Nice guidelines on adhd - helpline booklet

An overview of the NICE Guidelines on ADHD published in
September 2008.
By Professor Eric Taylor
What is NICE?

NICE is the National Institute for Health and Clinical Excellence. It produces both
“technology assessments” – which say what drugs or procedures represent good value
for the NHS and should be provided - and “guidelines”, which are fuller sets of advice
about how the NHS should go about providing good services for particular conditions.
The technology assessments have statutory force; and in 2006 one was produced
about drugs for ADHD, saying that methylphenidate, dexamfetamine and atomoxetine
were all recommended. This is helpful to families, and means that all three should be
available. An assessment like this, however, does not say when or how or for whom
the treatment should be given. These important details are the business of the
guidelines recently published.
NICE Guidelines are advisory and do not have legal force – but they are very
influential about how health technologies should be provided and what the priorities
should be in service planning and delivery.
The Process of NICE

The process of drawing up guidelines is long and complex. Impartial reviewers search
the scientific literature for all the relevant papers, criticise them all, and put them
together to see what conclusions can be made on the basis of the science. A panel of
clinicians from different disciplines, service users and carers then interpret the
research to make recommendations about what should be done.
Independent economists work out how much different sorts of treatment cost and
from that, and the trial evidence about their effectiveness, what represents a good buy
for the health service. There is then a process of consultation. There were hundreds of
comments from many shades of opinion and they were all considered. Finally the
guideline is published, on paper and on the web.
No health service can afford every possible treatment for every condition, so priorities
have to be set out. NICE has to work out not just what is ideal but what is realistic.
This can be a painful process, but as far as possible, the NICE process tries to remove
bias and personal opinion and to base recommendations on public and verifiable
The first question NICE asked was: “Is ADHD a valid diagnosis?”

The answer will seem totally obvious to many families - but there is a great deal of
public controversy, because of the fear that ordinary childhood naughtiness is being
medicalised into a sickness and worries that psychotropic drugs are anyway a wrong
way of dealing with children’s problems. So the NICE process applied the criteria
used scientifically to determine whether a mental state really is a disorder – and the
result was clear. ADHD is real and the health service should treat it. This was a
considerable step forward, and makes it much harder for a service to say that there is
no such thing or that it is all a matter of bad parenting.
What the guidelines say about treatments for children

Severe ADHD

The first-line treatment for school-age children and young people with severe ADHD
and severe impairment is drug treatment. If the child or young person and/or the
parents or carers reject this, a psychological intervention may be tried but drug
treatment has more benefits and is superior to other treatments for this group.
The first choice of drug is usually methylphenidate - either an immediate-release
version, Ritalin or Equasym; or an extended-release version, Concerta XL, Equasym
XL or Medikinet. There may be a preference for atomoxetine when tics, Tourette’s
syndrome, anxiety disorder, stimulant misuse or risk of stimulant diversion are
present as well – the choice is rather evenly poised. Atomoxetine will probably be the
best choice if methylphenidate has been tried and has been ineffective or
unacceptable. Dexamfetamine has much less evidence about it, and we do not know
as much about its safety, so it is usually kept in reserve for when other treatments do
not work.
The decision to go on to medication is a big one, because the therapy is likely to go on
for years, and no medication is totally free of side-effects. A definite diagnosis, and a
decision to recommend medication, should therefore only come after a full
assessment. This needs to be full enough to uncover other problems if they are
present. Sometimes what looks like ADHD can come about because there is a
different kind of learning problem at school, or the child is feeling very insecure, or
there is another physical illness. All these problems need to be found and helped, if
they are there. The guidelines also say that medication should not be the only
intervention given – there should be information for all concerned, including teachers.
There should also be the offer of psychological interventions – especially, parent-
training programmes, and CBT and/or social skills training for children of school age.
Moderate ADHD

Fortunately, not all cases of ADHD are severe. Indeed, some young people find they
can manage their lives satisfactorily even with the condition.
When the impairment is only moderate, or less, NICE puts the treatments in a
different order. It reviewed the trials of psychological ways of helping and found
some of them to be useful and cost-effective. The recommendation was therefore that
“Group-based parent-training/education programmes are usually the first-line
treatment for parents and carers of school-age children and young people with ADHD
and moderate impairment.” Medication then has a secondary place – it should be
provided if and when the psychological interventions have not worked well enough
after a reasonable try - ideally, 8-12 sessions. Some families, of course, will not want
to take up the offer of a training programme; and some will find that it is not available
yet. Medication is then the treatment of choice for school- age children, even for those
whose severity is “only” moderate. But medication is not usually recommended
before school age – the adverse effects appear to be worse and the safety is unclear.
What about education?

NICE has indeed provided evidence and suggestions about how important it for
schools to recognise ADHD as a problem and how effective it can be to apply
understanding to management in the classroom. This was unusual for NICE, because
its key purpose is to set the agenda for what the NHS does and it is not part of the
education system. The recommendations, therefore, may not carry much clout, and
school systems vary greatly in the extent to which they regard ADHD as their
What the guidelines say about treatments for adults

NICE recommended that adults with ADHD should also have the benefit of
assessment and treatment. This is a far-reaching conclusion, and should lead to a
radical change in mental health practice, with adult psychiatry taking on ADHD as
part of its remit.
The precise recommendations were tentative, because there is much less research to
draw on about adults – and one NICE conclusion was indeed that more research was
needed about treatments for adults. In particular, there is little trial evidence about
psychological treatments. This does not necessarily mean that they are ineffective –
simply that we cannot be sure that they work, so cannot yet give them priority for the
NHS to provide.
The key conclusion is therefore that drug treatment is the first-line treatment for
adults with ADHD with either moderate or severe levels of impairment, unless they
would prefer a psychological approach.
Transition to adult services

It will take some time before adult services have moved to take on these
recommendations, but there is active training in place and a great deal more interest
than was shown before the guidelines appeared. In the meantime, there are many
teenagers who have been helped by treatment, who are moving outside the ambit of
child services, and are quite unclear about where to turn for guidance and
prescription. In many places they are dependent on the good sense of their general
practitioner, without much in the way of specialist backup.
The NICE guidance is clear that transitional arrangements need to be developed. It
also recognises that the exact details will vary from place to place in the light of what
has already developed. In some parts of the country adult psychiatrists are already
comfortable with treating ADHD. The transition from child to adult services will then
need the child and adolescent service to plan ahead, alert the adult service before the
age of transition - usually the eighteenth birthday - and draw up a care programme
In other parts of the country there is little expertise in treating adult ADHD. Those
services may well decide to set up a specialist ADHD clinic so that expertise can be
developed and diffused into general mental health services. In other areas again the
paediatric or child mental health services are already continuing to treat their patients
even after the age of 18 years.
NICE is therefore recommending that each region should set up a planning group to
make the best use of the local resources and skills and make sure there is a continuing
care pathway into adult life for people who need it.
What has the response to NICE guidance been?

The implementation process is just starting, but many NHS Trusts have already
started to audit their provision for children against the guidelines and train adult
mental health services.
Education does not seem to have reacted so far; but the guidelines group did make it
clear that there would be benefits in training teachers about ADHD.
The media response has been rather paradoxical. Journalists picked up the message of
limiting the first-line use of medication to the more severely affected – but amplified
it into a warning against using drugs at all – and stimulants in particular. This has, in
general, been in a tone approving the advice - which is a welcome change for NICE -
and expecting a reduction in medication to follow – though in fact the effect of the
recommendations is likely to be to increase the availability of medication.
Indeed, where there has been dissent it has been on the grounds that NICE did not go
far enough and should have banned the use of medication entirely. This anti-medical
view has been linked to the allegation that a large-scale trial in the US - the
Multimodal Treatment Study of Children with ADHD (MTA) - has shown no long-
term benefit attributable to stimulant treatment. It is an allegation that is not actually
true but came with the backing of the BBC’s powerful Panorama programme.

By contrast, the other message from NICE - that ADHD needed more, not less,
recognition and treatment - did not feature in most journalists’ responses. It is
therefore likely that those who get their information from the mass media will have
received an unbalanced account.
What the NICE Guidelines mean for families

The implications for families will be gradual, as the recommendations are introduced
into practice. Families should be able to expect a planned pathway of care. Primary
care will have a role in detecting that there is a problem, and referring on to
paediatrics or child/ adolescent mental health. Without waiting for the specialists to
make a full assessment and diagnosis, there should be access right away to parent
training programmes. These will not necessarily be specialised for ADHD, but will
include the ADHD symptoms as well as the other behaviour problems for which
families seek help.
The next level of specialist care, will diagnose, assess for other problems and start
specific treatment - usually behaviour therapy or medication. When medication is
established and the dose is right, then the clinic will usually refer back to the general
practitioner for continued prescribing, and monitoring of growth and blood pressure,
with periodic review at the clinic to check on physical health and psychological
There is now a great deal of work to do in getting the recommendations of the
guidelines to be adopted in practice. The guidelines are not a dramatic innovation:
what they describe is already being provided in many parts of the country, and this is
as it should be. But they should be very helpful for extending good practice more
widely – and the development of services for adults should be their most novel
How to access the NICE Guidelines on ADHD

The NICE Guidelines on ADHD CG72 are available in a number of formats.
How to order
• You can download them from the NICE website • Order printed copies of the quick reference guide by calling NICE Publications on 0845 003 7783 or emailreference N1684 • They are also available as a slide presentation at:



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