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(28 Posts)
lazysaurusrex Mon 24-Jul-17 14:11:56

Not really AIBU but more what would you do. I posted over at mental health and got no replies. I'm part way through the process of being referred for an assessment for ADHD and I'm getting discouraged. Taking time off work for doctors appointments that ultimately go no where, having to bring my partner in because no one will listen to me and generally trying to keep myself together are really getting to me. So what would you do, keep pushing and trying to get a diagnosis as an adult or give up and keep treating symptoms as best you can?

JeffJarrett Mon 24-Jul-17 14:19:14

My DS has ADHD & ASD diagnoses which took years to get, he's now at a Special School and on medication which massively helps his concentration and moods/impulse control.

Everything is a massive battle these days with the state of the NHS (I work in it so know all too well), you have to push and really assert yourself, tell them about your worst days and never downplay anything. Stick with it and good luck. flowers

Pengggwn Mon 24-Jul-17 14:19:35

Message withdrawn at poster's request.

lazysaurusrex Mon 24-Jul-17 14:30:57

Sorry this us so long but this is the gist of it:
You watch TV and hear jokes and everyone talks about young people procrastinating or being easily distracted, you don't know what's going on in other peoples head so you don't know if what's going on in yours is unusual.

I've had a dyspraxia diagnosis since I was 14. My hand eye co-ordination is problem. I walk into alot of things, weave when I walk down the street and in general have to try really hard not to break things, walk into the road, get safely down stairs etc.

When I was 15 years old I got half an aspergers syndrome diagnosis. I grew up in an abusive household (Parents had problems with drug, alcohol, threatened us with knives etc.) and my mother insisted in going into every session with me. She would be nice infront of the doctor but when we got out she would talk about how she was going to have me put on medication to shut me up.

I've always hated the thought of something else controlling me and as someone who had been bullyed at school and home throughout my life I hated that I didn't feel I fitted anywhere. I had a friend at school with aspergers syndrome and she lent me some books on it. I used them to fake the "normal" answers to the questions the doctor asked me and when I turned 16 he said that he would no longer deal with me as he only delt with children up to 16 and that since I would be going to college soon I would be OK. I got a diagnosis of mild aspergers syndrome and tried to deal with things as best I could, any issues after that I assumed were probably related to that.

The thing is that I've been working round problems as and when they appear. Most of the time I just kind of brace myself, dig my nails into my palms or bite myself and try to ignore the pressure and the noise in my head or the way my skin feel wrong but and as I'm getting older it's just getting harder to deal with. My focus has never been great, I lose days to stupid stuff that I can't stop focusing on, stare at a spot and can't drag my gaze away or get manic and start 100 different projects at once etc. Sleep is a problem for me I just can't stop thinking or my skin won't stop itching and feeling wrong and I can feel my toes and my eyelids etc.

All these things are getting to be alot you know.

I went to the doctors and after listing the stuff I've been dealing with I'm currently being tested for things. My local authority doesn't fund testing or treatment for ADHD, dyspraxia or any ASD but after seeing a mental health nurse and a GP they're applying for funding to get me checked.

It's frustrating for me though because I keep being asked why I waited until now, why I've never mentioned any symptoms. My medical records have nothing on them something has happened and they have nothing in my files.

Every time I see a new doctor they assure me that I'm just having a panic attack I couldn't possibly be like this all the time. I have had to drag my partner with me to the doctors because when I'm alone they just won't listen. Its effecting my work, sleep, I have always had anxiety but it feels like everything is just getting harder.

JagerPlease Mon 24-Jul-17 14:38:31

I would keep pushing - ADHD in adults can be effectively medicated with atomoxetine

blankface Mon 24-Jul-17 14:46:39

It's often a long process, particularly if you want an NHS dx.

Hang in there, you're in the system and it's progressing at it's invariably slow pace.

Keep pushing and try to get a diagnosis as an adult, it seems to take forever, but it's worth it in the end.

Do you have any supporting evidence, even old school reports with comments like "If only Lazysaurusrex would sit still and pay attention" or 'Needs to improve concentration'. Are you long out of education, could any past teachers help?
What about a parent or family member, could they recount your early years and notice when your behaviour was different to your peers?

Stick with the diagnosis, you never know how it may help to obtain 'reasonable adjustments' in the workplace or during studying. It could be the difference between you being successful as you have a support structure in place, or packing it in now and never knowing or receiving any support.

Anon8604 Mon 24-Jul-17 15:30:46

Treatment for ADHD can be very effective so I would say keep pushing to get the assessment. It's awful that it's so difficult for you to get the assessment you need, but if you do have ADHD and you're able to access the right treatment then it will be worth it in the end.

PersianCatLady Mon 24-Jul-17 16:01:19

I don't understand why the process is taking so long for you.

Once your GP refers you to the psychiatrist for a full psychiatric assessment they will either diagnose you with ADHD or they won't.

Is it that you have had the assessment and you didn't agree with the outcome or you haven't had the assessment yet??

PersianCatLady Mon 24-Jul-17 16:03:49

Surely if you had ADHD then it would have been picked up when you were diagnosed with ASD??

Anon8604 Mon 24-Jul-17 16:29:34

Not to speak for the OP, but I think the issue is possibly that the OP says her local authority won't fund assessments for ADHD or ASD, so it's likely that she is having to fight to get assessed at all.

Wonder if local authorities are allowed to just say they're not funding assessments for physical health problems too, or if it's only issues like ADHD that are being treated like this.

PersianCatLady Mon 24-Jul-17 16:34:49

* the OP says her local authority won't fund assessments for ADHD or ASD*
That is the bit that I am not understanding.

You can be diagnosed with adult ADHD at a standard psychiatric evaluation appointment.

It sounds to me like she is being fobbed off.

lazysaurusrex Mon 24-Jul-17 17:02:14

The mental health nurse I saw said that the local authority won't fund the assessment. My GP has to write in to a central department to get funding for me. Before she can do this they have to check with neurology and an mri. Then a psycologist then the adhd assessment if funding is granted.

jajabonks Mon 24-Jul-17 17:08:08

Keep going I know it's tough but if you get the correct diagnosis it could make the world of difference to your life. Took over 2 years to diagnose my son and adhd can come with a range if other difficulties. And a lot of "symptoms " can over lap. Write everything down so you don't forget and also add to the list whenever you think of something else. Keep all appt letters etc in a file so you can keep track of where you're up to and who you've seen and what's next x

PersianCatLady Mon 24-Jul-17 17:13:34

Before she can do this they have to check with neurology and an mri. Then a psycologist then the adhd assessment if funding is granted
I am sorry but I have never heard of this before.

I got diagnosed with adult ADHD in 2008 and I have helped other people to get diagnosed and none of them have ever had an MRI or a neurology appointment.

Either your GP doesn't know what they are talking about or they are fobbing you off.

lazysaurusrex Mon 24-Jul-17 17:25:35

I think that if your local authority funds adhd, asd, dyspraxia treatment and assessment for adults they can just send you to the psycologist but when they have to write off for funding they need to prove they've checked for anything physical. They've already sent me for blood tests which showed nothing.

ShastaBeast Mon 24-Jul-17 17:31:40

DH was diagnosed fairly recently, we went private which was absolutely worth it, although not helpful if you can't afford the best part of £1k. Still had to push to get medication but he's now cared for by a psychiatrist at a local hospital, on the mental health ward which is ridiculous. DD has it which prompted the diagnosis. She was diagnosed on the NHS and it's been a nightmare so we've gone private. Sadly funding is not available and you will be discouraged from seeking diagnosis. You need to keep pushing quite aggressively and get your MP to help if you still get no where. DH isn't finding meds that helpful and apparently having sub threshold autism can make meds less effective for him. He forgets to take them and to book appointments to get higher doses.

number1wang Mon 24-Jul-17 17:37:39

OP it's hard when you don't think people are listening to you.
You write very clearly. You could print out something like your original post here, something that sums up what has happened to you along the way, and ask for it to go in your file and to be included in all referrals that are made to other specialists like the psychologist.

number1wang Mon 24-Jul-17 17:38:28

And yes in your situation I would push on for a diagnosis.

PersianCatLady Mon 24-Jul-17 17:44:35

It is a psychiatrist that diagnoses you, not a psychologist.

I am sorry to say but the information that the OP has been given here is so inaccurate that I am wondering if she is being misled or has misunderstood what she has been told.

emmab16 Mon 24-Jul-17 17:46:13


I was diagnosed at age 40 (last year) and medication has helped a lot (concerta)

I'm amazed that you need an MR I etc here in Nottingham it is referral by GP to psychiatrist who if it's a straightforward diagnosis can diagnose the adhd themselves.

Hope you get some progress x

ShastaBeast Mon 24-Jul-17 17:53:44

DD was diagnosed by a nurse. Prior to that a clinical psychologist fucked up an assessment. So not always a psychiatrist.

lazysaurusrex Mon 24-Jul-17 18:11:40

Thank you all for the advice. I am trying to list symptoms but it's difficult when they've always been there. For example I was always told dyspraxia was just a hand eye co ordination thing and it was only after reading peoples experiences on mumsnet that I realised some of the other things that I was just told were me being weird were part of it like over sensitivity to light and sound, getting mixed up with time, the word mess way i speak etc.

dnwig Mon 24-Jul-17 18:24:29

In my experience CAMHS nurses do sometimes make the diagnosis.

But, at least in our area, it's not something that an adult mental health nurse would do.

Exception to this, I suppose, might be a nurse trained to do so as working in a specialist service (not available in our area, but may be elsewhere).

PersianCatLady Mon 24-Jul-17 18:29:36

I'm amazed that you need an MR I etc here in Nottingham it is referral by GP to psychiatrist who if it's a straightforward diagnosis can diagnose the adhd themselves
That is exactly how it was for me and for at least 8 other people who I know have been diagnosed.

I do not know of anybody being diagnosed in any other way.

One reason for the MRI could be that the OP's GP is trying to rule out all other causes as they do not think that it is likely to be ADHD.

lazysaurusrex Mon 24-Jul-17 19:29:28

Do you have any advice PersianCatLady?

I don't live in a great area, mental health is definatly underfunded. Other services are not.
So my GP is able to refer me for physical scans. I think they are keen to rule out the physical because of the dyspraxia stuff tbh, the messed up speach, light sensitivity, getting stuck staring at a point and that jingly, shaky feeling in your brain when you need something but you don't know what and everything's just wrong and if you don't get up and move right now you're going to scream and scream.

If I get assessed and it's not ADHD then I will go from there, I just want to be able to cope better with it all.

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