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 promote.

  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 specialist resource.

  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 families—the 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 literature.

  8.  The full implications of implementation have also provided problematic to scope—particularly 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 recent—welcome—commitment 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 of themes:

(i)  ambivalence towards the use of guidelines in primary care—a 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 care—this 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.

Susan Ringwood

Chief Executive Officer, beat

March 2007