ADHD – To diagnose or not to diagnose?

I am writing this blog post almost 30 hours after receiving my official ADHD diagnosis. Was it a stressful thing to do? Oh most definitely. Was it worth it? 100%.

The decision as to whether or not to seek an official ADHD diagnosis as an adult is one of personal preference and I thought I would write here about my experiences and hopefully it might help you decide for yourself.

I will make a point of saying that my experience of ADHD and assessment and diagnosis is MY experience. I do not speak for anyone else. Others may experience their ADHD differently or have different motivations for seeking a diagnosis. I am also based in the UK and so anyone reading this outside of the UK may also have different experiences.

So, you suspect you may be ADHD…

What do you do next? For me seeking an official ADHD diagnosis was important because it opens the doors to medication, something I am very up for trying. I’m not one for popping pills unnecessarily, but if there is something out there that might make my life easier then I believe I owe it to myself to try. As ADHD medication is a controlled substance it can only be accessed with an official diagnosis.

Some reasons why you might want to seek a diagnosis:

·        Access to medication

·        Validation

·        Self-understanding

·        Access to further support such as CBT or counselling.

Some reasons why you may not wish to seek a diagnosis:

·        Complicated process

·        Long waiting lists

·        Limited access to support following a diagnosis

·        Happy to self-identify

All of these reasons are valid and you may have some more of your own to add to the list.

In the UK, there are three main ways to access an assessment. Every area of the UK will have different practices and waiting times and this may differ again in Wales, Scotland, and Northern Ireland. I live in England so my experiences are in how the system works here. Please take some time to research and familiarise yourself with your local practices. The three access points are:

1.      NHS

2.      Right To Choose

3.      Private

NHS:

Accessing a diagnosis through the NHS starts with requesting a referral from your GP.  They will ask you two main questions: why do you believe you have ADHD, and what difference will a diagnosis make to your life. Make sure you have considered your answers to these two questions and have them written down to read from if this helps. I also recommend completing the ADHD screening test, such as the ASRS test, and printing a copy to take with you as evidence. I went armed with reams of paperwork and evidence to back up my request. Most GPs are getting better at understanding ADHD and acknowledging that the condition manifests in people differently so you hopefully shouldn’t meet with any resistance. However, I have heard of instances where GPs have refused to make the referral because the patient didn’t seem ADHD in that moment. Please know that if you are dissatisfied with your GP’s response to your referral request you are entitled to ask for a second opinion.

Once your referral has been made you will be added to the NHS waiting list. This is notoriously long; I have heard anywhere from two to seven years! Different areas will have different waiting times but be prepared for a long wait. This can be excrutiating, the waiting and the not knowing. My advice is to treat yourself as if you have your diagnosis; start to look at ways you can make accommodations in your life and seek support in other ways that you find helpful as this will make all the difference to you in the meantime.

Of course, for UK citizens, accessing an assessment through the NHS is free and this makes it accessible to those who would struggle to pay for an assessment. It also means that, should you receive an official diagnosis and wish to try medication, this process is also managed by the NHS and is also free.

Right To Choose:

RTC is an UK citizen’s (with access to the NHS) legal right to choose where they are referred for treatment. If the NHS cannot offer a specialist mental health appointment within a reasonable waiting time, we can choose to be referred to a clinic that offers assessments for RTC patients. There are only a few clinics that currently offer RTC for adult ADHD assessment – at the time of writing the main clinics offering Adult RTC ADHD assessments are Psychiatry UK and Clinical Partners. I used RTC through Psychiatry UK. The referral process is the same: it needs to come from your GP. However, you will need an additional document when you request the referral. A visit to your chosen clinic’s website should give you access to a letter which can be adapted with your contact details. This letter lays out in legal language that you are activating your Right To Choose and will contain the contact details of your chosen clinic so that your GP will know where you wish to be referred to.  

Right To Choose felt too good to be true when I first looked into it. It is still done through the NHS so is free but the waiting times are much shorter. I was referred around May 2023 for ADHD assessment and I had my appointment in February 2024, a wait of 10 months. I was actually asked to book in my assessment appointment in December 2023 but the soonest appointment I could get was in February.

Be aware not all GPs understand about RTC. When I first approached my GP they had no idea what I was talking about which concerned me greatly considering it is a part of British Medical law! I believe there is far more awareness around this now and am hearing of fewer and fewer cases where the GP isn’t informed about this legal right. The letter you provide from your chosen clinic will explain the legal terms of RTC to your GP so don’t worry about needing to learn the legal jargon to argue your right to access when you see your GP.

Once your GP has made your referral you will be placed on the relevant waiting list and it becomes a waiting game, although hopefully, a shorter one!

It is important to acknowledge that the NHS will only pay for one ADHD assessment to be undertaken. You cannot be on the NHS waiting list and a RTC one. If you are unhappy with the results of your assessment, you are not entitled to a second opinion Through the NHS. You are able to ask for a private assessment though.

Something I liked about the RTC option was the fact that I was receiving an NHS funded assessment with NHS backing and underwriting, but the assessment was being performed at a private clinic. More often than not, the clinics offering RTC assessments also offer private ones. It is the same clinicians following the same protocols as they would for a private assessment but you have the reassurance that the have been vetted by the NHS and are doing things as they should be done: for me I felt like I could trust the results as being accurate and reliable.

Private:

A private assessment has its pros and cons. They have very short waiting times with access to an appointment often available within days. However, they can be very expensive and can also have hidden extra costs when it comes to accessing medication.

A private clinic is a clinical business offering assessments for a fee. Because the fees can be so high (I was quoted anywhere between £500 and £3,500!) this makes a private assessment unavailable to a lot of people. But for those who can afford to have a private assessment, they can provide swift answers to your questions and alleviate the uncertainty of long NHS waiting lists.

However, accessing a private ADHD assessment does incur more costs than just the original assessment fee that you need to be clear on before electing to choose the private route. On a diagnosis of ADHD you will be offered the option of trying medication. This is done through a lengthy process called titration. Titration is the process of prescribing and monitoring a patient when they are first placed on ADHD medication. GPs aren’t allowed to prescribe ADHD medication, they need to be prescribed by a qualified psychiatrist. My understanding is you are given the smallest dose and closely monitored over several months, the levels being adjusted accordingly, until the correct amount and type of medication for you (there are several to choose from) is found. Each appointment you have with your prescribing clinician is billable plus the cost of the medication on top. The NHS will not titrate your ADHD medication to you if you have been assessed privately.

Once the prescribing clinician is happy with your levels, they will refer your prescription to your GP for repeat ordering under what is called a Shared Care Agreement. This is where your care is shared between you, your GP, and your psychiatrist. A GP can refuse to sign a Shared Care Agreement (or SCA). Although this is uncommon in RTC cases, the impact of this occurring in the case of a private diagnosis means you are then only able to access your ADHD medication privately at further cost. You are able to argue this with your GP, however it is something to bear in mind when deciding which route to take for ADHD assessment. If you suspect your levels need adjusting or are having any difficulties with your medication, you would need to return to the prescribing clinic, even if you are under a SCA, which means if you have taken the private route could mean more costs.

I am now at the point of being placed on the waiting list for medication titration and I shall talk more about my experiences of this as time goes on. Through Psychiatry UK I have been informed that this waiting list is around 6-7 months so watch this space!

Whatever option you decide upon to access your ADHD assessment, it wont be easy. Remember self identification is completely valid and there is no need to seek official diagnosis if you don’t want to. If you do wish to access medication, or seek an assessment for any other reason, you will be in for a lengthy wait or a hefty bill, and the sad reality is you will have to fight for it. I’ve been fighting for myself and my children for three years now and, all being well, by the summer we will all have the answers we need. But its been a long and exhausting process, not something to be undertaken lightly and on a whim. I always laugh when people say we just want labels, or it’s a trend. If only they knew what accessing support involved they would soon change their minds!

Whatever you choose to do, I wish you love and luck and come and join us at the All Access Sewciety where we all support each other in our ADHDness! (Yes, I’m pretty sure that’s a real word…)