Is it supposed to be this hard to get help/support/official diagnosis?

[L0ts]

Is anybody in the UK finding it downright impossible to get the help/support they need for their child?

He is now 3.5 years old, it started last June time I mentioned to the health visitor I had my concerns, I was brushed off with ‘boys are like this’. She said she would see him again in 3 months time to see if there were improvements, she didn’t. I rang earlier this year AGAIN with even more concerns, she once again completely brushed me off with ‘boys are like this’ but she would put in a referral to a paediatrician anyway, so I felt happy about that.

Referral came through in August, which I expected, I know it can take months.. He had a woman come around to ask some questions and to get a feel of what our concerns are so she could pass the information on to the paediatrician. It ended with her saying we should get an appointment come through before he started nursery and then they’d liaison with the nursery to see what his teachers also think. He’s now been there for 3 weeks and it’s been 2 months since this woman came around and we’ve heard nothing.

I don’t have a telephone number for this woman, or the paediatrician he will be seeing, I don’t even know what hospital or gp surgery, what building etc or wherever they are located, I’m feeling so god damn frustrated by it all. Don’t get me started on his speech therapist.. He had his first session in June and then we never heard from her again, she never booked in to see him again and never sent the recourses she was making for him to help with his speech. We rang about 3 weeks a go chasing it up and were giving countless excuses, she also has said she wants to liaison with his nursery but again, it’s been 3 weeks and she hasn’t called the nursery to book something in.

Is it supposed to be this hard? My son needs help, me and his father need help. I’m 24 weeks pregnant and extremely stressed, anxious and feeling so guilty over all of this I cry most days because I feel like I’m letting my son down!

"Supposed to be?" - No

"Is it?" or "Is it typically ? Yes.

In my area you wouldn't have got as far as an initial appt with SaLT in this time.

HVs, SaLTS (and virtually all services) are chronically understaffed.
Almost all the 'interim' services - the support work that used to be delivered via Children's Centres etc - has all been cut to the bone. All the support services to Nurseries cut to the bone. The staffing in Nurseries now pared back to absolute minimal levels, so the early intervention work that used to be so good is just not able to be provided like it used to.
Autism assessment for a pre-schooler in my area is a 2 year wait, after the initial appointment with a Paediatrician. Social Care not got the resources to do anything beyond Child Protection, and even those cases seem to be closed far too soon in so many cases. All of this then impacts on people like HVs and the time they can give families.

Yet Health Minister Therese Coffey's biggest concern is the Oxford Comma

The waits for assessments are extremely long, but 3 weeks after starting nursery is still very early. The nursery won’t be able to give other professionals a comprehensive picture of DS’s needs in that time. Keep chasing the SALT for the resources.

If you think DS needs more support have you considered applying for an EHCNA?

Whilst it is good to get a diagnosis, it won’t automatically result in additional support as support is needs based, rather than diagnosis led.

Thank you for the replies! I think what is upsetting me the most is that I first raised my concerns, legitimate concerns btw (spinning, tip toe walking, little to no speech, no eye contact, no pointing, no social interactions with other children) almost 16 months a go, if she had have made the referral then we could be way ahead by now. But in stead I just got told that ‘this is the way boys are unfortunately’ those were her exact words. When I knew even back then there was a strong chance he had autism, in fact I was absolutely convinced. But I went ahead and trusted her and started to believe maybe I was wrong.

But thank you, I don’t know what an EHCNA is as this still feels relatively new to me, I feel overwhelmed a little and it’s only since seeing how he is compared to other kids at nursery have I really been a little forceful with wanting help as it’s very clear without it, he’s going to struggle come starting reception next year.

Unfortunately, even with an earlier referral you may not be any further on. With young DC paediatricians often prefer watchful waiting to jumping straight in with assessments and diagnosis, and that’s if you even managed to get the referral accepted.

An EHCNA is the needs assessment prior to the LA deciding whether to issue an EHCP or not. An EHCP is a legal document that sets out a DC’s needs and the support they require. Have a look at IPSEA and SOSSEN’s websites.

Unfortunately this is happening far too often. I have been asking for help for my little girl since she was 18 months old. She is now 5 and is on a waiting list for speech and language (which is still approximately 2 years long) and the paediatric doctor is refusing to see her because she is too violent. School are constantly asking for help but he just keeps refusing. She didn't attend nursery because she was permanently excluded and other nurseries said they wouldn't be able to handle her. Maybe ask the nursery to get tge specialist teacher in for observation. It's something the paediatrics ask for and they give good recommendations on how best yo deal with situations ect... Good luck.

Elzo123 does DD have an EHCP? If not, you should apply. If she does, you need an early review as provision such as SALT can be included in there without the need to sit on the normal waiting lists.

No she doesn't have ab EHCP... we just had the psychologist assessment done last week. I should see the report next week before all evidence is sent off.

You don’t need to wait for any assessments to be completed and reports written before applying for an EHCNA. The assessments will form part of the EHCNA.

Whilst applying for an EHCP the school can apply for high needs top up funding if they require additional funding in order to provide more support.