medical insurance wont cover diagnosis for developmental delay..............

[smugtandemfeeder]

Argh, help. I know this is rather specific but I really dont know where to go now.

I had a referal from my GP for autism tests for DS who is 2.6. I have medical insurance and they initially covered the consultation, any tests such as brain scans, and a meeting to discuss the diagosis.

The psych we saw privately talked to us for an hour and a half and said he wanted to see us again to discuss family medical history. The bleedin medical insurance now say they will only cover the first consultation. They apparently dont cover developmental delays. They cover us for tests to rule out an underlying medical problem other than developmental delays. What a load of crap.

What can I do now. I have contacted Bibic but they seem to have a very long waiting list. My HV has today referred me on the NHS but from what I read on here, that is a long slow process and nearly impossible for a 2 year old.

Perhaps I dont need a diagnosis, I just need help. I am not coping.

Phych said very litte after the first app, just said, when I pushed him, possible ADHD, possibly mild aspergers. The report he wrote doesnt include any of his potential diagnosis, just a list of the things I say he does and a comment that DS was mostly normal during the consultation.

I have no idea where to get the strength from to be a good enough mum. DS keeps saying "no more shouting mummy" and "I feel sad" I need to be a better mum but I dont know how.

[smugtandemfeeder]

help!

[USoRight]

Sorry not to be of more help with the medical insurance, diagnosis etc. but I'd just like to say you seem to be moving heaven and earth to help DS. In my book that makes you a VERY good mum!

[Oblomov]

I have BUPA from work. They said they won't cover for behavioural. assuming they meant ADHD ( even though many people KNOW that ADHD is not behavioural, but thats a different issue.

My pyschologist said that you have to be very very careful how you word it to them.
I can't remmebr what word she told me to use. I think it was neurological. Based on her thinking that ds1 had possible Aspergers.

So far they have paid for eveything. 1 Paed appointment and 6 sessions with child pyschologist.

Is that any help ?

[smugtandemfeeder]

Thank you. I just want someone official to tell me I'm not mad. We have occasional good days and try to rationalize but its not ok and I just wish I knew what to do. Keep pinning hopes on things and then hopes get dashed.

[smugtandemfeeder]

Oblmov, yes that's exactly what I needed to know. Tried asking psychs secretary to find out the solution from psych but neither of them have actually spoken so far so I feel very alone. I expect I will need a new go referral?

[Oblomov]

AND, Op you sound so down. Poor you. I really feel for you. And have felt EXACTLY as you do, not so long ago. Mn has saved me. the support i have received has been literally a lifesaver.
Post another thread and let us help you. We are here for you. Big hugs.

[smugtandemfeeder]

mumsnet has already saved me and is the only place which has given me useful information and one of the few places I have felt support.

I do feel very down. I know I can cope or sort myself out if I have hope and can see a future which is better. Told my hv I feel depressed and she said to make sure I leave the room for a minute if I feel really bad. I know she meant well but it was such a basic comment.

[tabulahrasa]

can I just say that I don't think the length of time for diagnosis on the NHS is anything to do with access to doctors or the healthcare system in that way

my son was assessed very regularly and saw someone quite quickly every time he was referred

but - it's not something you can do a blood test for and understandably they're reluctant to label children until they are positive that it is the right diagnosis

which is quite hard to do with a young child

[madwomanintheattic]

is there a reason you need a private dx? we've only ever seen nhs and dd2 has had all the help she needs in a timely fashion? (i may be being a bit dim - you may not be covered by the nhs if you are not ordinarily resident etc, sorry, don't know your circs...)

a dx of developmental delay is not a barrier to treatment on the nhs - dd2 saw ot, pt, slt, as well as neuro, and attended a five day assessment at a childhood development centre. i don't think going private or using med insurance could have improved her assessment or her access to therapies at all...

he's still v tiny - it's not unusual for docs to refuse a definitive dx when they are so tiny at all.

that said, i do appreciate your frustration with insurance -dh got blown up and suffered a brain injury/ had brain surgery etc. his insurance didn't pay up either, as apparently a skull fracture wasn't on the list. if he'd broken his ankly playing rugby they'd have paid out happily.

what are you hoping will be achieved by the developmental delay criteria being met by the insurance?

afai can see, they have now ruled out any brain damage etc, so you can just transfer to the nhs for ongoing monitoring until they make a dx? the important and urgent tests have been done and paid for to rule out obvious stuff? quite a lot of docs use 'developmental delay' for some time.

don't forget, depending on the issues your ds has, you may also be entitled to dla?

[TotalChaos]

if you have a look at a copy of the Parents' Guide to Speech and Language Problems by Debbie Feit,it's a US book, and so has a chapter regarding insurance coverage and terminology. I imagine the exclusions with UK and US insurance companies would not be dissimilar.

tabulah - it's very much a postcode lottery. what you describe was not my experience at all with NHS.

[Eloise73]

It really is a shame that private medical in the UK usually doesn't cover any developmental delays. Our coverage is quite comprehensive and covers everything for everyone in the family regardless if you've had it for a week or from birth but nothing for the autism.

Initially we did get some paed sessions paid for and had dd's hearing tested but none of this was done for 'developmental delay'. The paed we saw because of dd's rolling of the eyes upwards and her tummy troubles and the ear doctor because of her constant ear infections. We just made sure the paed we saw was an expert in autism/developmental delay so we used the appointment to get answers re her rolling her eyes upwards and then we also talked about our worries for her and possibly being autistic.

The paed was wonderful and asked to see her again which was covered by the insurance but once we knew the rolling of the eyes was nothing serious we couldn't go back privately sadly.

Having said this we got a diagnosis pretty fast on the NHS, can't complain about that. Getting SALT is another story...

Good luck xxx

[spur]

HI just read your post and wanted to say that my dd (3) has developmental delay - We have had similar nightmare with our medical insurance. They word the policies in a way that it excludes almost everything to do with child development!

I also made the stupid mistake of saying 'Developmental' in a conversation with Bupa on the phone..... this made things even worse.

Using the diagnostic route helps but its very hard to get therapy covered. YOu could get a note from the Psych to confirm that the appt. is for diagnostic purposes ( we are trying this route)

Also they do not cover any follow up appts. So avoid saying follow up! ( like I did )

For us the NHS has been brilliant - all drs are saying the same thing anyway. We have had a good NHS experience - we use private appts for speed and second opinion.

Things get better.

I understand how you are feeling - Our HV was involved in getting us seen more quickly on the NHS.
We had 8 months to wait for assessment but the Paed saw us early (following hv phonecall to more important clinical nurse) and then the wait was much shorter.

There is lots of help here - DD is not ADHD or ASD but lots of other posters will be able to help you with next steps.

You are a brilliant Mum! Its not easy dealing with Developmental delay let alone the drs/ insurance companies..... etc.

hugs

[Agnesdipesto]

Yes you just need help and support.
A diagnosis is not itself a golden ticket
There has been some recent legal changes in some States in USA so that autism therapies are now covered by medical insurance. Its been a grey area.
In UK autism treatment is considered education not medical for reasons i don't really understand.
This means most help is via the education system under your local council.
There are private options eg speech therapy, ABA, OT, physio which you could look into and see if your insurance would cover. You may need some legal advice about your policy as they are unlikely to cough up for ABA or similar voluntarily. If your insurance covers ABA / private speech therapy I would definitely take this up.
We got a dx at 2.5 on NHS. It took 4 months. I would go to the GP and get a referral to a paediatrician you might be surprised - we saw the paed within a month.
We started NHS speech therapy after 2 months. (but it was very infrequent)
You can self refer to your local NHS speech therapy dept - but many are not that clued up about autism.
You should also have a portage team or early years team accessible via your local Council. These are people who come and work with your child at home sort of like play therapy - and also give you support.
Once you have a diagnosis you often get moved onto a specific autism team but it depends from area to area. Many autism teams only work in schools and nurseries not home so getting a diagnosis can sometimes mean less help at home.
You might have Hanen or Earlybird courses in your area for parents with a young child with ASD dx.
You can look at nurseries you might have some special ASD units or nurseries near you, or specialist schools. Often they take children from 2.5. It is often hard to get into specialist provision if on milder end of spectrum.
If there is some local provision you want to access you might need a statement of special educational needs - look at IPSEA website - applying for a statement can also speed up the diagnosis process as the council need evidence to decide what your child's needs are and that means they have to arrange for professionals eg speech therapy, educational psych to see them.
Your council might also have some funding for early years eg they will pay for 1:1 support in a mainstream nursery.
You can self refer to Ed Psychs - they usually do have a long waiting list.
Look at NAS site for info
You can also apply for state benefits eg disability living allowance - see Cerebra Guide - you do not need a diagnosis - your private assessment may be enough.
You can also ask social services to assess your needs as a carer and your child's needs (see Contact a Family website for leaflets on entitlements).
If you start a new thread asking for info on your County you might get some replies from people in your area.
Local NAS groups or other ASD groups are also good sources of local info.
I would not necessarily believe your insurer - if you have access to any legal advice I would get it checked out.
Finally Hanen books are often recommended on here or Tony Attwood on Aspergers.
Also check out your local childrens centres many do speech therapy or portage drop in sessions. We got referred straight through to speech therapy by going to one of these.

[smugtandemfeeder]

Thanks everyone, what amazing advice you have all given. I'm overwhelmed by your amazingness. Thanks for all the really detailed answers, so nice to have all this advice in one place. I'm exhausted from reading past threads on here!

I've tried all angles with the insurance today. Went back to GP to ask for a new referral for something neurological. She wouldnt refer for that but has referred for severe anxiety. Medical Ins are playing silly beggers and want a copy of the referral letter so they can try to get out of covering it

DH also has a refferal for anxiety and depression which they also want to try and wriggle out of for some reason. Not sure how they are going to get out of that one but as he had an autism referral turned down they are obviously watching us.

I will try and claim DLA as we have been awake 24 hours a day for 2 and a half years but I wanted to get a more detailed letter from psych, I know I dont need a diagnosis but so far I havent got anyone to agree with me that his behaviour is anything other than normal. Mainly because he is so young and can switch it off around others.

HV has just referred us on NHS but I need to do something in the meantime. Thanks for the suggestions on how to speed things up a bit.

I went to a sure start group and they were amazing, they said I could attend the ASD group they run which has smaller groups.

Gosh i'm so tired. So so tired.

[auntevil]

Smug - i had a right old do with BUPA and PPP re the magic words of developmental delay.
When my DS3 was 1 - he could not swallow so could not be weaned - he had to stay on stage 1 puree. He had met all other developmental stages. Because his eldest brother had a dx of dyspraxia - the paediatrician that the GP referred to used the magic words and all funding ceased. I spent 9 months getting it changed and then he saw another specialist who used the developmental word again and funding ceased again.
Upshot is i have a 3.4 yr old who still cannot eat because the NHS is slack! They are only now starting to take an interest because he has stopped growing and possibly in another 6 months might meet their criteria for failure to thrive ( born on the 99th centile - stayed there 'til 18 months or so and now below 50th).
Health in this country is a lottery. You have to fight all systems within it, whether private or national.
Credit where credit is due - emergency care is from our point of view good on NHS and medical care on private is also good. Everything in-between ......

[madwomanintheattic]

auntevil - if you have a 3.4 yo who can't eat, what investigations have you had so far? dd2 couldn't feed as a baby and we had support from a brilliant slt who was a feeding specialist. (it sounds as though your ds3 had similar problems - dd2 was tube fed originally as she had no suck/ gag) she quite literally saved my life, never mind dd2!

[auntevil]

DS3 has seen a SALT, a dietician and a gastroenterologist. They all agree it is physical - but can't rule out now if it is habitual. CAMHS doesn't want to know because they all believe it is physical. I'm trying to get an ENT referral, but my GP can't refer directly as he has a paediatrician that is 'dealing' with it. The paediatrician had handed the case to the gastoenterologist, who apart from identifying IBS and dairy intolerance, can't see what else he can do apart from mention that he has phenomenally large tonsils. Original paediatrician has an appointment in 6 months to see me about doing a referral to ENT. I have tried to speed this timeline up - but she refuses to speak on the phone, or bring forward his appointment. GP will not go over her head. He starts full time school in September, and at this rate he will not be eating! Cue SENco meeting at Pre-school as that will probably happen next!

[goingroundthebend4]

Have they looked at doing a fluscophy ds is waiting for one as he struggles with swallowing and chewing foods and often gags so there going to check out his swallow

[auntevil]

They did a fluoroscopy - and tried to do a ph study, but he pulled the tube out for the latter. I think the gastroenterologist thinks that the problem might be too high up for his department, which is why he thinks ENT. It's just the wait in between appointments, which there doesn't seem to be any way of circumventing.
I only got the gastroenterologist's appointment because i threatened to go to the press and someone at PALS sent it to the chief executive as he had been knocked back from seeing a specialist 4 times!

[JoMamanHasJoinedFightClub]

Sorry, I've come to this thread very late, just wanted to add my experience with insurance. I thought I had been good and got our appointment with neurologist and associated blood tests covered. Nobody told me that one genetic blood test would cost 1200 quid and that most policies have annual caps for outpatient services that are less than that :(

[smugtandemfeeder]

Good point jomaman, I have just checked my cover and there are no annual limits as long as I use an approved specialist. Thank goodness.

Having a right old fight with them now. I have been transferred to the complaints team as they have also turned down my new referral letter for my DS for severe anxiety (it was worth a try...) not sure how they can justify it but they are being a pain. The complaints team have been nicer so far as you would expect. They admitted I have been misled by them at the start of my claim for cover and they recorded all my calls so hopefully they will cover me for the diagnosis if I wait a few weeks for them to review it. I doubt they will cover any treatment but I can wait for the NHS for that I guess.

I wish I had known not to mention autism when making the claims for help. They are really fighting the claims for my DH and my DS now, even when we have had them both referred for anxiety and depression. How bloody unfair! How can they leave a depressed grown man or child without any help just because we think he may have aspergers or adhd or something. We dont KNOW what they have so how can they turn it down just because we have been referred for it.

I just want to get out of this limbo position where I feel there is something wrong but I dont know what and I have days where we doubt ourselves and days where I cant cope.

[herhonesty]

which insurer is it? just threaten to go to the press and see what they say.

[smugtandemfeeder]

It's Axa ppp. They have now agreed to fund the second consultation with the psych and will consider further appointments after they get a report from the next appointment. They have also made it clear that they will not cover any treatment for developmental delay if diagnosed.

I'm not sure whether one more consultation will enable me to get the answers I need but at least I can go back for now.