NHS refusing to put dc in correct waitlist position re asd referral already waited 3yrs!!

[Poffalot]

My dc has been waiting 3 years now from
gp referral for autism (also referred for adhd but that is sorted)
It came to light last month that the nhs team hasnt logged the asd referral but had sent us the ‘you are on the waitlist’ letter re asd.
My friend also had this happen
another friend received 100% identical letter for autism and then did get sent forms out.

So anyway i called up and expected a very quick oops we will fix and put in correct place.
But no ive got lied to and told the letter was re adhd (its not as asd email address etc)

im furious.
And cannot see for what reason they refuse to correct it. Now trying to blame the gp!!

i get nhs dont like to admit mistakes but had assumed that was more relating to injury.
Why are they making me write a complaint - i just want it fixed!

I do know our area are trying to cut down on the diagnoses as RTC has been restricted here.

And even more gaslighting - telling me that being on a waitlist (well not at all so no chance of being seen at all. But being now on there 1 yr vs 3 makes no difference and it is the right place!

For me a deeper concern trusting the NHS but also this is the area where they ‘decided not to maintain waitlists in order, its priority’ so wtf knows they are seeing anyone whether it is in any way fair.
i actually think ‘accidentally’ not adding but sending confirmation then denying is pointing towards fraud. (Because of the refusal to correct it)

I dont want to go RTC

• its been paused
• I had thought after 3 years i may be near the top of nhs
• for other people for adhd theyve found hard to get shared care with gp, and or difficulty getting dignosis accepted etc

i get people may question why it took so long to realise.
1- i had to chase up adhd referral too and that seemed missing for a few hours. It had taken 2 years - now suspect they had lost that too as i got appt booking that day..
So i was focussed on adhd. At adhd appt i said - we have been referred and on waitlist
2 the asd letter itself says basically dont expect to be seen for several years (and other asd parent hadnt been seen in3 years)

Im taking it further.

im generally angry with nhs anyway as cahms is similarly or worse (think its the same people..) and have rejected seeing my actively suicidal and hallucinating child - for no reason.

Also aside from her MH i think a main reason for her asd diagnosis would be because the nhs insist on treating her as NT so trying to get a blood test etc.

i want to know why they care so much where she is on the waitlist. As afaik nhs arent targetted on short wait times anymore. And anyway it would be disingenuous anyway as (well they are
likely missing a few still) but mainly as they are directly telling parent to use RTC.

How can we be in a state where its taken 2 years (well 3 incl doing assessment )for adhd diagnosis and 3++ for autism?

i dont want to have to complain as the dept would still have to see us (and people can hold grudges).

The average wait time for ASD assessments is now about 6 years. Some regions are now
paused assessments for most children.

I can’t really understand what your complaint is.

Gp referred 3 years ago
it was received and letter generated (saying added)
But not actually added to waitlist
They will only correct back to 2023 rather than 2025!

Well yes i need to look at the link they sent re wait times. But.. if it is 6 years we will end up waiting 8 due to their error.
Also 5 more years and she will be over 18 so have to start again.

Correction of my text— 2025 not back to 2023

It’s very poor not to correct the position.

We had this with a cardiology referral that wasn’t dealt with properly. In the end got PALS involved and she was placed onto the waiting list where she should have been

It really is awful. We waited over 3 years. My area has now paused the acceptance of new referrals. The service is over whelmed, and the number of referrals is through the roof.
Do you have the number for the asd assessment team?

Btw, how old is your dc?

Sorry, but I found your OP very difficult to follow.

If you do go down the complaint route you should get help with your correspondence.

Why do you think they argue so much though?
its really not in any of the patients interest because this admin person must have spent hours just disagreeing with me. Then have to deal with a complaint too?
not to be rude - but its honestly like there is something ‘wrong’ with the person because they are arguing something i have evidence isnt true. And then try to confuse me.

Also even if they are right (they arent) then the issue would be why are they sending out incorrect or very badly worded letters that they think relates to adhd but dont say which condition. When with asd and adhd its common to have both.
i mean the letter is badly worded either way. They also claim that they will have to triage (again).

its true though that even when we got the adhd appointment letter that doesnt actually say adhd either! But i knew it was for that because i chased up only adhd and made appt on phone.

Also why both completing the asd forms now if it is at least another 2 years because of the error. Its going to need to be done again. Utter joke!

i feel there needs to be more than just a complaints process - the person seems to have no supervisor

Also my youngest seems to have asd/adhd too. But i literally cannot face dealing with nhs (and school).

i see that asd diagnosis probably wont make much difference- but things can escalate so quickly and imo shes going to be unable to work potentially possibly even with adjustments due to pda and severe sensory issues.

Schools are often very good at putting measures in place if your child is on a waiting list. How old is your dc?

For your own sanity, let the letter and admin person thing go. It’s frustrating, but you have bigger fights on your hands right now.

That is what she is complaining about. Just because it is, doesn't mean it should be.

Isittime for- i get what you mean re communication but i actually dont have an issue with it. Im just so furious. About several things at once hence rambling at the end.

And the admin person intentionally tries to confuse so i keep having to repeat.
And end up having to add too much detail.

My complaint is - the nhs made an error, refuses to correct it and is lying to ‘my face’.
They keep reiterating that comm paeds dont deal with autism.
And yet that is who sent the letter so…
its 3 years ago so has changed.
I have a copy of another letter sent to a child who only was referred for asd and its identical…

Do you think the adult list

• will be longer?
• might be maintained as an actual list rather than priority.

My kid is almost 14 and was 10 when referred.

No, it absolutely shouldn’t be so
long a wait. I don’t think I suggested otherwise.

The number of referrals have increased about 10 fold in my region in the last 8 years, the number of staff have not increased 8 fold, that's why the waiting lists are increasing. It's also very hard to recruit and fill vacant positions

The complaint is that the child should have been on the waiting list for 3 years, but due to NHS error they are only going on now.

longer waiting times make the complaint even more valid - the child should be at least halfway to being seen (if the wait in their area is 6 years) yet they are not.

The whole thing is absolutely bonkers

We did RTC this week and the providers are now saying their wait lists are up to 2 years!! Which is just madness as the whole point was to get people seen bc the NHS can’t cope with demand

The wait lists can get longer even when you’re on it. We were initially told 18 months but then it ended up being over double that.
The children with severe needs (rightly) get pushed to the top of the list.

It's horrendous, op. In our experience you have to be the one who shouts loudest, consistently and persistently enough, in order to get anywhere. We ended up asking our mp to take on our case. Only when he'd opened a complaint on our behalf with PALS did things begin to move. I had already asked the neurodevelopmental services team where my daughter (9) was on the list and what criteria they were using to determine priority. They said they were 'unable' to tell me.

Her mental health had by then deteriorated so significantly (suicidal language, not attending school or leaving the house even for once-enjoyed activities, hearing a critical internal voice, not eating or sleeping) that we put in an urgent referral to camhs for mh support. The result? Rejected because she was awaiting neurodevelopmental assessment - yet nobody would tell us how much longer we were likely to have to wait without support. We were merely signposted back to interventions we had already undertaken but that were insufficient for current level of need.

This camhs provision gap (effectively no support while children are awaiting neurodevelopmental assessment) represents a significant safeguarding risk - one that elected representatives can't ignore where you outline to them factors such as hallucinations and suicidal language. My advice is to ask your MP to take up your case. You'll need to be forensic in your approach to communication though, listing out the timeframes and correspondence involved.

I wish I could say that a diagnosis will improve support, but the reality is that it doesn't - all it does is shift your focus onto another battle with other agencies to have your child's needs understood. We're currently now involved in yet another set of hurdles with the local authority. So once again we're rolling our sleeves up to go into battle. It shouldn't be this hard, should it? It's literally knock down after knock down.

@Whatafustercluck This is an all too common situation.

The worry for me is that there is no end in sight. When the conservatives under funded the NHS with austerity and beyond, the expectation was that it could be fixed by Labour returning funding to the NHS if they got back into power. When the pandemic hit and restricted access, we thought that once it had passed things would go back to normal.

The problem is that we can see now that there is no bouncing back from this - it's baked in, as are the issues with funding around adult social care, temporary accomodation, SEND funding, etc.

It's now a case of restricting access to the tiny remaining budgets by recategorising need and penalising the very slightest non-compliance (delayed confirmations, missed appointments, delayed highlighting of clerical errors, etc) to legally remove patients from waiting lists.

And it is most definitely a case of the loudest voice wins, as you say. So incredibly draining and demoralising for families already dealing with a desperate situation that these interventions are supposed to fix.

They don't. My severely autistic nephew was waiting at least three years. It is bloody obvious he is autistic. I suspect my son will be waiting three years at least. Those who are on the more severe side are having to wait because those parents of children who are maybe just sensitive to a clothing tag want them on the list too.

you were on the waiting list, but that was for adhd and you thought it was for asd

comm paeds dont deal with autism in over 11s op

op i think you should go to PALS to hope you make sense of what waiting list your dc is on
you can also try right to choose.

We get a text to say where the team are dealing with IE "referrals for November 2023" every few months.