I am so fucking with the NHS right now (diagnosis)

[WhataCant]

DS age 2 is suspected of having autism. First picked up by his health visitor and echoed by other health professionals.

I’m just feeling so fucking angry at the length of time it’s taking to go through the referrals process.

I waited 4 months to see a paediatrician (who again said he has red flags for autism) who will then refer us as parents on for a family history. He said to phone and chase in January if I hadn’t been given an appointment by then (so 3+ months) Apparently a decision will then be made as to whether to send him down the ‘autistic pathway’ which appears to be the route to diagnosis.

S&LT referral will take 6months apparently. HV doesn’t answer her phone or reply when I chase.

He’s going to school in a year and a half and I’m so worried he’ll end up there with no ECHP (apparently not put in place until diagnosis).

In the meantime I have a barely communicating zombie instead of my beautiful little boy because he’s so fucking tired all the time, who bites and lashes out because he doesn’t have the words. I’m spending a fortune I don’t have on private therapy and am being told by the SENCO (who thankfully didn’t put us on a zillion-week waiting list) that he needs S&LT NOW.

I know it’s due to budget cuts/staff shortages etc (the Paediatric Dr we saw was a locum) but I feel so frustrated with the whole process and want to give a 2 dinger salute to any fucker who voted Tory in the last 2 elections

That was meant to be fucking angry - I’ve been up with ds since 4 this morning!

It can take a very long time and it is incredibly frustrating! Waiting lists in our area are running at over 2 years for diagnosis.

You don't need a diagnosis for an EHCP, just proof that he MAY have SEN and MAY need the support of an EHCP. It's done entirely on need. Have the nursery got him on a support plan at the moment?

Do you get DLA? That can help towards the costs of therapy.

@WhataCant I am with you, I totally understand your frustration!

I have been through the same process and the key is ( in my case): to be pushy! really!

I agree with livpotter, you do not need their diagnosis to get EHCP. However, try to share all the papers from the specialists.

I applied for my DD's EHCP with the help of a volunteer service. I am not sure where do you live but I am guessing that you might have something similar. I also get lots of support from Sendias and IPSEA.

Meanwhile, take a look at this: www.ipsea.org.uk/asking-for-an-ehc-needs-assessment.

When I found out about EHCP, I contacted the council's Local Offer office directly. I filled up the form, add the additional documents and called them after three days to check if they received everything. Then I called again (Yeah, I got lots of free time :) a month after.
It took about 5-6 months to complete everything but again, you need to push them, really... this is how it works, unfortunately.

Good luck!

Thank you for your replies. I’m so glad I posted- I was tearing my hair out earlier. I’m relieved to hear you don’t need a diagnosis for an ECHP.

I can understand that it takes a long time for a diagnosis and so much can happen in terms of development when they’re still so small - it’s just the basics of getting an S&LT/Paediatricians appointment taking so long that’s exasperating.

I will have a look through all of those resources you’ve suggested and talk to Preschool. They’ve been massively supportive so far including buying in additional resources and staff off their own back to support ds. They currently have him on a play plan.

Does anyone know if I take him to the Drs are they likely to help with his sleep? He walks around in a daze unable to really focus on anything as he’s so tired, but really struggles to get to/stay asleep

@livpotter I haven’t applied for DLA - I’m surprised I would be eligible as he’s in preschool? I don’t really know anything about it

It depends on his needs. As long as you can prove his needs are more than that of other children his age then you might qualify for the care component of DLA. For the mobility component it's usually 5 unless they have very severe needs.
Have a look at the DLA guide on the cerebra website and that might give you a better idea about it. We got the care part for my son just before he turned 4. He now gets middle rate mobility too.

OP in our area melatonin needs to be prescribed by a paediatrician so you need to check with your GP. We haven’t found it much help but many do, especially if dc takes ages to go to sleep rather than waking early.

If, at the time, you feel he’s not ready for school you can apply to the LA to defer his start.

Thanks I’ll have a chat to DH about DLA - and I’ve downloaded the Cerebra guide. Didn’t think we’d be eligible for anything like that but it looks like we might

@openupmyeagereyes I was worried it would be something like that - it’s early wakings that’s are more of an issue - sometimes he wakes up at 12-1am and is up for hours

He’s like a different child on the rare occasion he has a good nights sleep - wish there was something I could do to help him

We get this periodically too, and sometimes for long periods. Only difference now is that he doesn’t go back to sleep after a few hours any more, he’s up for the day though the earliest has been 1:30 I think.

It’s no fun OP. I don’t know if they prescribe it at your ds’ age but it’s worth finding out.

We applied for dla when ds was 2.5 and had no diagnosis- he had only been referred to the paediatrician for suspected autism. We were given high rate care. So it’s definitely worth applying. He is now 7 and has a diagnosis of autism and learning disabilities and we renewed dla when he got this aged 4 (it was due for renewal around the same time, you don’t have to reapply when you get a diagnosis) and he was then given high rate care and low mobility until he’s 12.

As others have said you don’t need a diagnosis for an ehcp.

We did end up going privately (to Daphne Keen in London) as we wanted ds to go to an autism specific specialist school and they needed a diagnosis. The NHS wait was ridiculous.

And yes melatonin- ds has been on it since he was 2/3.

Sadly I’ve rarely heard of Autism/adhd pathways taking less than 18 months/ 2 years. Is there any way you could fund a private diagnosis? Also yes, applying for DLA is definitely a good idea, I’d be amazed if, from what is in your OP he wouldn’t be eligible for at least middle rate care. DLA could also help pay for a private diagnosis?

When you start looking at schools (try not to worry yet) but keep in mind a school with a good school SENCO can offer quite a bit of support even without an EHCP/ diagnosis. I’m not sure what senco you are seeing as he’s 2 - is that something through the NHS?

Echo what others say about claiming DLA. It pays for our DS to have fortnightly private SALT sessions and monthly OT appointment. Has saved us shelling out £2000 a year.

Of course, if we had a properly functioning healthcare system I wouldn't have to pay to go private - it smacks slightly robbing Peter to pay Paul but needs must....

Hi, we waited 4 months for the first appointment, 9 months for SLT to start (he was 3 by then) and now we are waiting for the educational psychologist which SLT are away to chase up as DS starts pre school nursery in January and ideally, a plan needs to be place for that as he is non verbal. He's only been doing SLT for a month though so hopefully by the time he goes to preschool, there will be words and more understanding. We have opted to take the slow diagnosis route to give him plenty of time to get his speech going (I hope) and his understanding up to par with his peers. We're being told he is borderline, has a few traits but in other areas he has none so it's very much does he doesn't he at the moment. Like you, it was the HV at his 2 year review that made the referral

Hi.
I am new to mumset but would like to say as a mother of 3autistic children and a grandchild who also is autistic.
If you want something from the council or health authority for your child who has special needs be a PEST! They hate it😊
Also knowledge is POWER...
Especially when you know the law on special education needs.
And when they realise that you aren't Green as a packet of frozen peas they will start to realise that they cannot pull the wool over your eyes.
I have had to fight for special schools as my two of my children are severely autistic and had to go away to residential schools sadly.
I have had to fight for dental treatment as well.
As a mother I realised that I had to toughen up to take on the system and people who don't want these children to succeed .
It feels like when you get the diagnosis or your trying to get it that you in your head grabs your child's hand and says we're going to get you future .
I am also dyslexic myself
If a child has a speech and language problem .which my youngest had the DR told me go and get him a musical instrument as it let him get out his frustration and not bite him self.
Sorry about the messy grammar.
It's a hard journey but there is light at the end of the tunnel because when they get the right education they blossom ...
Hope this helps.
Jacquix