The BBC carries an interesting piece on the dilemma that faces parents whose children have been diagnosed with ADHD
and who face exclusion from schools that are unable to deal with their medical needs. The piece does not cite a source but uses the common estimate that up to 1 in 20 children have ADHD.
A recent survey by the National Attention Deficit Disorder information and support service found the exclusion rate for children with ADHD was 10 times higher than that of those without.
Some parents have told the BBC they were told to give their children medication or keep them at home, and that they often felt they were being denied a proper education.
The Radio 5 piece about ADHD
is interesting and irritating (I particularly object to it being called The High Life
as this frames the debate in an unhelpful context).
One maddening abuse of statistics in the programme was the shocking news that almost 50% of children are "denied an education" because they've been excluded because of their ADHD. Well, some of them may be permanently excluded, but not all of them. Some of them are excluded for 1 week or more before being accepted back into school. [Later correction: on listening to the programme again, at around 37:56 the journalists do mention that 40% of children are 'fixed-term' excluded and 11% are permanently excluded. In my own defence, it was easy to miss and there was no mitigation of the rather bleak summary given at the top of the programme.] The other statistically irritating point was the reference to the 90-fold increase in the number of prescriptions: there was no attempt to correlate this with any formalisation of ADHD diagnostic criteria or whether this had happened because doctors had been issued with new guidance.
Early on, the dire warning that ADHD medication can kill was highlighted but there was no attempt to give the number of children who are affected by this and the information that this may be related to a pre-existing heart condition was given later in the programme. I had some sympathy for the argument that we do not understand the long-term impact of prescribing these drugs to children. However, I do feel that it is very alarming for parents to hear these warnings in the absence of any immediate discussion that at least estimates the risk.
As ever, Dr. Timimi
was interesting. The other experts and parents put up a defence for the value of the drugs with the usual argument that ADHD is under-diagnosed. However, I was very surprised to hear Linda Shepherd criticise Timimi with the claim that he should base his comments on "scientific fact rather than propaganda". Dr. Gringras did argue that more children would benefit from medication but we were not given enough context to understand his stance. I did like the fact that he couched his support for medication as contingent upon adequate diagnosis with the exclusion of other disorders and agreement with the parents. Unfortunately, from my perspective, he did not discuss his work on sleep disorders and the diagnosis of ADHD
in this programme.
There was a claim that prescribing guidelines are being ignored and that parents are not being told about behavioural management techniques or given nutritional advice: drugs are being used as the first treatment option rather than a last resort. I would have liked some indication that there is a published literature that supports the efficacy of these management techniques. I'd have liked an exploration as to whether or not there is access to the necessary support and services in all health regions. It would have been good to have an indication what the scale of provision would need to be for the claimed 400,000 children with the diagnosis and what this would cost. I don't expect parents to be able to estimate such costings, but it is shoddy journalism to make such allegations (no advice on alternative strategies) without discussing what the implications would be for service provision and their costs. The one justification that we had for the claim was Mary Rhodes(?) saying:
To put it bluntly, these guidelines seem to be pointless. Part of the problem is that the alternatives to the drugs simply aren't on offer in some areas. For example, the NHS admitted to us that there's no provision of alternative therapies at all, anywhere, in the whole of Scotland. So parents are resorting to private treatment instead, if they can afford it.
We heard that there was no access at all to alternative therapies in the whole of Scotland but it was unclear what these alternatives were. Maybe I didn't listen properly but I would have liked these alternatives to be outlined. If Timimi discusses alternatives, I assume that he means behavioural strategies but it would be good to have had that confirmed.
I was very annoyed by the piece about the Cactus Clinic
(around 17 minutes into the interview): either it was badly edited or the designated speaker was very disappointing. When discussing the Cactus Clinic, it seemed that these other alternatives
included nutritional interventions: the diagnosis of these was not detailed in the programme but the clinic website refers to nutritional assessment tests
that have little scientific credibility
. The website says that their 5 point treatment programme aims to:
- correct nutritional deficiencies/excesses
- reduce heavy metal toxicity
- eliminate food intolerances
- balance blood sugar levels
- supplement essential fatty acids.
The clinic website also refers to creating individual programmes for children with psychological, personal or educational needs, the Caregivers' Skills Programme
The Cactus Clinic was introduced as offering "pioneering nutritional and behavioural advice"; it was represented by Dr. Dave Woodhouse. I've already referred to the lack of evidence that we were given (annoying, if it was edited out). Dr Woodhouse said:
A nutritional approach does work in terms of the types of minerals that might need a supplement [slightly unclear]. There's a whole host of evidence that zinc is important, Omega 3 is important, magnesium is important, selenium is important. And when we look at the kids we get here, we find that these are a common thread that run through all the children. So, if you have time to go round and look at all this so-called scientific evidence then you will build up a picture that there is a lot of information, there is a lot of research out there that does indicate that a nutritional approach does work.
What "so-called scientific evidence" was he referring to - and where is this evidence that a nutritional approach works? The website refers to "heavy metal toxicity" but there is no information about how this is measured, or how the levels of heavy metals are reduced. The journalist refers to an 80% success rate but we hear nothing about how that was assessed and by whom? Did teachers and psychologists administer some of the standard scales? Did parents and children fill out questionnaires? Enquiring minds definitely need to know.
Why did Dr. Woodhouse refer to the NHS as having "only one approach to managing the condition which they call ADHD"? What does he
call it? If he is demurring from the DSM IV criteria, shouldn't the journalist have told us that? If the children who are accepted into the clinic do not have to conform to a standard diagnosis, then how can there be claims about improving children's ADHD symptoms? Dr. Woodhouse claimed that the NHS was failing to provide the multi-modal approach and
9 times out of 10 the only approach that parents are given [they say?] is, "OK, take this medication or don't take this medication.".
Around 25:30 minutes into the interview (post the news and sports break) we are brought back into the discussion with the assertion that it seems as if "the NHS is blinkered to anything other than the medication we've been talking about" and advocates medication as a first line approach.
Unless, I'm mistaken, Dr. Timimi practises in the NHS. Does he not count for the purposes of this discussion of NHS provision? Mary Rhodes again refers to the (private) Cactus Clinic and mentions that they carry out a range of tests for nutritional deficicies (without examining the value or accuracy of these tests or the proof that nutritional deficiencies are relevant). Mary Rhodes then says, "The Dept. of Health told us similar treatments should be available through the NHS". She then refers to the fact that the Dept. did not agree to participate in the programme. Rhodes did not do anything useful like assess whether or not these services are
available on the NHS, throughout the UK, by ringing around various health trusts or approaching any of the support groups. We were just informed that the Dept. had not been able to provide figures of expenditure that they had requested, so Mary Rhodes asserted that, "In reality [alternatives] are often just not offered".
I'm sorry to harp on about this, but there was no discussion about the nature or evaluation of these nutritional strategies. I was left with these questions.
- Can nutritional deficiencies be evaluated if we are not told whether they are looking at serological levels, intra-cellular levels etc.?
- Can intolerances and deficiencies be diagnosed reliably using the tests that are described on the clinic's website?
- What level of deficiency is clinically significant?
- Is there any indication that the children have an inadequate diet or a malabsorption problem (in which case - how is this addressed?)?
- Is there any peer-reviewed research that describes the protocol for correcting these deficiences?
- Is there any peer-reviewed research that reports trials in which this supplementation successfully reduced the symptoms of ADHD (ignoring the other related issues of understanding what the clinic understands as ADHD)?
Elsewhere, I have found an interesting overview of the nutritional work done by the Pfeiffer Center
. If the researchers for this programme had taken a look at this article, and the others in the thread, they might have been able to ask more critical questions about the nutritional strategy. At the very least, they might have picked up on the obvious point that amidst the unproven claims of behavioural improvement, the clinic was referring to those children who had passed its screening - rather than the standard population of children with ADHD.
There is a cursory discussion of the issue of prescribing ADHD medications to the under-6s that prompts the host to say:
It's curious isn't it? It seems as if doctors can almost do what they want here. Guidelines ignored, licensing rules broken when a child is assessed. All routes leading to medication. With a bit more time and investigation, alternatives could be found, perhaps. Shouldn't the NHS be monitoring the situation more effectively?
We did, predictably, hear from an MP who said that we need "to give parents and families the support they deserve" (for my knee-jerk response to this, see the Hoggart opposites question
). Linda Shepherd was allowed to state her view that parents do
research the options that are available and to highlight that the drugs make a positive impact on the lives of many people and have been investigated for their safety (albeit, it was probably not her responsibility to answer the earlier charge that we know little about the possible long-term implications of sustained use of the medication). She stressed that "the consequences of not treating the disorder can be very tragic".
When Timimi was asked why the 'alternatives' are not more widely available, it was obvious that he was unleashing a dam in the final part of the programme. Timimi said: that we had been
kinda swept along [with?] basically the drug companies' agenda...We've conceptualised these behaviours as being due to a sort of chemical imbalance or a problem in the development of a child's brain despite the evidence being, very clearly, that there is nothing to back that theory up.
There are no tests for ADHD and so figures like 5% and so on can be plucked out of the air because it just depends on where your definition is-your dividing line is-between the normal and the abnormal.
But in terms of alternatives, there are plenty of alternatives. Partly in terms of the whole cultural approach to this problem. So, for example, I think a lot can be done by turning our gaze away from looking for problems within the individual child towards looking for ways of developing our public health approach. For example, looking at diet and nutrition. Looking at working hours of parents, looking at support for parents. Looking at the problem of missing fathers. Addressing what's going on with school. Addressing bullying. Developing more healthy, active lifestyles. Greater community ownership. Looking at marketing and consumerism and advertising that targets children.
And also with individual children, there are plenty of alternative approaches from behaviour therapy, family therapy, nutritional therapies, various lifestyle interventions and so on. And certainly I've been able to practise like that successfully for many, many years. [31:20]
Timimi is an excellent writer. I understand that it can be difficult to put your viewpoint across on radio programmes for a general audience but he is sufficiently experienced as a public speaker to realise that unleashing a dam of possibilities that could not be discussed was inappropriate. Some of his points seemed a little off-the-wall because he did not put them into context. It would have been far better if he had acknowledged that there were many contributing factors in his experience, and then used the time that he had to give more detail about the interventions that he does
use in his own practice of children with ADHD.
A number of listeners had contacted the programme to express their viewpoint that ADHD "doesn't exist". Timimi dealt with by saying that parents who are struggling to cope with their children's very difficult behaviour might feel that such an attitude was an insult or a slight. He then went off at a tangent that probably didn't enlighten the listeners who had expressed that view.
It's not that ADHD doesn't exist. These behaviours do exist. They are a problem. And people need help with them and deserve help with them. The problem is that we think of ADHD as being a result of a biological disorder and because we have this idea that it's a...This is the idea that's being promoted by the drug companies, that's it's due to some sort of chemical imbalance. That then promotes the market for a drug which is believed to, or promoted as, correcting this chemical imbalance. This is the bit that's nonsense. This is the bit that's simply not backed up by the evidence. [32:40]
I do not understand how this was an adequate response to the listeners. Nor why Timimi believes that telling parents they are gulled by drug companies into accepting the notion of a chemical balance, is less insulting to parents who have accepted medication for their children.
One listener questioned what the treatment was for, "other than to make life easier for the parents". Linda Shepherd replied:
The hard work begins for the parents once the medication is given. All of the things that you have tried from when these symptoms first showed themselves-you can then go back and repeat. And you will find that it is easier to work with the child. But you have to be consistent. Medication does not make the child behave. We shouldn't be letting children believe this.
Linda Shepherd says that
It was good of Mr. [sic] Timimi to some back and say...that he didn't think we should be saying, or anybody should be saying, that ADHD doesn't exist. But that's actually what he says. You know, most of his papers call it bio-babble and it doesn't exist. [34:30]
(For a discussion of biobabble, see post 4 in this thread
The question of the pressures on the education system had very little coverage within the programme.
Although there's been an increase in the number of children with ADHD, there hasn't been an increase in support or training for teachers. So, as a result, some schools simply aren't equipped to deal with the special needs of these children and are resorting to exclusion rather than dealing with the problem.
Now, this sounded like commonsense, but where were the figures to support these assertions? The 'exlusion expert', Peter Turner, was very upfront about only being able to talk from his own experience and not from any acknowledged research. I was pleased that he objected (albeit mildly, with a, "I'm not sure...") to Mary Rhodes' assertion that schools are "getting rid of these children with ADHD" [35:10]. Peter Turner did make the point that it wasn't ADHD that was leading to the exclusion of children, but the difficult behaviours that may be associated with it. He disagreed with Rhodes' assertions that exclusions are on the increase by saying, "Published statistics tend to suggest not...My personal experience, which is limited to one county, tends to suggest that, actually, they are".
Peter Turner did say that from his experience, exclusion was used as a last resort, and typically children with ADHD are allowed to stay on at school despite behaviour that would have led to the exclusion of children who do not have ADHD. The emphasis for the discussion was on the children who are excluded. It wasn't re-emphasised that 11% of pupils are permanently excluded (as distinct from the headline of 50% of children with ADHD who are excluded, the majority of whom are excluded for a 'fixed-term' that might be very short).
On balance, I don't think that any of the material would have been surprising to most people, particularly not those who already have some experience of ADHD as a parent, teacher, doctor, health worker etc. So, it didn't meet the need of bringing illumination to an informed audience, so how about to a 'not particularly well-informed audience'? Well, no. At no time was anybody asked to describe what appropriate provision of 'alternative options' would look like. E.g., how many specialist places in schools, with what level of support? How many more child psychologists or family workers?
Although Linda Shepherd, the parent who was interviewed throughout the programme, made the point that medication could not be the complete strategy for managing ADHD and there was a need for "a package of support", she wasn't asked to elaborate on this. Nobody, including the MP, was asked to cost their preferred approach. Indeed, MP Annette Brook was allowed to tell us that teachers need more support and continuing professional development without having to tell us how this would be funded, or what changes would need to be made to the educational system to allow smaller classrooms and suitable environments for children with ADHD. I was left wondering if she had any real understanding of the implications for school and classroom management of the "challenging behaviour patterns" that she so blithely discussed. We also had the usual political soundbite of, "Inclusion versus special schools-has the pendulum swung too far?". There was the usual reminder that inclusion is not "a cheap option" and needs to be well-resourced with no indication of how this could be funded or what it would cost.
So, why was this programme broadcast? The content wasn't novel or particularly informative. There wasn't enough space for Timimi to describe his argument as to why ADHD may be a social construct in some cases: at one point he reeled off a shopping list of public health and social issues that may contribute to ADHD in children, each one of which is probably worth its own programme to investigate. Timimi raised his familiar argument about ADHD:
There's an interesting question here as to whether there has been a real rise in these behaviours. Or it's just a change in the meaning that we give to these behaviours that has happened...I suspect there's a bit of both...The more we label children with conditions like ADHD, the more...teachers feel, in some way, these children have now a condition that requires an expert to manage them and lose their ability-even their commonsense ability-to just do the ordinary things to manage these children.
I admire Timimi, but, as with the MP, I did wonder if he had any idea what it is like to try and manage a class of 30 children with perhaps 4 disruptive children, who may or may not have a diagnosis of ADHD. Timimi was careful enough to decry others who seemed to insult or slight parents, but seemed ready to slight and insult the goodwill and competence of teachers.
There wasn't enough space for researchers or parents who disagree with Timimi to argue their position fully. I thought that the discussion of 'alternatives' was badly limited by the exclusion of the well-documented correlation of ADHD and sleep disorders: albeit, with the caveat that correlation can never imply causation.
Inevitably, there will be some transcription errors, but I have done my best to transcribe the relevant parts of the programme as faithfully as I could. Inevitably, any emphases are mine, but I did try to capture the speech cadence of the speaker. Timings are approximate and mostly appear in .