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?

Just nhs MDT at panel where I am....although senis and nursery will have contributed to assessment process

I feel for you and your DS but proving a misdiagnosis will be very difficult and in no way helps your DS to progress now. Please use your energy and resourcefulness to continue to help him into adulthood now.

My DSiL wasn't diagnosed with being on the autistic spectrum until he was in his 30s. It hasn't prevented him from getting an education and he ended up with a PhD in maths. DD who is partially deaf and has ADHD only recently diagnosed (she is 41) also managed somehow to get an education and a degree.

Yanbu to want to. But you can't.

I've bad a decade of hell after a useless paediatrician told me to just parent my child better. School and CAMHS now think she does have ASD. I get so angry about how she's been let down but suing them wouldn't help.

No.

Sorry you have had a difficult time. Suing won't change anything.

It will take money away from the care of other children, if you could win a case, but from what you have said you have no realistic prospect of winning.

I have an autistic child, she was assessed twice before getting a diagnosis. Sometimes the presentation becomes clearer as they get older.

The difficulties your child is having would not have been prevented by having a diagnosis either. There is no follow up generally once children are diagnosed with autism. The diagnosis is not in itself very helpful. An EHCP can be gained with or without a diagnosis, and many autistic children are not able to gain one.

The claim would be in your child's name so you have until their 21st birthday to start any proceedings. However, this sort of claim would be very difficult to bring. You would have to have good evidence to show negligence in the original diagnosis, and it would have to be based on the evidence available at that time, not what became available later. It would also have to be based on the state of medical knowledge at that time.

Then you have to be able to show damage, which again is difficult given that there are no cures for autism. You would need to be able to show that, if you had had the diagnosis when your child was 11, support would have been put in place at that time which would have made a substantial difference to them. Unfortunately the state of provision for autism in this country over the last few years has been such that it may be very difficult for a professional to say that having a diagnosis would have made a real difference to what was done for your child. Furthermore, technically you don't need a diagnosis to access support - if your child met the legal criteria for an EHC Plan, or for extra support in school, then those things should have happened regardless of the label put on your child's difficulties. That might potentially bring in the local authority has defendants in any negligence claims, but education negligence claims historically haven't been very successful.

You may also struggle to find solicitors to deal with the claim, because the chances of success are quite low and, for them to do this on a no win no fee basis they need reasonably high chances of success otherwise they will be looking at a big financial loss. There isn't any legal aid for this sort of claim. You also need to bear in mind your child's potential liability for costs if he were to bring a claim and fail. I understand it's very difficult to get insurance against that liability, again because there isn't a great success record.

To be honest, it's an awful lot of stress and work for an uncertain reward. You may be better off concentrating your time on getting the right help now to give your child a better foundation for the future.

You don't need a diagnosis for an EHCP. Did you apply? It's needs based. A diagnosis of ASD doesn't automatically mean an EHCP and to get referred to the children's disability team needs need to be significant.

You said your dc was later diagnosed 'on the spot'. How? That's extremely poor practice and not in line with NICE guidelines.

I've heard it all now.

Money.

No. What do you hope to achieve by it? Use your energy into something more positive to support your DC and let the past go. I say that as the parent of a now mid twenties DC who has spent most of their adult life on MH wards. They have received an autism diagnosis during the last few years which was refused during childhood. It just might have been the thing that would have helped make a difference, we'll never know. You can spend your life thinking 'what if?' or you can move on.

No

Given the level of involvement of a broad range of clinicians in the initial assessment I would say it’s highly unlikely you’d be successful. What has been given is an opinion. Another dr has given you another opinion. The guidelines may have changed within the seven years as to how asd is diagnosed. You would need to instruct a solicitor to get an opinion from a suitably qualified expert to give their opinion. They could side with the second opinion being correct but that isn’t sufficient in itself. They would have to show there was some kind of significant failure to adhere to the guidelines at the time of your son’s initial assessment. The second dr having a different opinion does not mean that the dr in the first assessment was negligent. Btw your son has 3 years from the date he turned 18 to pursue his claim, not sure if you have factored that in. If you feel strongly take legal advice but unless you have insurance or at least £10k you can lose tbh it will be difficult for you to get this off the ground.

Of course the outcome would have been different!
He'd have got an EHCP for a start and been referred to children's disability teams, had a chance of a specialist school rather than the Head of his mainstream school constantly trying to manage him out due to low level behaviour issues directly related to his ASD.

Unfortunately having a diagnosis is no guarantee of getting an EHCP. Conversely, you can get an EHCP without any diagnosis at all.

How would getting a diagnosis earlier have changed things? Would it make him get out of bed?

Suing the NHS would cost you more that it costs them, it will take years, loads of stress and ultimately, would not benefit anyone.

Direct your energy at helping your son, not at blaming everyone else.

Who would you actually be suing anyway? You can't just sue the whole NHS.

I wouldn't trust any diagnosis that was done "on the spot" and by a single clinician. An MDT assessment over a period of time and in multiple settings is the benchmark for an ASD diagnosis.

For negligence to succeed you have to prove on the balance that an earlier diagnosis would have improved the outcome. It would be difficult to prove as his mental health and struggles may have continued despite support.

Its not actually impossible but its very difficult.

What is done is done op, I completely understand why you are so angry, but to take on the NHS for this you wouldn't get anywhere, you have very little recourse if any tbh.

What you can do though is make a parental application for an EHCP, these are applicable up to age 25, so you still have some time to help secure provisions for him.

No I don't think you should sue. Not because you (and he) didn't deserve better but because it wouldn't work and the energy you'd need to pursue it is needed for getting him support now. And I absolutely get how difficult that will be and how things might well have been different with a diagnosis at 11.

And for mental health support a diagnosis can be a hindrance to getting help. Dd's referrals to CAMHS have all been declined precisely because of her diagnosis. We had to go privately to get any help.

@Stomacharmeleon that sounds so unbelievably stressful and upsetting. I also agree with your advice.

Op - my children have a load of diagnoses and supposedly the highest level of support and they still struggle with many of the things you mention. I think it would be impossible to show direct cause and effect. I'd highly recommend private SALT and OT though if you can afford this.

Oh yeah, this too - this has happened to us.

My son has an ASD diagnosis. We were refused an EHCP and have no hope of a special school, even though he won't cope in mainstream.

Have you applied for an EHCP?

Sorry but that’s not an argument . The nhs has to have and pay for insurance claims like this . It does not come from those areas.

I think the main problem would be quantifying the financial loss . Trying to show that would be problematic.

Oh stop it.

Of course not.

ASD is complex to diagnose and requires input from multiple sources. Including parents. No one person is responsible for something not being diagnosed. The very fact that you’re complaining that school didn’t refer is indicative that you were part of the issue.

No. And I'm autistic.