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 sue.
If he was struggling at school, school should have assessed his needs and supported as needed. Having or not having a diagnosis of ASD doesn’t change what his needs are.
Also even a decade ago the threshold for ASD diagnosis was higher than these days as there is no specific medical tests for ASD & it is essentially a multi disciplinary team who look at various developmental/ behavioural markers & gives their expert opinion- they gave their opinion based on his presentation then, likely things have evolved since & his Autsitic traits/ behaviourisms etc are more visible.
How old is he now?- does he have an EHCP- they can be in place till add 25- Can he continue his education & work on skills ? Is there any specialist colleges/ careers skills support for those with SEN locally?

I dont have any views on the merits of your case but have you ACTUALLY found a solicitor to take this on for no win no fee.

my son had a misdiagnosed brain tumour and for 3 years was called psychotic and on meds when it was a brain tumour growing. Anyway could not get a firm to touch it.

its very expensive and complex and they only want dead cert cases.

No I’m sorry and this is from a parent who has a ASD child

You are better off concentrating your energy on your child

Yes this. Diagnosis does not equal support, behaviours can do, but mostly need to push for it. (I have 2 autistic children- one diagnosed at 11 and one at 14.)

A diagnosis is based on 3 areas. An interview with the person, an interview with parent and information from school. In order to get a diagnosis the difficulties and behaviours have to be in more than one environment eg home and school as if only in one area one would look for something else to be causing the difficulties.
sometimes the parent’s developmental history is not very good at picking up the difficulties, sometimes the information from school might say there is no problem there.
Often the difficulties only become obvious in secondary school as primary schools are often good at adapting to individual children and primary school children are much more accepting.

No

You haven’t said if Dc is DD or DS.
My DD was assessed and refused a diagnosis with the same ‘didn’t meet the criteria’. We had some other issues which were linked and causing physical problems. Eventually the GP referred us back to cahms (well, our equivalent) for ‘intervention’ to try and help the supposed mental health condition which was cause of re occurring physical symptoms. Psychiatric nurse who picked up our case immediately asked about ASD so I explained we had been refused diagnosis. She looked through file and said it was really clear. She decided to focus her work on collecting the right evidence to support the diagnosis. We eventually did get one - 6 years from original referral. It only confirmed what we knew already. It hasn’t really opened any doors as she doesn’t have a learning disability. School staff are more aware and reasonable adjustments have been put in place. But I do know lots of people don’t want the label.

Would I sue?? No, not the nhs. I was very tempted to sue the primary school who made her life hell by not recognising all the traits, for accusing me of munchausen’s by proxy and who accused her of attention seeking. But didn’t because I knew it wouldn’t help.

Negligence obviously was rife and no wonder you feel let down - rubbish assistance or rather lack of it - I really feel for Parents and children affected like this - it is disgraceful and I believe common place.
if we all sued there wouldn’t be enough money in the Nhs to cover all the claims - terrible situation - I’m so sorry I can’t give any advice, but seek knowledge and guidance online, your MP and local Parents living with the same issues and worries will have forums and discussions to sign post you and your DC for help that you can seek now…

Should also add that it’s not a diagnosis that gets you into an sen school but an EHCP. A diagnosis doesn’t even guarantee an EHCP. My DD is diagnosed but isn’t eligible for an EHCP as all their reasonable adjustments mean she can cope. She does a lot of masking though. And not embarked upon GCSEs yet but academically she should be able to achieve decent results but I’m not sure just now if she can actually cope with the process of them - especially revising for exams. I work in an sen school. Our autism unit is actually full of children who don’t actually have an autism diagnosis. They qualified for an EHCP due to their needs outstripping what could be provided by universal provision. Then even with the EHCP they couldn’t manage in a mainstream support and needed a more therapeutic multi disciplinary offer which a specialist school can usually give. Many have got a diagnosis since starting the school as the staff know what to look out for to collect evidence.

SEN school places are in short supply though. It’s a massive issue due to government underspending on send. Assessment and diagnostic services vary so much throughout the countryZ. It’s all a shambles.

You are extremely unlikely to win; your damage (lack of qualifications, social anxiety, reduced employment prospects) is too difficult to link to the cause (lack of diagnosis). What are you hoping to achieve from it? If it is a change in practice, then time would be better spent in appropriate action groups. If it is financial compensation for potential lack of earnings, then they would be unquantifiable and I think completely un achievable. There are too many stories like yours and there are clearly massive failings, but I don't think you have a good chance of success, OP. Best wishes to you and your son.

No

In relation to posters suggesting we cannot sue the NHS due to their inadequate funding, does that give licence for inadequate care? Publicly funded bodies are still subject to the law and the users of such services should still be able to assert their rights, and should a claim have no substance, then it will not get very far at all.

Good luck with that lol.

Agreed!

No.

Yes, speak to a lawyer. Get some advice. Until schools are held accountable for correcting assessing neurodiversity which is chronically underfunded. Perhaps this will prompt them to take assessments more seriously. The incorrect assessment can be life changing.

Couldn't agree more.

What do you think you'll get from suing? Cash?
Money-grabbing in my opinion.

Maybe you're suggesting that I should have sued my school for negligence coz I broke my ankle on a week-long school trip and was made to walk around on it for a further 4 days, then my teacher told my mum to take me to the hospital when when we all got home, by which time I'd developed a further 4 fractures around my ankle.

Almost 40yrs on I'm still struggling with weakness in it but I also know that suing the school wouldn't have changed anything for me. Also, schools (and the NHS) are all strapped for cash, so taking money off them is taking it away from others who need the education or healthcare services that money would have provided.

Your son has a dx now, so you need to start teaching him some of those life skills you say he doesn't have. I have an AC who's on the spectrum, he was late getting a dx and left school with no qualifications but he has learned life skills coz we taught him, and he has held down a fairly decent job for almost 10yrs now. His employers know of his difficulties and tailored his training accordingly.

So don't write your child off when, with some help (especially from you) he can become a productive member of society.

To all those pooh poohing the idea - it's roll your eyes time - how do you think products and services improve?

How do you think it came about that there are no more ads featuring the health benefits of cigarettes? No more asbestos used in buildings?

Lawsuits, that's how.

Same goes for medicine.
If you think 'lessons will be learned' is a true statement of how the NHS trusts deal with negligence that is highlighted by years and years of expensive inquiries, fill your boots.

I have friends who have gotten a double-handful of diagnoses for mental health issues over the years. A definitive diagnosis is perilously difficult with mental health problems, especially personality disorders of all types. All tests are subjective, and can change over time, as it is rare for a person to test exactly the same way every time. Understanding of issues changes over time, as well.

It would be lovely if there were definitive tests for mental health issues as there are for most physical issues. Heart? Electrocardiogram. Lungs? X-rays, pulmonary function studies. Most diseases? Blood tests, etc. Mental health? Ask a bunch of questions and hope for the best. While working in an acute-care mental health hospitals, I've seen psychiatrists almost come to blows over differing diagnoses.

Oh ffs you want to sue the NHS for negligence when you’ve known since your kid was young? You’re the negligent one as you did nothing about it and now want to blame someone else. You could’ve gone private instead of waiting two years for the NHS and then when you thought it was wrong they didn’t diagnose, you just left it again. You should be ashamed of yourself!

Suing will not be helpful.

Try to focus on getting your son the support & services he will need.

Pinkfluff76, what a nasty, disproportionately angry comment.

OP. I understand how hard this journey is. Gaslighting is the norm in my experience when it comes to this situation. Medical professionals, schools, ex husband's for many also defer blame to the mother. Incompetence and lack of true understanding is also rife across all these sectors.
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I in the end took a loan to get a private assessment. I could see early doors that the incompetence within the NHS ASD assessment system would be a huge problem. The private diagnosis was the best choice I made. I had my request for an NHS assessment declined. The school failed to provide adequate info to support it, even though they saw things. The same with my ex sadly. There's alot to feel angry and resentful about but the truth is that you will just inflame your anger. You won't win against them I'm sure of that.

Perhaps write a letter of complaint. Make it factual and highlight the consequences of their failings. You could ask what steps are being taken if any to stop this happening to other families. That may help you feel some sense of control over their incompetence.

I feel lucky that we got the diagnosis early as the trauma this gaslighting and completely moronic incompetence across medical professionals, education and so on is astounding. Try focus all energy on support for your son. You aren't alone in this experience, there are so many groups online with people going through hell trying to be listened to, to get the assessment and then have it acknowledged. Some women are being dragged through courts and accused of mental illness because an ex will say the child doesn't act Autistic around them so the mum's making it all up. ( Masking). It's awful, it's wrong but it's the way it is for very many people out there right now. The Tory Government have alot to answer for when it comes to the social support available to parents in this position. The more diagnosed the more resources needed. No one wants to deal with that and that's the truth .

You've now got the diagnosis. Look ahead not back. Hugs to you x

Waste of your money and time. Doctors are protected by insurance etc. Look after your child.

Lots of good stuff said about the merits and non merits of suing but.... Most importantly I think, what effect will this have on your child? How will your child feel about this, especially as they have social anxiety etc? What are your motives – cash grab for your child's sake, or seeking redress/vengeance, or changing the system for other children (the last one seems unlikely as you don't mention it) – and how will they be seen by your child?

What will the general and specific (eg if you have to set out a v detailed case of how hopeless your child is now – they will be entitled to look at it under data privacy law) effect on your child be?

Is your child now 20? Honestly, things may look hopeless but there is still plenty of time to at least try and rebuild their life. I was diagnosed with ADHD at uni in my early 20s and though it took almost a decade to build a life I'm proud of and that I enjoy, I still was only nearing 30 then. Even 40 or 50 would not be too old, many have been diagnosed at that age! I wonder about if I had been "written off" in a lawsuit at 20, what kind of impact that would have had on me for the rest of my life.