Report from the Chief Executive Officer

Overview

In last year’s Annual Report we referred to the challenges our organisation faced, in particular the pressure to increase our capacity in order to meet the needs of our growing constituency while facing tough economic times. The result over the year to March has been a reduction in income and a reduction in expenditure. The major consequence has been a reduction in staffing. This has put significant pressure on the organisation, but we have worked extremely hard and gained efficiencies where possible in order to maintain services at a high level.

Following the Annual General Meeting in August 2009 I travelled to the USA for the annual Food Allergy and Anaphylaxis Alliance (FAAA) meeting. It became clear that the challenges we faced were shared by many of our peer organisations from around the world. The discussion with fellow chief executives was invaluable in providing ideas not only for surviving the recession, but for building an organisation for the future.

In October 2009 we received the report from a survey of members conducted by students of the BHSc course at the School of Population Health, University of Auckland. A key finding was that while members valued the services provided by Allergy New Zealand, including allergy education and information provision, it generally took a long time to find us. This was often on top of long delays in getting a diagnosis and then very limited information from health professionals on the management of their condition. Members recommended increasing awareness of Allergy New Zealand itself; increasing access to our services including support through the use of new technologies; and helping improve access to health services— as well as funding for an auto-injector — through advocacy. There was also strong support to advocate for ongoing improvements in food labelling, for policies and procedures in schools, early childhood services and workplaces, and for research.

With the Board we embarked on a review of our 2005 – 2010 Strategic Plan and the development of a new plan for 2010 – 2013. The Chair has commented more on this important work in her introduction; my report will focus mainly on four areas we have been working on and the outputs and outcomes achieved to date.

1. Infrastructure

The recession has had a major impact on not just New Zealand’s but the global economy. It came after a long period of relative stability and flags possibly an equally long period of uncertainty. It is, therefore, important to learn the lessons from this in order to prepare for the next few years.

Allergy New Zealand has always been reliant on grant income, and while this will continue to be the case the priority this year has been to diversify and increase other income streams and build some reserves. A key strategy has been to adopt a business model, including the appointment of a Business Development Manager to develop sponsorship and supporters’ programmes; a marketing strategy to increase brand visibility; and a review of the ‘value proposition’ of membership to increase the contribution from this source.

While the financial affect of our sponsorship agreements will not be evident until the financial report to 31 March 2011, it is pleasing to note we now have two major sponsors in Electrolux Floorcare Ltd and Dunlop Living Ltd. The association with these iconic brands has not only helped increase our brand visibility, but has enhanced our reputation to the extent that other companies have expressed interest in sponsorship for the future. Our Business Development Manager, Alec Brown, was also successful in securing the support of the ASB Bank for Allergy Awareness Week.

Another strategy currently being implemented is to increase the capacity of the organisation including governance, operations and facilities. The Board’s work on the new Strategic Plan for 2010-2013 analysed the roles and skills needed to strengthen the Board and reflect a national organisation. A recruitment strategy has since been introduced to bring new directors onto the Board.

Membership continues to show significant turnover; while overall numbers remain static, new members join at about the same rate as older ones ‘expire’. A campaign has been introduced to encourage members to either retain membership or continue as a supporter of the organisation’s work on behalf of people with allergies even if they no longer need our specific services. It is pleasing to note that our corporate membership programme has increased in number.

Operational capacity has been significantly inhibited with the shortage of staff through this year however consultancy expertise has been contracted to complete a number of projects. These include assistance with grant applications, communications and IT development, review of Board policies, financial management, and development of the framework for the research fund. We are very grateful for the help Debbie Ansley, who as a volunteer has taken over the accounts from Michelle Goo; We also thank volunteers Kirsty Reynolds, who developed the idea of an auction campaign to raise funds for research, and Trudy Smith in assisting with the Trade Me Campaign.

Work has also been completed on the upgrading of our telephone system to VoIP. This has enabled the free-phone information line to be brought in-house; at the same time it has achieved considerable savings in the day-to-day costs of the system. This in turn means hard-earned income can be directed more to service delivery. We are very grateful to everyone who voted for us in the Sovereign Sunshine charity list in July 2009, and to all the staff at Sovereign for supporting this wonderful campaign. The proceeds have been put to great use, with phone calls from around the country to our information line now averaging around 7–10 a day, compared to 7-10 a week previously. These calls are currently managed by Inga Stünzner.

Inga has also been responsible for introducing Web 2.0 technologies by establishing a blog on our website, and the Allergy New Zealand Facebook page. These are now becoming more and more significant, particularly in facilitating a two-way dialogue between us and our stakeholders, and in enabling a wider range of people to access peer support and information. Also in response to a finding in our Membership survey, the layout of the website has been improved to make navigation easier, a challenge given the large amount of information freely available to visitors. It is noted that over 290,000 pages were opened by visitors in the year to June 2010. We are grateful to Zeald.com for ongoing sponsorship of the website.

2. Services and Programmes

In addition to the finding in the Membership survey on long delays in getting a diagnosis and support, other surveys (independent of Allergy New Zealand) have shown that many people now use the internet to self-diagnose illness. This can be extremely risky because a large number of sites carry information that is not evidence-based, and not independent.

A multi-pronged strategy has therefore been implemented, which is to promote Allergy New Zealand and particularly our website as the first port of call for information about allergies. The intention is that more people will be able to access our evidence-based and New Zealand-specific information sooner rather than later and thereby be able to get timely and appropriate referrals for diagnosis and clinical management of their condition. The outcome should be, over time, the reduction in the burden that allergies can impose on our lives.

A key role for our organisation since inception has been to raise awareness of allergies. Allergy Awareness Week was started in May 2001. In recent years it has had a major focus on raising awareness in schools and early childhood services of food allergy and anaphylaxis. Two years ago we initiated the idea of targeting community as well as school libraries, and May 2009 saw the circulation of display materials to 60 libraries nationally.

A major success for the campaign was the design and distribution of three designs of bookmarks, thanks to sponsorship from Nutricia. The bookmarks proved to be very popular. For Allergy Awareness Week this year we had double the number of schools and community libraries involved (over 120). In addition, the ASB Bank set up displays in over 150 branches nationwide, and distributed information to staff on food allergies and emergency response to anaphylaxis. Our major sponsor Electrolux also incorporated our logo and website on promotional material including TV advertising. The result is a significant increase in visitors to our website, incoming calls and emails, as well as media requests for articles etc.

We have also continued to publish ‘Allergy Today’ magazine and distribute this to an estimated 5000 health professionals including General Practitioners, every quarter. The quality of the magazine is commented on frequently and it remains our major communication tool for raising awareness and providing information. Our objective is to maintain this even though a decline in advertising revenue through this recessionary period makes it a challenge. Inga Stünzner continues as the driving force behind the publication, with the support of Hawkhurst Media.

The Allergy Education programme has continued with the objective of the Allergy New Zealand Allergy and Anaphylaxis Guidelines being implemented in all schools and early childhood services. Thanks to a grant from Pub Charity, 11 seminars were held around New Zealand during the period May to November 2009. These were targeted at parents and caregivers and were delivered jointly with health professionals including paediatricians and public health nurses from a number of District Health Boards. Around 300 people participated.

In addition the Auckland District Health Board again provided funding for three seminars for staff from Auckland City early childhood centres, and these were held at the Fickling Centre in November 2009, and March and May 2010. We are grateful for the assistance of Drs Jan Sinclair and Shannon Brothers from the Paediatric Allergy Clinic at Starship Hospital, who provided the clinical content for these seminars. It is also pleasing to note that the Health Board has extended the contract for these seminars for a further three years.

In June 2009 I attended, along with Dr Jan Sinclair and Sara-Jane Murison (our Allergy Educator at the time), an Anaphylaxis Working Party meeting in Sydney at the invitation of ASCIA (the Australasian Society of Immunology and Allergy). The purpose of the meeting was to review the standardised training material including online modules, which had been developed for management of anaphylaxis in schools in Australia. Allergy New Zealand has since launched the generic version of the e-anaphylaxis training module in New Zealand on ASCIA’s behalf, in April this year. The module is available for free through a link on our website. Over time we anticipate that it will be a requirement for teachers and caregivers to complete the module on-line as part of training and implementing policies and procedures in schools and pre-schools. We also recommend the module to parents, family members, health professionals, and in fact to anyone in the community who would like to know more about food allergies and anaphylaxis.

In addition to the e-anaphylaxis module, Allergy New Zealand developed and published a brochure on anaphylaxis, with funding from ACC and clinical advice from Dr Penny Fitzharris. This was launched in July at a seminar to A & E staff given by Dr Fitzharris.

The National Support Network has continued to provide support to hundred of families through support groups and networking. Our Regional Coordinators attended a National Workshop in February 2010, which provided an opportunity to discuss strategies for extending support including the use of Facebook and blogs. We are very grateful for the support of a number of COGS committees for assisting with grants towards the work of our support network, and also to the Regional Coordinators themselves who continue to do such wonderful work on a voluntary basis.

The Gluten-free Food and Allergy Show has now become an established feature on our calendar and enables us to provide information and education to the thousands of people who attend. Allergy New Zealand held displays in the Auckland shows in May 2009 and 2010, and Christchurch in October 2009. Participation in the latter was due to the efforts of Raewyn Mitchell, our Canterbury coordinator, who managed the stand single-handed, a really sterling effort! It has also been very worthwhile working with the Health Food Media, the shows’ organiser and publisher of the ‘Healthy Food Guide’ magazine, and we thank them for their support.

3. Advocacy

There are many issues needing resolution for people suffering from allergies. These include many ‘lacks’: of access to specialist care; education and training for health professionals; mandatory guidelines – and resources — for schools, early childhood services and workplaces generally; support from communities; availability of safe foods and clear labelling; and of funding for an adrenaline auto-injector. These are all areas in which we have continued to work and monitor progress, and advocate through submissions and so on.

The area where most progress has been made in the past year is in the labelling of manufactured food. This is a culmination of work over the past four years of the Allergen Forum, convened by the Australian Food and Grocery Council. The Forum provides comprehensive information and advice to manufacturers on allergen management and labelling through the Allergen Bureau. It has also developed VITAL (Voluntary Incidental Trace Allergen Labelling), a systematic approach to determining whether or not to include a precautionary (may be present) statement on the label. Allergy New Zealand has continued to participate in the Allergen Forum, to provide feedback and comment where required, and distribute information to consumers about VITAL.

In other aspects of food safety and labelling, the progressive introduction of food control plans to the food service sector has seen a gradual improvement in their understanding of food allergen management and labelling requirements, but there is still a long way to go.

However there are a number of other matters that have required Allergy New Zealand’s attention. These include the ongoing delay in the passing of the Food Bill into legislation, the Australian Ministerial (COAG) initiated review of food labelling law and policy; emerging policy issues in the joint food regulation system; and the recent decision by the New Zealand Government to merge the New Zealand Food Safety Authority back into the Ministry of Agriculture and Forestry. Keeping an eye on the bigger picture while identifying potential issues of relevance to food allergic consumers and responding to these takes up a great deal of our time.

We continue to be concerned at the lack of guidance for manufacturers and consumers alike on the use of ‘free from’ statements. However with the clear intent of Government to reduce compliance costs overall, the issue increasingly is the lack of resource being applied to monitoring and enforcement. This will be a focus of our work in the next 12 months.

Funding of the health sector is also a concern. The effects of the recession and a change in government policies are starting to be felt in tight controls on health spending. In this environment it is increasingly difficult to put forward a successful case for more resources for allergy services. Time is also taken up in keeping an eye on developments in other sectors of health. This included making a submission on a formal proposal from Pharmac to change the arrangements for funding and access to infant formulas. We opposed this on the basis that (in our view) they had not understood the nature of cow’s milk allergy. Our submissions and those from other parties resulted in these proposals being deferred and reviewed.

However an issue that was identified as a result of the Pharmac proposal is the need for clearer clinical guidelines for diagnosis, referral and management of food allergy. This has lead to a focus increasingly on the bigger picture, including efforts to determine where the resource and support for clinical leadership lies. In looking at this and the ongoing issue of funding for an adrenaline auto-injector we have increasingly sought advice from public health experts, and participated in Pharmac’s stakeholder forums, as well as discussed related issues with members of the Medical Panel. These will continue to be the major focus of advocacy until they are resolved.

Where there has been significant progress is in the secondary health area where a number of general paediatric departments have establish food allergy clinics in recognition of the growing number of referrals in young children. It is likely the increase is due to a combination of greater awareness by parents and health professionals in part through Allergy New Zealand’s work; recognition of referral pathways by GPs through work done by the Paediatric Society’s Allergy Special Interest Group; and an actual increase in prevalence overall.

Safe management of severe allergies and anaphylaxis in the education sector, as mentioned above, is a major objective of our education service. Through promotion and distribution of our guidelines and education kits, information about the e-anaphylaxis module, and in hosting seminars, we have worked closely with Public Health Nurses from a number of District Health Boards. It is clear that food allergy and anaphylaxis has become an increasing feature of their workload; and at the same time they have developed strategies in working with schools to provide training and support. Again this is an area which is showing considerable progress, however there is more work to do in this as well as the early childhood and tertiary education sectors.

Allergy New Zealand also made submissions to the New Zealand Qualifications Authority in respect to the First Aid Unit Standards, and were instrumental in having a statement included in the new Unit Standard for First Aid in young Children (released September 2009):
“Responses to anaphylaxis must show awareness of the use of emergency response plans for at-risk children. Information on emergency response plans is available from the Australasian Society of Clinical Immunology and Allergy, http://www.allergy.org.au/ and from Allergy New Zealand, http://www.allergy.org.nz/.”

Written and oral submissions were also made to the Ministry of Education’s review of Special Education, pointing out that “management of this condition … is affecting an increasing number of children, is complex and presents significant challenges for parents/caregivers, students, and the school community as a whole. It has the potential to create major problems for schools in the future, and impact negatively on outcomes for students unless best practice is followed in all cases”. Allergy New Zealand will continue to work with the Ministry of Education to ensure guidelines are in place across the education sector.

4. Research

As will be noted from the outline of the Strategic Plan 2010-2013, Allergy New Zealand has made a significant commitment to research, particularly into the epidemiology and burden of food allergy in New Zealand. Before a problem can be solved, it needs to be understood. Therefore in order to advocate effectively we need to have evidence of the prevalence, patterns and trends of food allergy across our multi-ethnic population, as well as the impact on health, families and communities.

Research will also help us understand better the needs of our constituents so that we can improve our own services and programmes. Finally we want to encourage New Zealand researchers to look at why food allergy exists and how to prevent it in the future.

For the past three years we have partnered with the Auckland District Health Board in a food allergy research programme. An outcome is a pilot study into adverse food reactions in young New Zealand children. It is hoped the findings will be published in a paper in the near future. We have also worked with the Department of Psychology at AUT on a survey on ‘Parental perceptions of stress in children with food allergy’ which was conducted online through a link on Allergy New Zealand’s website. Again a paper is being submitted for publication.

In May we launched the Food Allergy Research Fund to support and encourage community-based research in the areas outlined above. A grant format is in process of being set up and an announcement will be made in conjunction with the 2010 National Conference.

Through my report I have made reference to a number of supporters. Others who have made a significant contribution are Mylan NZ, the Ted & Mollie Carr Endowment Fund, the Mt Wellington Trust, Four Winds Foundation, ASB Community Trust, National Lotteries Grants Board, J.R. Lewis Trust, Manchester Trust, Abacus ALS and Phadia AB.

The Southern Trust deserves special mention for funding the venue for this AGM and National Conference. The Board of Directors also deserve mention, as well as Michelle Goo who has continued to assist with our financial management in spite of resigning as Treasurer at the last AGM.

However one person above all deserves our accolade and that is our Honorary Ambassador, Sir Peter Charles Leitch QSM. Peter has continued to raise thousands of dollars for Allergy New Zealand, through personal donations as well as fundraising activities, many in association with the Mad Butcher and Suburban Newspapers Community Trust.

He has also networked, nagged, bullied and in countless other ways made things happen for us. He was truly deserving of the knighthood conferred on him in the Queen’s Birthday Honours List in June.

On behalf of all those living with food allergies as well as everyone at Allergy New Zealand, we thank Peter and the Leitch Family from the bottom of our hearts.


Penny Jorgensen
Chief Executive Officer
August 2010