NHS vs private assessment

Do a FOI request with both councils for confirmation.

Ask about NHS vs private diagnoses, and ICD-10 vs DSM-5 diagnoses.

They have both been know to refuse private diagnosis. I am not the only one on this community page from the Norfolk who has had similar experiences. Their was a women on here in January 2020 asking for advice because south Norfolk district council refused to accept her private diagnosis to get support with housing and college. She has been waiting over four years waiting for CAMHS to assess her to find they had covertly closed her referral and falsely told by their GP that they are the only organisation in the area who can assess for autism through the NHS when the Norwich community hospital has it own autism services. 

I don’t know how many times from the age of sixteen I have written to mo local mp about this including liz truss and George freeman. They don’t care.

Blue said:

My local authority is Breckland council in Norfolk

Have you identified for certain whether it is Breckland Council or Norfolk County Council who are refusing to recognise private diagnoses of ASD?

My local authority is Breckland council in Norfolk and I have tried speaking to my local MP a few years ago about it but liz truss couldn’t care less. 

No, national autism society are blissfully unaware of the situations and the care/residential homes in the area run by the national autism society and autism anglia are some of the poorest in the country with residents in these homes keep escaping because of they are poorly funded and poorly maintained. 

the problem is that many people who go primarily through the NHS route do so because they are at rock bottom and can’t figure out why they can’t get it maintain employment opportunities or achieve education which leads to then not having the financial funds to afford to go private. To get the support you have to get a diagnosis as evidence and unlucky in my area you need a nhs diagnosis for that. 

In my area the failing Norfolk and Suffolk foundation trust are in charge of autism assessments and if you are under twenty five you are stuck with being assessed by CAMHS which is the worst in the country.

Blue said:

As far as i am aware the National Autism Society hasn't looked into it so far. My own local authority despite it being 2021 will not accept a private diagnosis and requires a diagnosis through the public NHS route.

This sounds very sinister and disturbing. Which local authority is it?

Blue said:

This has meant that majority of children in my local council district have not received the extra support in secondary schools and colleges. Many sixteen year olds are waiting beyond six years to be diagnosed with autism spectrum disorder because of the long standing problems with the mental health trust in my area which means many fail to complete college or achieve entry level qualifications because of lack of support and accommodations.

Totally unacceptable. Does the NAS know anything about this sorry state of affairs? Is there a local ASD society that can act as a collective voice for people in the local authority who are struggling to obtain the NHS diagnosis that the local authority insists on for the provision of support and services?

Have you talked to your local authority councillor about this, and whether they can persuade the council to accept and recognise private diagnoses of ASD?

Blue said:

It should also be said that many people who go through the public NHS route are typically failed because of the way that many mental health trust operates having a single professionals to diagnosis a single disability or disorder is highly inefficient. 

My own advice is that it often pays to go private for ASD services. The NHS is there for Covid and broken legs. People should not waste their lives, or worst the lives of their children, fruitlessly battling with the NHS for years on end for a diagnosis of ASD, simply out of arrogance of expecting the NHS to provide every medical service under the sun or to save a few hundred pounds.

However, if a local authority refuses to accept a private diagnosis, then that implies the NHS (however dysfunctional it is when it comes to ASD services) is effectively a local monopoly when it comes to obtaining a diagnosis of ASD.

I would work at the local authority end of things rather than the NHS end. The situation can be rectified in the local authority with the stroke of a pen, whereas it will probably take lots of time money and effort to install the facilities in the NHS Trust to provide residents with ASD diagnosis services in a reasonably acceptable timescale.

As far as i am aware the National Autism Society hasn't looked into it so far. My own local authority despite it being 2021 will not accept a private diagnosis and requires a diagnosis through the public NHS route.

This has meant that majority of children in my local council district have not received the extra support in secondary schools and colleges. Many sixteen year olds are waiting beyond six years to be diagnosed with autism spectrum disorder because of the long standing problems with the mental health trust in my area which means many fail to complete college or achieve entry level qualifications because of lack of support and accommodations.

It should also be said that many people who go through the public NHS route are typically failed because of the way that many mental health trust operates having a single professionals to diagnosis a single disability or disorder is highly inefficient. 

Most people on the autism spectrum who are having issues maintaining and obtaining meaningful employment  are getting their benefits denied because many of them need additional diagnosis for sensory processing disorder, ADHD and learning disabilities to support their claim. this is very common with people who have been denied personal independence payments.

There's a huge amount of individuals on the autism spectrum with co occurring neurodevelopmental with above average IQ  who are expected to figure thing out for themselves and the national autism society need to focus on those individuals more than those with co occurring intellectual disabilities because its these individuals who are more likely to become homeless, Being sectioned under the mental health act and forever trapped in poverty through the current benefit system or low income work opportunities or becoming physical harmed and crippled in the workplace. 

The National Autism Society only seems to operate within major cities and influential location across england. they have no clue how many local authorities similar to mine are mis interpreting their website to deny people support and assistance they need.       

Has the NAS done any investigative work into the acceptance of NHS and private diagnoses by different local authorities and government departments?

This is the sort of work that the NAS ought to be doing rather than silly things like cake sales and releasing helium balloons into the air.

There's also a choice of having a diagnosis under ICD-10 or DSM-5. Which one is offered depends on which organisation or NHS trust you pick.

I have a private diagnosis of AS under ICD-10.

You need to firstly ask yourself why you are getting a autism diagnosis. If you are seeking a diagnosis because you have been struggling to acquire employment, struggling to maintaining meaningful employment, issues with independent living skills or issues maintain relationships and you require extra support & financial assistance like benefits, educational support or social intervention than I recommend you contact your local authority to see if they accept private autism diagnosis as evidence of autism spectrum diagnosis as some local authority do not accept them. 

some local authority will accept private diagnosis as long as the diagnosis was overseen by a NHS professional.

private diagnosis can be fairly expensive however they do have some advantages but this depends on the organisation and medical professional carrying out the autism assessment. Private assessments are usually carried out by a professional who is qualified to not only recognise and diagnose autism but a range of neurological developmental disorders and learning disabilities. This means they are more likely to recognise and diagnosis other co occurring disorder and disabilities. This can be a double edge sword as some private organisations and professionals can charge additional fees to diagnosis multiple disorders and disabilities. 

private route is typically quicker ranging from anything where going through the typical NHS route can take anywhere between 6 months and 2 years depending on where you live. 

it’s very common for individuals going through NHS route to get lost in the mental health trusts administration system or referral being closed without informing you. It’s also very common for the NHS route for patients Referrals to not being accepted and for doctors surgery’s failing to inform patients or look into alternative organisations to carry out the assessment.

for some people like myself initially went through the private route to find the my local authority do not accept private diagnosis had to wait from the age of sixteen to twenty two to be diagnosed through the NHS route. This meant I wasn’t entitled to extra support at college at age 16 as my local authority fund extra support and do not accept private diagnosis. 

another issues with the NHS route is that the system is extremely flawed. The NHS route only employs professionals who can only diagnose a single neurological developmental disorder such as autism, so for example if the the professional recognises that you may have ADHD and autism they will diagnosis you with autism and refer back to your General practitioner to go through the same system to be diagnosis with ADHD which can take another two years to be assessed. I am saying this from experience.

be cautious that you may pay private but get the same service that you would through the NHS route potential paying to be pushed up the waiting list. Please avoid these organisations that are run by National mental health trust that also provide private assessment because it’s deceitful and poor value for money.

Some larger companies and businesses have an obligation and the means to pay for a private assessments but yet again this can be career damaging depending on the workplace culture. 

in this current situation we are in with COVID assessments are being carried out over video calls which I highly recommend avoiding as you the professional cannot assess your properly and fully asses how the condition affects to be written in the diagnosis statement which will affect your ability to claim benefits at a later date. 

Hi, Sam:

I had my assessment completed privately and it cost me $1,000 Canadian (565 pounds). Thankfully 2/3 of the cost was covered through my employment benefits plan.

I was grateful not to have to wait at all and I had my diagnosis  within one month of beginning the assessment process (four weekly appointments). My understanding as I have read posts on this site is that the situation it is usually quite different in the UK. I imagine a two or even three year wait with NHS could be frustrating.

If anyone is interested in obtaining the contact information for the specialist psychologist who diagnosed me, please feel free to send me a direct message. The Canadian psychologist has a Ph.D. and specializes in diagnosing adults. She works 150 km away from where I live so she conducted my entire assessment using Zoom video link. She also offered me telephone appointments, had I preferred. 

Elizabeth

I went private for my assessment - picked a non-profit (checked out the registrations on the British Psychological Society website). Work picked up the tab. It was pretty speedy (aside from the delay due to the first covid lockdown). I had 3 sessions of aftercare included. I can get more if I self-fund, although I find there's enough resources on the internet to get the information I need. Occasionally I need to bounce ideas off my psychologist so I do check in with her. 

I also paid privately for some 121 counselling to help me work it through. 

For wait times NHS digital should have the information you need (it's a bit of a slog to find what you're looking for, but official statistics are more for transparency - as opposed to being designed with the service user in mind)

https://digital.nhs.uk/data-and-information/publications/statistical/autism-statistics/quarter-2-july-to-september-2020-21

here is the plan  and notes I used. I went vis NHS simply because i couldnt afford the private path.

Make a list of reasons why u think u are autistic.

include relatives in your family who are autistic or adhd or called weird/different

and a list of occasions when u have been called weird, autistic, different

the list should be electronic ie so you can email it to anyone who wants it.

I went private for my autism diagnosis last year it cost me £1200 dr Kate Baldry I saw.

I can't help you with wait times. My area doesn't diagnose adults on NHS. If you are looking for support then private may not be the best route as many services will only accept an NHS diagnoses.