.

You then would have to prove your son has suffered injury, loss and damage as a result of any breach of duty, which again will be difficult.

If you wish to explore the issue then you can contact solicitors, but prepare yourself even if someone is willing to take your case litigation is long and stressful and your son is coming to an age where it will be his decision (lack of capacity is not something the courts find lightly. The fact his MH is poor does not mean he necessarily lacks capacity).

I wonder if you might be better writing to the Trust involved and raising your concerns and asking for a response pursuant to their duty of candour? You can put your concerns to them and see how they respond.

The school has a responsibility but you're on a hiding to nothing with the NHS.

No. Diagnosis of mental health conditions are subjective, there's no brain scan or blood test to confirm diagnosis. 5 doctors would give you 5 opinions so you've nothing to gain from suing.

Could you seriously take money from the NHS knowing the state it is in, with years of backlogs for treatments and surgeries for urgent cases, Year plus long waiting lists for referrals, and people waiting hours, if not days to get in to A+E, admittance etc? Theyre so overworked, underfunded and backed up people are dying in droves, and you want to make that even worse taking money out of the pot?!
Why didn't you change schools, look into private options etc?

God people are harsh. I say YANBU OP. It may be hard to win the claim, but you have a case, and surely holding services to account is how we prove outcomes for other disabled people?! Also it would be some small compensation and justice for your son. That’s important too. Having said that of course you need legal advice on whether this case is pursuable/ winnable.

It sounds like the issue is more with the schools than the NHS but even then did you not look to move schools?

diagnosis shouldn’t be needed for schools to provide support

What do you want from suing @HufflePuffllePuff ? To prevent others having the same experience? How would it make a difference to your dc?

What exactly do you think was negligent about your son’s previous assessment?
I’m none the wiser.

Just having a reassessment years later with a different outcome isn’t enough to show negligence in the earlier assessment.

Exactly correct sirzy - school is definitely more to blame here, dx is NOT needed for extra support or EHCP.