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Northern Region Eating

Disorders Service

Plan

2008-2013

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Citation: Northern DHB Support Agency. 2009. Northern Region Eating Disorders Service Plan 2008-2013.

Auckland. Northern DHB Support Agency Ltd.

Published in 2009 by the Northern DHB Support Agency Ltd

PO Box 112147, Penrose, Auckland, New Zealand

ISBN 978-0-9864557-1-1

This document is available on the Northern DHB Support Agency’s website: http://www.ndsa.co.nz

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EXECUTIVE SUMMARY

In 2007, the Regional Service Planning Group Mental Health [RSP-MH] undertook a

review of the current Eating Disorders Service [EDS] to inform planning for future

service growth and design. The Northern Region Eating Disorders Services Plan 2008-

2013 draws heavily upon the work of that project group and the project report.

In January 2008, the Ministry of Health MoH released the Future Directions for the

care, management, and treatment for service users with Eating Disorders in New

Zealand. The MoH document identifies that the biggest gaps and the most significant

challenges are in providing services for children and young people. The incidence of

serious eating disorders is relatively low; however the impacts can be extreme. In

addition to the significant suicide risk of individuals, there are serious medical

complications associated with eating disorders. A small percentage of people will

require inpatient/residential episodes for specialist treatment and/or medical

stabilisation. Improving the likelihood of better outcomes is possible with dedicated

environments, specialist staff, and when inpatient/residential services are part of a

continuum delivered across multiple levels.

The findings of that initial review of EDS in 2007 saw RSP-MH signalling support for

enhancements and developments across a continuum of care to complement the existing

services. RSP-MH (2008) initiated a regionally led project to pick up on the previous

project and draft a Regional Plan to meet Ministry of Health requirements and set

regional direction.

The current Regional Eating Disorders Services are funded for 18.8 Clinical FTE

(08/09), and provide an evidence-based outpatient treatment approach to the Metro

Auckland region. In addition EDS holds a contract to provide consultation, training and

supervision for staff in the Midland region, and offers uncontracted support to

Northland District Health Board [DHB] clinicians. There are no dedicated eating

disorder inpatient/residential beds in the Northern region.

The net increase in annual referral rates to EDS since 2004/05 [10.75%] has been from

the Auckland and Counties-Manukau DHB populations. Referrals arise predominantly

from within the 15-19 age band, and the most prevalent presentation is that of Anorexia

Nervosa.

The presentations of children and adolescents with Anorexia Nervosa require relatively

intensive treatment with extensive family and multi-disciplinary team support. The

majority of all referrals to EDS are under 24 years, female and of European ethnicity.

A recent trial of Community Support workers has been considered successful, and

advanced planning is underway for a Community Nursing role in the multi-disciplinary

team.

The challenges for the Northern Region to implement strategic development in this

sector are four-fold:

1. There must be some extra capacity found for the service to reduce the degree of existing resource consumed in crisis management;

2. There are opportunities for gains in both primary and secondary care but these will require ongoing commitment to support change over time;

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3. The gaps in the continuum of care at tertiary level frequently result in negative public attention, a limited range of service responses, and less than satisfactory outcomes;

and

4. There are considerable hurdles in aligning the diverse needs across the region for relatively small but costly specialist tertiary services.

Raising the capacity for primary and secondary level services to respond effectively

across the spectrum of eating disorders provides opportunities for more efficient

utilisation of the scarce specialist EDS resource. The Plan will include objectives

focussed on raising capacity earlier in the system for identification, for effective

intervention, for improving referrals and coordination, and for allowing people to

remain safely in their homes/communities whilst also providing support for their

families.

There is regional recognition of the service gaps and the importance of developing timely

solutions. It is acknowledged that for some people with eating disorders an

inpatient/residential episode or attendance at a day treatment programme will be the

best clinical option regardless of the timing of referral.

The Northern Region intends to develop a range of new tertiary level services and

enhance existing services in line with the Future Directions national document.

The Northern Region is committed to providing separate environments and delivery

models for children / young adolescents and older adolescents / adults.

Tertiary Services

Children & Young Adolescents

The Northern Region proposes to negotiate access arrangements to Paediatric

Medical beds within Starship, Auckland City Hospital and support those admissions

with a specialist eating disorders team.

Older Adolescents / Adults

The proposed model for provision of service to this group will be for medical

stabilisation to be met locally in medical hospital and specialised ED treatment to be

delivered from a dedicated treatment facility. This option could be provided in

partnership between a DHB and a Non-Government Organisation [NGO]. A day

programme will be developed as an adjunct to the development of the Treatment

facility.

Northland DHB

Developing local responses that are bolstered by access into the regional service for

consultation / liaison and clinical support, are endorsed as appropriate.

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CONTENTS PAGE

EXECUTIVE SUMMARY 2

1.0 Background 5

2.0 Eating Disorders 6

3.0 Northern Region Planning 8

4.0 Benchmarks & Best Practices 10

5.0 Northern Region Eating Disorders Profile 11

6.0 Challenges to implementing Future Directions, MoH 15

7.0 The Continuum of Care 15

8.0 New Clinical Services Proposed 16

9.0 Proposed Investment Approach 18

10.0 Proposed Implementation Approach 19

11.0 Interim Solutions for Tertiary Treatment Services 21

BIBILIOGRAPHY 22

APPENDICES

I Northern Region referral data 23

II RANZCP Guidelines: Criteria for Inpatient Admission 24

III ANZ Academy for Eating Disorders 25

IV Northern / Midland Tertiary EDS Development Project 27

V Regional working group membership 31

VI EDANZ submission to the Northern Regional Plan 32

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1.0 Background

In recent years the development of mental health and addiction services has been guided

by national policy and strategic documents such as Looking Forward (Ministry of

Health 1994), Moving Forward (Ministry of Health 1996), and Blueprint for Mental

Health Services (Mental Health Commission 1998).

Te Tāhuhu: Improving Mental Health 2005-2015: The second New Zealand mental

health and addiction plan (Ministry of Health 2005), sets a broad agenda for mental

health service development to 2015. It encompasses the needs of all New Zealanders, not

just the most severely affected, and the integration of mental health into the broader

health system.

In January 2008, the Ministry of Health released the Eating Disorder Strategy Future

Directions for the care, management, and treatment for service users with Eating

Disorders in New Zealand.

This document identified that the biggest gaps and the most significant challenges were

in providing services for children and young people. It stressed the need to develop

integrated eating disorders services that:

• Provide seamless service delivery across primary, secondary and tertiary settings,

easy transitions between services, and continuity of care

• Provide effective early intervention

• Provide a wider range of services and a multi-disciplinary approach to care

• Enable service users to participate actively in the planning of their own recovery

• Support service users as close to their home as possible

The document recommended following a tiered service model with a focus on primary,

secondary and tertiary levels of care as well as using a set of principles to address gaps in

service provision so an integrated eating disorders sector could be developed.

It identified key areas for action including:

• increasing the number and widening the range of services

• establishing tertiary eating disorders services

• supporting seamless service delivery, easy transitions between services and

continuity of care by providing:

o Referral of each service user to a secondary service with a designated care

co-ordinator;

o At least one designated eating disorders liaison person in each DHB (or

appropriate group of DHBs);

• building a workforce in primary, secondary and tertiary services with:

o The skills and experience to deliver effective services to people with an eating

disorder;

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o A culture that promotes service user participation and leadership;

o A culture that involves family/whānau in treatment and recovery.

All services need to recognise the particularly high impact that family and social contexts

have on the well-being of this group and an inter-sectoral approach to meeting their

needs should be standard practice.

2.0 Eating Disorders

The term eating disorders encompasses Anorexia Nervosa, Bulimia Nervosa and Eating

Disorder Not Otherwise Specified (EDNOS). Anorexia Nervosa, considered the more

concerning of the eating disorders, has a mortality rate of 5.6% per decade.

This is substantially greater than that reported for female psychiatric inpatients and for

the general population (Sullivan, 1995).

It is therefore imperative that adequate services are in place to meet the needs of this

client group and those who experience other eating disorders.

Results of The New Zealand Mental Health Survey (Te Rau Hinengaro 2006), which

covered people 16 years and over in the community, found an overall lifetime prevalence

of Anorexia Nervosa and Bulimia Nervosa in 1.7% in the general population.

Māori and Pacific prevalence rates for bulimia are reported to be higher than for other

ethnicities (Te Rau Hinengaro 2006). Low help-seeking by Māori with anorexia or

bulimia and lack of availability of services provided within a Māori kaupapa are key

issues.

It is difficult to obtain robust data on complex low prevalence disorders.

Internationally, prevalence of Anorexia Nervosa is at around 0.3% using strict diagnostic

criteria with 40% of cases being aged between 15 and 19 years. Prevalence for Bulimia

Nervosa is around 0 to 2.1% for males and 0.3 to 7.3% for females.

The recently published Evidence–Based Age–Appropriate Interventions: A Guide for

Child and Adolescent Mental Health Services (CAMHS) 2008 from The Werry Centre

for Child and Adolescent Mental Health Workforce Development, refers to a median

prevalence rate for eating disorders in the 15 to 20 year age group, as 1.2-1.4 per 1000

[Fombonne; 1995]

This figure relates essentially to young people in the Western developed world. On the

basis of further analyses, Fombonne was unable to find convincing evidence to suggest

that rates have been increasing over the past 50 years.

Both clinical and survey data show rates for eating disorders that are consistently higher

for late adolescent girls. In adolescents and young adults it is generally considered that

about 5–10% of cases occur in males (Barry & Lippman, 1990). In children, however, a

number of studies have reported that between 19–30% of cases have been in boys

(Bryant-Waugh, 1993; Fosson, Knibbs, Bryant-Waugh & Lask, 1987; Hawley, 1985;

Higgs, Goodyer & Birch, 1989; Jacobs & Isaacs, 1986).

The distribution of childhood onset Anorexia Nervosa between social classes seems to be

fairly similar to that in adults, with an over-representation of higher social classes

(Fosson et al., 1987; Gowers, Crisp, Joughin & Bhat, 1991; Higgs et al., 1989). Mortality

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in Anorexia Nervosa, with an age of onset before 18 years, is up to 11%, with a mean

mortality of 2.16% across studies.

Heritability is high in Anorexia Nervosa but almost non-existent with Bulimia Nervosa.

Only recently have there been reports of Anorexia Nervosa in adults or children from

African, Asian, Caribbean, or Chinese populations, and most of these reports relate to

children of migrant parents where an eating disorder may be linked to intrapersonal and

intrafamilial conflicts related to the adoption of Western values (Bryant-Waugh & Lask,

1995). [Adapted from Fonagy et al., 2000, p.308].

Clinical risks associated with Anorexia Nervosa

• Serious mental illness with severe physical manifestations

• Highest mortality rate of all mental illnesses (5.6% per decade)

• High risk of relapse (approximately 20% in 2 years)

• High rate of chronicity (10-20%)

• Risk of rapid deterioration with adolescents

• Egosyntonic1 presentation with low insight and low motivation for change

Clinical risks associated with Bulimia Nervosa

• Electrolyte imbalances, in particular hypokalaemia2, resulting in rare cases in

cardiomyopathy with cardiac arrhythmia

• Acute gastric dilatation with the risk of gastric rupture

• Among the rare potential complications of Bulimia Nervosa are also reflux

oesophagitis and oesophageal rupture. Also hypokalaemia related nephropathy has

been described but is very rare.

The majority of eating disorders develop in adolescence or young adulthood and while

the incidence of serious eating disorders is relatively low, the impacts can be extreme,

with high rates of mortality.

In addition to the significant suicide risk to individuals with eating disorders, there are

often serious associated medical complications with this disorder.

Statistics indicate that the majority of people affected with an eating disorder are female;

however males can still be affected.

1 Egosyntonic is a medical term referring to behaviours, values, feelings, which are in harmony with or acceptable to the needs and goals of the ego, or consistent with one's ideal self-image. It is studied in detail in abnormal psychology. It is the opposite of egodystonic.

2 Hypokalemia is a potentially fatal condition in which the body fails to retain sufficient potassium to maintain health.

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3.0 Northern Region Planning

In 2007 (prior to the publication of the National Strategic document) the Northern

Regional Service Planning Group – Mental Health [RSP-MH] commissioned a project

to:

a) Collate information about current service provision in Metro Auckland;

b) Consider the models of other services for possible application within the Auckland context; and

c) Interpret the draft recommendations of the Ministry of Health Future Directions for

the care, management, and treatment for service users with Eating Disorders in

New Zealand within an Auckland context.

RSP-MH takes a strategic view of the region, ensuring that any changes or decision-

making about regional service configuration (Provider Arm or NGO) in the Northern

region takes place through a planning process that is clinically and financially informed.

RSP-MH chaired by the Regional Director of Mental Health & Addiction services

includes Clinical Directors, General Managers and Mental Health & Addiction Services

Programme Managers from the 4 DHBs across the Northern Region.

RSP-MH reports to the regional CEO forum via the Regional Director of Mental Health

& Addiction Services.

The Northern Region Eating Disorders Services Plan is aligned with the Network North

Coalition Strategic Direction and under the governance of RSP-MH.

The Northern Region EDS Plan requires access to a continuum of care that is integrated

and based on best practice. EDS will continue to develop and maintain quality

assurance frameworks and a safety management system where regional research and

rigorous evaluation will ensure that outcomes from treatment and support for clients

are utilised and disseminated to drive service improvements.

Current clinical services provided by the Regional EDS are provided to the Auckland

Metro populations only.

Northland DHB does not access this service, although the regional EDS have been

available for consultation /liaison. The nature of the arrangement for

consultation/supervision by EDS for Northland is not well defined at present but it is

expected that the development of local services with clear links to the Regional EDS will

assist to clarify and define the relationship.

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Demographic Profile of Northern Region

The Northern Region comprises of four DHBs:

Northern Region Population (2006 census)

DHB 2006 Census -

Usually Resident Population

% of Region by 2006 Census Population

2001 Census - Usually Resident

Population

% Increase From 2001

Auckland 404,658 28% 367,749 10%

Counties Manukau 433,083 30% 375,534 15%

Northland 148,440 10% 140,130 6%

Waitemata 481,611 33% 429,756 12%

Northern Region 1,467,792 1,313,169

Northern Region Population by Ethnicity3 (2006)

DHB Māori Pacific Asian Other Totals

Auckland 29,847 50,166 93,522 243,813 417,348

Counties Manukau 67,245 92,982 73,053 225,837 459,117

Northland 43,527 3,702 2,580 108,408 158,217

Waitemata 42,879 35,190 68,148 360,684 506,901

Northern Region 183,498 182,040 237,303 938,742 1,541,583

% Increase From 2001 7% 15% 54% 7%

3 The 2006 Census allowed respondents to identify multiple ethnic identities. In consequence the totals do not match with the usual resident population figures.

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4.0 Benchmarks & Best Practices

Blueprint guidelines (Mental Health Commission, 1998)

The guidelines for eating disorders services from Blueprint recommend that:

• Most people are treated within general mental health services

• Specialist services should be delivered regionally with consultation and liaison

provided to local services

• Residential inpatient resource should include a variety of models from hospital

inpatient to community facility

• Safety is the paramount consideration

Blueprint recommends eating disorder community teams of 2.4 FTE per 100,000

population, and 0.5 eating disorder beds or ‘care packages’: per 100,000 population.

Table 1: Blueprint benchmarks applied to projected 2009 & 2011 populations

Population Inpatient Beds Community FTE

2009 2011 2009 2011 2009 2011

Northland 151,500 153,000 .75 .76 3.6 3.6

Waitemata 522,400 537,800 2.6 2.7 12.53 12.9

Auckland 448,100 460,300 2.24 2.3 10.75 11.04

Counties-Manukau 462,900 477,800 2.31 2.4 11.1 11.46

Northern region total 1,584,900 1,628,900 7.9 8.1 38 39

Christchurch Eating Disorder Service

The Christchurch Eating Disorder Service shares a 13 bed facility with maternal mental

health. The number of dedicated eating disorder beds varies between 6 and 7 depending

on demand between the two services.

Clients from all South Island DHBs from the age of 13 years are accepted for inpatient

treatment.

The service operates an outpatient programme for clients within the Canterbury DHB

area, providing annually to around 120 clients per year.

The waiting list for inpatient treatment ranges from a few weeks to a few months. The

dedicated eating disorder inpatient beds are used for:

• Medical stabilisation for compromised patients; and

• Assessment to address a specific issue/s identified as an outpatient.

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Sole criterion for accessing this programme is failed outpatient treatment.

Generally 3-4 beds are used for this programme as the treatment is highly group

focussed.

Wesley Mission – Sydney, Australia

This is a private clinical service with a ten bed contained inpatient unit and a 15 place

day programme.

The day programme runs from a separate cottage in the hospital grounds.

The day programme is used as a step up/down from inpatient treatment, and clients

attend this for either three or five days a week depending on their level of need.

The average length of treatment is about three to four months, with the inpatient

component of the overall treatment lasting approximately four to six weeks.

The Wesley Mission service has strong links with:

• Pathology service and outside consultants e.g. cardiologists and endocrinologists.

• Medical private hospitals for transfer of patients whose medical conditions

deteriorate, or to emergency departments (public hospitals) if warranted.

5.0 Northern Region EDS Profile

The Northern Region Eating Disorders Service is a specialist service providing an

evidence-based integrated outpatient treatment approach across the Metro Auckland

region with a population just over 1.4 million.

The service operates two separate programmes; the Intensive Programme and the

Shared Care Programme. Each programme has different clinical pathways depending on

the diagnosis and type and severity of symptoms presenting. Both programmes include

medical and nutritional management, psycho-education, individual psychotherapy,

family meetings and a range of group therapies.

In addition there is a contract to provide consultation training and supervision for staff

in the Midland Health regions. Support is provided to staff from Northland DHB

although there is no funding agreement for this.

The Northern EDS has been managing and treating a significant number of people who

meet the clinical criteria for specialist inpatient treatment.

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Referrals

Referrals to the service of people domiciled in the Metro Auckland DHBs have increased

over the last three years. The increase is from the Auckland and Counties Manukau

DHB populations between years 2005/06 and years 2006/07.

Table 2: Number and percentage of referrals to EDS per DHB

2004/05 2005/06 2006/07

Auckland 62 (39%) 69 (45%) 79 (45%)

Counties Manukau 25 (16%) 23 (15%) 36 (20%)

Waitemata 67 (42%) 56 (37%) 57 (33%)

Other 4 (3%) 5 (3%) 3 (2%)

TOTALS 158 153 175

Increased referrals stretch EDS resources and outstrip planned service growth,

resulting in a growing waiting list and increased length of stay on the waiting list.

The Shared Care Programme engagement length is generally six months to one year.

The Intensive Programme is generally for two or more years.

Figure 1: Referral by DHB in years 2004/05, 2005/06, 2006/07

0%

5%

10%

15%

20%

25%

30%

35%

40%

45%

50%

Auckland Counties Manukau Waitemata Other

04/05 05/06 06/07

DHB referral rates have remained relatively consistent. The comparatively lower

referral rates overall from CMDHB may be attributable to a higher Māori and Pacific

Island population. This is likely to be a similar issue in Northland which currently has a

total of 9 clients with a primary diagnosis of an eating disorder.

These populations are under- represented in referrals to the EDS.

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Eating disorders affect people at different ages. The age groupings of those requiring

services are considered when determining the most appropriate care and setting for

care delivery.

Figure 2: Referrals by age groups

0% 5% 10% 15% 20% 25% 30% 35% 40%

Under 10

10-14

15-19

20-24

25-29

30-39

40-49

50-59

60+

04/05 05/06 06/07

There is a predominance of referrals in the 15 to 19 years age group.

These tend to present with Anorexia Nervosa requiring particularly resource-intensive

treatment with extensive family and multi-disciplinary team input.

Those aged 11-14 years are most at risk of rapid physical deterioration requiring medical

attention due to their developmental stage.

Figure 3: Referral to EDS by age group 11 to 19 years

0123456789

101112131415161718

11 12 13 14 15 16 17 18 19

Age

Num

ber

04/05 05/06 06/07

Figure 4 demonstrates the predominance of European ethnicity in referrals. Cultural

behaviours and attitudes in some non-European groups are thought to be protective

factors against acquiring Anorexia Nervosa.

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Low help-seeking by Māori with anorexia or bulimia and lack of availability of services

provided within a Māori kaupapa are key issues that must be considered.

Resource issues for the regional EDS have not previously allowed for targeted work to

occur with these populations.

The second largest ethnic group of referrals is from people of Asian ethnicity, although

actual numbers are relatively low.

Figure 4: Referrals by ethnicity

0% 10% 20% 30% 40% 50% 60% 70% 80% 90%

European

NZ Maori

Pacific

Asian

MELAA

Other

Unknown

04/05 05/06 06/07

Current workforce

An increase in working hours from part time clinicians has allowed EDS to create a

flexible working environment and increase responsiveness to clients.

The service now has the capacity to offer appointments between 8am – 6pm Monday to

Friday. This extension of hours has been considered helpful to those clients with

employment and/or education commitments.

An EDS Community Support Worker role is also under trial. Positive feedback has been

received from clients and families.

Child Family Mental Health Unit, Auckland City Hospital

The Child and Family Unit (CFU) is available to admit school age clients (up to 18 years)

with mental illness and a primary risk of an eating disorder, with specialist support from

EDS.

However, specialist eating disorder treatment in the CFU is not indicated if a client is

medically compromised and particularly if he/she requires nasogastric feeding.

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6.0 Challenges to implementing Future Directions, MoH

• Under funded against Blueprint, and funding is based on community FTEs

• No previous investment for dedicated EDS inpatient beds

• Locally and nationally a scarcity of adequately trained EDS workforce in numbers of

staff, and the specific skill sets required

• Interim measures for inpatient care may not be flexible enough to adequately meet

the needs of individuals e.g. specific age or phase of illness requirements

• No partial hospitalisation or day programme

• Increasingly high number of urgent referrals to the service with advanced symptoms

not suitable for outpatient treatment limits the capacity for early intervention and

reduction of risks associated with deterioration

• Waiting list clients would also benefit from specialist input and reduce the risk of

deterioration while waiting for active treatment

• Regional consensus and national direction not always clear, or aligned

• The challenges of reaching supra-regional consensus for the development of tertiary

treatment services for the top half of the North Island

• Service specific recruitment and training issues

7.0 The Continuum of Care

Before considering development options it is important to view the continuum of care for

Eating Disorders and to recognise the need for the components of care to be connected as

described in the Ministry of Health’s pyramid Future Directions (Section 2.2 + 2.3). The

levels of care required to meet the levels of complexity are also outlined in that document.

Table 3 below gives an example of the possible elements within a continuum of care for

anorexia applied in the Auckland metro region.

This table is provided as a general guide only as it cannot capture the complexity of

individual cases and the involvement of services across the continuum e.g. the key agency

of EDS can potentially be involved at any point of the continuum but the nature of the

involvement can range from a relationship supporting the service provider to full clinical

involvement as the provider.

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Table 3: Clinical pathway of a continuum of care for Anorexia Nervosa in the

Metro Auckland region

Adults Children / Adolescents

Mild, stable co-

morbidities

Shared care programme

GP / CMHC / NGO / EDS

CAMHS

Moderate to severe CMHC / EDS Intensive

programme

CAMHS / EDS Intensive

programme

Severe or not

progressing

EDS Day Programme Support for transition home / local

hospital / EDS

Severe with

progressive

deterioration and/or

severe co-morbidities

EDS / Residential EDS / local hospital / local support

Medically unstable Medical admission Starship admission / EDS support

Appendix II includes criteria for inpatient admissions from the RANZCP Guidelines.

8.0 New Clinical Services Proposed

The current Auckland EDS is a mix of secondary and tertiary level community services

providing assessment and treatment for individuals from within the Auckland Metro

DHBs.

There are currently no tertiary EDS treatment facilities in the Northern region.

The Northern Region intends to develop a range of new services and enhance existing

services in line with the Future Directions national document.

Tertiary Treatment Services

The Northern Region is committed to providing separate environments and delivery

models according to the following age banding:

• Children and Young Adolescents [< 15 yrs old]4; and

• Older Adolescents and Adults [> 15 years old].

Children & Young Adolescents

Children and younger adolescents have a high risk of rapid physical health

deterioration necessitating medical intervention. Locating beds in a paediatric

hospital setting is critical to ensure that the medical aspects of the eating disorder

4 Starship Children’s Health will admit children up to their 15th birthday and continue to admit children who have turned 15 but are under active management by Starship. Children past their 15th birthday can be admitted to Starship Children’s Health only where exceptional circumstances exist and agreement is negotiated with the adult and paediatric clinical staff.

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are safely addressed. Engagement with the patient in eating disorder treatment

prior to medical stabilisation and recovery of safe nutritional status is extremely

difficult.

The Northern Region proposes to negotiate access arrangements to Paediatric

Medical beds within Starship, Auckland City Hospital and support those admissions

with a specialist Eating Disorders team.

It is intended that the admission to Starship would be inclusive of the medical

stabilisation phase and eating disorder treatment for medically stable

children/young adolescents. The development of a detailed clinical/service delivery

model in this ‘shared care’ arrangement will be a key component of the Northern

Region Implementation Plan.

Older Adolescents / Adults

The needs for medical stabilisation of this group will be met locally with admission to

a local medical unit with local Consultation Liaison services providing support; the

EDS will provide support to the local Consultation Liaison services during the

admission.

The focus of a specialised ED facility for this age band is treatment of the eating

disorder [>90% of cases likely to be anorexia], and it is envisaged at this juncture

that a dedicated eating disorder treatment facility be delivered in partnership

between a DHB provider and an NGO provider.

Establishment of a day programme as a step up / step down from the treatment

facility offers more structure and containment than the Intensive Outpatient

Programme for those people with a severe or non-responsive illness.

The day programme can be developed as an adjunct to the development of the

treatment facility.

Northland DHB

The combination of a low incidence rate for Eating Disorders and the imperative of

developing local responses in Northland indicate that an appropriate service delivery

model for Northland is:

• Local Eating Disorder services based in Northland providing clinical services,

consult/liaison and training; and

• Access to specialist consultation and liaison with the tertiary services in

Auckland, and the provision of a shared ED clinic in Northland; and

• Access to specialist treatment facilities in Auckland negotiated and funded

through an inter-district flow mechanism.

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9.0 Proposed Investment Approach

The Ministry of Health has requested that each region submit a plan outlining how the

strategic objectives of Future Directions will be met.

The capacity to establish new services, enhance and/or redesign existing services is

subject to available funding allocations, and reliant on national, regional and local

prioritisation processes.

In consideration of the national strategic objectives and the commitment of the Northern

Region to establish and develop a full continuum of services the region has agreed to

support additional investment in Eating Disorder Services at levels that are equitable for

all other Mental Health & Addiction services in the Northern Region.

Projections and planning for service growth need to be based on a balance of available

information including estimations of need, consideration of service viability, and regional

equity5.

Community FTEs

Divergent populations across DHBs and competing priorities add complexity to the

volume and configuration of Eating Disorders services required.

The details of configuration, the need to develop and deliver locally as well as

regionally, the building of relationships spanning primary/secondary and tertiary

levels, and the timing of service developments will be more fully worked through in

the Northern Region Implementation Plan.

Beds / Care Packages

The Northern Region DHBs unanimously support a tertiary treatment facility for the

Older Adolescent / Adult age group to be developed in partnership with an NGO.

The medical stabilisation phase for this age group should occur in a local hospital as

close to the person’s natural supports as possible and the specialist EDS treatment

delivered in the less ‘medicalised’ facility.

The region views this option as a priority for the 2009/10 year contingent upon:

• Clarity being provided by the MoH on the availability and mechanism for both

establishment and ongoing funding; and

• Success in identifying and engagement with an appropriate NGO and

• Overcoming the challenges of locating and recruitment of a clinical & non-clinical

workforce.

5 Currently the Northern Region DHBs are at 78% against Blueprint benchmarks for all Mental Health & Addiction Services.

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10.0 Proposed Implementation Approach

With current resources at 57% of Blueprint (1998) it is important to signal that the region

will require a planned and staged investment strategy to support service developments

outlined within this Plan.

The consultation and planning processes have identified a number of specific areas of

development across the continuum of care that can be addressed when additional

resources become available. The capacity to plan for and deliver direct service or

infrastructural enhancements is constrained as service resources are continually

consumed with clinical caseloads.

Principles for Service Developments

• Community Partnerships

There is evidence that programmes that raise awareness and encourage early

intervention activity in eating disorders are beneficial. These include the

development of prevention and education activities, school programmes, and

partnerships with public health/health promotion/primary care. There are

opportunities to work in partnership with NGOs to further develop flexible

support options such as home-based respite for families.

• Flexibility

It must be strongly emphasised that a one size fits all approach is inappropriate

and not in alignment with best practice recommendations. Evidence supports

service configuration with flexibility to respond in a variety of ways. Structurally,

this requires some capacity for separate therapeutic environments and

procedurally, it would see a range of age-appropriate models of care that are

adaptable to the variations in clinical presentations that potentially arise within

each age band.

• Appropriateness

Services need to plan to be responsive to Māori and Pacific peoples noting that

bulimia is likely to be more prevalent than anorexia within these groups. This

means service provision for Māori and Pacific peoples is likely to need to be

much more community based than inpatient focussed. Work is needed to identify

the reasons for low referral and retention rates and steps taken to address

these. It is likely that the service model will need significant adaptation to

improve its cross-cultural relevance. One strategy might be that education of the

primary care workforce and effective engagement with Māori and Pacific peoples,

advisors and providers will lead to increased identification of these disorders.

Planning for a tertiary specialist inpatient setting will involve design for two

separate specialist environments; one for children and young adolescents up to

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age 15 to provide developmentally appropriate treatment; and one for older

adolescents and adults.

Wherever possible Eating Disorder Services [especially those for children, and

adolescents] should be delivered as close to the person’s family and support

systems as possible.

Contingent upon additional resources being prioritised, the Plan proposes a

project management approach to the following areas of service development.

This is an indicative framework for implementation. The details for prioritisation

and responsibilities for leading specific areas of work will be further defined in

the Regional Implementation Plan. All proposals are subject to iterative

processes that may vary eventual outcomes.

Table 5: Proposed Areas for Implementation of Service Development

PROJECT AREA LEAD Indicative

timeframes

1.0 Workforce

1.1 Development of a Nurse specialist role DHB provider 08/09 – 09/10

1.2 Planning and integration within a Regional

Workforce Planning process

DHB / NDSA 09/10 – 12/13

1.3 Recruitment Plan to identify and locate

appropriate skills and volumes for workforce to

support service delivery

DHB provider 09/10 – 10/11

1.4 Development of EDS workforce skills and

knowledge of Child / Adolescent needs

DHB’s 10/11 – 11/12

2.0 Primary Care

2.1 Establish working relationships within PHO

structures to develop network of interested

General Practitioners


2.2 Develop community-based programmes, training and educational resources, and innovative models

to deliver training and education


2.3 Work with kaupapa Māori, Pacific, and Asian

primary health providers on incidence of ED,

raising issues and developing greater cultural

responsiveness


3.0 Secondary Care

3.1 Development of EDS consult liaison / coordinator

roles within local services with links to Regional

EDS

DHB’s 09/10 – 10/11

3.2 Enhancement of clinical pathway planning into

Child/Adolescent and Adult Mental Health units

DHB’s 09/10 – 12/13

3.3 Develop service delivery models for ‘shared care’

arrangements with CMHC / EDS & CAMHS/EDS

to meet local and regional coordination

requirements


3.4 Develop service delivery models utilising

community support for clients in their homes DHB’s 10/11 – 12/13

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3.5 Consider opportunities for specific ED

information management systems DHB provider 10/11 – 11/12

3.6 Develop educational and training resources on

Eating Disorders for mental health services DHB provider 11/12 – 12/13

4.0 Tertiary Care

4.1 Older Adolescent / Adult Treatment facility in

partnership with an NGO that encompasses beds,

care packages, and day programme

RSP / DHBs 09/10 – 12/13

4.2 Tertiary EDS support to Starship RSP / DHBs 09/10 – 12/13

4.3 Northern Region DHB participation in

development of a North Island Tertiary Centre RSP / DHBs 08/09 – 09/10

11.0 Interim Solutions for Tertiary Treatment Services

Whenever possible, local options that support recovery in the person’s community will

be prioritised. Packages of care will be locally developed in partnership with Eating

Disorders services.

The Starship Children & Family Unit has capacity to treat a certain sub-set of clients

with an Eating Disorder in partnership with Eating Disorders services in the same

manner that they [CFU] would treat clients in partnership with any referring service.

EDS continues to make use of the Ministry of Health contract with Ashburn Hall for

those clinical cases where the type of treatment and setting is indicated. Eating Disorder

service-users are not prioritised for access, as bed availability is dependent on the

regional rotation system as part of the Ministry contract.

Auckland EDS have established a working relationship with two providers in Sydney,

Australia and has accessed the facility for a number of clients. The two facilities are the

Children’s Westmead Hospital [for children/young adolescents] and the Beaumont

Centre at Wesley Hospital [for the older adolescents / adults].

RSP-MH has recommended to each DHB within the Northern region that prior to

completion of the Tertiary Services Project, and subsequent development of regional

facilities, access to Sydney should continue when the local options outlined above are not

adequate to meet the needs of the seriously unwell client.

Sending a patient to Sydney is not the preferred option. Work will continue on

developing criteria for referral and the pathways and processes involved in such referrals

including a thorough exploration of local alternatives. EDS will take a strong regional

lead in coordinating and informing the region around the decisions for referral to the

Sydney facilities to ensure equitable and effective processes to support the client, the

family / whānau, the services involved, and the relationship between EDS and Sydney.

EDS and the DHBs will need to develop effective coordination of clinical processes to

ensure that the decision for placement at Sydney occurs at an appropriate stage.

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BIBLIOGRAPHY

Eating Disorders in the UK: Policies for Service Development and Training 2004

Mental Health Commission. 1998. Blueprint for Mental Health Services in New Zealand: How things need to be.

Wellington: Mental Health Commission.

Ministry of Health. 2006. Te Rau Hinengaro: The New Zealand Mental Health Survey. Ministry of Health:

Wellington.

Ministry of Health. 2008 Future Directions for Eating Disorders Services in New Zealand.

Royal Australian and New Zealand College of Psychiatrists. Clinical Practice Guidelines Team for Anorexia

Nervosa. 2004. Australian and New Zealand Clinical Practice Guidelines for the Management of

Anorexia Nervosa. Australian and New Zealand Journal of Psychiatry. 38:659–70.

Royal Australian and New Zealand College of Psychiatrists. 2005. Anorexia Nervosa: New Zealand

Treatment Guide for Service users and Carers. Melbourne: Royal Australian and New Zealand College of

Psychiatrists.

APA Practice Guidelines; Treatment of Patients with Eating Disorders, Third Edition, 2006, American

Journal Psychiatry. 157 Suppl; 1-39

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APPENDICES

Appendix I: 2004/05; 2005/06 & 2006/07 Northern Region EDS Referral data

Numbers of referrals Percentages of referrals

2004/05 2005/06 2006/07 2004/05 2005/06 2006/07

TOTAL 158 153 175

Age

Under 10 1 0 0 1% 0% 0%

10-14 19 16 22 12% 10% 13%

15-19 51 52 55 32% 34% 31%

20-24 34 38 43 22% 25% 25%

25-29 22 22 22 14% 14% 13%

30-39 23 13 23 15% 8% 13%

40-49 5 6 5 3% 4% 3%

50-59 2 4 4 1% 3% 2%

60+ 1 2 1 1% 1% 1%

Ethnicity

European 124 114 139 78% 75% 79%

NZ Māori 3 5 3 2% 3% 2%

Pacific 1 4 2 1% 3% 1%

Asian 16 15 10 10% 10% 6%

MELAA** 3 4 2 2% 3% 1%

Other 7 5 11 4% 3% 6%

Unknown 4 6 8 3% 4% 5%

DHB

Auckland 62 69 79 39% 45% 45%

Counties Manukau 25 23 36 16% 15% 21%

Waitemata 67 56 57 42% 37% 33%

Other 4 5 3 3% 4% 2%

Waikato 1 1 0 1% 1% 0%

Hawkes Bay 1 0 0 1% 0% 0%

Not Specified 2 4 3 1% 3% 2%

**Middle Eastern, Latin American and African

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Appendix II: RANZCP Guidelines: Criteria for inpatient admission

Indicator

Medical status Adults: HR<40 min, BP<90/60mm, low potassium, other

electrolyte imbalance, temp <97F; orthostatic changes: >20 bpm

increase HR; >20 mm Hg drop in BP

Children: HR <50 min; BP <80/50 mm; low potassium: low

phosphate

Suicidality An active plan

Weight Adults: body mass index (weight kg/height m2) <14 rapid weight

loss

Children: rapid weight loss

Anorexic cognitions Continuous preoccupation, co-operative only in highly structured

treatment

Comorbidity Other psychiatric disorder requiring hospitalisation

Eating Needs supervision of every meal, naso-gastric tube feeding

Exercise Needs reminding to restrain and/or modify

Purging and vomiting Compulsive, uncontrolled activity

Environment Severe family problems

Treatment availability Requires residential placement

HR: heart rate; BP: Blood pressure

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Appendix III: Australian and New Zealand Academy for Eating Disorders

ANZAED POSITION STATEMENT on INPATIENT

SERVICES FOR EATING DISORDERS

While many patients with an eating disorder can be treated effectively as outpatients, ANZAED

takes the position that there is a continued need for specialist inpatient services for those with

severe illness.

ANZAED endorses the RANZCP guidelines for specialist inpatient care and indications for

admission (see Appendix). These are in accord with international guidelines and are premised on

the consensus that treatment of a severe eating disorder is complex and requires

multidisciplinary specialist medical, nutritional, nursing and psychological care.

In addition ANZAED endorses the following principle:

The inpatient ward environment is very important to a successful outcome. Patients (and their

families) may suffer psychological trauma when treated in inappropriate settings. There are well-

recognized problems and risks with:

• Managing patients in high security psychiatric units where the medical difficulties of

eating disorder patients can be overlooked and where their needs may be placed at a

lower priority than patients who have greater behavioural disturbance

• Mixing adolescents with adults suffering acute psychoses, the latter who may have

severe behavioural disturbance

• Management by professionals unfamiliar with current management and/or the

potential for adverse effects of excessively punitive and coercive approaches

Access to such hospital care for people with eating disorders is widely variable across Australia

and New Zealand, with some regions having no such services.

ANZAED accepts an important role as the leading bi-national professional organisation in the

area to work for improved services and care and redress this current situation.

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References to ANZAED position statement:

Further details on the clinical model for treatment of Anorexia and Bulimia can be found in the

American Psychiatric Association Practice guidelines for the treatment of patients with eating

disorders (Revision). (2000) American Journal Psychiatry, 157 Suppl., 1-39

RANZCP Clinical Practice Guidelines Team for Anorexia Nervosa. Australian and New Zealand

clinical practice guidelines for the treatment of anorexia nervosa. Aust N Z J Psychiatry 2004;

38:659-670.

RANZCP Guideline 1 Treatment setting: For patients with anorexia nervosa which is not so severe to

require in-patient treatment (e.g. where the risk of death from suicide or physical effects is high)

out-patient or day-patient treatment may be suitable, but this decision will depend on availability

of such services. The following are indications for admission adapted from the APA guidelines

(2000):

Physical state - adults: heart rate (HR) <40 min, blood pressure (BP) <90/60mm, potassium <3,

other electrolyte imbalance, temp <36°C and/or body mass index (weight kg/height m2) <14;

children: HR <50 min, orthostatic changes: <20/min increase, HR >20mm drop in BP, BP

<80/50mm, low potassium, low phosphate and/or rapid weight loss

Mental state - an active plan for suicide; continuous preoccupation with eating disorder cognitions;

co-operative only in highly structured treatment; presence of another psychiatric disorder requiring

hospitalisation

Eating Disorder symptoms – needing supervision of every meal and/or naso-gastric feeding;

needing modification of extreme purging and/or exercise behaviours; severe family problems

and/or requires residential placement to access treatment.

Disclaimer: These are not exclusive of other indications which may arise e.g. pubertal

developmental delay

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Appendix IV: Tertiary EDS Development & Options Analysis Project

Project Objectives The objectives of this supra-regional project are to provide recommendations to the Chief Executive Officers of the Northern and Midland regions DHBs on the future provision of Tertiary Eating Disorder Services.

The recommendations will span:

• A model of tertiary level inpatient care appropriate to the needs of the Northern and Midland regions diverse populations;

• A workable model of service delivery that reflects the above needs;

• A description of environmental and facility requirements in which the above service model can operate;

• A workforce development strategy.

Background In Jan 08, the Ministry of Health released the Eating Disorder Strategy Future Directions of Eating Disorder Services in NZ. This document identifies that the biggest gaps and the most significant challenges are in providing services for children and young people.

It recommends the development of integrated eating disorder services utilising a tiered service model with primary, secondary and tertiary levels of care.

The document also signals support for at least two tertiary EDS centres in NZ (one in Auckland). Tertiary centres will have designated eating disorders beds and provide highly specialised inpatient services for the most severely ill service users.

Tertiary centres are expected to also provide secondary services for the local DHB or wider region (in this case, the Northern region).

Current State The Auckland DHB based EDS currently provides secondary level outpatient community based services to people with eating disorders. The team also provide education to mental health sector and primary care providers in this area.

The contract between Midland DHBs and Auckland DHB EDS for clinical supervision, support and training is under review.

In 2007, the Mental Health Regional Service Planning Group developed a proposal entitled ‘Options for Enhancing EDS in

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the Northern Region’ which formed the basis of the DRAFT Northern Region Eating Disorders Plan 2008-2013 subsequently submitted to the Ministry of Health in June.

Within Midland region DHBs there are no dedicated Eating Disorder Services.

Accountability

The Project is responsible to the Northern Regional Services Planning Group – Mental Health, and to the Midland Regional Network.

The Project Sponsors are:

Ian McKenzie – Regional Director Mental Health & Addiction Services Northern Region; and

Eseta Nonu-Reid – Midland Regional Network Mental Health & Addictions Director Service Development

Project structure/approach

The Project will undertake a review of literature and reference Tertiary service models in Australasia to produce a set of recommendations as described above.

The Sponsors intend to engage with peer and consultant reviewers to provide external validation of the clinical, facility and funding recommendations.

The key focus of the project working group will be to determine:

a) What are the potential models of care - is there a preferred option and why is it the preferred option?

b) Can the costs/resources of the preferred option be defined and what are the funding implications of the preferred option?

c) Are there any special requirements for service provision for Maori, Pacific, rural dwellers, and others where there is high need or inequitable access?

d) What is the desired option for a facility (or facilities)?

e) Where is the most appropriate location(s)?

f) What are the environmental characteristics required to deliver these services according to the proposed model and service configuration?

g) Are there existing facilities that could be redeveloped or is a new build required?

h) What are the financing options/ how will the capital and operational costs be financed?

i) What are the numbers and skill mix of staffing for proposed service developments?

j) What are the financial implications of the workforce

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requirement?

k) What capacity is there to recruit and retain the required

workforce?

Resource requirements

Project management

External consultation and Peer review / validation.

Review examples of specialist tertiary centres in Australasia

Participation in National forums

Supra-regional consultation

Budget $40,000

Key Milestones and time lines

Project Sponsors confirmed – August 2008

Project Brief approved by Regional CEOs – October 2008

Financial modelling submitted to CEOs – November 2008

Working / Reference Group meetings & consultation – October / December 2008

Draft report to Sponsors – January 2009

Draft report to Regional Services Planning Group – February 2009

External consultation / Peer review – March 2009

Report to Regional Services Planning Group – March 2009

Report to Regional CEOs – April 2009

Assumptions That there is sufficient buy-in at senior level within DHBs across the region, that process is robust and that the recommendations will be supported.

Project Risks Risks

That the project cannot deliver to the Regional Capital prioritisation timelines and increase delays to potential service development.

Insufficient buy-in at senior level of all DHBs across both regions to progress recommendations

Risk Mitigation

Financial modelling is prioritised within NDSA capacity or outsourced to meet Regional Capital timelines.

Establish effective communication strategy and seek efficient sign off processes.

Inclusion of wider stakeholders in

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Continued public criticism of perceived delays in development of services

communication strategy, invitations for formal comment processes and/or participation in development of recommendations

Project Opportunities

Opportunities

To make efficiency and effectiveness gains across the existing range of services.

Develop a centre of excellence

Strategy

To establish a keystone aspect of the continuum of care that will enable the establishment of best clinical practice.

Linkages DRAFT Northern Region Eating Disorders Service Plan 2008-2013

Midlands Region Eating Disorders Strategic Plan

Northern Region Child Family Unit Future Service Development Project

In scope / Out of scope

(constraints/limits)

To be confirmed following Project Sponsor meeting

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Appendix V: Northern Region Working Groups membership

Original Regional Project

Roger Mysliwiec Clinical Director, Eating Disorders Service

Adele Wakeham Service Manager, Eating Disorders Service

Linzi Jones MH Funding & Planning Manager

Miriam Hogan Acting Locality Manager, MH Funding & Planning

Julie Armstrong Locality Manager, MH Funding & Planning

Roz Sorenson Senior Project Manager

Iain Nicholson Project Manager, Regional Services Planning – MH

Tertiary EDS Development & Options Analysis Project Steering Group

Ian McKenzie Regional Director, Northern Region

Eseta Nonu-Reid Midland Regional Director

Margaret Aimer Clinical Director, Counties-Manukau DHB

Murray Patton Clinical Director, Waitemata DHB

Phil Grady Group Manager, Waitemata DHB

Adele Wakeham Service Manager, Eating Disorders Services

Roger Mysliwiec Clinical Director, Eating Disorders Services

Louise Webster Clinical Director, Paediatric Consult Liaison

Elizabeth Wood Service Manager, Starship services

Deirdre Maxwell Programme Manager, Auckland DHB

Iain Nicholson Project Manager, NDSA

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Appendix VI:

Submission to the Northern Region Eating Disorders Service Plan 2008-2013

From the Eating Disorder Association of NZ (EDANZ) Introduction: EDANZ is a membership based Incorporated Society comprising families of those who suffer an eating disorder. It was established in 2007 in response to the alarming increase of eating disorders, and the absence of adequate treatment or health support, for either the sufferers, or their families. All voices in the following comments and submissions are those of parents and caregivers who speak from the experience of having been personally involved in the treatment journey of their loved ones, as well as those who are still anxiously waiting to be seen. Overall view: EDANZ members believe that all of the present services, whether inpatient or out-patient, are wholly inadequate, in respect of timeliness, adequacy and post-inpatient follow up. Outpatient treatment: The current waiting time for Eating Disorder (ED) sufferers to be first assessed is unacceptable, and places significant and unreasonable strain on families. Day programmes are virtually non-existent, notwithstanding that there is sound evidence of the benefits of such a programme, which can usefully be run in conjunction with inpatient treatment programmes. Inpatient treatment: There are many more ED sufferers that need to be receiving inpatient care than the handful that have so far been sent to Sydney, where inpatient treatment is currently provided to Auckland’s DHB patients. The funding issues, family difficulties involved in having a generally young person in Sydney for several months and the reluctance of EDS to recommend inpatient care at an early stage of treatment means that many patients and their families have endured months, if not years of stress, sadness and difficulty which could have been alleviated by earlier inpatient treatment, and adequate follow-up. Our concern regarding inpatient care comes from personal experience. Four of our 6 committee members have had children treated in Sydney and while grateful for the treatment are upset it could not have been carried out much closer to home. The delays in providing inpatient treatment, and inadequacy of a follow-up programme is exacerbating the problems. Earlier intervention would relieve much of the increasing pressures on the EDS services. Likewise it would be less costly to society as a whole, in view of the fact that often the earner of a family is obliged to leave their work to care for their family member who suffers the eating disorder. We feel strongly that action is needed sooner rather than later and sincerely hope the final version of the draft plan will have a binding timeline of less than 2 years for the introduction of a locally based eating disorder inpatient unit, an integrated day program and a boost in staff levels for the Greenlane based outpatient service. EDANZ perceives that the ongoing delays in providing the above urgent response is substantially the result of the failure of DHBs in the Auckland and northern regions to reasonably progress the regional plan. Progress in these areas is critical if the health system is to stay ahead of what appears to be a burgeoning problem. EDANZ submits, :-

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1. That inpatient care and an attached day program for older adolescents and adults in the Auckland region is a “must” to be established as a high priority. As an immediate step, dedicated ED beds and staff are urgently needed at Starship hospital for younger sufferers. ( 15yrs and below).

2. That the waiting lists currently being experienced at the Eating Disorder Service at Greenlane hospital are totally unacceptable.

3. Based on the experience of EDANZ members and associated members, the following are issues which need to be properly considered and included in any regional based programme:

3.1 A distinction must be made between older adolescents and adults on the one

hand, and children on the other, if treatment is to be effective. Any in-patient unit must cater separately for these two distinct groups.

3.2 The ‘adult’ unit should not be in a hospital. The optimum treatment

environment should be in pleasant surroundings and normalised as far as possible to everyday routine, where patients will likely be spending weeks or even months. A sterile, hospital type environment is not what is required and would make successful treatment much harder to achieve.

3.3 Younger patients may be able to be successfully treated at Starship hospital

providing there are ED trained staff employed in that unit as well as a ED trained dietician to oversee meal plans and feeding.

3.4 Staff are crucial and need to have training specific to eating disorders.

Having non eating disorder specialist s (even those part time) has proven difficult in the Sydney experience.

3.5 In-patient treatment should also be available to those ED patients who are

not medically compromised but are unable to lead anything like a normal life due to being ‘stuck’ in the illness. This can be either patients classified as chronic or those with a shorter history with the illness where outpatient treatment is failing to result in improvement. This group is constantly tottering on the edge of the ED cliff and inpatient care is as necessary for these patients as it is for those that are medically compromised.

3.6 The resources necessary for treatment of all kinds and for all groups should

be determined by the clinicians, and should be sufficiently robust to ensure a reasonable chance of success. If the EDS ‘experts’ say inpatient care is required it should happen as a matter of course

3.7 Treatment programmes need to acknowledge, and make provision for,

relapse. Some patients may require several rounds of inpatient care. Multiple visits doesn’t indicate recovery can’t happen- it can.

3.8 We support the Future Directions concept of a continuum of care and

consider an integrated day program is essential. Inpatients require a stepped introduction back to normal life and a day program helps achieve this and greatly improves the chances of recovery. The Sydney experience our group has had suggests an inpatient unit will struggle to deliver the desired outcomes without an integrated day program.

3.9 An inpatient unit/integrated day program needs to work closely with the EDS

team at Greenlane. We believe EDS should be the referral point to inpatient

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and day program treatment and should probably oversee these programs given the senior EDS staff’s depth of experience.

4. With regard to outpatient services we make the following comment and submissions:

Our members’ experience has been with the EDS intensive program and that is the area to which we address the following comments.

4.1 As stated in the introduction the waiting list to enter the EDS intensive

program is unacceptable. The fact that EDS cannot tell sick patients when they can enter the service is in itself terrible! We understand that staff recruitment is difficult but we question whether there have been the funds allocated to actually hire the necessary staff. With the expansion to level 1 in the current building we understand space is not a constraint so we would like to see a staffing plan, initially lifting numbers to that recommended in the 1998 blueprint.

4.2 There needs to be a much improved service offered to patients and their

families between referral to EDS and actually entering the service. This is often the toughest period for patients and their families as their lives spiral out of control and they are given virtually no help.

4.3 Patients are often resistant to treatment and this needs to be acknowledged

so that patients who exit the programme of their own accord remain ‘on the books’, and are able to return to the treatment programme without needing to start from the beginning, to be again referred and wait-listed.

In summary, the advice and contribution of families who have experienced the treatment pathways and programmes should be considered as a valuable resource for treatment providers, and those who plan regional services. I have sought to keep my comments brief and to the point. I, or other EDANZ members, would be willing to enlarge on any of the matters which have been covered in these submissions and comments. Yours faithfully Richard Leggat Chairman EDANZ

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