Neurologist: no evidence that earlier intervention is more productive

[oodlesofdoodles]

I'm making a complaint against our NHS health board (trust) for failing to monitor my vulnerable child's development. They now want to dx him as ASD. I've just had a first letter on the matter from DS's neurologist. Here's a quote:

"Although there is good evidence that psycho-educational intervention is better for children's outcome than no intervention, there is no concrete evidence that intensity of intervention or earlier onset of intervention is more productive. However it's fair to say that there is no evidence either way...."

Hang on, is that right? Is there no concerete evidence that earlier intervention is more productive? Not just in ASD, but other aspects of child development.

(Background: DS was very ill as a baby, spent several months in intensive care, missed out on months of normal interaction and development.)

Yes there's plenty of evidence that it helps. But you may as well play their game and provide evidence they will find hard to refute. So although there is stronger evidence out there - this should fit the bill as it was intervention provided very much in a LA friendly style:

www.researchautism.net/publicfiles/research_report_001.pdf

thank you saintly. that paper says:

*With the exception of a small change in early social communication skills, EIBI led to few reductions in the diagnostic symptoms of autism or in problem behaviours, despite the fact that it appeared to improve parentally reported social behaviours.
? Questions remain regarding whether the effects of EIBI will be maintained in the longer term.

i think what they mean is, there is no way of telling whether in a specific child's case, early intervention (of a psycho-ed nature) was developmentally productive, or whether the child would have developed that way over time in any case? the neuro is pseaking specifically from a psycho-ed pov, which i assume is the area you feel he has been let down in?

having spent the last 5 years or so pursuing a medical negligence claim on dd2's behalf, it's the absolute proof bit that you need to have a case (whatever the burden of doubt bolleaux suggests).

which is pretty much impossible to produce, however many reports you dig up suggesting that x would/ might have been helpful for your child.

you need to think about what you want to get out of your complaint - if it's an apology, or further intervention at this point, then i would suggest providing them with the applicable research etc etc, and pushing for the intervention.

if you are seeking compensation, i'm not sure that the energy required will be worth the eventual result. only you can decide if it's worth pursuing.

there's plenty of stuff on brain plasticity wrt mobility etc i think (more along physical disability lines than as/asd) but i'm only familiar with the 'it can be suggested but not proved' line of response.

i suspect that if he was v ill as a baby and spent time in scbu etc, his problems will be blamed on the original cause for the issues, rather than any failing on the pct's part subsequently. sorry, but that's how it usually goes.

how much energy do you have? these things take years and years with no guarantee of resolution.

in all honesty I wouldnt bother. This sort of fight requires massives of time, engry and stress and your going to need all that to fight for provision for your ds. How old is he? What functioning level is he?
A huge amount of people havehad late dx, because people fail to listen :( advance dx age is 6-8years for high functioning children and those with langauage.
BOth my girls were physcially delayed too

Oodles, make a complaint by all means, but you need a full amoury for the battle ahead so please don't use up much on the battles behind you.

I'm not saying this is right, but it IS the way to survive and get the best overall outcome.

it's really sad, isn't it?

very depressing that you have to prioritise this way for the best possible future outcome for your child. the past can't be changed, but the future can, so fight for that.

Battling behind helps people behind so I'm not saying never do it, but you need to prioritise forwards.

yy, our claim is still ongoing. just find the conflict of interest between the greater good and personal needs a bit depressing.

Oh I know oodles but it also says gains were made in iq etc and maintained for 2 years.

My view is that if you need him to provide something - then complain.

If you don't need anything from him then save your energy.

Just another NHS tosser

In fact I have a report on DS from a Consultant Pyschologist stating explicitly that DS has been damaged by being denied earlier intervention.

If you don't want to complain why not try the concerned parent approach? Say you were very interested in his comments and would like to be better informed so that you an make sure you achieve the best possible outcomes for your child.

Then say you have heard people say precisely the opposite to his comments so you are confused and would be really grateful if he could provide the most up to date/relevant references to information you can look at.

It's all true - I mean it's why you are asking these questions isn't it? I have learnt that complaining just makes people shut down and start lying. Try a different approach.

Can't you get an independent neurologist to back you up? Might be expensive though.

Thank you everyone who has taken the time to reply. I do accept that our chances of raising, let alone winning a med neg claim are zilch.
I also accept that ds may have been predisposed to asd anyway. But his early deprivation must have moved him further along the 'spectrum' than he would have otherwise have been.
But if I don't complain at all these smug over paid hospital consultants will have gotten away with just discharging him without any consideration of his ongoing development.

It's very worrying that swuch things are being said, contrary to evidence.
This is an important paper.

I have to say, having seen a very clear-cut case of medical negligence fail in the courts, I can see where you are fighting a hard battle. I can't go into details much (though it is friend, not client) but basically this person had a horrifically unattended birth, there was plenty of evidence that she had been received inappropriate and negligent treatment at critical times, serious signs of trouble had been missed by multiple members of staff, there was a litany of serious errors etc.. the courts essentially recognised all this and said that the care had been extremely negligent and inadequate but they couldn't say definitively that this child wouldn't have ended up with CP/epilepsy/SLD if the birth had been better.

So I think that what the neurologist is saying about concrete evidence is that there isn't yet sufficient evidence for a court considering medical negligence which must deal in absolutes. This is probably true despite a growing body of encouraging literature that really indicates the value of early intervention. My understanding is that for medical negligence, like madwomanintheattic has said, it has to be the case that the outcome can be absolutely and without a shred of doubt directly related to intervention/lack thereof, that every child facing your child's difficulty would fare better with the intervention you are suing in relation to e.g. without exception. I can see why a neurologist would say to you that this evidence probably doesn't exist right now...

Or you could not play the research game but just point out early intervention has been government policy for many years and refer to this 2003 guidance and ask them why they have failed to comply with govt guidance issued 8 years ago

I read an article recently about how in the US they are doing research to identify signs of ASD in babies and they believe in future they will be able to design interventions eg to work on joint attention in at risk babies which may address some aspects of autism before deficits even fully develop. The Early Denver Model is working with babies from 6 months

Then you have to read this nonsense - like he would say that if it were his child

A couple of different but related research papers
Randomized, Controlled Trial of an Intervention for Toddlers With Autism: The Early Start Denver Model
Introduction to Special Section on Evidence-Based Practices for Persons With Intellectual and Developmental Disabilities and if you click on "Volume 115, Issue 5 (September 2010)" or "Next Article" there are some more useful related research papers to view

guidance for disabled children birth - three isn't much use if they haven't been recognised as disabled though (i assume this is the point of the complaint?)

it's so catch - 22. our situation is not unlike 9while5's friend. the NICE guidlines say FHR monitoring essential for vbac. monitoring in our case utterly inadequate. without the monitoring, there is no 'proof' that something was wrong and a cs should have been performed. and equally, there is no proof that a cs would have changed outcome.

proof that guidance wasn't followed is just proof that guidance wasn't followed. it has nothing at all to do with causation, or proving that following the guidance would have had an effect on outcome.

proof that guidance wasn't followed just gets a shrug and an apology from a consultant, if you're lucky. and if you're not, you are treated to a free debrief on a more serious birth injury where the spinal cord was severed during a forceps delivery. so think yourself lucky, it could have been a lot worse. no, i don't know why he found it necessary to share in that manner either.

these things take years, and erode your faith in the system further. just when the ptsd has started to fade, you get yet another independent expert report to read through and comment on, which rips the wounds right open again, and makes you relive it for the next couple of weeks whilst you formulate a response. then it all starts to heal again and bam, a year later you get another one.

fwiw, we are only pursuing it for answers as to why dd2 ended up with a birth injury - because she will ask what happened one day. she has already asked a lot of questions about cp etc, but it's only a matter of time before she wants to know specifics about how her own brain damage occurred. and no-one will tell you without a legal challenge, because if they did, they have to admit that somewhere along the line they weren't quite as professional as they should have been. so they weasel around for years to try and avoid a straight answer.

soul destroying, really. with no guarantee of getting a straight answer at all.

we won't get compensation. the best we can hope for is a 'probable' explanation of causation, but worded in such a way as to avoid certainty. so that's what we are going for.

an as/asd development case isn't something that can be proved one way or another - just lots of conflicting suggestions and a lack of evidence as to what would have/ could have/ might have happened in your specific case, so i think the neuro was quite right to try and warn you of exactly what you are taking on...

good luck. i hope you find what you need x

Thank you all for your comments. This has been swilling about in my head for some 12 months now and it really helps to 'talk' to others about it.

Its clear to me that his early sensory deprivation must have impeded development. I could probably pay an expert a couple of grand to back me up and then they would get another expert to contradict mine, so I would never win that argument legally.

I wouldn't expect anyone to predict that he would develop asd traits, but I do think that people calling themselves paeditricians should have done a risk assessment. DS had MRIs done at the time which all came back normal. Therefore the assmption was that he would have no problems. At the time I was quite happy to swallow that. Later as I started to be concerned people would say that I was pathologising (sp?) him, addicted to doctors, give him time etc.

My fear is that had he been discharged from GOSH, and not little provincial hospital, he would have been properly monitored and my niggling fears would have been picked up and quantified earlier.

I guess the neurologist (who probably took advice from a lawyer) is saying that my DS wouldn't have benefitted from monitoring because intervention at the age of two is no more benficial than at age five.

If you're talking about the intervention ds has received from NHS (six slt sessions) and education (six teachh sessions) so far, then yes there's very little discernble benefit. The stuff that would have made a difference when he was two like ABA or Son Rise aren't recognised by the NHS.

So I maybe my complaint needs to be about whether another hospital would have followed up his general development with ot/physio/slt assessments. But NHS hospitals are all in cahoots I guess?

if his mri was clear, and there were no specific 'symptoms' then i think you'll be hard pressed to find any hospital that would have continued to monitor? how often did he see comm paed? (i think gosh would just have referred to local comm paed for ongoing work anyway tbh - dd2 has cp and was referred to comm paed and away from the hosp consultant as soon as poss - about a year i think?)

paed appts for kids are usually every 6mos for tinies and then 12 mos as soon as it becomes clear there aren't any specific medical issues.

re risk assessments - i dunno. i'm more of the opinion that doctors only have the time and resource to see children when they need intervention for sure. the resources are so limited even for the kids that definitely need immediate intervention, that overloading them further with kids who don't necessarily need it but might benefit from it because they might develop traits in the future doesn't seem particularly sensible or necessary. in an ideal world it might be desirable (but then you do run the risk of 'pathologising' nt children etc) but it wouldn't work for the underfunded and beleaguered nhs... it's an interesting idea, to map out a risk assessment for as/asd as (perhaps)part of the hv assessment programme at 2 yrs (although hasn't this been canned?) or at entry to school (they do checks here on entry to kindergarten for example, for all children, to see if they need any ot, pt, slt, or whatever support for school). it def doesn't happen in the uk though.

i don't think it's that nhs hopsitals are all in cahoots - it's just that they all have minimal resources and funding, and so won't be taking children onto their casebook who don't need intervention... i'm thinking that there might be some exceptions to this, but can't come up with any at the mo. it does seem like they are all in cahoots, but really they are trying to eke out their resource to as many people that need it. the ones that might need it don't get a look in.

but i don't really know if this is what you mean as i don't know your dc's background.

i don't really know enough about as/asd to be able to offer any opinion on whether dx at 5 was appropriate in your case, either... ds1 is nearly 10 and still hasn't been officially assessed, let alone dx. it might be interesting to discuss your own dx with families who have two or three children with the dx - i think that in those cases it is sometimes appropriate to look at early intervention and dx, but not sure in families where no history exists?

i'm just concerned that spending so much time on the 'what ifs' might not be helping you in the long run i guess... for example, we returned to the uk when i was 28 weeks pg so that dd2 could be born in the uk. (my two other dcs were born in different countries, so dd2 is my only nhs baby. we had the choice whether to fly back early and deliver, or stay in the country that ds1 was born in. with three tinies, i decided to go back to the uk so that i had family support post birth.)

so i now have the niggle in my head - if i had stayed where i was, i wouldn't have had an overworked nhs midwife and a student doing my care (it was supposed to be the student's first live birth), i would have had an obstetrician and a team of nurses (midwives don't deliver here). does that mean that dd2 might not have suffered a birth injury at all? or does it mean that she would have died? completely different system of care.

the nhs saved her life, certainly. but only at the point when she had already sustained brain damage leading to physical disability. would constant monitoring and an obstetrician mean that i would had a cs early and she wouldn't have been brain damaged? or does it mean that they would have missed everything and she wouldn't have survived at all? sometimes the 'whatifs' aren't answerable and it's best to try and keep them at bay. (that way lies madness etc)

only you know whether it's worth your while to pursue the complaint. sometimes you feel you have to, even though you know it's completely hopeless. but you have to be prepared to accept that all the energy you expend might lead absolutely nowhere but more frustration... or it might lead to a new early warning system that can be used for diagnostics in high risk children... but it might not. it isn't going to change the outcome for your ds, though, that's certain, so make sure your personal priorities can accept the workload.

Unfortunately, DS was with GOSH and he didn't get developmental monitoring either, so think it's quite standard :(

yy, sadly, i think that's what the hv programme is for. efficacy of that system is a whole 'nother ball game.

Agree on both counts Madwoman.

Mad I'm sorry about your daughter's case and that it has taken you all this time to still not get answers. I do know what you mean about reliving the stress and how unproductive that can be for everyday life.

DS did have what I consider to be symptoms, eg he came out of hospital dependent on a feeding tube. As there was no physiological reason why he couldn't eat orally I felt this was a big problem developmentally. But because local NHS didn't have the expertise to deal with NG tube dependency I was told 'He's breathing isn't he? What more do you want?'

DD had an MRI that suggested she might possibly have brain damage (she doesn't) after traumatic/emergency cs birth and was given fairly detailed follow up assessment.

It seems a bit random the criteria for why some children get follow up assessments and others don't. The MRI is obviously a pretty inaccurate measurement. DS wasn't discharged to comm paed, just to a GP.

WetAugust do you mind me asking what your DC was assessed for/delayed with? Did the consultant psycholgist report lead to anything?

Sorry for slow reply. Thanks for the links dolfrog, agnes, moondog, which I'm working my way through.