Ministry of Health's Framework for Eating Disorder Services in New Zealand

NATIONAL FRAMEWORK FOR EATING DISORDER SERVICES: FEEDBACK FROM THE EATING DIFFICULTIES EDUCATION NETWORK

INTRODUCTION
EDEN fully supports this initiative to review service specifications and address how to meet gaps in service delivery for people with eating disorders in New Zealand. It has been clear for some time that services and funding for eating and body image issues has been inadequate in this country. A review of the current situation, agreement on a framework for service provision, and implementation of comprehensive national and regional services is well overdue. It is a relief that this issue has now been firmly placed on the Ministry of Health’s agenda. The Framework emphasises the importance of providing comprehensive support and treatment for disordered eating throughout New Zealand and highlights the need for early intervention for those requiring assistance. Given the significant contributions that NGOs make to service provision in this area – and especially early intervention services – EDEN feels that a more representative national focus group for the development of the consultation document could also have fruitfully included members of the two non government/non specialist organizations that provide valuable services in this field, alongside those from the regional specialist services. Without doubt, non government organizations who work at a grass roots community level and who deal with those who self-refer for disordered eating (often before it has become anorexia or bulimia nervosa), hold a unique perspective on many of the issues relevant to this review. An important component of this perspective that could usefully be incorporated into discussions and decisions about the framework is the advocacy role that NGOs often fulfill for those in the community seeking support.

EDEN’s work in the field of disordered eating centers largely upon providing support, education, and counseling for those with subclinical or EDNOS conditions, rather than for those in serious health or life threatening situations. As such EDEN’s feedback mainly focuses upon those aspects of the National Framework document concerned with the role of early intervention service provision including related support, education, self-help and therapeutic activities, rather than issues related to tertiary and inpatient/residential services.

EDEN’s comments are laid out below under headings that correspond with those that appear in the Framework.

UNDERLYING PRINCIPLES (p.2)
EDEN supports the inclusive focus outlined in the underlying principles of the document which includes families and whanau. In our experience and in the research literature, it is not only those who are struggling with disordered eating who require support, care, information and education but also the friends and family who are trying to assist their loved one. Offering this support is essential not only for addressing the distress and bewilderment experienced by family and friends but also for supporting them to provide an environment conducive for their loved one’s help-seeking, treatment, and ultimately, recovery. Acknowledging that services must be provided not only for the individual with the eating disorder, but also for those supporting them, is essential.

The philosophy that access to primary, secondary and tertiary level services should be available to all people in need, should not just be a guiding philosophy in a theoretical sense but should actively inform all discussions and decisions about improving eating disorder services in New Zealand including the funding levels that are ultimately agreed upon for implementing the framework. There is a danger, given the (totally justified) urgency around providing treatment for those with serious and potentially life threatening eating disorders, to focus upon the provision of assistance for these individuals at the cost of a more holistic approach to the whole range of disordered eating problems. EDEN would encourage a focus upon and commitment to, early intervention and the provision of a range of support services for those with EDNOS alongside the much-needed tertiary services for those with anorexia and bulimia.

CURRENT SERVICES (p.6)
It is stated that in New Zealand people with an eating disorder generally receive treatment within a primary care or general mental health setting and that when an eating disorder is severe, input from a specialist service is an option. Based upon EDEN’s experience with clients in Auckland, some of whom contact EDEN after unsatisfactory help-seeking experiences, disordered eating and eating disorders are not always well managed in primary or general mental health settings. Furthermore it is often reported by clients that GPs especially are often not found to be informed nor helpful when approached about disordered eating or an eating disorder. These clients also relay to us the devastation they experience when attempting to access the only publicly funded eating disorder service in Auckland: the EDS. Treatment here is not an option for many who are desperate for assistance, given that the bulk of those suffering from disordered eating problems and risky weight management do not meet diagnostic criteria for anorexia or bulimia. Despite not meeting service entrance requirements, these EDNOS conditions nevertheless result in considerable distress and negative psychological and physical health impacts as well as being risk factors for the development of full blown eating disorders. These subclinical conditions can however be improved with access to counseling, support groups, self help, and other psychoeducational activities such as those provided by EDEN. However, current funding constraints prevent EDEN from offering this kind of vital early intervention support at the required levels despite growing demand for these from those in the community with EDNOS type problems. Access to generalist services such as those offered by EDEN in each of the four regions identified in the framework, should be a priority for a national framework of service provision.

OTHER EATING DISORDER SERVICES (p.11)
As previously mentioned, it would have been useful to outline in more detail the eating issues/disorder services offered by the NGO and voluntary organizations in New Zealand. It would be helpful for discussions about service provision, to have a more complete picture of the numbers of people seeking help, the type of support they are looking for, and the problems that they present with, by incorporating the perspectives of those working at community levels in these organizations. Undoubtedly, tertiary services that are accessed via clinical referral receive a very skewed picture of the types of difficulties encountered by those in the community and are less likely to be dealing with clients with ‘less serious’ disordered eating problems. Given that anorexia and bulimia begin with what might be characterized as ‘subclinical’ or EDNOS eating problems that often quickly progress to full blown eating disorders, incorporating the perspectives of agencies working with these subclinical groups, is important. Given the lack of research on all types of disordered eating in New Zealand, NGOs hold important information about the experience and nature of these problems at the community level. For example EDEN receives approximately 50 phone contacts per month and over 80 emails per month from people concerned about their own or another’s eating issue/disorder and receives approximately 500 website hits per month from those seeking information about disordered eating and available services. Including the expertise and experience of those working in NGOs should be a priority moving forward to the next level of consultation and decision-making with regard to the national framework.

PROPOSED NATIONAL FRAMEWORK for SERVICES:
OVERVIEW (p.12)
The bulk of the clients that contact EDEN (including those with subclinical eating issues and anorexia and bulimia) do not reach the agency via primary care or other clinical pathways but rather via the EDEN website, through word-of-mouth or by finding the agency in the white pages. A considerable number also contact the agency via recommendations by the large numbers of organizations and individuals that EDEN networks with in the community including: Peer Sexuality Services, The Family Therapy Centre, Women’s Health Action, the various Women’s Centres, Citizens Advice Bureaux, Dr Fishman and Eating Disorder Specialists, schools in Auckland, Rape Crisis, Youthline, Community Alcohol and Drugs services and school guidance counsellors. Exploring pathways into specialist or generalist services in all four regions in light of this information would be an important consideration for the framework.

PRIMARY AND SECONDARY SERVICES (p.12)
EDEN agrees with the outline for local level service delivery and would strongly support the creation (or incorporation, where these services already exist) of two streams of service delivery. The existing specialist tertiary regional services are obviously best suited to offer treatment for clients with severe anorexia and bulimia and for those requiring tertiary, medical and/or inpatient and residential care and should be resourced in line with The Blueprint for Mental Health Services. In line with recommendations to treat clients in their own communities, this resourcing should allow each region to meet regional demand on tertiary services. However, given the large numbers of people with subthreshold disordered eating who seek support, and the importance of providing interventions as early as possible, more generalist agencies offering support groups, information, education, referral services, a range of counseling approaches and other therapeutic and care activities should also be developed/maintained and incorporated into the framework. In the Northern region, EDS and EDEN could serve these dual purposes referring clients between the two agencies as appropriate (please see the following pages for an outline of the ways that EDEN is currently meeting several of the framework’s goals for generalist service provision). The Midland Region requires the development of both a specialist and a generalist service, whereas in the Central region the generalist and specialist service both operate successfully under the same NGO management in Wellington. Finally, in the South, Princess Margaret Hospital supplies the specialist tertiary services and the Eating Awareness Team (an NGO) provide many of the generalist services outlined above. Having adequately funded generalist services in each region (alongside a well resourced specialist, tertiary service) providing a range of early intervention support and therapeutic services to anyone who has identified an eating or body image problem (rather than turning those who do not meet diagnostic criteria away, as a too-tightly-applied diagnostic approach often does), is a vital ingredient for a comprehensive framework for eating disorder service provision in New Zealand. EDEN currently receives up to ten requests per month for low cost counseling services for eating and body image problems including the whole range of EDNOS conditions and anorexia and bulimia. Generalist services are also well positioned to provide a variety of support and information/education options as required and which potentially fall outside the remit of services offered by a tertiary service treating anorexia and bulimia. In terms of the current emphasis in the consultation document on the co-ordinating role to be played by specialist services in each region, this is an issue for further discussion given that it may be more beneficial for general and specialist services to work alongside one another but retain their autonomy from one another. Although both generalist and specialist services are subsumed successfully under one management team in Wellington, retaining the independence of generalist and specialist services in other regions is an important consideration as it will potentially enhance diversity for consumers/clients with regard to support/treatment options available and given the different client groups for each service. Clearly maintaining two services in each region would require careful consideration of how they might best work together including referral pathways, supervision, sharing resources, workforce development etc.

ENTRY POINT (p.12)
Please see above – EDEN often functions as a first point of contact for people with anorexia or bulimia and for those with a subclinical eating or body image issue who are seeking support. Many of those who contact the agency have not previously spoken with a health professional about their eating issue concerns.

TREATMENT (p.13)
In line with international research EDEN supports providing a multidisciplinary approach that incorporates a number of health professionals contributing to treatment/support. In line with this it is desirable to have a specialist service offering tertiary, medical, and psychiatric treatment alongside a more generalist service which is able to provide a range of therapeutic approaches including counseling, support groups, psychoeducation and information to family and friends. Given that research has yet to demonstrate that CBT is an effective treatment approach with anorexia, innovative counseling approaches (such as narrative therapeutic approaches that have anecdotally shown promise with disordered eating) could be included as part of the approaches offered by a generalist service.

ROLE OF GENERAL PRACITIONERS AND OTHER PRIMARY HEALTH PROFESSIONALS (p.14)
Please also see above. In EDEN’s experience (based on a significant proportion of clients contacting the agency following a GP consultation) GPs and other primary health professionals (in Auckland at least) are not effectively recognizing, assessing, managing nor referring clients with EDNOS, anorexia or bulimia. Given the specialised support/treatment required by those with an eating disorder or EDNOS it would seem more appropriate for GPs to refer to either a generalist or specialist/tertiary service in their region in the first instance rather than attempting to manage these clients alone or with limited input from an ED service. For those patients diagnosed with an eating disorder who are on a waiting list to access the tertiary service, GPs and the generalist services in each region could manage the clients together offering counseling, support (to both the client and family) and medical management as required prior to these clients transitioning into the tertiary service. For those clients who do not reach the diagnostic criteria for anorexia and bulimia, and who therefore do not qualify for tertiary/specialist treatment, referral to a generalist service for EDNOS seems the most prudent action rather than sending them away with no support which is what is reported to EDEN in many cases. Generalist services have a vital role to play here and referral pathways and relationships between GPs and both services in each region should be a priority for the framework.

LINKS TO SPECIALIST SERVICE (p.14)
Given the different client groups and services provided by specialist and generalist services it would be useful to have links between both of these arms of regional service provision and the DHBs. Having a representative from the DHB liaising with each of these services re areas of operation, supervision, training, advice and referrals, would support the development and implementation of comprehensive services addressing EDNOS, anorexia and bulimia and would also enhance the likelihood of seamless service provision and adequate coverage of the range of disordered eating problems.

MANAGEMENT AT LOCAL LEVEL (p.14)
As outlined, management at a local level would be greatly enhanced by the development (or maintenance in cases where these already exist) of generalist services able to co-ordinate and offer a range of support, self help, counseling and information services in each region for EDNOS alongside the tertiary/specialist services and potentially referring into these when contacted by those with anorexia and bulimia. Given generalist services’ outreach activities, close connections with the community and their networking with other NGOs and community health organisations they are well positioned to operate and provide services at local levels.

SPECIALIST (TERTIARY) SERVICES (p.15)
It would be useful to add another role for specialist services here: referral of those clients whose eating difficulty does not meet service entry criteria, to generalist services where these individuals can access other support services and counseling. Furthermore, with regard to research and patient follow-up, this is clearly an important role for specialist services however generalist services might also usefully be supported to effectively analyse and report the statistics that they keep on client contact, help sought, support provided, and outcomes.

ACCESS (p.15)
EDEN supports the aim of ensuring that every person has access to a specialist eating disorder service in each of the four regions. However, as discussed under previous points we would emphasise the importance of also offering generalist services for the bulk of those with disordered eating problems who do not meet specialist service entry criteria. Not to do so, risks excluding an important proportion of those who, although not requiring immediate medical or intensive psychiatric treatment, do require timely access to specialized support that is responsive to their needs. Only focusing on services for those at the tip of the clinical iceberg does not meet the goals outlined in the framework for a comprehensive national framework.

PURPOSE OF INPATIENT CARE (p.17)
The hidden physical health dangers of bulimia nervosa (electrolyte imbalances, gastric disturbances, kidney failure, dehydration, metabolic complications, blood pressure problems) may not represent as urgent a threat to life as emaciation. However it is important to consider that patients with severe bulimia, who may not have severe weight loss, may also require hospitalization.

POSSIBILITIES FOR OBTAINING EQUITABLE INPATIENT SERVICES (p.17)
In line with commitments to treating patients as close to their homes as possible, but taking into account the level of demand for inpatient services as opposed to day patient and residential services, it would seem most useful to have specialised inpatient beds available in both the north and south islands. Clearly staffing issues for this option need to be discussed. Furthermore, it would be important to have the option of buying inpatient beds in other regions should demand on the main north and south island specialized beds be too great.

CHILD AND ADOLESCENT ISSUES (p.18)
EDEN receives several enquiries per month from parents of children with eating difficulties and eating disorders. We strongly support the clarification and integration of available services within non specialized agencies, into a national framework.

ETHNIC AND INDIGENOUS POPULATIONS (p.19)
This is an area that requires immediate and urgent attention in order that knowledge about prevalence, experiences of and appropriate treatment approaches for eating disorders among Maori and Pacific Island people is gained. Research with these populations is well overdue and should be conducted in culturally safe ways by appropriate researchers in these communities. This is a pressing issue that must be addressed in order that eating disorder services can provide culturally sound and safe services. Furthermore, Maori and Pacific Island health professionals should be recruited to staff eating disorder services throughout the country.

SPECIALIST AND GENERALIST SERVICES (p.19)
This point has already been discussed at some length under previous headings. To reiterate, EDEN strongly supports an approach to eating disorder service provision that encompasses a focus upon treatment for anorexia and bulimia as well as services for those with EDNOS and community outreach activities. The most useful way to proceed would seem to be to develop two services in each region working with these two client groups while also strengthening relationships between these service arms.

OTHER DISORDERS (p.19)
Binge eating disorder (categorized under EDNOS) and apparently increasing in prevalence, is a common difficulty that clients seek support for from EDEN. As is pointed out in the framework binge eating disorder does not meet service entry requirements at tertiary eating disorder services and as such, this problem might be well suited to more generalist service support.

RESEARCH (p.20)
Funding research on the epidemiology, course, treatment options and treatment success rates in New Zealand should be a key priority. Research of this kind is well overdue and the lack of knowledge about the NZ context affects the confidence with which we can design and offer eating disorder services. This is especially true with regard to Maori and Pacific Island communities.

NATIONAL ADVISORY GROUP (p.20)
A national advisory group providing opportunities for communication across services would greatly enhance the successful implementation of the national framework for eating disorder services in New Zealand. This advisory group should include representatives from those NGOs currently working in eating disorder/eating difficulties service provision.

ADVOCACY (p.21)
Support groups for people with disordered eating are a key EDEN service and one that should be developed as part of funding a generalist service in each of the four regions. EDEN is constantly contacted by individuals wanting support groups which are reported to be a useful self help initiative for those with disordered eating. Relatedly, EDEN already plays a significant role in acting as an outlet for feedback from clients about their help-seeking attempts and their treatment experiences for disordered eating and this information should be fed back into the national advisory group.

SERVICE SPECIFICATIONS (p.21)
Adequate consultation between DHBs and regional purchasers should take place to ensure that both specialist/tertiary and generalist/early intervention services are adequately funded in their areas to adequate levels in order that each can provide the coverage outlined in the framework. Care should be taken to ensure that service provision (such as a generalist service) does not miss out on funding due to it being considered by regional purchasers as a DHB responsibility and by DHB’s, a regional responsibility.

CONCLUSION
In summary, EDEN is pleased that eating disorder services in New Zealand have been identified as an essential area for review and that there is a commitment to drafting a National Framework for service provision. As a community organization working in this field in Auckland with some 16 years experience, EDEN holds important perspectives relevant to the discussion of the consultation document and the drafting of the national framework. We very much hope that the feedback that has been supplied will be carefully considered and incorporated and we look forward to taking part in the National Advisory Group moving forward.