NEWSLETTER

13th National Haemophilia Conference

This year's conference will include a concurrent program for young people living with haemophilia. The youth program is aimed at providing skills and strategies to young people managing adolescence and Haemophilia.

The program and additional information regarding the conference can be found at the following web address: 
   www.haemophilia.org.au/conferences 
or by contacting the Haemophilia Foundation Australia on 03 9885 7800, or via email to:
   hfaust@haemophilia.org.au

Funding is available to attend the conference:

The Haemophilia Foundation ACT has set aside some funds to enable individuals and families who wish to attend the conference to do so. If you, your partner, or your family would like to take up this opportunity please call: 

Clare Reeves on 6231 1600 or 0409 830 472
or Joe Guarnieri on 6288 5775

Haemophilia Foundation ACT Strategic Planning Session

Given that HFACT has officially come of age, the committee has decided to review its current practices and services by instigating a strategic planning program. An important part of strategic planning is self-assessment.

The Haemophilia Foundation ACT exists as an organisation to provide support, in all its forms, to people with bleeding disorders and their families in the ACT and surrounding districts. We need to ensure that the services we provide meet the needs of the individuals we represent. (cont…)

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The committee would appreciate feedback, good or bad (provided it is expressed constructively) on any aspect of HFACT's business practices, service provision or general operations from those wishing to assist HFACT in this activity.Here are some questions that may help you formulate your comments:

1. Have any HFACT services been of value to you? If not, why?

2. Are there any services you would like HFACT to provide?

3. How can HFACT improve the services that it currently provides?

4. Do you feel HFACT is effectively representing your needs? If not, what do we need to do?

5. Do you enjoy attending HFACT social events? If not, why?

6. What are the main haemophilia issues that affect you?

7. How can HFACT best assist you in managing the haemophilia condition?

Comments are not limited to those coping with the haemophilia condition. Our stakeholders in the Government, Community and Health Care sectors are also encouraged to participate.

If you wish to provide feedback, you can do so anonymously by sending your comments to:

    Haemophilia Foundation ACT,
    GPO Box 936,
    Canberra City, ACT, 2601

You can also email me at

     president@hfact.org.au

or call me, on 6288 5775, or Clare Reeves
on 6231 1600 or 0409 830 472.

Joe Guarnieri

President
Haemophilia Foundation ACT

HFACT 21st Celebrations

In February HFACT held a celebratory BBQ to acknowledge our 21 years as a support organisation for people with bleeding disorders in the ACT and region.

It was a wonderful day with about 30 members and medical professionals attending. It was great to catch up with members from the early days when we started out as the Haemophilia Support Group of the ACT.

Fred Wensing showed off his skills as BBQ Chef, the kids cooled off in the pool while their parents relaxed in the shade and caught up with friends, old and new.

Maria Wensing had ordered a cake from the Italian cake shop in Queanbeyan. Decorated in 'our' colours of red and white the cake was quite a work of art (see photo below.)

So we toasted HFACT's 21st in style with cake and bubbly, reflecting on our achievements over the past 21 years. We also paused for a moment's silence to remember friends and family who are no longer with us.

Once again, HFACT is indebted to Fred and Maria for opening their house to all and sundry and for making everyone feel welcome.

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Information from Liz Jarvis

Hi all,

Just a few sentences to clarify how things work here at the hospital.

If you require factor in a non-urgent situation, you need to ring first and order it. (Those on regular prophylaxis will have their factor already pre-ordered).

If it's a Thursday between 8:30 am and 5 pm, ring me on 6244 2286. If it's a weekday other than Thursday, you can order factor through Maria Boland (Clinical Nurse Consultant, Ward 14A). She is available Monday to Friday between 8:30 am and 5 pm on 6244 2188.

Requests for factor outside of these times will have to go through the Haematology Registrar on call. She/he can be contacted through the main hospital switch on 6244 2222.

• Urgent factor requirements will be arranged through the Canberra Hospital Emergency Department.

• Supplies of syringes, butterfly needles etc are not available through the pathology laboratory. You need to order them through me on Thursday, through Ward 14A (Oncology Outpatients) on other weekdays or through Ward 14B (Oncology Inpatients) outside of working hours.

• As a shift worker, my hours are irregular, but if you need to contact me on weekdays other than Thursdays, you can phone Ward 14A reception on 6244 2188 and they can usually track me down.

If you have a medical problem you would like to discuss with one of our doctors, you are welcome to just drop in on a Thursday.

If you telephone me first, I can give you an approximate time and arrange for a resident or registrar to see you.

Liz Jarvis

Specialist Haemophilia Nurse
Canberra Hospital
Haemophilia Treatment Centre

2005 Mid-winter Lunch on 10th July

As this goes to print there is snow falling on the Brindabella ranges and its pretty chilly outside. Our long, dry Indian summer is over and winter is well and truly here. What better way to warm up than around the fire in a social setting?

Join us at the Wensing's place for lunch on Sunday 10th July, from 12:30pm onward.

Please bring a plate to share and RSVP by calling Maria Wensing on 6291 7920 by Friday 8th July. Maria will coordinate everyone's contributions to the meal.

The Wensing's address is
     7 Brentnall Place, Fadden

Acknowledgement to ACT Health

The Haemophilia Foundation ACT would like to acknowledge that our newsletter has been partly funded through the assistance of a grant from ACT Health.