ASD assessment, GP hasn’t processed the referral from 5 months ago

[vestedinterests]

Child is 10, in March I made an appointment with Senco to discuss ASD assessment and obtaining the diagnosis. She explained that the school would provide me with the forms which I had to complete and take to the gp practice. The gp would then pass the paperwork onto a panel who would decide whether or not child could be assessed. She said the process is lengthy and it would take at least 18 months. I completed the forms and took them to the practice the following day. The practice was undergoing a refurbishment and I was asked to go to the back office and wait whilst someone scanned the forms in. It was the same room where the nurse was taking calls from patients. The receptionist emailed the forms to gp and asked me to hang on as she wanted to double check with the nurse that I didn’t need to do anything else. The nurse confirm the forms should go to the gp (he is also a partner) and that they would call me if anything else was required. Senco emailed me a couple of days later to check if I had dropped the forms off. I confirmed in the email that I had. She emailed me back linking some websites she thought I would find useful. I rang the practice this morning to check on the progress or who I should be contacting whilst the assessment is being processed. I have been told that the forms have not been sent off as there is no school report and I also need to discuss the referral with the gp. I asked why I hadn’t been told this earlier. They couldn’t advise. I drove to the practice on my lunch break and submitted a complaint to the practice manager. She called me just now to advise she was in receipt of my complaint but I still need a school report, another report that I have to complete myself and that even if she had everything in place, she will not be able to do anything until the 4th September as she needs to discuss the referral with the gp partner but he is on leave until then. I broke down whilst on the phone as so much time has been wasted and the referral is still not done. She confirmed that the forms had been emailed to the gp but not on the day I dropped them off which suggest no one is telling the truth, the staff are disorganised if not negligent. I don’t know who else to speak to or what to do next, other than wait until the 4th when the gp comes back from leave.

Is anyone able to give any advice on this?

Can you afford a private diagnosis?

@jlpth No, I can't afford to go private and from what I have heard it wouldn't be recognised by nhs/local authority so couldn't get any additional support at school etc.

My DS is under a paediatrician for suspected autism. He was referred by the health visitor at his 2 year check up, and again by his speech therapist at 2.5 years.
He hasn't seen anyone since, I've had 2 telephone appointments in 4 years, with 2 different paediatricians who have fobbed me off with generic questions about his toilet training and him not sleeping/early wake ups (generally 3 or 4am every morning).
When I phone or email the paediatrician team to say my DS is now 6 and has not seen anyone in person, they essentially reply "yes, you and 10,000 other families".

Good luck. I don't know what the key is, but if anyone can share it I'd be grateful too.

Unfortunately you do always need to check up and chase this sort of think.
But i sent off referral qnd gp here has referred with no school info at all. (Though obviously i dont know i could get stuck later before assessment.
But i had called and spoken to gp beforehand who said asd/adhd and we do have ibfo from ed psych too.
I had also done huge excel spreadsheet of issues borh home and school. Other parents have had forms completed by school.
Email school now asking abouy them doing this report. Then chase up after first school week.
But yes no reason gp couldnt contact you straight away to get all this done in march.
Maybe consider if you wabt ehcp for picki g secondary school as you will want to do rhat now

I’m unsure why the school didn’t refer to paediatrician? I thought they could.
But the quickest thing would have been to book an Appointment with the GP and ask for a referral yourself.
All in all, be prepared to wait years for a diagnosis. School can still put support in and you can still apply for EHCP.

Yes, we need to apply for secondary by the end of Oct. How do I apply for ehcp without a diagnosis?

I learnt the hard way after a year that this happens quite often.
I ended up paying privately on the reccomendation of the receptionist of the original referral unit as a similar thing had happened to her daughter.
The diagnosis was recognised by the NHS and LA.

@Busornobus67 yes, you are 100% right I should have followed this up sooner. It's no excuse but I have been suffering with depression and just unable to deal with things. I 100% failed my child here although a quick call from the gp would have been helpful. I'm not British and I feel like I don't navigate this system well

Happened to me too. I'm good with admin. Native English speaker. Persistent. This is nothing to do with you and everything to do with 'the system'.

A pretty major role of GP surgery is to efficiently deal with paperwork and refer patients to the correct NHS area.

I was told the surgery had sent the referral. His counsellor said nope, not received by the relevant area. Followed up 6 times by email and also via e consult and phone. Saw the GP twice- both times was told by him it was submitted.

After my son attempted suicide, he was fast tracked into the system via emergency referral through A&E where he remains. He is 11.

Getting this type of thing wrong has an impact.

Not true whatsoever.

Support from school should come from need, not diagnosis.
Get on to the school and start making support plans on his transition to High School
These should be dependent on his needs. The teachers should already have identified what, if any, extra support is needed.

Are you in the UK? You should be able to self refer to CAMHS as they often do the assessments. Have you looked online for your local ASD pathway.

As mentioned above - your child absolutely does not need a diagnosis to get support in school. An EHCP would be helpful but even without that if he has needs they should be being met in the interim. What support does he have in school?

Ds was flagged up at 3. Fobbed off by neurodevelopmental team until saw speech and language. 2 year wait for that, then some input over approx 3 years. Re-referred to neurodevelopmental team for assessment - but Covid happened. Been on waiting list for 18 months. Received letter this morning saying they no longer do teleconsultation calls (first I'd heard of it being one of those in any case) so all on that list are now at start of a new waiting list...currently 4 years!!!! Ds is 10. So a child flagged at 3 MIGHT get an assessment at 14!

In the meantime, we have hospital appointments approximately twice a year with community paed, basically just as "holding" appointments so we don't kick off that we've been forgotten. Which is using appointments that could be of more use to others.

It's crazy!

Apply for EHCP without a diagnosis BUT get lots of reports from anyone involved to back you up. DS has had one since 5 years old. Took 49 weeks instead of statutory 26 weeks. Flag up that he is on waiting list for assessment. Expect EHCP team to turn you down (default position seems to be refuse an assessment unless parents are willing to fight for it.) But DO fight for it as a staggering number of rejections are overturned when they go to mediation. Saw a figure of £6 million spent by my local authority on legal fees trying to stop EHCPs and specialist provision being granted vs £3 million spent on actually providing it. Shocking - spend that £6 million on provision and they're no worse off financially but a massive difference is made to children and families.

many private diagnoses are now accepted by education

@Backtothe90ties yes, in herts, they had one on one support in y2 and some additional support one morning a week before school but it was during 20/21 when we were in and out of lockdown, the only other support since was a weekly session with Senco

@Pigsears so sorry to hear that and I hope he is now getting the help he needs thanks to your perseverance

You can use Right to Choose for this, which means your GP can refer to a private provider but at no cost to you. This will mean a much shorter waiting time for assessment. Since the GP seems a bit useless, you should look for providers that work under the right to Choose scheme and they can provide paperwork for the GP. I suggest asking in your local Facebook group.

@vestedinterests it's scandalous. SEN support in the UK is definitely a case of 'he who shouts loudest'. I see it often in my LA. The parents who lawyer up and threaten with legal action get seen first and get amazing service. You HAVE to champion your child and constantly call to check up, email, keep a paper trail. It's exhausting and so unfair. EAL parents or those with SEN themselves get the poorest support.

@SnowWhiteAndTheTwoKids i'm eal and suffer with poor mental health although not under the care of the mh team at present. Come from a family of mh history, father committed suicide when i was ten and i suspect mother is undiagnosed bipolar. I will start with the camhs referral, highlight the importance of dealing with the paperwork efficiently and referring onto the correct nhs area as per pigsears post, will also mention the right to choose when speaking to the gp on the 4th as a way of fixing this situation. I emailed the school as soon as I got off the phone with the practice but schools are out for summer until the 1st here. Thanks for your help and for sharing your experience everyone

I have two children who are diagnosed with autism and global developmental delay. They were both diagnosed by age three.

The system is really unfair. I’ve found that if it’s not picked up on and diagnosed by the time the child is nursery age it becomes a nightmare as all referrals then go through the school. I know one woman at my children’s school who’s child was referred for assessment two years ago and still hasn’t had an appointment. It’s completely crazy!

I would go back to the SENCo and ask for a formal meeting as a matter of urgency. Ask them to state what has improved that he no longer requires 1:1 support. If he still has the same needs they should be providing the same support. Keep on at them. As above the people who shout the loudest get the best service unfortunately. Good luck!

Depending on the local authority and Local Offer, it can take up to two years for an ADOS assessment even if child accepted on the pathway. Whereabouts are you OP? I'll have a look at the process in your area if it helps x
Also suggest you duplicate your post/create new thread on Special Needs board.

National and Local SEND policies (hertfordshire.gov.uk)

Thanks @SequinsandStiIettos