The impact of living with undiagnosed ADHD can be significant, but adults and children in the UK are sometimes having to wait years for an initial ADHD assessment.

• Have you been diagnosed with ADHD?
• Are you or your child on a waiting list for ADHD diagnosis or treatment?
• Or are you a healthcare professional that works with people with ADHD?

Please share your experiences of assessment and diagnosis with us. You'll need to be a hub member to comment below, it's quick, easy and free to do. You can sign up here.

You can read more about the issues related to ADHD diagnosis in this blog: Long waits for ADHD diagnosis and treatment are a patient safety issue

My daughter in her last year at Uni was finally diagnosed with ADHD. We were obliged to go private ( reputable clinic) and it was incredibly expensive. Had she stayed on the NHS waiting list, she was told it would be a 3 year wait. Hopeless if you are struggling and Uni won't give any accommodations unless you have a diagnosis. Then we had the trauma of trying to get the medication correct and even obtaining it was a full-time job- not to mention completely exorbitant-£150-200. That was a complete shock to the system. We are hoping to be accepted onto shared care by her GP but it's not a given. I resent having to go for the private diagnosis but we had no choice - waiting 3 years would be too late for her.

Getting the diagnosis has clarified many things. As a teacher, my only experience of teenagers with ADHD was of boys and they certainly presented differently to my daughter. I think there is much progress to be made in the public's understanding of ADHD and what it is. Already there is a "backlash" in the media about everyone having ADHD. Very annoying to hear but ignorance is bliss for many.

Thanks so much for sharing you and your daughter's experience—hearing personal perspectives really helps shape our understanding of the issue.

I'm glad your daughter was finally able to get the support she needed, and I'm sorry that she wasn't able to access NHS assessment. Three years is a shockingly long time to wait! Wow, those costs are significant, I hope she's able to access shared care soon. I agree that there's still such a lack of awareness about how ADHD affects women and girls, hopefully we'll see greater awareness as more women with ADHD share their experiences.

I am waiting for an assessment for my son, we always knew he was a bit of handful and had other bits going on, ticks/anxiety, no concentration, but he got on with school/home life.  His behavior was discussed with school all through his education, and in the last year he had started to be seen as the disruptive teen, getting pulled up for impulsive behavior etc but the school can not support a child without a diagnosis, so we are now on a very long waiting list, no idea how long and all private options have closed there lists.  My son is now mid GCSE's and I wish I had asked for support earlier. 

There is very much still a stigma around labelling children, but he has been labelled as disruptive anyway, this is not a life limiting or painful disease but it is a neurodiversity that we should not have ignored and I question if the assessment could be done by school (they have provided an observations letter)  rather than the long waits for community pediatricians? 

@StefanieThanks so much for sharing your experience, and I'm sorry to hear your son is now facing a long waiting list. Have you investigated a referral from your GP using 'right to choose'? I'm not entirely sure how the process works, but this info from ADHD Aware might help https://adhdaware.org.uk/what-is-adhd/getting-nhs-diagnosis/right-to-choose/

You make a really important point about the role of schools, it seems like they would be well placed to help students in your son's position. However, I know schools are also facing huge funding issues and many schools are having to reduce interventions like bringing educational psychologist services. I don't know how much the Government's SEND Improvement Plan will make a difference to accessing ADHD assessment.

My now 33 yo daughter has just joined the NHS waiting list in Cambridgeshire after first being diagnosed with BPD around 7 years ago. Private therapy has led her to think ADHD may be the correct (or dual) diagnosis.

It's heart breaking to consider all of the suffering that goes on whilst waiting to find a correct and complete diagnosis; not suggesting that the correct diagnosis is a quick fix but assuming that she may wait years to find out ADHD may not be the correct diagnosis then it'll be back to the bottom of another queue.

Looking at the other posts it's obvious that if only we could get this right when children experience difficulties we could do so much to improve the outcome of people, families, society, and education and healthcare providers.

 

Hi Jo, I completely agree - if we we better at diagnosing and supporting children with ADHD, it would make an immense difference. Thanks for sharing your daughter's experience, it must be very hard having additional diagnoses. I really hope she can get some answers and appropriate support quickly. 

My experience has been somewhat similar to the above - my teenager most likely has ADHD and/or ASD and we have really struggled to access any assessment or support.  The GP was great, but the NHS waiting lists for CAHMS were so long that they said there was no value in joining it as she would be an adult by the time she was assessed and would therefore no longer be eligible. We therefore had no choice but to go privately - even here the waiting lists were long but she did get to see someone in the end and is now in the process of doing the various evaluations to work out what the diagnosis, if any, may be. 

In her case, the challenges she has faced have led to additional mental health challenges, and while we know that labels aren't always helpful, both she and I feel that it would be hugely helpful to have the "label" if she is indeed neurodivergent, to help make sense of why she feels different and why some things are so much more challenging for her, as well as hopefully helping us identify strategies to help her.

So yes, this is a massive issue!

I'm so sorry to hear your daughter hasn't been able to access NHS care, and I hope that she is able to get some answers and helpful support very soon. There has to be a way round the issue of the waiting list being so long that when you get to the end you're no longer eligible - I'd be interested to find out whether there are any organisations taking a more joined up approach to that transition from children's services to adults'.

@BDF @Jo Griffin @Greenfingers @Stefanie If any of you would be interested in sharing your perspectives as a parent in a blog about these issues, please do get in touch with us at [email protected]. We can offer editorial support and blogs can be anonymous

Waiting for an ADHD diagnosis can be incredibly frustrating. I had to wait months just to get my first appointment, and even longer to start treatment. During that time, daily tasks felt overwhelming, and it was hard not knowing exactly what I was dealing with. What helped me most was learning small coping strategies and connecting with others going through the same thing. It doesn’t fix the wait, but it makes it a bit more manageable. Hopefully, access improves so people can get the support they need sooner.

Edited 18 March18 Mar by Clive Flashman
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