Not happy with the initial screening (and dismissial) due to negligence

Q&A (Run by volunteers)
1

I spoke to my GP about my concerns 2 years ago and they referred me for ADHD screening. It was a very lengthy ‘test’ covering my childhood and my relationships with my partner and parents.

After submitting that form, I was strictly told never to contact the department as it would delay my process. I was told my wait time would be a minimum of 3 months.

After waiting 1.5 years, I contacted them and they told me there had been a mistake, and immediately arranged someone to interview me on a Saturday, which I already took as a bad sign. No one wants to work Saturdays.

The nurse who interviewed me basically asked the exact same questions from the initial form, only focused on the childhood section. The problem is, I have a severe lack of memory of my childhood. I specifically stated this both on the form and to the interviewer, and it was ignored (because it wasn’t on the form). He eventually concluded that I don’t have ADHD because I wasn’t showing symptoms in childhood. When I asked what information he was basing this decision on, he couldn’t answer. He also admitted he wasn’t allowed to say anything beyond what the results were telling him to say. After the interview, I requested more information and just got an email saying I’d been discharged.

Honestly, I’m not chasing a diagnosis at any cost, but I think I deserve better treatment than this. I really don’t know who to trust at this point, and I don’t know where to look, as the ADHD UK information is extremely scattered and most of it ends up as a giant list that includes everything for everyone.

My GP doesn’t know how to help either, as they can only refer me back to the 2-year waiting list. Would really appreciate a few pointers on what I should be doing at this point.

2

Thanks for sharing this with us, and I’m sorry you have had such a bad experience. You have highlighted a very common issue that a lot of adult’s experience. Often you will be asked to provide evidence from childhood as well as school reports, which not everyone can provide.

If you could tell me where abouts you are based, and what information you are specifically trying to find out. I will do my best to help

3

Thanks for replying! I’m based in London, which I assume explains the long waiting lists. Happy to share more specific details over DM if useful.

I’d be open to going through an assessment again, but from what I understand the only route is repeating exactly what I’ve already done: convince my GP, join the waiting list, fill in the same form, and have a nurse ask me the same questions. That means the outcome basically depends on whether I give the ‘right answers’, which honestly doesn’t feel any more rigorous than the self-tests you can find online.

What I’d really value is a path where I can talk to someone knowledgeable who can actually answer my questions, rather than read from a script. I’ve seen Right to Choose mentioned, but I don’t fully understand how it works or whether it would just lead to the same kind of assessment. Is that worth pursuing, and are there providers people here have had better experiences with?

4

Unfortunately, it’s a similar story across the country, not just in London.

You need to ask yourself; do I want medication? and what do I want the diagnosis for?

For many ADHD medication is an absolute game changer and for others its less important. If you wish to access medication, then a formal diagnosis is non-negotiable. However, if you feel as though you can manage without, then there are plenty of alternative ways to access support.

Non-Medication Options

You do not need a formal diagnosis of ADHD to request reasonable adjustments at work or be granted access to work. Without a diagnosis, you can also access NHS talking therapies for general MH support that may result from unmanaged ADHD. There are plenty of ADHD support groups throughout the country where a diagnosis is not necessary to attend. ADHD UK have a host of online events to help people manage their ADHD. Again, no formal diagnosis is necessary to participate.

Medication

Like I say, a diagnosis is non-negotiable. In the current climate, the best option is Right to Choose. It’s by no means perfect but it is the fastest route to a diagnosis.

ADHD is assessed based on the symptoms you are experiencing and for how long. Officially, the assessor will carry out an extensive assessment on your entire life to find out when the symptoms began and to what extent they are affecting your life. The process is the same for people who go through the NHS, private clinics or for those who exercise their right to choose.

Right to Choose is when you get an ADHD assessment from a private provider, but it’s funded by the NHS. To access right to choose you must find a private provider that has a contract with the NHS and then ask your GP to refer that provider you under your right to choose.

Going through right to choose won’t guarantee you a diagnosis, nor will it guarantee you medication.

If you decide to exercise your right to choose, and you want medication. I recommend asking your GP if they would accept a shared care agreement with your chosen provider. Shared care Is when your GP and assessor share the responsibility of your prescription.

Drop in advice clinic

Our CEO Henry delivers weekly drop-in advice clinics for anyone who wants to speak to someone in person

Unfortunately, whether you go through NHS, NHS Right to Choose or private, the diagnosis pathway is not straight forward and for many it can feel as though the more ADHD they have, the harder it is to access support