Years long wait for assesment in UK

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Children face five-year wait for autism check

This doesn't surprise me at all. All services like this have been absolutely choked of money for many years. I don't see there being any extra money, in fact I only see it getting worse, in the coming years as well. It's nowhere near the top of the government's priority list.

Calderdale is only a stones throw from me, and the report matches well with what I know of autism services in the area. I know one couple, and have heard of others, who have basically been told that their child won't even be accepted on a waiting list for assessment at the moment.

The unit that assessed me in the next dale over, Airedale, is in the same situation from what I've heard. I was lucky enough to be referred shortly after the unit opened, so only had to wait a few months, but apparently, in the first six months, they received several year's worth of referrals - prior to that, the only option had been to secure funding to be referred to a private clinic with very limited places for NHS patients. None of the follow-up interventions which were proposed at my assessment have happened after waiting over three years, because all staff are now dedicated to clearing the back-log of assessment referrals.

On top of that, the last round of council cutbacks closed down two different disability advocacy organisations, and a number of other community projects used by people with mental illness, learning disabilities and autism. Local social services have no unit dedicated to autistic people, either; unless you have learning disabilities or an addiction problem as well, they don't have any help to offer. This also means that many more people have no support to see their way through the Kafkaesque nightmare of the disability benefits system - I've experienced this myself, losing my disability advocate right in the middle of my PIP appeal.

With the current government aiming for zero central government funding for local authorities in only a few years, this is only going to get worse - the cutbacks mentioned above were accompanied by a Council Tax increase several times the rate of inflation to try and compensate for the deficits that it is leading to . Places like around here, where all of the former major industries are now extinct, will feel this the worst, so it doesn't surprise me that Calderdale was singled out as struggling particularly badly.

I beleive it to be like a 'postcode lottery', many people wait years to be assessed but some wait less time. I think it depends upon where you live.

Yes, from other UK folk I've talked on WP and elsewhere, there's no consistency at all.

Even the diagnostic process varies wildly from place to place. My assessment was five or six hours long, spread over three interviews, with the involvement of my Mum by post, and my formal diagnosis is Autistic Spectrum Condition Level 1 plus some qualifiers (though informally I was told equivalent to Asperger's Syndrome.) A friend of mine, who was diagnosed not long before me at a different clinic, had only a single interview, little over an hour long, and was diagnosed with Asperger's Syndrome. So, two clinics in the same town aren't even using the same clinical definitions or diagnostic tools - mine were closer to the DSM-V version, where all autistic spectrum conditions are rolled into one (primarily used in the USA), whereas his were closer to the international ICD-10, which still includes Asperger's as a distinct diagnosis (ICD-11 is slated to follow the DSM-V when it is released.)

There are also things like discretionary discounts for Council Tax, housing assistance, and travel which vary widely between different local authorities, and often barely any effort is made to let people know what is available. Whether these discounts depend on a particular diagnosis or receipt of a specific disability benefit is often also at the discretion of local authorities or service providers. Much the same can be said for the quality of services to help disabled people into employment.

For me it is not just the waiting that is disturbing but the nature of the assessment process. One meeting here, one there, something cancelled, then a long wait, then another meeting.. the living with uncertainty for so long. Heard of someone recently who did 1.5 year of back and forth appointments to then be told by someone who was overseeing the case (and had never even met the child) that the information was inconclusive so they have to start all over again for a second opinion. Meanwhile the child, a typical black and white thinker, is dying in the uncertainty and suspense of it all.

I have mentioned we took the private route. Two months from when we submitted the paper work. Then a full 8 hr one day assessment with a multi disciplinary team and we left with the diagnosis. As these things come, that was as little stress as possible.

The UK has got a mental health crisis period.

I had to go through diagnosis 3 times. The first one saying yes I am on the Autistic Spectrum. Then when I moved area because I was still at school they wanted me diagnosed again to make sure the diagnosis was authentic the local council decided I wasn’t on the Spectrum. Then I spent 3 years confused to the point I had to see a Doctor to get diagnosed again to find out I really am on the Spectrum. Looking back, it was irresponsible for the council to misdiagnose me, I remember that consultation I was only in the room no longer than 15 minutes only to be told the first diagnosis was false it was a rushed consultation.

The UK are getting worse in a lot of things not just mental health. They have cut down on police, cut down on NHS, cut down on military, there is a poverty homeless crisis. Where I live I don’t feel safe walking the streets in the middle of the day and have anxiety and panic attacks. I am currently waiting for an appointment with a therapist to have that dealt with. I am waiting for a response for the local Autistic support group and am not getting response. Something has to be investigated and fast.

This is just so unacceptable. I genuinely just don’t understand why? I am recently diagnosed. After discovering I could be waiting 3 years on the nhs for a first assessment I paid £550 and went private. I’m fortunate to be ina position to do that. From first contacting them to diagnosis it was about 6 weeks! Its just not fair. In the meantime children and teenagers expecially can end up with all sorts of mental health issues because with no diagnosis the right support is harder to get. It’s so wrong. Why do me tal health and neurodevelopmental disorders always take a back seat?

Welp...

Back in early 2000s, 5 years was about the time for a child to get an level I diagnosis where I lived.

Everyone was held back with diagnoses like SPD or PDD until about ages 8-10. That is when 3rd grade started, and all the social skills stuff takes a huge leap.

Reason being no one wanted to saddle the kid with an $$$$ diagnosis. ASD is an automatic IEP and the federal law holds everyone's feet to the fire in the US.

The UK may take 5 years to get a diagnosis, but atleast you have a chance for services. In the US, you may get your diagnosis faster, but the services that aren't private pay are almost non existent. Try being an adult with Aspergers, and look for any help. There isn't anything specific in my area at all.

^ This is just not true for the UK, there may have been a chance of services in the past but that is no longer the case. The public health services are being hammered and any promises made by those in government are not actually provided by the frontline staff due to cutbacks.

Where I live the ADHD clinic is open for 1.5 days per week, to cover 2 boroughs of London, 450,000+ people. The ASD clinic for the same area is open for 2 days per week and they freely admit that there is no support that they can offer.

My theory...

It's money and what is required to get tested correctly.

Where I live (Metro Detroit area), the gold standard testing will run you $2K+. My husband's was two days/3 hours each. A PhD/Psychiatrist has to over see the test AND type out the results.

You have $$$ professionals spending lots of time testing. The neuropsychologist my husband saw could realistically test 1 or 2 potential ASD patients a day. He only did that testing twice a week. That's 8 patients a month or 96 patients a year tops. We don't have many neuropsychologist or PhD psychologists who want to that line of work, especially with adults.

Until the medical profession relaxes the stringency of the testing and/or who can run the test and sign off it, I dont see wait times being reduced.

I guess I am remember reading here, UK people who had Aspergers, getting support help for shopping or navigating university. I need help with daily living stuff. I thought that was great because adults get squat in the US unless you are the lowest of the low.

Did NHS pull those services for everyone or no one else new is getting them?

That sucks big chunks. I always admire that the UK was at least willing to try and help, where the US is more sink or swim unless you have money to burn.

Yes, austerity measures and consistent cuts for the last few years for all NHS and other public services. Every level from Paramedics, accident and emergency through to chronic mental health. No pay raises for NHS staff for 7 years and starting salaries set so low they can't fill vacancies.

All the time the current ruling party are happy to pour money into the companies that their mates run and they all have shares in. The current bunch would much prefer to privatise all public services and mirror the US with a sink or swim approach.

Cut backs seems to happen when the Conservatives are in power which they are. My theory is it’s because it was the Labour Party that established the NHS in 1948 in the first place. When Labour are in there seems to be more help than with the Tories.

My doctors for example to get an appointment you either have to queue up at around 7:30am or ring at 8:00am. After you have got through that is if you ring they take your number so the doctor can ring you back to see if you are eligible for an appointment. When you have anxiety that is the last thing you want. The reason for this is there are over a 1000 patients and only 2 doctors working. They can’t afford to employ another doctor.