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?

Very similar situation here.

Ds referred to Paeds at 4. First ASD assessment at 9 after a very long waiting list. Told no he hasn't got Autism. Reassessment at 12 told yes he definitely has Autism.

In the intervening years much parent blaming and many, many parenting courses.

Child was labelled naughty, bad, unteach able etc etc

Had police called at least once.
I have now withdrawn him from education to protect his mental health.

His life, my life, my career and marriage are all irreparably damaged.

All that said I don't think suing the NHS would help. I would be tempted to sue the school but quite honestly I'm exhausted fighting for rights for a disabled child who was after all disabled from birth and is "entitled to an education". Not only is he entitled to an education but it's my job as a parent to ensure he gets one.

OP you have my sympathy for what it's worth.

You would have to be clear what you hope to gain from it. He now has the correct diagnosis so sueing them wont change that or imprpve access to support going forward. Finacial compensation would be pretty unlikely and when you take into account to massive cost involved in sueing the NHS I would think not worth your while.

No, and I hope the case gets thrown out if you do (the NHS needs its money to pay for nurses, cancer patients etc).

An Autism assessment is based on evidence gathered by a number of people from several different departments of the DofE, NHS and the local authority. Which part of the NHS would you sue? Or would it be DofE?
If the evidence gathered when your son was 11 did not meet the critrea for diagnosis at the time there was nothing the diagnosing paediatrician could have done differently.

Are they all nhs though ? I've got a feeling they are local authority aswell as NHS

No, it's more complex for an asd diagnosis many off children have to go through the assessment a 2nd time as first time parent was told not asd, did to get a 2nd referral straight away? You will not win this battle put your energy into getting the support your child needs.

I don't know about the legalities or whether you'd have a case but I'd support you on principle.

No, I wouldn't. And I say that as a woman who was only diagnosed with Autism at 51.

It's a complex process and very frustrating, as are a lot of clinical diagnoses.

Oh also evidence is gathered from the parents/guardian of the child too.

Yes, with 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 that you mention they will need the money to live off once they turn 18.

No.
ASD is not an illness that has a specific diagnostic test.
It's a condition that is on a spectrum and those at the edge of the spectrum will present with ambiguous traits that may or may not be classed as autism. Without a specific test the diagnosis is at the discretion of the practitioner making the assessment, and whereas one assessor might consider him to be autistic another might not. In addition, autistic traits can present themselves differently at different times throughout life- becoming more or less apparent at different ages.

@Sugargliderwombat
NICE guidelines suggest a paediatrician, a speech and language therapist, a psychologist, a social worker and an occupational therapist. So, some NHS and some local authority.

Ehcp isn’t based on diagnosis it’s based on needs.

if you where so sure it was wrong why didn’t you ask for a second opinion at the time?

Team is Paediatrician, SALT, OT and clinical psychologist for ASD ADOS assessment. All NHS.

They take evidence from school but LA would not be involved in diagnosis.

I was told when I tried to put a complaint in after 2nd assessment that Paediatrician had left her post just at about that time funnily enough.

OP I am so sorry for the way you and your son have been let down, by the paediatricians and health visitors and by the school. I can understand your anger and frustration. Sometimes you just want to scream about the unfairness and impossibility of everything. I can totally understand the desire to have some kind of redress. I don’t know if that is possible to be honest, in the system we have. It might be worth talking to the paediatrician who diagnosed and see what he suggests- he will presumably have a view about his colleagues’ decisions? I do think, as hard as it is, that it’s worth putting the energy into the fight for the next piece of support- it will no doubt take far more fight than is reasonable. Lots and lots of sympathy to you.

Nope. How can you prove that if he had a diagnosis he would have a job etc etc. A diagnosis isn't a cure, there is no fix.

You are naturally upset and maybe angry but a court case will solve nothing and cost a bit to boot.

Took me years to get a diagnosis for my now 11 year old, he was under paeds anyway.

however since diagnosis not much has changed really so could be the same story for him at 17, he hates school is very socially isolated finds so many things difficult. I don’t know that the diagnosis would change any of that, I would not sue as you can’t change what happened you can only move forward with the information you have now. There is very little in the way of support or even understanding in schools for children like my son. I am dreading him going to high school.

it’s really sad tbh and I’m sorry your son is going through what he is, I hope you get more support and help.

I can absolutely understand your anger having been through a missed ASD diagnosis for DS too BUT getting a diagnosis, an EHCP and a specialist school placement isn't the magic answer that you seem to be idealising it as. DS has both a diagnosis and EHCP(since age 8) and a specialised placement since 11 (now 14)and he still has mental health difficulties and may well leave school with no qualifications. There is no magic answer.

I get that you are angry. I am still really cross that we had horrendous years before diagnosis, that the school were very slow to ask for help when they were struggling (which I think is where a good lot of DS's MH difficulties stem from) and that the NHS didn't diagnose him because he got invited to whole class parties and smiled.

However, I am not sure suing is the answer. I would focus that energy on being kind to yourself and getting support for your son (EHCPs go up to 25, so it might not be too late, I don't know).

What negligence? There is none....he didn't meet the criteria at 11 ..... end of🤷‍♀️

And besides, the education and mental health system should be supporting children with difficulties irregardless of a label. There's nothing to say a label of ASD would have meant a different outcome for him

No, you should have been told at the time of the diagnosis that it was entirely possible that it may not get picked up.

Schools don't tend to make the first referral, you do to your GP with the evidence you have and then they contact the school - in my area at least.

The NHS was not your only option, you could have saved up over the years and gone for a private diagnosis. You can self refer to them and it's a 12 week waiting from initial contact to diagnosis where I live.
I gave the school a heads up it was happening and asked for certain adjustments to be made while we waited and that was it.

Full assessment was done at age 11 but was told they 'didn't meet criteria' and why did I want a label anyway . At 17, doc said he was very surprised at previous conclusion.
How do you know the first diagnosis was wrong and the second right, rather than the other way round?

I completely understand your frustration and upset OP and I think you’re getting a bit of a hard time here with the lack of compassion from some posters.

It must be difficult not to blame, not to think of all the what ifs, what could have been, not to imagine if things had been different. I really get that.

Gently, I don’t think suing is the right thing to do. I don’t think you’d win and that might cause even more heartbreak and frustration for you.

I think your energy and focus would be better placed in continuing to support your son and perhaps getting yourself some support if you haven’t got it already? Make sure you look after yourself.

It’s really shit OP and I wish you and your son the best.

I work in NHS Mental Health Services, including children and adults (managerial but not clinical). Also diagnosed with ASD at the age of 33 after years of knowing that something wasn't quite right - and a misdiagnosis of a personality disorder for several years which I complained about but just to get my voice heard

The criteria for ASD is constantly evolving over time - if I'd been assessed years ago I would have been sent away, especially after becoming an expert at 'masking' and appearing 'normal'. Also the funding for these services just isn't adequate - blame the government here. Please also remember that all claims for medical negligence will be settled by the specific Trust, therefore using up more taxpayer's money

Also I know everyone is different but in many cases - myself included - that 'label' hasn't changed things one single bit (there's no post-diagnostic support in most places anyway) and it's not always a barrier to leading a full and fulfilling life

No

Maybe he didn’t reach the criteria at 11?
Maybe he did but masked his way through the assessment.

The outcomes with an earlier diagnosis may have been different, they may not have been. It’s impossible to ever know. A diagnosis isn’t needed for an EHCP, or for a special school. A diagnosis also doesn’t automatically mean you’ll get an EHCP or special school. GPs can apply for EHCP assessment, as can parents.