Really upset about assessment decision.

So several months after see my GP and filling out all the paper work I finally get a response. I'm told that I have been accepted for a referral, but this will be "at least 20 months". I think I would have gone insane before then. Then Covid hits, so 20 months for a face to face is more like 3 years. Then I hear about Healios on here. So I ask my GP to be referred there instead. Again, fill out the forms! Then yesterday my GP told me that Berkshire NHS don't refer adults to the service!

I'm now 45, this whole thing is hard enough as it is, and like a lot of people on here, I have been pushed around the system for 20 years. Told I have anxiety, let's treat that, you have depression, let's treat treat. You finally end up with something that feels real and I can relate to and I have to wait 3 years to even find out if it's true this time.

I'm so upset, I really don't know what to do. Not only does the decision feel like age discrimination, but it makes me feel so unimportant in the world it's hard not to think "what's the point" 

  • Hi there!  I looked at private diagnosis through Psicon in Kent and was quoted £850 in 2019 with a 4 week wait.  I eventually went for NHS diagnosis in the end which was supposed to be through SLAM but the service was then transferred over to Psicon anyway to clear the back log.  I was just diagnosed yesterday. 

  • Yes on the waiting list now.

  • Hi Plastic..can i kindly ask you youre interests and what your career is?

    Reasons for asking, is everytime practically i read your posts...you seem to have a very accurate assessment on matters and are very astute..

    Thats not fake flattery but totally true..

  • Do you have a diagnosis?...is this what youre on the waiting list for?

  • Hi, thanks. I really can’t say for sure. Our surgery has an on-line referral request form. I’d sent one of them with my request for Healios. That was rejected so I found out about some other places who accept NHS referrals. One of them sent me a “Patients Choice” form (who knew thar exists) so I sent a request for the new service, but than got referred to Healios. All of that might be a coincidence. It could be that the surgery had it’s monthly meeting and they changed their mind.

  • Hi The Riddler, I am pleased for you. Just out of interest, what do you think made your GP do a U turn?

  • Well! For some reason and totally out of the blue my GP has made a U-turn and I have received a confirmation letter to say I have been referred to Healios after all. I’m actually quite looking forward to it at the moment. Thanks to everyone for their input.

  • Thanks I’ll look into this.

  • The people I was referred to were Hampshire & Surrey Psychology. In fact my assessment was done just outside Reading and Basingstoke.

    www.hampshirepsychology.co.uk/

    My timeline was referred to a Private Psychiatrist in Southampton by my GP in February 2019. Saw the Psychiatrist in May. Got then referred to H&SP for full assessment with initial consultation in July (referral got lost!). Assessment and more consultations in August and final diagnosis and report early September.

    Psychiatrist consultation was for 1:45hr and cost £350. Initial consultation with H&SP cost £275 and full assessment was £1750.

    I should point out, that when I saw my GP, I didn't even suggest the possibility of Aspergers (my son was diagnosed with it). But my anxiety was getting worse as I got older (should get less anxious as you get older). It was the Psychiatrist who read all the notes I had written, who said he was 95% sure that I too had Aspergers and suggested the full assessment - the main reason being that I institutions eg my workplace  would need the full assessment to make my diagnosis official.

    I now have that diagnosis on my medical records and a Autism alert card from Hampshire Autism- they needed my reports to issue me with the alert card.

    So the whole process for me started in December 2018 with my GP visit. By February 2019, my GP had given up on the NHS route and I said I would like to go private. This took 8 months but included 12 weeks of not hearing anything because of the missing referral (I should have chased it earlier).

  • I'm in North London - I was diagnosed at a place in Harrow - can't remember the name of the bloke but it was 10 years ago.    My company used Cygna health insurance.

    Have a dig about on Google to see who the best person is right now in your area - and make sure they can provide what you want.      I'm sure when you talk to a couple of psychologists they will point you at a colleague who will provide what you need.      Check with the insurer to make sure the person you find is on their approved list of consultants and if all is good, you should be able to arrange it..

    Good luck.  

  • Where about in the country are you. Maybe I could use the same route. I’m hoping my partners company insurance will cover it as I’m self-employed.

  • Sad, but true. In reality every public sector operation runs in much the same way. The problem is that when privatisation happened everyone just sat around crying about. Rather than get in business managers from the private sector, with proper P&L knowledge, they just added the responsibility of budgets to the operational staff who have no experience what so ever. And that’s how it stayed.

  • I have a lot of interaction with the NHS and I can see that it's run by the consultants, for the consultants - and everyone else are just ants doing all the boring work.

    The 'multi-disciplinary team' usually means barely-qualified nurses and registrars doing all the written tests with you and then filling in loads of paperwork for the consultant to briefly glance at and then sign.      It's dumbed down with millions of tick-boxes so the nurses can be kept ignorant and frustrated and on low pay grades.      People are sent around in pointless loops for no reason.    The consultant on the megabucks doesn't get involved with all that dull paperwork - they just sign stuff off and get back to their golf game..

    It could sooooo easily be so much better and faster - but that's not the NHS / UNITE's game.....   A long waiting list is job security and a funding lever,

  • When you're paying, you are the customer - 12 months is a joke.      Do some research into the best people in your area - maybe a clinical psychologist - and speak to their team/secretary directly to see if they can do this for you (or they might suggest someone) - it's then just a case of getting your gp to write the referral and you're in - mine was about two weeks from seeing the gp to sitting in front of the top bloke in the country.   It was paid by my company insurance.

    My assessment was done like a long conversation where (I guess) he was going through all the tests verbally with me and just generally chatting.     I guess he can spot us a mile away.       The report turned up a week or so later.

    Since my diagnosis (aged 42), I can spot aspies too - dead easy - and I suspect all my close friends are undiagnosed aspies too - which makes sense - I find NTs to be very hard work to interact with..

  • Hi Riddler, I understand your frustration. In a nut shell (my opinion only) all mental health services have been underfunded for decades in comparison to physical health services. It doesn't mean that the need wasn't there - just hidden or ignored. Now with changes in society with more people being open about mental health and seeking help, these services are still trying to 'catch up' - this, coupled with GPs now holding the purse strings for funding services, mental health is still the poor relation. This is where the NAS need to come in to challenge this politically, only then will there true equality. Good luck Thumbsup

  • The frustration with the “funding” issue is how much has it cost the NHS In councillors, therapist, and pointless CBT sessions, for me to get to this point. If they invested in proper diagnosis at the out set, it would actually save them money. The truth is the service is so disjointed and poorly managed it haemorrhages money like a leaking tap.

  • Thanks, it’s reassuring you were seen a lot quicker. I’m not sure there is anywhere in the southeast that will do a private assessment for £750, but I’d be prepared to drive to Timbuktu at this moment in time.

  • Hi, I’ve looked into private, and as you suggested they quoted up to £2000, but also said the waiting list was 12 months. Which seemed an age at the time. I am very anxiety driven, so once I’ve decided to do something, need it done yesterday! 

    I hear what you say about “double edge sword”, but I want to know so I can move on with my life. I’m more scared they’ll say, what are you talking about? And I’ll be back to square 1.

  • Just my perspective of it - it's a massively underfunded service. That usually requires a multidisciplinary team so there is a lot of cost and abckground organisation that has to form part of it. Tie that together with it being woefully underfunded and a huge waiting list, it quickly mounts up. My wait time was 3 years, ultimately I went private with an NHS psychiatry team.

    Now in the UK I absolutely blame government legislation in part because of the massive cuts they do all round, but many doctors aren't specialists in neurological conditions, it's not their specialism or expertise to, so they have to refer, and then the people who deal with the referrals are usually massively underfunded or only look at private referrals. On top of this, children and adults are diagnosed differently as they can present very differently, so it's not an age choice per se, it's getting the right expertise for the right demographic.

    It's a shame really. But that's just my slant.

    Irrespective it's not good enough, and is also why Autism.org and many others are trying to get this to turn around.

  • You are important. The NHS feels like this is a big enough issue to put their funds into it and you will get to the top of the list. I think they give out those figures to help manage expectations. I was told 3 years but seen within 18 months.

    As Plastic has mentioned an NHS assessment is only one option. I'm part of a FB group for a local city and there are a number of adults on there who have recently been accessed for only £750 and this has been at a world-class facility. If waiting is going to be very difficult for you could you afford this out of your saving? If you don't have that amount of cash available could you get a credit card or loan and pay this off in small chunks?