Sleepwalking into a disaster with SEN

[IanCurtisdancing]

DD was referred for speech therapy by the HV in September 2022. She waited 8 months for the assessment in April 2023, and then finally, we began our course of NHS SALT therapy today. A waitlist time of 18 months,

What an absolute fucking shambles.

A teams meeting with seven other mums and two SALT co-ordinators. They didnt have strong enough internet connection, they couldnt share the screen for the PowerPoint, they couldn't get the videos to play, couldn't get the audio to work.

It was 60 minutes of 'Sorry, can you see that? Sorry, is it playing?'

Each of our children are at different points with their development so there was nothing in common they could really cover.

We now get 4 sessions with a speech therapist and then that's it. Good luck kids. Off you go.

18 months fucking wait for this.

We are fortunate, we can scramble together some money to pay for some more private therapy but its fucking expensive. What about all the other kids? This is all they get?

Are we now sleepwalking into another educational disaster where there is not enough funding for early intervention and we will see more and more children struggle in the mainstream, more and more absence, and then the knock on effect as they reach adulthood?

Why the fuck do we not invest in our children?

AIBU to think that we need a radical change to stop us sleepwalking into a disaster?

God that's shocking and I'm so sorry to hear it.

I think there is a postcode lottery at play here. I'm in NE England and DD (who is Autistic) was referred in Aug 2023, it was picked up in Sept 2023 and she was diagnosed with Situational Mutism. She's simce had four separate assessments (all at home at times to suit us) and her SALT has attended loads of meetings at school to put forward findings and recommendations. The SALT has also given whole school training. The service has been excellent, but my god I am thanking my lucky stars.as I know this isn't typical.

I know they are overrun with referrals which is another reason I'm so grateful. I'd have had to pay privately otherwise.

I'm having to pay privately for other things though, as I'm sick of just being signposted to Apps when she needs more specialist support.

Thats brilliant to hear!

Really interested to hear your SALT covered situational mutism - DD has that too which makes it a bit of a vicious circle with her development potential when she spends so much time not being able to practice any speech.......

It's been like this for years. Caseloads are sky rocketing, there aren't enough therapists to cover caseloads, recruitment is really difficult, and the criteria to be seen is getting tighter and tighter. Early years get shafted because the funding often comes from councils who prioritize school-age interventions. I've never known it as bad as it is now.

I would question why that was run as a remote session. It seems daft not to do it in person. Especially for speech and language issues.

TBF this was the intro session - the next four sessions are luckily in person.

What do you mean by 'sleepwalking'?

We are already in a massive SEN crisis, loads of children unable to access education or therapy and desperately fighting the local authorities, who are short on staff, short on funds and have very few specialist places to offer.
The whole thing is a clusterfuck.

Aware the situation is already absolutely fucking dire but if the Gov continues to not invest in early intervention, then we are headed for a huge increase in children unable to access education and then the workforce. The next 10/15 years will see the true result of the underfunding.

I couldn't agree more.

I'm a SALT and it's so so shit. The NHS service is honestly broken.

I cannot begin to imagine the pressure you are under! Thank you for sticking with it.

The poor woman looked absolutely mortified - she alluded to the fact it was really difficult to work around the NHS system with tech requirements.

Tbh it sounds like SALT is some thing you can read up on and omplement yourself at home as they seem to teach parents to do that anyway.

The diagnosos wait otoh is dire. We've waited over a year now.
I think that it will be implicated in several deaths a lots must be suicidal.

A lot of kids do grow out of speech issues.

But some have hearing issues and need grommets which obvioulsy isnt happening either.

This government has systematically chipped away at all the early years support and interventions that worked beautifully 10 years ago.

Children's centres are either gone or barely operating any more. Parenting support is now "targeted" but it's hard to target families whose issues arise post pregnancy as there are no groups or sessions to pick them up. Health visitor drop ins that used to be 3 times a week in my area of town are now once a month.

Children are delayed in so many areas of development because early support isn't there. And it's all left for schools to pick up. Despite their own funding and staffing issues.

This country is a disgrace.

Our childrens centre ran one group per week. And were unfortunately very judgements, if your child wouldnt sit for stories or drink out of a cup etc.
Most of the famoloes woth sen kods stopped attending
They also had out stones that kids could choke on and tins of beans etc to play with.

It's been like that for at least 10 years - we had the same 18-month wait back then and only four sessions available when we did eventually reach the top of the waiting list. If you have a few private sessions, sit in with the therapist and do the exercises at home with your DC, that will really help.

It's awful but sadly I'm not surprised. There is often a massive fight to get them on the waiting list in the first place. My ds had speech therapy but it stopped when he started primary school when he was transferred from the early years team. Speech therapist at primary school discharged him, saying his speech was fine. I pointed out that while I could understand him, virtually nobody else could. Speech therapist still thought he was fine. I asked for help with his speech all through primary school but was told he didn't qualify, his speech was fine etc. I asked the secondary school about speech therapy and he is now going to be assessed again.

Yep.

Grandson was referred at his 2 year check, which was January 2022.

He's four now.

No one understands him at school - not adults, not children.

He is isolated.

SALT service have rung his mum a few times to see if she still wants to be on the waiting list.

He was discussed during these phone calls. Recommendations were made over the phone.

He saw a dietitian last week who has prescribed some sort of calorific drinks as he has restricted his food intake - down to dry bread only now. She was shocked by how he communicated.

Lo and behold, mum got a phone call today from SALT and his appointment is on Monday - with the dietitian and a speech and language swallow specialist.

We are worried that he has a permanent speech impediment because he's been left so long with these issues.

We find that even if you describe how bad it is on the phone you are still bottom of the list.

Only when he was seen face to face was he taken seriously.

It's so bloody demoralising. I've been a therapist for over 20 years and in the first part of my career, early years made up the majority of my caseload. The service I work for hasn't had any early years service at all (except for a couple of specialist pathways) for about five years. I've moved to work in one of the specialist pathways over the course of my career but we've gone from eight therapists to three over the years, because people leave and we can't recruit.

From the context, I'd image she means stumbling, obliviously, into a disaster.

We waited years for speech therapy, then during his EHCP assessment he was discharged by SALT and removed from the waiting list because he could make all the speech sounds the therapist had on her list. Yes he could make the sounds but he was unable to use them correctly the majority of the time! He now attends a special school with an in house speech therapist who says he has an extremely complex speech disorder. But yet he was discharged without any NHS therapy.

We scrambled together to pay for a block of private therapy three years ago that helped somewhat. He’s now 7 and whilst he has made huge improvements he still has a long way to go.

This is so sad.

Your poor grandson.

I wonder if he might be allowed to re-do reception again next year. Give him a second chance at it once he's (hopefully) received some help and get him off to a better start at school, both educationally and building friendships.

Also, whilst you shouldn’t have to go private, if you do you’ll probably find it cheaper than expected. I was put off for so long by the £80 an hour sessions, but actually that amounted to 45 minutes every 2 or 3 weeks with significant resources for me to support in between. So a massive difference in reality when it comes to prices.

My son is 25. Nothing changes! I was very glad when he left education at 23. 19 years of one problem after another, battles, appeals, tribunals !

My eldest had six weeks of speech therapy in 2018 aged 3. There were 14 of us (six adults/six children and 2 babies) crammed into a small room. All had different needs.

We went private.

They were determined it was his hearing and made us get it testing three times at the hospital before we could even get speech therapy. His hearing came back fine every time.

I agree OP, it’s a dire situation.

My DD is almost 3.5, non-verbal, ASD traits. Issues with selective eating/food refusal and sleeping.

We waited 8 months for our first NHS SLT appointment and no direct 1:1 therapy was offered at all, just an assessment and report then a referral to ASD assessment waiting list. So we started private speech therapy.

Paediatrician referral rejected twice, referral to special dentist rejected twice. NHS occupational therapy isn’t even an option in our area as they don’t take referrals for children with sensory processing difficulties. So I’m going private for that too but the initial sensory assessment alone is nearly £1,000. As she isn’t underweight, GP can’t refer her for help with eating issues so I had a consultation with a private dietitian. Paediatrician won’t see her to to discuss melatonin etc for sleep unless she has an ASD diagnosis.

I’ve been raising concerns about her speech delay for two years and raising concerns about autism for one year and only recently was she added to the autism assessment list. Told the wait for that is 18-24 months.

So many children are just being completely and utterly failed.

Utterly disgraceful.

Maybe a letter with your appalling timeframe and outlining the irrelevance of your meeting to your child's should be sent to the LEA and your MP.

I left SEN provision four years ago and such a meeting would have not been tolerated.

Every SALT referred child will have individual needs .

This makes me so cross.