ADHD: Woman 'desperate' for diagnosis uses credit card to pay for private care
Video report by ITV Wales Journalist, Annabel Smith
A woman from Caerphilly was who diagnosed with ADHD as an adult said she spent years up until that point wondering why she struggled with things like timekeeping and being "forgetful".
Charlotte, 34, was diagnosed with ADHD in December last year and said when that happened, her "whole childhood made sense".
The number of adults seeking an ADHD diagnosis has drastically increased since the pandemic. This steep rise is due to a number of factors, including a substantial increase in awareness of the condition and its symptoms.
As a result, waiting lists are longer and with some health boards offering no ADHD services at all, many have resorted to going private.
Charlotte said: "Often, like at school I’d go off on my own because I wouldn’t want to play the games other children played," she said.
“I couldn’t really explain why. I just thought all of the symptoms that I had that were ADHD were just basically character defects like always being late, being really forgetful."
Charlotte said it was only when she got older and her son was going through the process of getting a neurodivergent diagnosis, that it made her think there was a possibility that she might have the condition.
She said: "And then everything made sense. My whole childhood made sense, why I felt so different, why I felt like I was from another planet.”
What is ADHD?
Attention deficit hyperactivity disorder (ADHD) is a condition that affects an individual’s emotions, behaviours and their ability to learn new things.
Types of ADHD:
Inattentive type - getting distracted, having poor concentration and organisational skills
Hyperactive-impulsive type - characterised by symptoms of impulsivity and hyperactivity.
Combined type - your symptoms may not exclusively fall within the inattention or hyperactive-impulsive behavior. Instead, a combination of symptoms from both of the categories are exhibited.
However when it came to getting that assessment, Charlotte was told her health board didn't offer ADHD services and so she could not be referred for an assessment through the NHS.
She explained: “I did make an appointment and I did discuss it with a GP and they basically said that there was nowhere to refer me to, there were no adult ADHD services. So basically there was nothing they could do, it is the private route.
“At that time, the private route didn’t seem like it was accessible because of the costs and everything, but my mental health deteriorated.
"I ended up being seen by the community mental health team and they more or less said the same sorts of things. They said they couldn’t diagnose me with ADHD, that I would probably have to go private because there was nowhere they could refer me to.”
She added: "I did use my credit card and I’ve been trying to pay that off just because I got so desperate in the end for help and support.”
In response to Charlotte's story, a spokesperson for Aneurin Bevan University Health Board said: “We’re sorry to hear about the experiences of this patient. The service described is not to the high standards we aim to provide, but unfortunately we have experienced a number of challenges while trying to progress our ADHD diagnosis and treatment service for adults.
“The situation regarding ADHD provision within ABUHB is rapidly improving, with agreement to formally establish a ADHD service for adults. As part of this decision, training for staff is required and there is an active ADHD steering group and psychiatrists are being supported to attend ADHD training events.
They added: “The Health Board is in the process of setting up ADHD clinics at St Cadocs Hospital in Caerleon, which aim to diagnose and establish patients on treatment and will implement Shared Care Agreements with GPs.
"There is a long waiting list for such a service, but it is anticipated that the waiting list will shorten as clinics open and we develop our Gwent-wide service.”
So why has there been an increase in adults seeking a diagnosis?
Professor of External Engagement of Science and Co-founder of ADHDadultUK, Professor James Brown, explained that the increase experts are seeing people wanting an ADHD diagnosis, is mainly due to a 'massive increase in awareness'.
He said: "The biggest reason for this is that there are around between 2.8% - 5% of adults who have ADHD and the vast, vast majority are undiagnosed, so there's always been this big pool of people who don't know that they have ADHD.
"And then when lockdown happened, the pressure of being in the same room, in the same house for weeks or months on end really can compress the inattentive and the hyperactive side of our symptoms and start to make you struggle with mental health.
"So if you combine that with the increase in public awareness, so certain celebrities announcing that they’ve got ADHD and people becoming more aware of it, that’s led to this massive increase in people seeking a diagnosis of ADHD.”
Professor Brown explained that because there are more people coming forward for an ADHD assessment, there is now an increase in wait times, with some waiting 'five years for an assessment'.
He said: "It's a supply and demand issue. The NHS, which isn't well resourced for neurodivergent disorders anyway has all of a sudden seen lots of people come forward and say 'I need a referral', the GP's agreed these people need a referral and in some areas, when this started, there was't a community ADHD service.
"So there's been a lot of trying to build services quite quickly, and that's led to, in some areas in the UK for example, it being a five year wait just to get an assessment."
How does the situation in Wales compare to England?
Over the border in England, the situation is very different - those who warrant a referral for an ADHD assessment have the right to choose the hospital or service they go to, meaning they can often be assessed more quickly.
Professor Brown said: "In England, any patient registered at a GP practice has a right to use a scheme called 'right to choose', and that means that you can - if your GP agrees you warrant a referral - say can you refer me to that clinic over there, and that means you can see any qualified provider."
Jaz Millar first filed their paperwork to join the waitlist for an ADHD assessment in spring 2021. They weren't seen until December 2022.
“It was a long wait," Jaz said.
"Not just to be seen by a psychiatrist, but also getting rejected before it got to that point by the mental health team and sometimes without even being told what’s going on - I didn’t know how long the waiting lists were, I didn’t know why I’d been rejected to join the waiting lists.”
Wanting to help others, they set up the ADHD South Wales Facebook group in March 2021 for people in search of answers and support relevant to Wales.
They said: “I found that in the UK-wide Facebook groups, there was a lot of information that wasn’t relevant to Wales because we have a different system for private practices interacting with the NHS, which meant that people were being told ‘oh you can just see a private practitioner for free in a few weeks’ and that then is quite crushing to find out that’s not true in Wales.”
Seeing similar questions and themes coming up in people’s posts, Jaz decided to conduct a survey to get a sense for people's experiences getting their diagnosis.
The survey, which involved 72 participants from the Facebook group, consisted of "some simple questions about how people felt about the treatment they received, about how long it took to get a diagnosis, about any obstacles they might have faced."
They said: "I found that very few people were able to receive an initial diagnosis on the NHS, an awful lot of people went private."
And turning to the private sector is something Professor Brown said is reportedly becoming more common, with private clinics now also having longer waiting times because they are seeing an increase in people reaching out.
Jaz said they were extremely emotional responses to the survey, with people describing how "life-changing" diagnosis had been for them.
They said: “There was a lot of pain and suffering in the responses, people were saying how difficult their lives were and also people were saying how life-changing treatments were, there were some really moving testimonials about people saying how they just wish they’d had treatment earlier because it’s completely changed their life.”
Looking forward, Jaz said they think staff need to have more training and understanding and services should be "more accessible".
They said: "Even though people’s satisfaction in general was higher from experiences with private services, it’s not true that everyone in the group just wants to go for privatisation and just wants to go for a method like England where you can have the right to choose to see a private practitioner.
“People were asking for more staffing, but also more training and understanding on the NHS.
“Shorter waiting times, yes and less hoops to jump through, yes but the service also has to be more up-to-date, more accessible.
Jaz also encourages anyone who thinks they may have ADHD to find a community and not give up.
They added: “Don’t give up because everyone who has got to the end has said that it’s been worth it.”
A Welsh Government spokesperson said: “We are working with people with neurodevelopmental conditions, including ADHD, their families and professionals to make long-term improvements to neurodivergence services across Wales.
“We have committed an additional £12m over three years to improve services while strengthening support for families and carers who are waiting for an assessment.”