Missed off SLT waiting list, found out 7 months later

[icecream24]

Found out this afternoon my son is not on the SLT waiting list, after waiting 7 months.

His HV supposedly refered him back in February, I contacted her 3 months ago to confirm that he was on the waiting list, she said she'd phone them and get back to me, I then phoned her again, as I had heard nothing and she said 'yes he's definatley on the list', I asked her had she specifically asked about my son, 'yes, yes I have, she said'

I then asked her again a few months later, when she was doing my younger daughters 12 month check-up, she supposedly checked with them again.

But she clearly bare-faced lied to me, as I have tonight phoned them myself and they have no record of him at all.

I will be phoning her in the morning, is he really going to have to wait another 7 months due to her screw-up. (the waiting list is 7 months, hence why I phoned them now).

The woman I spoke to on the phone at SLT said he would have to be refered again and would just go on the waiting list the same as everybody else as it was nothing to do with them that HV hadn't sent the letter, so he will have waited a total of 14 months.

I will never trust a health professional again, next time I will be on the phone myself, I still can't believe the woman lied because she couldn't be bothered to make a 2 minute phone call.

Sorry just ranting, am absolutely kicking myself for believing her, and yes I know it's my fault for not phoning myself, but she was insistent she had checked his name was on there.

I really feel for you- it is so frustrating. I was expecting an appointment letter regarding next block of SALT at end of Aug, phoned to find out where it was as sessions were due to start early Sept and "sorry madam but your daughter has been discharged from this service". Pardon me? non verbal child discharged?? "i'll look into it"- computer glitch! had i left it 2 days longer to call I'd have missed out on appointments for 12 weeks.

still on 13 month waiting list to see OT after 14 month wait already and request from LEA for statement input.

I hope you now know that you can self refer. Basically complain to the Head of SLT service in your area. Tell them you realise its not their fault but can they try and understand your position and the needs of your child and can they see him as soon as possible.

thanks I will phone head of SLT tommorrow.

I actually found out on Monday that his referal to paeds for something else has also been lost somewhere, so that referal has been re-done and he is now waiting again, not such a long waiting list there though thankfully.

negligent, like you say it's just so frustrating isn't it, from what I read on here I'm going to have to get used to it, OT waiting list is shocking and the whole statement process just looks scary.

I think we'll have to look into some private SLT in the meantime, I had been holding on for the NHS but if it's going to be another 7 months we might have to find the money, I will see what head of SLT says in the morning.

starlight thanks, I'll try surestart centres as well then, I think there's a few of them across the city.

Very good description of SLT from what I've heard!

really 7 months for a SLT, thats terrible

Know how you feel.Saw paed in April and was told would need Ados test and sensory assessment. Finally had Ados test after 20 weeks - asked when sensory tests were and have been told there's a 16 week waiting list! I asked why sensory tests and Ados could not have been booked at same time but no, that's too simple. Can't have sensory tests until after Ados but can't book them until then either.FFS

I would tell the health visitor she has to inform them of her mistake and confirm your wait time so that they SLT have a good reason to bump your son up the list.

Meanwhile I can highly recommend finding a private SALT. My DD has been on SALT books with the NHS since before she was 2. She is now at school, just started year 1. She has had no therapy from the NHS for 14 months now, despite me making a total pain of myself to the managers and anyone else remotely connected with the "service" strange word to use really when there is none! Prior to that she would get intermittant blocks of therapy and long waits in between. If we hadn't done the private work that we have done I dread to think how much further behind she would still be.

I don't normally defend my profession because I'm not always a big fan of it but it is not exactly fair to assume that all SALT services are alike.

In our service, there is an 8 week waiting list and some aspects of it are outstanding e.g. children with dyspraxia in our service get year round sessions in clinic with a highly specialist therapist at least fortnightly and more if space allows.

Referral is also the gateway to entry to the language units and specialist provisions for communication within the borough and accounts for a signficant proportion of Paed referrals, meaning that other difficulties are picked up as a result of referral to SALT.

So as much as I totally appreciate that many people have had very poor experiences with NHS SALT services, provision varies hugely from area to area and I wouldn't delay a referral based on what you hear from someone who lives somewhere different.

It's shocking that it's a postcode lottery, but it is... and as such, I think it's important to investigate local services before throwing the baby out with the bathwater.

Though we had to wait a bit (6 months), our NHS SALT was a star.

Overworked definitely.

We supplemented it with private SALT who also been instrumental in getting my ds talking AND negotiating on our behalf with other departments (LEA, school, CDCs) Worth his weight in gold!!!

We waited 3 months since the GP referral for the first SLT group sessions (back then I didnt know I can refer myself).

DS has been having a regular 1-2-1 blocks of 5-6 sessions with 8 weeks break in between session giving him the time to practise and digest what was done in clinic. Mind you last one we finished was end of May and he has a review next week (think some departments close or take it easy over the holidays!).

Where I was the wait for a non verbal child was longer
Think 12 months first therapist saw twice in 6 months was no good no help etc

Then she left and new one yet again was 3 monthly visits as she was just snowed under she would liked to have seen ds more but did give me stuff to work on and did good report for lea

but then we switched to school team and well downhill all the way but luckily another mn told about ican and had 2 days there and there report was fantastic used when we moved to get ds into speech unit

but personally I never trust gp/hv/paed except to do referals I tend to check after about 6 weeks that department have it

Do you have anything written down? My HV writes in the red book. She also fed back to the GP who also made a note of the HV's recommendations. You may have proof of referral somewhere that could help. Maybe under the circumstances they could fit you in for a one off appt to get you started.

We got bumped to top of list for assessment by HV calling the head of developmental services directly for a home visit!

We were really lucky as HV is great and got personally involved.

Its worth trying everyone you can think of.

Also in the meantime we ended up having as much private therapy as we could afford - all waiting list were long. It was useful to point us in the right direction for practicing at home. So we were ahead of the game when appts came through.

MN is a great resource for finding info quickly just by reading other threads.

We have a great NHS salt now but the first one was inexperienced and useless.

All our referrals have been lost in the NHS admin Void - in some cases I have copied reports etc and sent them myself. Its so time consuming and frustrating.....I find that the only way to be sure is to call constantly and make sure they know you will keep calling...til its all in writing.

Just off now to chase eye referral for the 5th time that did not get sent in Jan........GRRRRR

Good Luck

round, I'll defintely do that in future, I'll check with the relevant department rather than HV after 6 weeks (making a mental note), luckily as I say I did check about his paeds referal and that's now going through again, should be about 6/8 weeks.

arses, wow that sounds like a good service, 8 WEEK waiting list for SLT! Shame they can't even it out over the country, but then it's the same all over the NHS isn't it.

I'll just keep trying to help him. I keep telling myself that they quite often see you for the first appointment and then tell you to come back in 6 months anyway, so that would have been about the same, and like starlight said I've heard the stories of being told in patronising tone, read to them, sing songs, get down on the floor and play.

I think what makes it worse is his little friend (same age), refered a couple of weeks later than him and speaking much more than him is starting on 1-2-1 therapy soon, she had her first appointment in the holidays.

Anyway it's done now, so I'll get on the phone and see what I can sort out.

Icecream,

What happens in many services is that your first appointment is with a Band 5 therapist, so usually a generalist who is not very long qualified.

It does my head in, slightly, that the gatekeepers of the service are the most inexperienced of their department: many of the therapists on our team have long argued that initial appointments should be carried out by much, much more experienced therapists, but the issue (like everything, I guess) is apparently one of cost: higher banded therapists cost more, and the bulk of appointments are initials, so sadly you get the cheapies.

There will always be good and bad ones, of course.. but most will suffer from a lack of experience. Much SLT training leaves a lot to be desired too: unlike other AHP's we are not let 'off on our own' before we qualify, we rarely have even been in a room with a client without full supervision, which means that new practitioners are ill-equipped to deal with the day-to-day in the way they should be.

All of this does mean, though, that when you do go to an appointment, if you are assertive and tell them that you've already covered all the bases, you should be moved on fairly fast to someone more experienced/flagged up as needing more than the basics.

To give an example, if, say, your ds was a late talker, you could say:
'Here's what I've been doing, I've been spending half an hour a day with him where I just follow his lead, comment on what he's doing, making sure that we take turns to talk and he's made very little progress. I make sure I use simple sentences, just a word or two at a time. We read together, sing songs and nursery rhymes, he has my full attention, and he's making very little progress. I make sure I keep things out of his reach so that he has to ask for them, I give him choices e.g. 'apple or pear?' to encourage him to talk, I play LOADS of games with him where I build in gaps for him to vocalise, like 'ready, steady GO' with bubbles. When he says something I don't understand, I respond as if I know but model what I think he's said. I am doing all of this pretty much 24-7 and I am very, very concerned because I've had a look at the research and really he should be making better progress than he is. What can you offer me more than what I've already done?"

You may face a very blustery response but when you leave, if the therapist is very young and inexperienced, she will be on the phone to try and seek out the best way forward which may include a transfer or a joint session with a more experienced therapist.

Of course, don't say you've done all of this if you haven't!

I don't trust my HV either. Apart from weighing babies and giving nappy cream advice at the baby clinic, she is absolutely useless!

She was called in by the nursery to go in to observe DS a few days before his 3rd b/day.
A few days later, she phoned me up to ask whether we were happy for her to refer him to a paed. Said yes of course.

Three months down the line, not heard a thing, so called her office, she never picks up, so left several messages re: the referal to paed. She never called me back.

After another month of waiting, i got fed up and went to see GP. He said he would contact HV and chase it up. Three weeks later i had an appointment letter so see paed on the doormat! ...referal made by GP!

Anyway, i would make a big fuss and complain about your HV. Like you said she lied and is clearly incompetent. Just not good enough is it!

brilliant arses, thanks for that, am making a note, interesting about first appointment being with least experienced SLT.

I am doing all of that, I have been reading all the information I can find about how to help him, I am glad that I seem to be doing the right things. I am concerned that this now needs to be stepped up a level to more specific excerises, I have been doing all this every day for a year now and as you say there isn't much progress so I will be stressing this.

I have spoken to SLT today and they have agreed to halve the waiting time, so it should be 3/4 months, better than nothing I suppose. I will try surestart centres tommorrow.

thanks again arses, it's nice to know I'm on the right path to helping him.

It seems that this is far too common, that referals get missed.

And yes I am considering writing a letter to the HVs manager, I think it's the lies that really have got to me.