The identified codes highlighted five main themes (Table 1). While some themes overlapped strongly with previous findings from literature reviews , new topics emerged from our synthesis.
The new topics highlighted by this analysis were: GPs’ not identifying ADHD and the lack of services and pathways to care. These concepts were present within all interviews and reflected by all stakeholders. These concepts were seen to impact on other themes.
Lack of identification in primary care
No identification in primary care
The main theme highlighted by this analysis, related to the concept of identification of ADHD. Specifically, GPs indicated that they were not the ones identifying ADHD symptomatology when faced with patients’ issues. All interviewees, when asked who was responsible for picking up ADHD agreed that it principally came from the patients. Only one GP described identifying ADHD in his patients, and then only around 10% of the time. All other GPs acknowledged that they had never identified ADHD in a patient. It was more common for patients to raise the issue of ADHD with their GPs, with identification of symptoms being triggered by personal reflection or a third party, something referred to as “chance diagnosis”. Third party identification was often triggered either by schools or through the diagnosis of a first degree family member (child or sibling).
“My experience has always been a parent has brought their child in saying, “I want a referral to paediatrics. I think my child has ADHD.” It’s either the school suggesting it to the parents or the parents suggesting it” (P11- GP)
“ADHD was not picked up, not for many years […] my wife picked it up, my wife who works in a school […] but the doctors never picked it up” (P2- adult)
“I was looking into it for my sons and then realised that actually I’ve probably got it myself” (P4- adult)
Patient-led approach and strategies
Patient-led approaches have implications both for the initiation of referral, and the subsequent process of referral. As the process is usually not led by the GPs, patients stated that as well as having to ask for a referral and initiating an ADHD enquiry, they also had to push to get a diagnosis. Strength of character and stubbornness were key factors in getting through the process and patients believed that without a constant effort on their part, they wouldn’t have received a diagnosis.
“So yeah, there was basically nothing on their part, it was just me pushing for it and me being proactive about it” (P5- adult)
“They need to say, what can we do to help you? That was never done. I’m lucky because I’m strong and feisty and I knew that there was something wrong” (P13- parent)
In order to address the lack of recognition by the GPs, patients developed strategies to bypass GP gatekeeping. For instance, some patients sought private diagnosis in order to access care. In particular, private diagnosis was sought when patients felt that they had reached a dead end, or strongly needed access to care, or perceived that GPs lacked awareness and were not acknowledging their issues.
“We didn’t want to wait, so we paid to see a private guy and he did the diagnosis very straight forward and very quickly for us” (P12- parent)
One patient explained that after years of issues, she had to “trick her GP” into giving her a referral for a diagnosis.
“No one had picked it up[…] So it was only when I read something online that sounded like me, and then did some further research and then tricked my GP into giving me a referral” (P5- adult)
While patients revealed being affected by issues surrounding lack of identification, this experience was something that GPs also acknowledged. GPs expressed that the identification of ADHD was a very complex process, and difficult to pick up in a consultation.
“So, we rely a lot on what parents tell us and parental concern as well. If we see the child, we’ll only have a brief interaction with the child, so our impression of the child is mainly based on history and parental concern [...] it comes from the parents mainly” (P14- GP)
“I don’t think I’ve ever had anybody come and say, there’s this, this and this and I’ve said, I think that’s ADHD” (P15- GP)
Lack of clear diagnosis pathway and services
The next theme identified in the interviews related to the issues around diagnosis pathways and services. Despite clear guidelines, diagnosis pathways vary considerably between different areas. This is due to distinct commissioning priorities between healthcare localities (NHS Trust), which result in resources being allocated differently and a consequent impact on services. All interviewees agreed that their experience of diagnosis and management depended strongly on the services provided and the pathways in place. A ‘good’ service was perceived as one in which pathways were clear, communication facilitated and management processes were relatively straightforward. However, in most cases, services and pathways were reported to be very unclear, muddling the referral, diagnosis and management process.
Complexity of services
The complexity of the services was discussed at different levels, firstly through lack of service availability, secondly though GP’s lack of knowledge about what services were available and thirdly through variations in services depending on geographical areas. The lack of service availability greatly hindered the diagnosis and management process
“It can be difficult to get somebody assessed for ADHD […] So in my experience, I have had to send somebody out of area in the past in order that they can get a diagnosis or get some help and support for it” (P6- GP)
“So parents sometimes come to us and say they have waited a long time to see us and I’ve never really been sure why they’ve waited” (P18- secondary care professional)
“There isn’t a pathway because it’s not a commissioned service” (P19- secondary care professional)
“It was tough, there was nowhere for me to go to get a diagnosis or to see anyone who could give me a diagnosis” (P4- adult)
It was also discussed that even when there were services, the services were not known about or were often changing, making the process of referral confusing.
“So I think some GP’s may not even know that we (specialist service) exist actually” (P1- secondary care professional)
Finally, the referral process was often so complex that GPs had to refer to different services according to many variable factors, including geographical location, making it very difficult to keep track of which pathways they were supposed to follow.
“So I’ve tried referring them to the paediatricians locally here and I’ve had it bounced. I’ve referred them to the psychiatrist and I’ve had them bounced. I’ve asked is there a community and mental health team that can see this patient, and they say it doesn’t cover their remit. So I find it to be a very difficult referral process” (P7- GP)
“Because we’re a tertiary service and we don’t have the resource to be able to case hold and so case holding needs to take place in secondary care, not adult mental health services […] we don’t accept referrals from the GPs […] Because there’s conflict between the GPs and secondary care about who takes on the prescribing, so the area prescribing have not managed to reach agreement to develop a shared care protocol” (P19- secondary care professional)
Long waiting lists and triage
This lack of services and clear pathways had strong consequences on the referral process, principally creating long waiting times. With services overloaded due to limited resources, patients and professionals felt very frustrated by the excessive delays they often experienced.
“After waiting a year and a half to actually get an appointment at the ADHD clinic” (P10- adult)
“It does take a long time (to get a diagnosis). There is a very slow process and we’re trying to look at ways of making it better” (P9- secondary care professional)
In response to the significant delays and overloaded services, many specialist services have set up a system of triaging, putting in place different strategies such as stricter referral criteria or extra layers of screening or information gathering in order to manage waiting lists. These approaches aim to optimise scarce resources but risk potentially losing patients due to the long waits or to stricter criteria which may not get to the root of the problem.
“Services are either not funded or they’ll see people who fit very specific criteria and I know there is no management service” (P6- GP)
“Actually that is partly a deliberate off-putting tactic to try and reduce referrals, which is a terrible thing to say, but I’m sure that’s part of the motivation that it’s another obstacle to this flood of referrals that we get.” (P1- secondary care professional)
Age specific issues
The lack of services had different implications depending on whether it related to children or adult referral pathways. With children, issues related to overloaded secondary care services were often mentioned. This included difficulties with medication management and the difficulties getting hold of specialist services in a timely manner. This had a direct impact on GPs as patients felt that GPs should be able to take over when other services are overbooked.
“(with regards to medication) CAMHS they’re overloaded and understaffed […] GP surgery is far more accessible than trying to see a mental health professional out of your specified appointment time. So the GP can prescribe, but all he does is sign off on scripts, he can’t see them with regards to meds” (P12- parent)
“I think they should be able to contact CAHMS to talk about medication, ‘cause you can’t always get hold of CAHMS because the mental health system is so stretched, so the only other point of call you’ve got is your GP” (P16- Parent)
The main issue with regards to adults’ diagnosis, was the nonexistence of services. Most GPs mentioned that their area had no adult services and they therefore did not know where to refer adults to. This lack of commissioning in turn impacted the few existing services with extra referrals and therefore more delays.
“My experience of referral is only with children because there isn’t an adult service here in L.” (P11- GP)
“like I say then when you get to adults and there isn’t that kind of support around, effectively you’re giving them a diagnosis and you’re not able to do anything for them” (P15- GP)
In relation to the lack of adult services, issues with children transitioning from children to adult services were also raised. In these instances, not knowing who takes care of these individuals was a worry for all professionals. Having no transition services in place implied that GPs might have to carry on managing these individuals with no training or competence.
“When a child turns 18 and they’re no longer… they’re discharged from paediatrics but there’s no adult follow up. There is no pathway at all at the moment, everything just seems to stop” (P11- GP)
“I think probably one of the issues we’re going to be having is that as kids come out of paediatric care and they’re still on these medications, who is taking responsibility and I think at the moment it just defaults to the GP, basically” (P15- GP)
GPs’ knowledge of ADHD and misconceptions
Insufficient knowledge and complex role
GPs’ limited knowledge of ADHD was often discussed throughout the interviews. It was felt overall that GPs were helpful and open to the idea of ADHD, however, the general consensus from all participants was that while they had some knowledge, they didn’t know enough. GPs generally felt they knew enough so that when ADHD was first mentioned, they were happy to refer on to specialist services, yet not enough to identify ADHD or give clear information on pathways and services. This concept of not knowing enough was expressed by healthcare professionals, GPs and patients alike. It was also acknowledged that there has been a general increase over the last decade in GPs’ understanding and awareness of ADHD. However, GPs were aware of their own limitations.
“So no, I feel like we’re very much in the dark when it comes to it and it’s a shame because we are usually the first port of call for parents when they’re concerned about this. I think there definitely is a lot room for improvement in this area” (P14- GP)
“General knowledge has really improved over the last 15 years […] Most know what they don’t know, if that makes sense. So if they don’t know what to do, they know to refer into specialists.” (P3- secondary care professional)
“He (the GP) had an understanding of it but was quite open and he would say “Okay, I will pass you on to the people that know about this more” (P4- adult)
The limitation of GPs’ knowledge mainly related to the process after referral, directly impacting both patients and specialist services. GPs did not know enough on pathways to diagnosis and management. Patients reported feeling frustrated as they had no information on the next steps after referral.
“No mention of any kind of support except for private support that was far too expensive” (P8- parent and adult)
“They put us on a waiting list with no other help or assistance and after a couple of years she went to be assessed” (P13- parent)
From a specialist standpoint, many secondary care workers reported that the lack of sufficient information received from the GPs meant that many referrals had to be sent back or it created longer delays.
“The problem was that some of the referral letters are so brief that there isn’t anywhere near enough information” (P1- secondary care professional)
This was discussed in terms of the lack of clear understanding of differences between ADHD and ASD. As these diagnoses can have different referral pathways, confusing them implies greater delays and/or the refusal of referrals.
“It’s like ASD and ADHD […] I get the impression that GPs don’t really know what either of these things are” (P1- secondary care professional)
The role of the GP in ADHD diagnosis and management is rather complex and this often created confusion for GPs and patients alike. GPs felt that they were not sure about their role, and that they would like to be able to give more support to their patients but didn’t have the relevant information.
“There’s a mismatch between an expectation of my role as a GP and what secondary care think we can and can’t do” (P6- GP)
GPs’ knowledge was also discussed in relation to misconceptions. Stigmas around ADHD were still at times expressed, with the stigma of the “naughty child” often mentioned. One secondary care worker reported that one GP surgery in their area did not believe ADHD was a valid diagnosis. But this instance seemed to be the exception rather than the norm and a change in the last decade around more accurate understanding of ADHD and less stigma around ADHD was noticed. Rather than stigmas per se, broader misconceptions were expressed.
“So some peoples’ GPs tell them that only children get it, although that’s less often now” (P1- secondary care professional)
The main misconception related to the concepts of social economic status (SES) and parenting. These topics were often brought up by GPs as causal factors of ADHD. Parents expressed that they felt their parenting was questioned during the diagnosis process and GPs mentioned that they sometimes wondered if seeking a diagnosis was used as an excuse for bad parenting.
“Sometimes a feeling, almost of the parents are letting their child stay up really late, giving them fizzy drinks, sugary snacks, they’ve got all this sugar and fuelling the hyperactivity” (P6- GP)
“Is it ADHD or is this just bad parenting[…]because their parents either want a diagnosis for financial benefit or they feel like if I give my child a diagnosis it absolves me of the fact of parenting” (P7- GP)
“I was made to feel a little bit like it was my parenting discipline, which I was very upset about ‘cause I’ve been a qualified nursery nurse and a nanny for, like, over 20 years, so I found that quite insulting” (P16- parent)
GPs felt that SES was a strong risk factor and that they had biased views on patients from lower SES, expecting them to seek diagnosis more often. The biases stem from a strong belief that diagnosis is sought to gain access to welfare benefits. Colleagues’ opinions with regards to this specific misconception had an impact on GPs’ beliefs, some GPs acknowledging that colleagues’ mentalities strongly impacted their biases towards patients from lower SES seeking an ADHD diagnosis.
“However, there is also in my mind whether that is a bit of prejudice on my part and the medical professions part, that we’re almost looking for these problems in people of lower socioeconomic means which, if we saw perhaps a very affluent middle class parent with a child, we might not necessarily jump to that conclusion” (P6- GP)
“When I see individuals, unfortunately who are trying to con the system, and not only do I see this but I have my colleagues in my general practice come to me to say, another one trying to get her child a diagnosis. So I don’t think it’s just my personal bias but it’s also the practice bias” (P7- GP)
“It seems like a lot of parents who are saying ‘I think my kid has ADHD’ are generally of a lower socio-economic class and may be single mums and maybe have lots of children and maybe their life is a bit chaotic[…] maybe, asking for an explanation or an excuse in poorer families” (P15- GP)
GPs also had misconceptions around individuals’ behaviour in consultation. They stated that even though it doesn’t affect their final decision on referral, the patients’ behaviour strongly impacted their beliefs with regards to whether the patient might have ADHD.
“I’ve had people ring me up and say, this person says they’ve got ADHD but they sat beautifully still and concentrated well for the whole eight minute consultation?” (P3- secondary care professional)
“So, sometimes the parents will describe the child in a certain way and you think, oh my goodness, when this child comes he’s going to be bouncing off the walls […] Then they come in, they sit on the chair and they’re quiet, they’re polite, they’re okay and then you think to yourself, this doesn’t sound like the child that mum was describing earlier on. So sometimes it makes it a little bit difficult to marry that up” (P14- GP)
Finally, the last misconception related to ADHD in high-functioning adults and in girls. High functioning individuals and girls seem to go under the radar as they often do not meet the GPs’ beliefs about ADHD. They might be less hyperactive, less disruptive in class and therefore do not fit some conceptions attributed to ADHD.
“So anybody coming in as an adult is obviously not going to have really typical, really severe symptoms otherwise he would have been picked up or you know” (P15- GP)
“So, I think typically that stigma still exists for us, because GP’s, professionals, even teachers will say, actually they’re a quiet inattentive young girl rather than loud noisy boy. They can’t have ADHD because they’re not shouting at me or causing a problem in the class, or they can’t have ADHD because they’re not running around […] So I think there’s still that thought that if you’re not extreme, you don’t have difficulties warranting a psychiatric assessment” (P3- secondary care professional)
Impact of diagnosis and the risks linked to no diagnosis
Impact of a diagnosis on the patients
The positive impact of receiving a diagnosis was discussed by patients and secondary care workers. The benefits of receiving a diagnosis with regards to gaining access to care and gaining a greater understanding of individuals’ issues was often a great help and relief for the individuals.
“(upon receiving a diagnosis) I was relieved and I think he (her son) was relieved […] I think he welcomed it. He was self-medicating a lot on drugs and not going down a very good route at all, and since he has been on the medication he’s not really touched drugs very much” (P8- parent and adult)
While gaining a diagnosis was linked to many positive outcomes, adult patients who had all received a diagnosis in adulthood, felt a lot of mixed emotions upon receiving an ADHD diagnosis. Receiving a diagnosis opened many doors and was an overall positive experience, yet frustration and anger were also expressed that this had not been picked up earlier. Adult patients felt a sense of loss and missed opportunities for the years they spent undiagnosed and expressed that they wished it had been identified sooner.
“I felt a bit annoyed really because I would have liked to have known way back, earlier than that. It came as a big shock… […] what worries me is that many people are put on the wrong drugs, wrong medication when it isn’t being picked up” (P2- adult)
“But I’m still cross… we’ve wasted years really” (P13- parent)
The delay experienced in receiving a diagnosis also had other negative implications for the adult patients. Some adults self-medicated with drugs or alcohol before seeking a referral and also while waiting for their diagnosis in the absence of other coping mechanisms. Some patients stated that they sought a diagnosis when they were experiencing severe issues and the additional wait led to distressing feelings, depression, time off work and at times could lead to risk-taking behaviours.
“So then people wait for 18 months to two years at the moment, which I think is not uncommon, but it’s very hard for them and for us really because we just know that they aren’t going to improve in that time and it may lead to lots of life problems […] at times it can be life threatening, if people do stupid things or feel suicidal and so on” (P1- secondary care professional)
“So typically we see teenage girls who come into the CAMHS service for self-harm or overdosing. They’re very frustrated with their life, they’re suffering educationally, something happens and their skills to be able to cope with things implodes or they just kind of struggle and do self-harm or something like that” (P3- secondary care professional)
“and I had to get to that stage where I felt I was in desperate need ‘cause I was just being passed around from pillar to post and if I hadn’t have been quite strong, sort of thing, I can see how some people in that position would do something silly and would harm themselves […] and I tell you what, I drank a hell of a lot of alcohol and self-medicated on other things” (P4- adult)
“The whole thing was quite upsetting if I’m being honest” (P16- parent)
GPs’ negative view of ADHD label
While patients and secondary care workers expressed many benefits in gaining a diagnosis, GPs on the contrary expressed negative bias to the diagnosis of ADHD, wondering why patients would want this diagnostic label.
“Some GPs are very reluctant to make a label or a diagnosis because of stigma attached to it […] I’m consciously aware that it’s a diagnosis that’s probably not very nice for people to have” (P6- GP)
They also expressed that they did not see the point of seeking a diagnosis in adulthood given that adults had somehow managed so far. The ADHD label was linked with strong negativity from the GPs and they struggled to see the positives associated with it in adulthood.
“I think I definitely wonder sometimes, as an adult, is this going to change anything for you? It’s the case with any investigation we do or any referral, you’re giving somebody a label. A diagnosis, is it actually helpful?” (P15- GP)
Difficult communication between multiple stakeholders
The last theme identified from the interviews referred to issues with communications. The lack of clarity in the communication between services created more work, more delays in the processes. This encompassed both difficulties with communication between and within services (primary care and secondary care) but also communication between services and patients.
Communication between services
The complexity of the diagnostic process meant that communication was often very difficult between services with a general confusion about their designated roles. From the GPs’ perspective, the lack of services and change in referral pathways resulted in GPs not knowing where to refer to and referrals being sent back. They also were unsure of the different information they were supposed to send and which services to refer to.
“You give them all the information, you think, wow this seems like it’s really good information but then they’ll write back and they’ll say they don’t necessarily think it’s an appropriate referral and things like that […] so it would be nice if there was a little bit more of a way to communicate with community paediatrics” (P14- GP)
The nature of an ADHD diagnosis meant that a lot of information from different stakeholders need to be gathered in order to proceed. Waiting for information to be sent back from schools, patients etc. also created longer delays both for primary and secondary care services and the communication through these processes was also at times difficult.
“It can be a very quick process or it can be a very strenuous process depending on the school” (P3- secondary care professional)
“There was supposed to be a system set up where schools gave an awful lot of information to the GPs to pass on to the paediatricians and for some reason that doesn’t happen” (P9- secondary care professional)
From the specialist services, the lack of accurate information, or not enough information from the GPs in general, meant that they struggle to know how to proceed with diagnosis for specific referrals.
“We had a bit of a problem in that GPs were not giving some of the information that we needed, some of the letters were minimal […] At the referral stage, it’s a bit frustrating for both sides really. So if they send me a letter and I think, oh I don’t really know what I need to know, I’ve sent it back to the CPE, the CPE have said to them fill in this form, then they send me the form which is a bit of a hold up” (P1- secondary care professional)
“In terms of primary care, it varies considerably because every GP practice, as you can imagine, has a different admin system and so some are much more efficient than others” (P18- secondary care professional)
Communication with patients
Patients received very little information about ADHD following referral, both with regards to the diagnostic process and the management process. Many reported that once the referral had been sent through, they had no idea about how long it would take, what the process involved, and what was to come next. This implied a lack of communication both from primary and secondary care services.
“I asked for a call back and didn’t get that. So eventually I made an appointment with my GP who referred me back to the ADHD clinic and that got lost as well, so eventually I had to call the clinic again” (P10- adult)
“So there wasn’t clear communication between them and me either, so I filled in a questionnaire to get onto the waiting list and I didn’t hear anything. I assumed that they decided I didn’t have anything, they weren’t going to give me an appointment and then all of a sudden, 18 months later out of the blue, I got an appointment letter to go and visit them” (P5- adult).
“We were left with this big bombshell, and not; “If you need help in the meantime you can contact various agencies in your area.” It was, “Nope, see you in four months, but I’ll give you a ring in a month to see how you’re getting on with the medication.” (P16- parent)
Patients felt that services were unwilling to take responsibility and lead the process with clear communication. One of the main issues expressed by the patients was a feeling of being constantly passed around. With one service telling them to go to another and vice versa. Patients reported feeling dismissed and wondering why there was such a reluctance to provide information on the process.
“So, unbelievably frustrating, there just aren’t the resources there and you just ended up getting passed from pillar to post and you got pushed onto someone else, and someone else, and someone else […] I felt it was a stacking system, you were being stalled ” (P4- adult)
“The school kept telling me to go to the GP, the GP said no, they can’t refer us, the school had to. I was like a ping pong ball, you know, going backwards and forwards” (P17- parent)