4 year waiting list for ADHD assessment

[ADHDPI]

I am 99.9% sure I have ADHD (primarily inattentive). My GP agrees it is likely but cannot diagnose or treat. My problem is I've just been put on a waiting list and have been told I'm likely to have to wait 3-4 years for an assessment. I feel like it is ruining my life. I know there are meds out there which could help and I'm frustrated that I can't access them. I do not have the money for a private assessment (in my overdraft month on month) so that's not an option. I self medicate with extreme coffee drinking and nicotine which helps temporarily. I just don't know what to do anymore. Can anyone help? Advise on coping mechanisms? I'm struggling.

ADHD360 do a reduced cost diagnostic package for financial difficulties. Then you’re passed back to GP for shared care. It’s still a lot, about £400, but a lot less than other places and very short waiting list, a matter of weeks not months.

I’m sorry I didn’t mean to cause alarm.

Plenty of studies online from reputable sources show this to be the case. With neurodivergence there are often co-occurring conditions, addiction, poor mental health and lack of real life support makes for rather stark outcomes. Hence why it’s so important that people are diagnosed early in order that they can push for the accommodations that are necessary for them to function.

I'm not looking to jump the queue! I'm doing the opposite and asking for advice re how to cope in the meantime. I'm a lone parent with not a penny to my name, and don't have anything worth selling, not to that'll earn me £100s. I just want advice on coping mechanisms and possibly some positive outcomes from others in a similar position so I can stop feeling so helpless.

Get your GP to refer you to Psych UK as per the link above. I was diagnosed last year with them and am currently awaiting medication. I'm 50 and had procrastinated over this for 15 years. I was on the NHS list for 3 years before asking to go with Psych UK and stood to wait another 7 years before being seen.

Agreed. The NHS has been in crisis during every tory government since Labour created it.

My DD needs an ASD & ADHD assessment, I plan to go private but not sure who results are accepted from, so feel your pain OP.

If you’re in employment and can argue that your suspected ADHD affects your ability to do your job, you can apply for an Access to Work grant. I did this recently and was awarded with a grant for coaching sessions with an ADHD specialist. It’s work focused, but I’ve found that some of the strategies are also applicable outside of work.

You don’t need a diagnosis to qualify for Access to Work. As long as you can argue that you are affected in some way (e.g. your symptoms cause you a lot of stress), you can apply. In some ways it’s better than a diagnosis, as it’s real practical help.

Also, not sure if we are allowed to mention other sites here, but the ADHDwomen community on Reddit is worth having a look at.

It clearly states on the page you’ve linked to that Individual Funding Requests only apply “if the service is not offered – it does not apply if there is a service with a long waitlist.”

However there is lots of useful information elsewhere on the ADHD UK website including support groups which should be able to help you -

adhduk.co.uk/support/

Additionally ask your GP to refer you to their Social Prescribing service. A Social Prescriber will listen to you and work with you to find strategies to help whilst you’re waiting for the assessment.

This is good advice and is also something a Social Prescribing Link Worker will help you do.

Sorry, meant CrimsonAlligator’s post re the Access to Work grant!

We're in the North West and DH only had to wait 12 months for his NHS referral. I know waiting lists vary region to region but do make sure you're on it as you may be offered an appointment sooner rather than later

WTF? I have both! Where is this information from?

Psychiatry uk waiting list about 12 months long and the waiting list for medications is 6 months from diagnosis so not great either.

@SpaceRaiders who did you go through and where did you get meds because I’m fed up of waiting for psychiatry uk to prescribe them

My friends daughter was diagnosed very quickly ( within a few months) by GP / NHS referral to psychiatry UK.
Is it worth specifically asking your GP to refer you to them?

What symptoms do you need help with and what have you tried? There’s evidence for caffeine being effective but I guess it depends on how much you are drinking?

@Onnabugeisha Google life expectancy ADHD lots of recent US and U.K. studies.

@Notyetacatlady
Like i said I’ve heard good things about Mypace. Above all it’s affordable, at £360 for the diagnosis. Prescriptions appointments are like £140 then the cost of medication. Friend had her assessment with them and she was pleased, it took less than 5 weeks wait for the appointment. My brother is due to have his assessment with them too.

Hey OP, I'm sorry you have some unsympathetic and ableist responses in your request for help. I'm ADHD diagnosed, awaiting ASD assessment and only have one pooch dependent on me so I cannot imagine how difficult you are finding things right now.

You've had some amazing practical suggestions already re the 'right to choose' option and selecting PsychiatryUK, I think they're still the quickest via NHS means. And the access to work grant to help with accommodations is amazing.

Alongside self medication with coffee (yay!), exercise (if you're able and can manage even just a few mins a day) is proven to be one of the most effective non medication tools to help manage some of our inattentive adhd symptoms. And it doesn't have to be boring exercise, dance around the house, silly movements, jumping up and down, it all counts to get the dopamine levels going.

ADHD Adult UK podcast by Dr James Brown and Dr Alex Connell is an amazing resource, and they've mercifully kept most eps around the 30 min mark.

Its really tough once you're aware / have been diagnosed. The knowledge and understanding can bring everything to the fore and the symptoms seem to be more noticeable, this is totally normal.

Formal diagnosis is required for access to medication and some work accommodations if your employer isn't progressive, but self diagnosis is completely valid in regards to understanding yourself and letting your family and friends know what you need from them so they can help you, and help you help yourself.

1. Factor in lots of movement breaks at work if you can.
2. Use lots of lists and reminders.
3. Don't let folk rush you, take your time if you feel flustered. Tell them you need a moment.
4. Say no to anything that doesn't light you up or is not a neccessity - it's not worth your energy, we use it differently. 5. Build in quieter days around busier days to help restore you. I know you have a child so whatever a minimal day looks like for you, don't just keep piling busy days on top of each other.
5. Don't be upset or guilty about tidying, cleaning or super healthy meals if you're not feeling it. Mess is morally neutral and you can deal with it when you have the random bursts of energy. Food is also morally neutral and eating something is better than eating nothing. 7. Hydrate!! We're terrible at this and it's so important for minimising brain fog and helping with energy.
6. You don't have to tell work even when you're formally diagnosed, although it's a protected disability. If you feel your employer will be sympathetic pre diagnosis I would tell them. Sympathetic employers can have a huge impact on our lives, and should be utilised.

Sending love!

I really don't think that's helpful and may terrify some parents.

Most people with ADHD have a normal life expectancy as many grow out of it.

Please don't panic. That post oversimplified a very complex issue.

It wasn’t my intention to scare anyone. The studies and stats are readily accessible for anyone who wishes to read them.

ADHD is a neurodevelopmental life long condition. Saying you grow out of it is, like saying you grow out of being left brained dominant, it’s simply ludicrous. I hear it’s the kind of information that’s being peddled by the NHS in ADHD parent information sessions.

You see some improvement in some adults as they get better at managing the symptoms but that is all.

Suffering from poor mental health is and can be life limiting. I didn’t think that was such a controversial comment to make.

Psychiatry UK is a way quicker route

Hi there. While you are waiting for an assessment you could also look at ADDITUDE magazine on line. They have excellent tutorials and articles on coping with the various symptoms of ADD and ADHD ( and it’s free ). Just to warn you that medication doesn’t always work and can have side effects so getting strategies in place might help you

People do not "grow out" of ADHD
www.independent.co.uk/news/science/people-with-adhd-do-not-grow-out-of-the-disorder-new-research-suggests-10482473.html