Poor quality services...

[FutureChicken]

Do find in your area so many things once you are referred and can access things are unacceptably woefully shite?

Today epilepsy clinic, new seizure type has occurred so the appointment had been moved to a date when the lead specialist was in. She was sick so I met a general paed who was lovely but so out of her depth she was looking embarrassed. The epilepsy nurse was prompting her with forms/ relevant things. I spoke to her more. And that's it until the next review...

Speech and language, referred by social comm to sensory feeding group/ a nursery support sessions and email resources promised. None of this is done and 8 months later a random invite arrives that is unsuitable at best. With incorrect info on dates/ which sessions have what it. They don't answer phone to clarify conflicting info on whether to bring dd or not to first session.

Just two examples, but it's a real pattern in my area. So far of 4 com paed appts NONE of the referrals contained in the report letters have happened. Letters take over 3 months to even arrive, they are so badly not proof read meaning is lost in places.

Hearing impairment services in 8 months didn't visit nursery... I could go on.


In the middle of this the specialist nurses are intelligent and experienced women probably getting flak and constantly chasing these referrals.

I told them today I will not be attending anything else because of it, it gets me down and has no benefit to dd. I was clear she has I mentioned needs. The locum doctor and nurse looked a tad embarrassed at the history

[FutureChicken]

Ok, no one?

TBH I'm feeling a little isolated. Dd is that high needs, but touches on so many issues (epilepsy, hfa, eating, language, hearing impaired, mild motor problems) that it's a nightmare accessing loads of things.

Popped in today to see a dietician. Dd entire diet is brioche, chicken dippers, fish fingers, plain pasta, peeled apples and cheese burgers. Apparently that, as long as I get her to take vitamins (which she doesn't) is enough as she is growing. Long term for a nearly 5 yr old I really want her diet to improve. It's not even referral worthy.

Generally it's all getting a little down.

I am wondering if simply not attending future appts will be better. It highlights issues, and brings them forward, but we get no support. Obv I'd attend epilepsy but social comm clinic etc seems useless. I did try slt again, 6 messages and they just ignore me.

Surely seeing paeds at least 6 monthly costs more than slt?

[FutureChicken]

Yes the paed ( when not sick) is like the oracle of all knowledge and gets it. But it's almost worse when you crack and admit to someone good you need support... then it doesn't happen.

[FutureChicken]

I have left in the last month 3 messsges with slt receptionist, 2 on answerphone, text her mobile and also left a message on it. I know she has received the messages as the nurse mentioned it! Who professionally is not embarrassed to do that?

[coffeemachine]

future, I find your experience mirrors largely ours as well. Very little usually way too late and so little it doesn't make any difference anyways. I am not sure why all these 'services' exist in the first place.

[Twinkletowedelephant]

Yep similar experience I have 3 DC ADHD/asd appointments made then cancelled referrals made then sent back to go. My son was DX with asd 2 years ago ...we haven't seen anyone other than salt which was requested repeatedly by school since nothing ... ADHD has closed cahms refered back to gp and no clinical need go not happy to prescribe but has done as there were no other options. Dd just DX asd. We NEED help... We are getting nothing. 3 DC with needs not being met...I try but it's only me and dh (me most of the time) and the 3 of them need so much more. At school it's 121 at home it's me Vs 3

[OneInEight]

All I can say for my two is that the hours of assessment has vastly exceeded the hours of help from any NHS service who tend to assess then promptly discharge. Social services is not much better. We have fared better under education at least for ds1 although it is a continuing battle to make sure they do what they say they are going to do.

[OhTheRoses]

Yes there is a significant issue re assessment, certainly in CAMHS. DD was assessed three times last year: Once at hospital, once at CAMHS, once by the counselling organisation, once over the phone. She said they used the same set of questions every time. The first time identified she needed counselling. The waste is extraordinary.

One thing I've learnt though is there's no point telephoning. A brief letter fter apts, confirming what has been promised and the agreed time frame fir delivery and copied to the CEO works wonders. Especially if you cc your MP who will then follow up for you.

[FutureChicken]

Thanks, I was starting to get paranoid they just hated us!!

Locally slt seem to see friends kids with poor sounds or late talkers... but not my non verbal child? The same slt was emailing a friend the other day about her 22 month old... mines nearly 5 and I'm waiting for a reply still...

The reports clearly state that we have what the referral is and who is responsible to do it, yet accountability isn't adhered to.

Oh yes to the wasted many hours of assessment. No one has ever thought anything but dd was autistic, no debate from anyone yet they just sit and talk about it. They don't even do proper assessments, they just note take it all Over and over. I asked about if they do Ados or something one day and was told '9h no it's straight forward and we all agree so let's just discuss a way forward' nooooooo.... let's actually DO something... [\rant]

[FutureChicken]

Our CAMHS though have a new one.... parent groups. No assessment for ASD, just a post diagnosis group. Argh. They just agree and nod about 'how stressful it must be' etc and ask you to discuss smearing with other parents of hfa teenagers who look horrified.

[2boysandadog9]

We had 2 blocks of SALT since dx, she was lovely but no experience of ASD or a clue how to help - I think I taught her more than she did me!!
We did finally get a music therapy assessment last week after 4 months which DS loved - he will get sessions starting in .......November. So basically a year from referral to 6 sessions

Finally had our appointment in January at GOSH for electrodiagnostic tests re: optic nerve issues after 6 months wait. Had the consultant 3 months later to discuss results and after an hour wait.... sorry we don't have the results yet they get transferred digitally and it's not working (although to be fair I did get a call the next day with the results)
The provision is woefully shit everywhere I think.

[youarenotkiddingme]

I find that too. I get referrals for DS they say oh "thats unusual" for so many differing parts of him - discover it's not the typical reason and then it's goodbye.

It feels like actually investigating properly is beyond what's available

[FutureChicken]

I don't have dd in school and yesterday had a call about meeting her needs at home. I nearly bit the poor lady's head off in retrospect when she innocently asked 'but aren't you worried she will miss out on support?'.

I managed to calmly explain she was non verbal until I took her out and just cracked on...

[youarenotkiddingme]

I don't think they know how to help. Help yourselves is the only option and so far not too bad by comparison.

^^ this

[blaeberry]

I had a paed appointment last week, only he wasn't there and the cover person just asked 'so what do you think?' 'please refer me to someone who doesn't have to ask me what to do'

Everyone (apart from the paed we didn't see) just say ds is a puzzle . EP did a long assessment but offered no advice at the end. Salt are finally helping after we took them to tribunal but preschool were pitiful. Autism Outreach don't bother as ds just sits and stares into space behaves well at school.

[FutureChicken]

Blaeberry sounds familiar.

Preschool were awful, she started just sitting but descended to spinning and tapping... new behaviour. Like under stimulated zoo animal (stopped after 6 months from leaving). She still cries if we look like we are driving there. I'll never forget her being told off for hiding her hearing aids (after a telling off), she was so confused and sad