Amount of NHS help

[Paribus]

My DD (3,5) has dyspraxia/ speech delay (was initially dx with dyspraxia, which is now being reclassified as speech delay with elements of dyspraxia). We've been paying for the private SALT for her since October but thought it was worthwhile to try and get smth from the NHS. Applied in October, first assessment in January, first session- end of May. Were promised block of sx sessions, had just 3, now SALT tells me we have to break for the summer as she doesn't have any time available and it will be just 4 sessions for us now, then group sessions in September.
I mean, WTF???????? 7 months wait for 4 (four!!!!!!) sessions?????????? Is it all NHS can do for us? What r we paying taxes for?
Does anyone else feel they were massively let down by the whole system? Sorry, just really need to vent!

Yep, normal, they are useless. Also tried them and now I'm back via the private route, altough it's crippling us financially.

Yes. I think it is a common feeling. You can write to the head of department or even the chief executive at the hospital if you feel strongly - it might not change anything but it will be looked into.

Also, you could get your GP or HV to chase this for you too.

Same here, you were luckier than me in that your dd was offered some sessions. My PCT does not support asd children. I exchanged 26 emails with the head of service, got my GP to make another referral to no avail. I then applied to Cerebra who refused to help me as I'm too well off, even though I'm unable to work because of disabled dc. I would normally suggest Cerebra, but I believe they only offer grants to children who have not had any direct therapy.

Sorry, the system is crap (apologies for swearing).

Don't get my DH started on this - It is a bone of contention with us. General rule of thumb is he earns the money, I spend the money, but he really puts his foot down with the NHS. He pays a lot of tax and NI, and touch wood, has never had to take out of the pot. He doesn't moan about that, but when we ask for therapy to happen that has been requested by the NHS, and it doesn't happen due to lack of funding, or takes a year to arrive, he goes into one.
He refuses to pay for independent when we are waiting for the NHS. I understand where he's coming from, but ultimately this is DS we are talking about. He thinks I should push harder, chase up more - but ultimately, when you get the same answer week in week out, what more can you do?

Babiki, yes, we also go down private route, but surely state must provide something???
Appropriatelyemplyed, SALT said that we should def complain, as "if no one complains, then nothing is going to change".
Iceflower, what is PCT?
Auntevil, does your DS have dyspraxia as well?

i feel slightly lucky now, with ds he was seen at 23months, then seen for 4 home visits (1 was an interim visit) when he was around 2.6, then he was seen for 6 group sessions just before 3 and 1 clinic session... they discharged him saying his pronunciation could be worked on at 5, they had never heard him speak!!! they passed me onto a manager who happened to be the original SALT we saw at 2, she had it reinstated and he is being seen on a regular basis and she gives me the work to do with him, he cant cope with clinic so she comes to our home briefly goes through the work ect... he as really progressed this way and i'm thankful shes done this for my ds.

im not sure but in my area but they dont seem to be seeing children under 5 for many sessions? its wrong really because my ds as really come a long way even with me just having the work to do something with him, this time last year he had 7 words, he as just started trying to hold a conversation.

there is good NHS SALT its just dropping on the right one

Saladsandwich, but that's still 7 months since the first assessment until the actual help- and help came in the shape of 4 sessions!!
What's four sessions?? A child must be offered continuous therapy, not 4 sessions here and 6 sessions in six months time. Six months is an eternity in this age!

Sorry, vent over ;).

1. Get a private slt to visit nursery, & train you & keyworker to do the actual daily sessions. Tell dh 'this is educational slt, Nhs will do the medical slt, dd is going to need both types'

1. Apply for statement, grounds are that she has an educational need for lots of slt, not making progress without it, appeal if they say no.

1. Get on waiting list for developmental paediatrician: dyspraxia and speech delay are known, you don't want any others being overlooked.

And physio wait list and occ therapy wait list while you're at it.

Mariamariam, r u advising saladsanwich I guess? Because my DD was seen by 3 neurologists who confirmed dx, we r having private speech therapy, she doesn't need ot/physio, etc :).

paribus, I know, there are actually better areas and worse one, I live in the bad one..have been waiting for sensory assesment, OT and physio for many months now..our salt is totally useless. I have friends living in developing countries and they have better services than we in supposedly wealthy country :(

Babiki, definitely!

we had similar problems on the nhs but DD has now been receiving forthnightly SALT session on the nhs with a great and pretty specialised Salt.

DD has asd and severly delayed speech and language and you would have thought that due to DD's severe problems it should have been easy to get salt on the nhs. it was not, we battled for it for about 1.5 years. eventually, a complaint (to PALS) sorted it out in now time. I wish I had complained sooner.

The ley is to get s/lt included on a statement. Provision needs to be qwuantified and specified.
S/lt is an educational need and refuse to heed the advice or attempts of any statementing officer to include it under the 'non educational needs' section. Read this section on the IPSEA website will help.

Remember that good s/lt input is not necessarily a specific amount of time with an s/lt in a clinical situation. Even with one or two sessions a week like this, it is not enough time to generalise asnd practice skills.

There are two things to remember:

Someone else can and should be trained to carry out therapy
The therapy needs to be designed in a way that demonstrates meeasurable progress (or not as case may be). Just providing s/lt is not enough.

I am an s/lt.

NHS speech therapy was a complete waste of time, they write a report saying they were unable to assess dd. but I wasn't aware that she even tried. We sat in a room for almost 40 mins while therapist asked me questions about dd. she hardly even spoke to her,
So how she can say dd wouldn't co operate is a joke.

So payed privately for 6 weekly 1 hour sessions and the difference in her speech after just 2 weeks was amazing.
It just goes to show that you get your money's worth.

Moondog, did not quite understand your post tbh.
What do you mean by "even with one or two sessions a week like this, it's not enough time to practice"- like what? How many sessions are enough? "Someone else can and should train to carry out therapy"- do you mean parents? I am doing daily exercises with DD, but I am not formally trained- do u know where you can get training? I know about Hanen courses- anything else? I was thinking of getting a formal education to become a professional SLT- how hard is it/what place would you recommend?
TA!

Lac13- exactly! I can't believe the system is so pathetic tbh.

Pari, it depends entirely on the presenting difficulties.
Communication is so complex and intervention depends on what the issue is.

For example, if you have a child who has difficulty with social interaction (eg approaching people, using eye contact, and using their names to gain attention) it would be foolish to assume this can be addressed in a clinic.
What is needed is for the s/lt to model appropriate ways to elicit this behaviour and thne help the paretns and school staff to give the child sufficient practice each day, recording how the practice sessions go.

In my work, with a great deal of children in many different schools, supported by many different people my priority is training staff and parents to carry out my recommendations and crucially, developing a way to measure progress so that when I see them again, we can review what is and isn't working.

I'd dearly love to do some hands on work with individuals but with my caseload it isn't going to happen beyond initial assessment in all but the most pressing cases.

Have a look on the RCSLT website if you you are interested in a career in the field.

Paribus, I did mean ot/ physio check ups for your dd. cos dyspraxia can be a PITA later in other areas of learning as well as speech, and physio and ot tend to deal with it's other manifestations. As a pre-schooler you can ask for her to see who you want if they find she needs (for example) some fine motor skills development, they can give nursery a programme to start.

Once your dd goes to school, in many areas the NHS therapists only get called in if the teacher has concerns. Which is an unreliable way to get assessed. We ended up needing a private assessment for ds1, and it's not cheap.

I was a bit muddled with the dh though... It's mr auntevil who needs the 'there are two types of slt provision, honestly' talk!

Moondog, thanx. Will look into that!
Mariamariam, thanx, but DD doesn't have any motor problems, it's just verbal. But I understand where you're coming from ;).

I am an SLT. Can I clarify that you are actually c