Archived newsletters
-
July 2009
-
April 2008
-
August 2008
Chairman's AGM address(11/11/08)
Welcome...
It has been an eventful, productive, draining but ultimately pretty satisfying year for EDANZ. I think it needs to be stressed that the EDANZ committee is made up of volunteers, all of whom have a close relationship with a family member who has been continuing to feel the affects of an ED. The committee is - Jane, Hanneke, Kirsty, Susanna, Peter and myself. I know I am not alone in saying the last 12 months have been tough on the family front...so as well as formally thanking our committee it would be a huge injustice not to say thankyou to all the committees spouses...and for me a special thanks to Pam.
SO....EDANZ has been something of a labour of love and we have achieved a great deal in a short time because we care about this illness and understand how hard it is on the sufferers and their families. Most people dont understand the illness but I think we do...or as much as anyone can without actually being a sufferer.
A year ago we were a group of concerned parents thinking that by putting our heads and hearts together we could perhaps improve the lot of ED sufferers and their families. We had just written up a constitution and voted in a committee but that was as far as had we got. We were unknown, unfunded and 'of no fixed abode'.
What have we done in the last 12 months....A quick summary remembering that our 2 key goals/aims are to lobby for better services and to help and support families with a member suffering from an ED.
The boring stuff first..
We are now offically a charitable trust.
We have successfully applied to funding organisations and received almost $15k in grants. A big thankyou goes to the Lotteries Commission, MacKenzie Trust and Pacific Sports and Community Trust.
We have a help line and a website. ( more on that shortly)
We are known - by EDS ( v well ), by the boards of the 3 DHBs, by other NGOs operating in this area esp EDEN, by a few MOH people in Wgtn and a few politicians and a few journalists.
PART 1
.... lobbying
1. We have presented to the 3 Auckland DHB boards and had an acknowledgment from 2 that there is a serious problem and they will act.
2. We have been involved in the regional ED plan and have provided a submission on what we would like to see in terms of ED treatment facilities in AKD
3. We have met with Jackie Blue -National's womens affairs and associate health spokesperson on serveral occassions and we have written to the minister of health and attended MHS public forums where we have voiced our concerns.
4. Hanneke and Susanna have a formal monthly meeting with 2 senior staff at EDS.
5. We have initiated a number of media articles, -both magazine and newspaper and also spoken on the radio to raise awareness around the issue of lack of services for EDs in AKLD
6.Susanna has been on the National Technical taskforce putting together specifications for ED treatment which has enabled Susanna to get in the ear of senior MOH officials
7. Peter initiated a national NGO day organised along with EDEN. This again was aimed at raising awareness and by combining our voice with that of other NGOs operating in this field giving more clout to our call for better services.
So we have got known...and depending on where you sit we are either doing a great job stirring the pot or we are a pain in the neck! I found it extremely gratifying to hear 1 longserving EDS staff member say that we had helped to lift the profile of ED services in Auckland to a point where it is near the top of the ADHB areas of concern whereas 3 yrs ago it wasnt a topic that was ever discussed. And this was reinforced by similiar comments from an ADHB board member...it is nice to be acknowledged and I think appreciated?
The frustrating part is we actually havent seen much/any action yet. But people involved in the health sector assure me we are making a difference and our efforts will be rewarded.
PART 2
Family help/support
We have a helpline which enables families in strife to call and talk to a sympathetic voice who understands a fair bit of what they are going thru. To Susanna who 'mans' the phone a very big thankyou. It is a time consuming and at times I am sure draining role that is invaluable. And to Kirsty who backs up Susanna thankyou.
We have set up a website..ed.org.nz. To Kirsty and especially Jane thankyou for all the work you have done to get this off the ground. None of us are computer gurus and to get where we have is a great effort and special thanks should also go to Celia Ryan who we relied on heavily and did a huge amount of work voluntarily ...not knowing if she would get paid or not. Thanks to the lottery grant Celia did get a modest reward for her efforts.
Between the helpline and email contacts through the website our calls for help continue to increase. In the last two months we have had over 50 separate contacts from families and organisations seeking help, advice and asisstance. The counsellor from Auckland Girls Grammar rang seeking help!
As well as emailing and talking over the phone we have met with parents individually to try and help them find their way thru the mine field.
Kirsty is running regular morning teas where carers/parents can get together and talk together with other people in similiar situations. As with the monthly contacts, numbers attending are increasing. These sessions are an opportunity to be open and honest about an illness that many people are very reluctant to talk about.
We have a small but growing library of books on EDs and will loan them out to interested families.
I have spoke at several EDS psych sessions which are help for families on the EDS waiting list. As most people here will know the period between realising you have a problem and getting into EDS can be lengthy and a nightmare. We are offering to try and help make that period a little easier.
We have given EDS some reading material for their waiting room to try and give families more information than was previously available and have a large noticeboard that will be put up in the waiting room before Xmas.
So against our two key objectives I think we can give ourselves a pass....I believe we have in our own small way helped many families and while we havent achieved our goal of an inpatient/day program in Auckland yet, we are certainly known by the decision makers and it feels that at long last the wheels of motion are starting to turn.
What of the future....
The lobbying will be more of the same. We will continue to pressure the DHB boards. MOH and politicians until we achieve our goals...an inpatient unit in Auckland, an integrated day program and a fully staffed and funded outpatient service at Greenlane.
The family support will continue to grow and we are looking at working more closely with EDS, perhaps to provide 'formal support' to families on the EDS waiting list. We will continue to add to, and enhance the website - with an interactive forum the next major initiative we are commissioning.
The morning teas, 1 on 1's growing library etc will all continue.
I said at the start its been a tough year for all of those on the committee but EDANZ has been a very satisfying cause and the camaradarie and achievements of our group have in a small but meaningful way compensated for the heartache and stress having a sick family member has caused.
Before finishing I want to say a special vote of thanks to Hanneke and Peter who are stepping off the committee due to increased committments in other areas. Their contribution has been fantastic and Peter in particular has been instrumental in EDANZ's success. His knowledge of the health sector, guidance and encouragement has been invaluable. Both Peter and Hanneke have agreed to continue to be available to help where required and Hanneke will continue to be involved in the monthly meetings with Susanna and EDS.
Thankyou
Richard Leggat
Archived newsletters
- July 2009
- April 2008
- August 2008
