Evidence submitted by beat (NICE 06)
1. As the Eating Disorders Association,
our name until February 2007, beat staff, volunteers and members
were involved in the development of clinical guidelines for eating
disorders published in January 2004. Chief Executive Susan Ringwood
was a member of the Guideline Development Group and is currently
a lay member of the NICE Topic Consideration Panel for Mental
Health. These comments refer only to our organisation's experience
of NICE in relation to eating disorders.
2. The guidance development process was
lengthy, but also very thorough. The outcome was a set of comprehensive
recommendations which we were very willing to endorse and help
3. Thoughtful consideration was given to
representing the experience of treatment and care. Patients' views
as well as those of care givers were sought and included in the
final guidance documents. Members and stakeholders who had been
sceptical about the guideline development process and even doubtful
about the genuiness of the invitation to submit views were ultimately
impressed by the outcome. Several individuals took the time to
contact us and say that their opinions had changed and become
more favourable towards NICE as a result.
4. We find that having guidelines to refer
to is helpful in both raising awareness and in assisting families
and individuals seeking appropriate treatment. Unfortunately,
however, too many families still report having to make an individual
case for treatment, especially where there is no locally available
5. We have families reporting conversations
with their GPs that include statements such as "but of course,
these are only guidelines, not requirements". Others have
been told "the evidence in the guidelines is only expert
opinion, and my clinical judgement is just as valid".
6. We recognise that we are more likely
to hear from people whose experience of care has been less than
ideal, but this still happens far too often. This could be one
factor that leads to a loss of confidence in NICE by familiesthe
failure to fulfil the promise raised by the guidelines' publication
and the notion that guidance is not a requirement.
7. One area where we are particularly disappointed
and have been critical of NICE is in the implementation of guidance.
Not only in relation to the points made in paras 5 and 6 above,
but that the need for a focus on implementation came rather late
onto NICE's agenda. We have contributed to the implementation
by publishing information for patients and carers. Together with
the Collaborating Centre for Mental Health, we were awarded a
BMA Patient Information Award for our NICE guidance information
8. The full implications of implementation
have also provided problematic to scopeparticularly when
training or professional development of staff is a necessary feature.
An example from the eating disorder guidance is of Cognitive Behavioural
Therapy. CBT is strongly recommended as the evidence based treatment
of choice for people with bulimia nervosa, yet there are far too
few qualified CBT therapists to provide this intervention. The
Government's recentwelcomecommitment to increase
the training in CBT lagged far behind the guidelines' publication.
9. An audit of clinical pathways and entry
into specialist services for eating disorders published in February
2006 by the NHS Audit, Information and Analysis Unit revealed
some very stark data. The researchers found that none of the 1,275
GPs surveyed were using NICE guidance of protocols of treatments.
In depth interviews with primary care physicians revealed a number
(i) ambivalence towards the use of guidelines
in primary carea feeling that protocols did not fit with
the ethos of general practice by placing restrictions on clinical
judgements and skills;
(ii) the multiple and sometimes conflicting
clinical and service priorities faced by general practitioners.
GPs feeling overwhelmed, without enough time to review the number
of guidelines; and
(iii) for eating disorders specifically,
the relative rarity of presentation in primary care was felt to
be a significant issue in that the guidelines are more likely
to be overlooked if not consulted frequently.
10. Given the vital role of GPs in diagnosing
and providing access to secondary and specialist carethis
ambivalence and sense of burden that NICE guidance places does
need to be addressed with some priority. A suggestion is that
summaries of primary care specific guidance be drawn together.
Chief Executive Officer, beat