Identification

There was some variation regarding the methods and techniques used by GPs to identify autism and ADHD in children. References to a diverse array of different forms of information could be seen across the transcripts, including both tacit and explicit sources. These include various clinical or behavioural markers, unstructured behavioural tasks (eg, ‘pointing to assess joint attention’ task, prior knowledge of the family and discussions with colleagues) and personal experience. Nevertheless, the extent to which GPs considered, used and triangulated this information varied considerably, with some GPs offering to contact schools and others basing the referral on parental report.

Explicit information: an assortment of diagnostic or clinical markers for each condition were described by participants. Oft cited features of autism included atypical eye-contact, delayed language, fixed or specialised interests (eg, Emergency Departments), ritualistic behaviours (eg, rocking) and sensory sensitives. When thinking about ADHD, most practitioners characterised the condition by inattention, problems with concentration, impulsivity, social problems and impaired academic functioning. Yet some GPs expressed uncertainty and hesitancy when asked about particular indicators:

Early markers? I’d probably have to look it all up, actually……And often I do. When I’ve got a patient coming in, I just have a sort of screen what the most common symptoms PTGP02

There’s gonna[sic] be diagnostic criteria for that but don’t ask me what they are. There’s a big long list of diagnostic criteria, but I kind of think that’s more a specialist job to apply the diagnostic criteria in detail before making the diagnosis, but I’d probably spot the warning signs as it were and refer on as appropriate. PTGP06

And indeed, several practitioners described looking up markers using professional sources such as GP Notebook, Clinical Knowledge Summaries or Patient.co.uk as well as some lay sources including Google or Wikipedia to find specific behavioural markers. Of note, GPs did not refer to NICE guidance.

In general, however, GPs appeared to agree on the importance of parental report. This is, of course, understandable as parental concerns are an essential component of the formal assessment for many behaviourally diagnosed developmental conditions. While describing past cases, one GP commented:

Nine-tenths is the story you’re given by the parents. Because they are the…… as I say to parents, you know your son or daughter better than anybody in the world. So, we have to listen to what they have to say, [and their] ideas, concerns, and expectations PTGP07

And indeed, the majority of participants expressed similar sentiments. Importantly, however, most GPs indicated that parental report alone was not sufficient grounds for a referral. Instead, it was suggested that such reports should be corroborated with observations of the child. Yet when facing uncertainty, approaches varied. For instance, after reflecting on complex or uncertain cases, one GP remarked:

Just got to go with what the parents are thinking PTGP06

However, another GP was especially concerned with diagnostic trends and the medicalisation of non-medical behaviours. For this GP, it was particularly important to triangulate parental concerns, observations of the child and reports from the child’s school. This GP reflected on a case where parents queried a diagnosis of ADHD following conversations with a family friend:

Speaking to the friend caused them to say maybe he [the child] has got ADHD. But in actual fact, I really don’t think he has, and the last thing you’d want is for this kid to go on unnecessary medication PTGP04

He went on to explain that after receiving consent from the child’s parents to contact the child’s school:

[I] spoke to his teacher and actually this was an example of where the school actually had a really good handle on him. The teacher said he’s a lovely kid… He just isn’t set up for rules so there was nothing he’s doing at school that would make me worried. He’s a lovely lad, and you can engage him, and he can concentrate and focus when he wants to PTGP04

In contrast, however, there was a least one instance where a GP’s decision to refer seemed to be based predominantly on parental insistence, rather than clinical observations or judgement:

[Refers to another family member] seemed to know it all. [Parent] was saying that they thought the child had autism on the basis that [the child is] behind with learning, not reading and writing yet, didn’t like social situations…[…]…. And they said that the school didn’t think the child had autism. So, I have referred… I mean [the child] seemed normal, sat doing not a lot, but seemed normal. PTGP05

Subsequently, this participant indicated that the chances of the referral being rejected were ‘100%’ due to the configuration of local referral pathways. When this happens, he explained he would urge the parents to go back to the school.

Tacit information: GPs also often drew implicitly from the language of folk psychology regarding typical and atypical child development. Phrases such as ‘a little odd’, ‘just isn’t what most children do’ or ‘clashes with normal expectations’ can be found throughout the data. These were often used in reference to a specific marker or behaviour, such as ‘rituals and behaviours that weren’t quite in keeping with a normal child of her age’. Here, the term tacit knowledge is used broadly to refer to practical or soft knowledge that is not easily quantifiable.

Clinical intuition was important for deciding between typical and atypical development, but at times, challenging to articulate:

As a GP you get a subconscious idea of the spectrum of the range with children - from the kid who’ll sit there like butter wouldn’t melt in their mouth, like a bit oddly so, to the kid who’s climbing up your curtains. [And] You get a feel of parental interaction, with ‘you stop doing that now I’ve told you before’ to the parent who just watches the child smash your ophthalmoscope’ PTGP04

I think it’s difficult, sometimes, to describe what turns into a kind of sixth sense. Really you get a clue, don’t you? And sort of that kind of gut feeling, but it is about the behaviour. PTGP07

Prior knowledge or experience with specific children and families was also crucial for several GPs. When reflecting on cases, it was not uncommon for practitioners to preface conceptualisations with remarks such as ‘I’ve known him since… well antenatally’, ‘I know the family’ or ‘[Mum/Dad] is also my patient’. This seemed to offer a degree of context and explanation for the child’s presentation. For instance, when describing children with a query of a neurodevelopmental condition, some GPs remarked on traits they had seen in other family members or diagnoses of other family members they were aware of.

GPs were also attuned to socioenvironmental or parenting factors that might be contributing to the child’s presenting symptoms such as discrete participating events, parental separation or conflict. Having this overview of the patient was, for many, one of the core strengths of general practice:

I suppose this is where Family Medicine really comes into its fore, isn’t it? Because they’re [both child and parents] usually, not always, but usually all our patients. So, sometimes we have this interesting dilemma about whom is the patient. PTGP07

Yet this expertise, some felt, was not always appreciated by colleagues in specialist services. When reflecting on the experience of having referrals rejected, one GP remarked:

I sometimes wonder whether they [specialist assessment service] actually consider the family factors that we know of that we write in out letters PTGP03

Perceptions of the new referral pathway

Most of the GPs were aware of the changes to the assessment pathway that meant referrals for neurodevelopmental assessment typically come through schools or health visitors. However, it was unclear whether two GPs were aware of these changes. Three stances to these changes were identified in the data: accepting, ambivalent and critical. Practitioners who were more accepting of the changes tended to reason that schools are better positioned to identify such developmental conditions:

Well, you see I think community paediatrics probably has a point. Because small child gets brought in to see the doctor and they’re looking around looking reasonably normal but what do I know. Whereas the school and other people that interact with the child over a long period of time are in a better position to make an assessment than me. PTGP05

They’ll [schools] be better at recognising it than me, so I’m happy, doesn’t matter where the referral comes from, as long as it happens in a timely way it doesn’t have to come from a GP. PTGP06

One participant had a more ambivalent attitude. For this participant, there was an acknowledgement that schools are often well-placed to identify atypical development. Still, they maintained that limiting the ability of GPs to refer put them in a challenging position:

Difficult. Because you can see the logic in that, actually there’s so much more to this than having a name put to your child’s odd behaviour very few of these children will benefit from something medical…[…]… the problem comes really when a parent comes in and says I’ve been to the teacher three times, and the teacher says they think he’s fine and if you’re really worried you can go and see your GP. Because you’ve no idea did the teacher really say that. PTGP04

While one GP was critical of the pathway:

Just a disaster, just a road crash really - trying to get children seen with developmental or behavioural problems is increasingly difficult, and in fact, for many patients, we end up having to go if they’re school age we end up having to go through school…[…]… And that’s a real nightmare for me because it means I’m having to delegate that to a third party who is not actually a health service PTGP07

This GP felt that the pathway was also a threat to professional status and identity, reflecting a devaluation of primary care.

Professionals in the neurodevelopmental services tended to view the changes as positive. Professionals in the neurodevelopmental team reported on the impact these changes have had on service-level pressures, including waiting times for assessment:

We’ve got the shortest waiting times for assessment for autism and ADHD. Less than eighteen weeks, whereas they were eighteen months to two to three years [before] PTND01

Specialist views on the role of GPs

When asked directly whether GPs had a role in identifying developmental conditions, most specialists indicated that there was indeed a role for GPs. Yet this was often couched with an array of caveats about professional and organisational barriers to identification. The most common barrier, according to the specialists, was the duration of primary care consultations and a lack of training or knowledge about neurodevelopmental conditions:

They need to be given more time to do it properly and more training. They get very little training at all really but if they got proper training and given a bit more time. Even fifteen-twenty minutes, but at the moment all they could do is to at least know the NICE guidance and know what are the signs and symptoms and take a detailed history and follow the local pathway really. Clearly, if we have GPs with a special interest in children, they got better training, and clearly, they have a lot of role to play with the ADHD medication shared care and those kinds of things. PTND01

At best, what they should do is make good referrals to specialist teams. But beyond that, I don’t know if it would be useful for people who are under massive strain and pressure and who have like whatever is it eight to ten-minute appointments, I hear that’s the average, but I’ve never had any more than six min really, so I mean I don’t know how you could do anything bar account for the family’s request and signpost them to the appropriate teams. PTND07

A lack of training was also framed as problematic by one GP:

I think also in terms of what we get taught. It may change now obviously. I trained thirty years ago literally we had no training at all…[…]… We’d all heard of autism but everything I know about neurodevelopmental disorders, not that there’s much of it, has been acquired post-grad. PTGP04

References to the time afforded for consultations can also be found throughout the GP interviews. For some, this was felt to be a significant barrier to identification. To circumnavigate some of these challenges, one GP described bringing families back for multiple consultations.

Information sharing as a barrier and opportunity:

Another topic that runs through the data is the importance of informal networks and the issues with sharing information between services. In general, informal networks could be described as internal and external. Internal networks mostly consisted of practice staff, including administrative staff, GP colleagues and nurses. By contrast, external networks consisted of educational professionals and colleagues in secondary care. Due to the reconfiguration of primary care services, health visitors seemed to occupy a position between these two networks:

We used to have Health Visitors attached to the practice, but they don’t exist anymore. I don’t know who our Health Visitor is. I’ve never met them. PTGP05

Meanwhile, most GPs acknowledged that nursery staff, primary school teachers and other educational professionals were essential sources of information when thinking about child development. Yet the lack of a linked system for educational and primary care records presented challenges in terms of sharing this information:

We have occasional contact with schools but not very much. Not often. I’d be unsure about the boundaries and confidentiality and things like that, to be honest. PTGP05

There also seemed to be a lack of communication between GPs and specialist services:

It’s so difficult because you know you’ll write the letter, but you don’t know if they’ll actually get any help or whether they’ll get put on the waiting list or whether someone else will monitor the child. So that’s the tricky bit, really. PTGP03

let’s say we’re querying autism they [neurodevelopmental team] would send the referral back. And say it needs to be referred through the school which is quite doable because quite often they have started with the school. And the school have said have you seen your GP and of course then it looks like passing the parcel. PTGP04