To think a 9 MONTH waiting list for a medical assessment is a disgrace?

[MadMumx1]

This for a Neuro Development assessment for a child. Outcome will impact on education and support services will be not available until results of assessment available.

I expected 3-4 months but not 9 months!

WTAF!

No point in private diagnosis just in its suggested as it will not be accepted by Local Authority.

I'm not frothing at all.

I agree sometimes a small intervention is all it needs. My sister, the OT, says sometimes it's as simple as changing their classroom chair.

a child who has the intelligence bit due to circumstances is likely to leave a selective school without a single gcse.

THAT is what proves expensive in the long run arethereany.

So sorry Veni. I hope you can get it sorted and get him/her into a decent FE programme to repair the damage

We had paediatricians leaving their posts in my area, so then had locums. My youngest was diagnosed at 3 by a locums team. And then had to go through another ados at age 5, even though already had a diagnosis by a qualified team.
If you move areas while on a waiting list in one borough, you have to start again from the referral process. It's a disgrace

arethereany in DS's case we had to wait 5 years for even a referral to the community paediatrician which would not be accepted unless it was from the School Nurse after the school agreed that he wasn't just 'naughty' . I can't imagine it's much different anyway else. I doubt referrals are made just because the child is not top of the class.

No disrespect to your sister but I think she is talking cobblers.

She would love for it to be cobblers. She puts her heart and soul in to being an OT and finds it very frustrating.

We fought for 13 years for ds to receive a proper assessment. He has pda autism which is particularly miserable and soul destroying for caregivers to have to deal with. He's a adult now and has been left with mental health difficulties and an eating disorder due to an absence of early assessment.

If people are genuinely being seen who don’t need it on a regular basis then they obviously need to tighten their referral criteria rather than blame parents.

Ds first referral to OT was refused when he was 4. The school nurse did another referral as she wasn’t happy because she knew he needed it, he is now 9 and still sees OT regularly.

I would imagine many more people get referrals refused who need it than get referred who don’t

Oh, I see your point - you're asking how the dc get all the way to her if it's false? What happens is the parent badgers and badgers eg a senco, until they've had enough, and just pass the buck.

My ds was diagnosed with asd and learning difficulties at age 3 and now at age 5 receives no therapy at all, he only sees a paediatrician once a year for 10 mins and I've been told they will look to discharge him at his next appointment I think not!

It's a disgrace.

That doesn’t mean they have to see them though arethe

I think she does sirzy. Has to follow through with all the procedure.

Your sister lived in Norway last week arethereany, and you only have the one sibling.

I'm confused!

I have two.

Like I said in many areas referrals are turned down if they don’t meet rediculous strict criteria. So if she is seeing people who don’t need it then they need to look at their procedures rather than blaming individuals who are trying to get support for their child.

When DS1 was dx 10 years ago, the wait was 12 weeks, once the referral for an ASD assessment had been accepted by the MDT. The request had to come from the community paediatrican backed up by the Specialist SALT.

When DS3 was dx last year, the wait was 8 months with the same procedure for referral. Still a lot quicker than a lot of areas.

We were offered various support staff after DS1's dx, nothing with DS3. In fact he was signed off all services by the end of the first term of reception. It's all gone a bit wrong at school, so now I have try and get another referral.

Reception is the only class in my DC school that has a TA for general classroom support. TAs that are in other classes are to support children with pretty significant SEN.

If this is for an autism assessment that's quick. My child has been "on the pathway" for over 2 years and still has at least 2 more assessments needed before another wait for diagnosis.

The system is broken.

We'll have waited over a year for an initial appointment with the community paediatrician by the time it comes round next month. I dread to think how many years we might be looking at before we se an actual diagnosis. The whole system is broken and it's not going to get any better.

support services will be not available until results of assessment available
The support shouldn't rely on a diagnosis, but on need.

They need a 121, plus the teacher, plus the TA - eh? Not all children with SEN have a dedicated 121....the teacher is there for all the childten in the class.....why would they have a class TA for the child as well as a 121!?

I am surprised about the OT situation, the criteria for support here is so high that my ds was discharged, despite having a diagnosis of a genetic syndrome which causes him difficulties with sensory issues and fine motor skills (can't get himself dressed or undressed without help, struggles with cutlery, difficulties with writing etc). Mind you, we are under Virgincare and it is a fucking shit show.

YY about Virgin Care You cant book an appointment at our GP surgery over the phone AT ALL The phone system just does not work. People have to traipse down there for 8am just to MAKE an appointment. Fab for the elderly/infirm/disabled. Or those who have to be at work by that time or on the school run. Fucking useless.

Virgin care took over podiatry locally a few years back. their contract didn’t cover under 18s though meaning until it was sorted no children could be seen not good when you need new insoles with each shoe size change!

We are in a position where Virgincare have the contract for physio and NHS for podiatry....they are supposed to work in unison. The complete mess this creates is why for the last 2 years ds has had splints held together with gaffer tape, ill fitting insoles causing sores and blisters and insoles that are so big we can't find shoes that fit them!! It has taken me 4 phone calls to establish that he seems to be without a physio at the moment.....

Raised concerns initially aged 2.5. Eventually, I think aged 4.5 gor referral from consultant pediatrician (seen for physical issues) to early years team. Took 10.months from referral to initial appointment. From initial appointment to diagnosis appointment was about a year and a half (kept getting pushed off). Received asd and anxiety diagnosis.... And was discharged. Zero follow up or support. Asked for referral to camhs as the anxiety is debilitating and was told no point as they are so overstretched they would refuse the referral.

Initially raised concerns to school when he started nursery. They put support in place and have continued to do as much as they can on shoestring budget. He desperately needs a 1-1 and a lot more support, SLT input, OT, and is falling further and further behind academically. School applied for ehcp. Needed evidence that they are already providing support and he needs more which they did. (can't apply for ehcp unless you have evidence of support already given). Local authority refused to even assess for ehcp as they say he already has support.... So to get an assessment for ehcp you have to give support. Which they then use as evidence that they don't need to assess

Ended up paying privately for OT using DLA money. Now have had to stop the OT (against advice) to save up the DLA for private SLT. It's like firefighting but with one bucket of water to go between a number of fires.

Definitely not the hardworking staff's fault. Just significant lack of funding. Its also a total postcode lottery. If we moved literally 10 minutes away, the waiting times and services are incomparably better

It is a disgrace but waiting times nationally are appalling in general.
I was asking for a referral for assessment for my DS from him being 1 year old as he wasn’t meeting milestones. I saw 4 paediatricians over the next 2 years who all agreed he needed assessing by the autism team and then they wasted 2 years passing him off from one paediatrician to another.

Then once they finally referred to the appropriate person the assessing dr left the team and they didn’t employ anyone else for nearly 2 years.
I got a letter in the post not even giving me a waiting time just basically saying we know about your ds but have no one in post to see him.

Finally when he was 7 someone came into post and diagnosed him with ASD so he can now finally begin to apply for the help he needs in school.

It’s frustrating because everything you read discusses early intervention being best but unfortunately there’s just not enough money being invested into the diagnostic services I can’t see it improving either tbh.

@MadMumx1, how old is your son?