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).

Go to PALS and explain the impact the delay is having.

NHS lost my son’s referral and after my PALS complaint he was fast tracked to where he should have been and done in 6 months.

GPs are being told not to do shared care even with NHS diagnoses as regards ADHD meds so it is worth getting it done via the NHS. My NHS diagnosed dc have just been punted back to their NHS consultant for meds from their GP.

GS referred by GP August 2021. Finally placed on the waiting list for assessment June 2022, This was because, according to the ASD assessment team, the referral was made shortly before he was 8 years old and therefore needed to be sent to another team! DD made a complaint through PALS but the over 8's team were adamant that his place on the waiting list would remain June 2022. Poor soul is now at secondary school and still waiting for assessment.

They do in some areas

i am sure they do, apologies for my brevity.
i wonder if this is the issue with op, it seems to be what she is saying.

Could you clarify what you mean by wanting the waiting list to be "maintained as an actual list rather than priority", @Poffalot .

She probably means they have a priority list as well as the ongoing list. The priority list is very much needed as when you have ill children who need to have treatment adjusted due to autism and get knowledge that is helpful they need to be prioritised.

I agree with this sadly, look at on here…
”my dc doesn’t want to go to school because he doesn’t like being told what to do by the teacher”. Ooo sounds like PDA
”my dc has smashed up the living room because I said it was bedtime”. Ooo sounds like adhd…
you should get them tested…
agree it seems to be the answer to so much and the children in genuine need are stuck

RTC in many areas may open up after April from what I heard so I’d keep checking that, not sure why you wouldn’t want to do it?

Just curious, what will the diagnosis give you at this point? If DC has ADHD and has been referred for ASD chances are very high you’re going to get confirmation of ASD, the school should already be meeting DC’s needs and there is practically no support for ASD anywhere else. I’m not saying don’t get the diagnosis, but honestly at this point I’m not sure what the rush would achieve. They’ll probably confirm ASD and nothing will change because they tell you child is ASD, off you trot. It’s within school where help can be developed and they should be led by need, not diagnosis.

ADHD was the priority for me due to medication.

It's not a great situation but also let's not lump the entire NHS together. The issue is with that particular team. I work for "the NHS" and sometimes referrals get missed due to human error but we always find a way to see people for whom it happened ASAP.
Contacting PALS is probably the most efficient way to get this looked into. I don't know if it's worth escalating to CQC.

ii think these are genuine needs

It’s widely reported how dire the situation is across the NHS.

In the CAMHS service I worked in for 24 years (left in Jan 26) referrals are received by a triage team. Triage then assess the referral and do initial checks to ensure the child is placed on correct waiting. The wait time in triage for an ND referral in January was around 1 year. That is a year wait BEFORE they are placed on the ND waiting list and the official counting begins.

We had paused the routine list and were only seeing priority until around 6 months ago. Priority were usually those with Youth Justice involvement, adopted, urgent social care involvement or at very high level of self harm.

There is a move currently to stop CAMHS diagnosing ADHD and Autism as it is only a diagnostic service with no CAMHS input after the diagnosis - except a referral to the Medication team in the case of ADHD.

Thank you. That was my confusion: A priority list is surely essential when there is such a very broad variation of severity of need, and such an extraordinarily high level of demand for diagnostic services. So I was confused by the OP seeming to suggest that it was unhelpful.

Incorrect. You wouldn’t get through screening and on the wait list just for sensitivity to clothing tags. The bar is high to get on the list.

That sounds awful. I'm afraid I also found your OP hard to follow. So did you get a letter saying your referral had been received but then not one to say you'd been added to the waiting list? There is a 6 months wait where I am to even get triaged to be put on the waiting list but this is the point parents are contacted (so they know whether the referral has been accepted or not). I always get them to call to make sure the referral is logged in the first place. I can definitely imagine how the referral could get lost in between but they should absolutely rectify their error.

Are you certain ASD and ADHD are assessed by different people? It's the same team where I am. Once you're in the system, they will assess for both if symptoms point that way, regardless of what the original referral was for. It's not uncommon for a child to receive one diagnosis and then receive another one from the same team within a year. Once they're at the front of the queue, appointments can be fairly frequent.

Google NHS referral to treatment guidelines and double check your understanding of the pathway is correct (we can stop/pause take off for a variety of reasons) and the write to pals and quote the relevant parts.
we are absolutely measured on wait times still but not sure what the community paeds targets area.
sounds like they’re just being difficult, correcting 1 persons pathway by 2 years on a waitlist of 6 will have absolutely no impact on their performance. And is the right thing to do.

Sorry you've got this to deal with OP, your best option is to go through PALS.

You may have just done a good deed through your post though, as my DC had an accepted referral 12 months ago but I assumed I wouldn't hear anything til we hit the top of the list, and I think I may be wrong based on yours and others posts so thank you! And I really hope you can get PALS to sort it out for you.

@HoraceCope
no-
we requested asd (and adhd and adhd diagnosed) via gp in writing

we got a letter from comm peads (but email address was asd helpdesk ) when dc was 10 saying added to waitlist. But they didnt do anything else.

There is no confusion on my side
ASD helpdesk you can see online is the department that was doing asd.

i dont believe there is confusion on theirs they know my letter refers only to asd. But are lying about it.

But anyway even if i didnt have this letter whoever else who would have received referral would be at fault as gp sent it and no actions taken not even to say to wrong place .. because it was the right place.

Obviously 3 years things have changed and you can see it now goes to other place.
There is no doubt because of the letter.
Which was sent to children just having autism assessments

i don’t want to be mean OP but I am struggling to understand your timeline. Clearly there has been some sort of screw up with the waiting list but beyond that I am finding your posts kind of confusing.

If you do want to make a formal complaint (and you should) then a clear timeline and being really direct about what the problem is will help. It doesn’t matter really for MN does it, but will be important to be crystal clear for the complaint.

I have a clear timeline in my responses to the department.

It becomes confusing as im having to argue with her when she is intentionally lying/misrepresenting facts. She is just repeating that the letter was ADHD when it was not.

In 2023 It seems to have been Community paeds dealing with both at least the initial bit of doing the letters etc
That changed and ASD was split off completely.
I dont think that is relevant though because you can be 1 department or 2 and have separate processes. The fundamental fact is it went to the right place and they received it. Or a referral but with both ASD and ADHD on. But only did the one wait list (ADHD). I could be at that point it would have been picked up and looked at by either so perhaps they maintained a ASD and ADHD list but then forgot that they hadnt actioned the ASD bit. Whereas patients only with ASD were progressed.

Timeline
they received referral Feb 2023
they sent a letter Apr 2023 - youre on the waitlist
Then did nothing.

The latest message directly says 'the GP referred to Comm Peads not an ASD assessment. '
Im asking GP for this proof. But I did literally ask GP for assessment for both.

im certain it is not the GP
Because she then says CP and ASD are separate services (now true but intentionally missleading as this is 3 years ago). Even if we agreed that the letter was for ADHD (its not) then it is crazy for 2 services to use identical letters and frankly would be asking for the exact situation. There should have been ASD or ADHD or both. With contact details for the correct department for each. We never got any wait list letter for ADHD. But did get those questionnaires about 5 months later.

The ASD-only referral says exactly that about seeing community paeditrician too.

I initially thought they were confused but its become clearer its intentional. I cant expect them to know what the process was 3 years ago. But someone not being difficult would have agreed by now that they were dealing with both.

Issues
The departments have changed who deals with it and both the email and phone numbers
They seem to be saying GP error for only selecting an appointment rather than ASD assessment - but we didnt get an overall appointment it was

6 year waits are obviously a joke.
Personally having just read another thread where people are pushing it being ASD with only sensory issues, i think a better triage would make more sense.

I suggest for ASD
GP to give out DSM/ICD criteria.
Or if referred by school for them to hand out.
And for it to be included on waitlist letter
There are the questionnaires online but not a link to the diagnostic criteria.
This would allow parents to understand what Autism is. And think about the evidence they may need of that.

For ADHD
As above but also within the criteria pointing out that because it needs 2 settings the school questionnaires matter a lot. That they add up the totals and if below a level then more investigation or refusal. The parents could then contact in advance other settings like extra curricular.
Also to make clear that if there had been strong enough evidence from the school the diagnosis might be made at the first appointment.

“im having to argue with her when she is intentionally lying/misrepresenting facts”

who is the ‘her’ that you are talking about?

What do you suggest we do with people who don't attend? When they have been sent a letter, a text and a reminder phone call. If they don't attend they get a letter and text asking them to call to rebook, if we don't hear from them after 3 weeks yes they are discharged. Some of the clinics we run are very in depth, require 3 professionals and appts last up to 2 hours so we only see 3 -4 per day, with one clinic a week. If people don't attend then it makes the wait list longer if we then offer the person who didn't attend multiple appointments. And then people moan about the wait lists. Can't have it both ways - if you want a shorter wait list we have to be strict on non attendance. Or should we be less strict and even longer wait lists - which would you prefer?

Yes, it's really frustrating when you know there are so many people who would grab these appts with both hands, and then others who don't show and don't even call. And then there are those who really take the mick - I still remember the Dad who, when called to ask why they didn't attend, said that we didn't transfer the £400 he apparently needed for a taxi to get to the appointment into his bank account so he couldn't come. Despite us offering hospital transport. And then when we discharged them he contacted his MP, who contacted the CEO, who made us offer another appt by cancelling another family. And then they didn't attend.

Yes, there are rubbish health professionals, there are those who make mistakes due to being overwhelmed. But no one can mention the patients who back log the system. The NHS needs massive overhaul, throwing more money at it wont help without changes in processes and attitudes.

@Bushmillsbabe If you are a medical professional working in the service, then you know that the primary issue is resource constraint.

This is why administrative non-compliance of the smallest order (not just did-not-attends but people not replying to confirm they still need an appointment when they've already had the date booked and confirmed) is acted on so punitively under the mask of 'validation'.

This is why patients are stepped down so aggressively from ICU to discharge under 'discharge-to-assess' when they can often barely stand and without having adequate support at home when they would previously have had weeks in CCU.

This is why you have to become an amateur clinician in order to argue your case successfully when you finally get an appointment with your GP due to aggressive gatekeeping and labelling all but the most urgent conditions as 'self limiting'.

This is why the service takes a 'watchful waiting' approach as opposed to a proactive preventative approach.

It is not on that we are failing families like @Poffalot , dressing up our efforts to prune waiting lists under RTT rules as admin errors, and gaslighting her when the reality is we've utilised the smallest clerical error to log them as a 'patient initiated withdrawal' or to stop the clock - in her case for two years.

Yes, did-not-attends cost the service £1 billion annually - and they are mentioned and demonised all the time, actually. However, the maintenance backlog for buildings and equipment alone is £11 billion. We have a £38 billion annual funding gap to get back to 2010 levels.

Increased spending absolutely will fix the backlogs for @Poffalot and others waiting a disgraceful average of 6 years for their ASD assessments and will spare them the financial, emotional and marital tolls that they suffer in the process.

@FrauPaige not necessarily. In our case, and in many areas in commuinity paediatrics the primary issue is skill deficit. We have vacant posts, so in our case the funding is there, but we cant recruit the right staff due to risk of abuse and cost of living in London. We have to double up on some home visits due to risk and threat to professionals, which again makes the wait lists longer. Then we get into a vicious circle with those who are left being over stretched and then also leaving. We struggle to recruit due to being very specialist, and many of our staff are from abroad. An injection of cash would make minimal difference in my team.

Our team was praised in a recent CQC SEN inspection for 'going the extra mile' 'showing flexibility and empathy for families' 'excellent care'. Because we all work many extra unpaid hours to prop up the service. So then to be insulted by parents as being 'lazy and stupid' hits pretty hard. Many of my ex colleagues have moved into private practice for better hours, and better treatment by patients (pay is fairly similar for therapies) - more autism assessments are being done, with more diagnoses than ever before, but there is a shift towards these being done privately as that's where staff are moving, and after 20+ years in the nhs, I'm nearing my limit too.

I have a lot of sympathy for families who are waiting way too long, which is why I get frustrated with those who make the wait lists even longer by not attending, don't follow advice and then come back to us moaning their child isn't improving.

@Bushmillsbabe I hear the exhaustion in your words, and I want to start by acknowledging the extra mile you and your team are running. Being praised by the CQC for your empathy while being abused by families is a recipe for the exact burnout you are describing.

However, while I see the skill deficit and the toxic environment you face, I must reassert that these are symptoms of chronic underfunding.

The inability to recruit in London isn’t just a lack of people; it is a failure to provide a remuneration and support strategy that reflects 2026 realities.

Similarly, doubling-up on home visits is a tragic necessity that drains your capacity. Better-funded community mental health and earlier intervention would de-escalate these families long before they reach the point of threatening the professionals trying to help them.

A significant increase in the core budget would buy back the dignity of your profession. It would allow for retention bonuses and reduced caseloads that make staying in the service more attractive than private practice. We are losing you - a professional with 20 years of experience - because the system has traded your wellbeing for efficiency.

Until we bridge the funding gap, we will continue to watch our most valuable people walk out the door.