Delays in getting a diagnosis in the UK

Post Reply New Topic

Quick question about delays in getting a diagnosis in the UK.

I live in Croydon, just to the south of London. I originally spoke to my GP on 6th November 2017 about getting a formal diagnosis and she agreed to refer me on.

We quickly got a letter back from The Maudsley stating that I had to have individual funding from Croydon Clinical Commissioning Group (CCG) before they could accept me, so my GP made an application to my local CCG.

Over two months later we got a response back from Croydon CCG stating that the application for funding had been denied and that I would have to be assessed by the Croydon Assessment & Liaison services before they would consider any funding application. This is the team that (according to their webpage) provide advice on the best treatment and care options available to people who have moderate to severe mental illness, such as anxiety, depression or personality disorder.

My GP theretofore put in an application to Croydon Assessment & Liaison Services, but two months later we have still heard nothing back from them.

There doesn't appear to be any information or instructions for GP's in making a referral for ASD diagnosis for adults in my area.

Has anyone else experienced this sort of experience of delay and being passed from one service to another whilst trying to get an official diagnosis?

Can you ask for a referral to the Lorna wing centre in Bromley, Kent. It shouldn't be too far from you. They specialise in female autism. They are excellent. We went there privately, the wait took only 2 months from sending in paper work to diagnosis day. All the assessment was done in one very long day. But I believe you can get your NHS trust to refer you on there too.

ETA: people I know who wait with children on the NHS referral process within local councils report waiting for assessment for 18+ months with 2 years being the norm. But that is for children. Not sure about adults.

There is a National Autistic Society Croydon branch, they may be able to give you more advice about local services:

http://www.autism.org.uk/directory/search-results/pg=1~sid=1744065~s=1/resources/12588.aspx

I am currently in the preparing to see GP stage- I have made copious lists and notes, and found out where the local assessment centre is so that I can inform them when I go if they don't know anything. I'm still feeling very nervous about booking the appointment though, so I'm kind of procrastinating.

edit: as I was writing this the post above appeared. Good idea.

The Lorna wing centre is the diagnostic branch of the national autistic society. I recommend them wholeheartedly to everyone, they take referrals from all over the world. They were so professional and helpful. I am not sure how easy it is to get the gp to refer you there and it might be a treck from where you live but it is done in a (long) day and they are specialists in seeing autism in females and in more complex cases.

Thank you for all your comments, I'm going to take all the advice.

I'll start by contacting the local NAS to see what advice they can give. I should then have a follow up appointment with my GP early in May and can raise the possibility of alternatives such as the Lorna Wing Centre.

I just called them up from Kent (not too far from Bromley) and they said my GP has to send a fees letter to the NHS to get my assessment done by them.

They also added that a private funded assessment costs from £1,800 to £2,900 so I'd advise getting onto your GP if like me you don't have the funds. If the NHS don't agree to the fees I'm guessing it would be the regular 18 months wait

Is there any specific reason you feel the need to get diagnosed? There isn't really any help for adults.

I've been trying to get a diagnosis since before December 2017. My GP had to refer me to the local mental health services first before I can be passed on to the adult diagnosis services. I chased it with the GP a few weeks ago. The current estimated waiting time for the first referral is 6 months to a year for mental health services in my area - UK Midlands. Then I was advised it would likely be another year or so before the local diagnosis service could see me. So, it seems to be fairly consistent with the childhood diagnosis estimate of about 2 years.

Good luck with everything and I hope it goes quicker for you!

I'm in Gloucestershire and it took 14 months to be assessed, then a further month to get the result back.

I want an official diagnosis because I want it in my medical records in case I end up in hospital or a nursing home. I've only been in hospital once but it was very distressing, and a lot of that was because I wasn't given enough time to process what was being said, staff kept saying one thing and then doing another, and I spent the whole time pretty much overwhelmed and confused.

I also want to be officially recognised and available for any research going on, to give my opinion more weight as an autism advocate in the schools where I work.

A bit delayed - but yes, you have to have exhausted the local option, and Croydon Borough / CCG do have a local AS diagnostic service - which I think is located at the Bethlem, as is the local ADHD DX service. It is potentially-confusing in that part of London as local services for Croydon, Lambeth, Lewisham Southwark can be provided at the Bethlem and Maudsley just like National Services. Therefore the Maudsley DX option will have been disregarded by the CCG (formerly the PCT) because you need to get Jeanette Wallace House to see you. If it takes a while for this to be done, take yourself down the Mayday and go loopy, then you'll be seen. Then you can be seen by Croydon's psych service for onward referral. However, I find it surprising, as in neighbouring Lewisham referrals can go straight to the diagnostic service.

I can understand that I was on a ward for about three months full of other people it was really distressing.

I live in Cheshire and was referred for a diagnosis by my local NHS Mental Heath team in December 2017.

I was assessed and diagnosed on 23 March 2018 by Cheshire and Wirral Partnership NHS Trust.

There were no questions about funding- it just happened.

But, I had been sectioned in January and spent 3 weeks in hospital so not sure if that meant a quicker referral.

Last edited by MattInMacc on 03 May 2018, 9:33 am, edited 1 time in total.

Oh, and there is no help or support after your diagnosis, none!

I was not aware of having ASC before December and so it was all a bit of a shock and I am struggling to come to terms with it.

its hard enough to get a child diagnosed unless they have developmental issues otherwise its like "tough".... which is stupid seeing as being diagnosed helps in a big way regardless of development problems. Adult diagnosis is somewhat pointless unless it impacts your life and is detrimental. if like me you have aspergers but can live independently then sadly its nothing more than a label.

This is true. It took me two years of pointless wasted breath before I decided to go and get assessed privately for my daughter. Looking back those two years were by far the hardest in this whole saga as I felt I was fighting all out all the time to just keep my head above water. Diagnostic clarity and everything that has come from it has really lightened the load considerably. I planned to go back and launch a complaint against the unhelpful gp surgery but I then decided I should focus on what is important instead. I do despise them for not hearing me though. And really after being told over and over and over that it is nothing by doctors and teachers so many parents must just start doubting themselves and might also not have the 3000 gbp to fork out for private diagnosis.