Published on 12, July, 2020
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"
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.
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,
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.