NEWSLETTER

President's message

Firstly let me welcome you all to the November newsletter and say what an honour it is to have been elected HFACT President once more.

I have been encouraged by the response HFACT has received to the call for new volunteers to take up various positions on the committee. I would like to welcome Jenny Lees, Len Minty and Leonard Wills to the HFACT committee. Together with Lorraine Saunders, Steve Wells, Ron Lees and Fred & Maria Wensing, we have a strong and dedicated team of volunteers to tackle the important issues affecting all of us living with haemophilia and related bleeding disorders.

On behalf of the new committee, I extend a very big thank you to last year’s committee for their efforts over the last year, especially to Fred Wensing who has given so much to HFACT over many years and has decided to step down as President. Fred will continue to be involved with HFACT as a committee member.

I look forward to catching up with as many of you as possible at foundation events. Furthermore, I would like to invite anyone to call or email me with suggestions for HFACT, or to express any concerns regarding haemophilia issues or just to say hi. I will also get in early and wish you and your families a Merry Christmas and happy and healthy 2009.

Joe Guarnieri

2009 Committee L-R: Fred Wensing, Len Minty, Joe Guarnieri, Jenny Lees, Maria Wensing and Steve Wells (not in picture: Leonard Wills and Lorraine Saunders)

Forthcoming HFACT Events

WOMEN’S WISDOM

The third Women's Wisdom Luncheon for the year will be on Saturday 29th November at the home of Jenny Lees, 48 Crowder Circuit, Stirling at 12:30. If you haven't been before, please come along.

It is a great opportunity for carers of husbands and sons who have haemophilia or other inherited bleeding disorders or women who carry the Haemophilia gene, to meet together informally in a friendly environment.

RSVP Jenny: 62888115 or Clare 0409 830472.

MEN’S GATHERING

Instead of meeting for breakfast, the final meeting of the men’s group for 2008 will be at 2pm on Saturday 13th December at the Regatta Point Café. Come along for camaraderie, to share experiences and to meet other men with bleeding disorders.

RSVP: Joe Guarnieri 6288 5775

or President@hfact.org.au

CHRISTMAS - NEW YEAR FUNCTION

Everybody is invited to an informal get together at 4.30pm on Saturday 17th January at the Cotter Reserve. Please bring food and drink for a picnic or BBQ. There are electric BBQs and a playground.

To get there, take the Cotter Rd, cross the big bridge over the Murrumbidgee River, go past the camp grounds and cross the small bridge over the Molonglo River. The reserve is then on your right.

See you there!

- 2 -

- 3 -

Mitchell celebrated haemophilia awareness week with his kinder class at St Anthony’s Primary School. He took along cup cakes with a red H on them to share with everyone. They played memory with the haemophilia memory cards, everyone completed the colouring competition and then each student received a party bag with a haemophilia pen, balloon, tattoo and stickers.

Oral and Facial Surgery

The Canberra hospital now has an Oral and Maxillo-facial surgeon on staff.

This is good news for people with haemophilia requiring extractions or other dental work. It means that you can have this work carried out in The Canberra Hospital, with the hospital’s haemophilia services available to you, and you will be covered by medicare.

The surgeon’s name is Dr. Dylan Hyam and he runs a clinic through the outpatient department every eight weeks on a Thursday afternoon. Appointments with him can be made by contacting his PA, Kali Aiesi at the Canberra Hospital on (02) 6244 2222.

You will need a referral from your GP or dentist before you can make an appointment.

- 4 -

HFA Council Meeting October 2008

I attended my first HFA Council Meeting in October as the Delegate for HFACT. The 21 agenda items were presented over a weekend in Melbourne so the experience was intense to say the least but inspiring and enlightening as well. We began the Saturday with a session on team building facilitated by Purple Soup so we all got to know each other very well within a short space of time. Most of the other Council members were familiar to me as I have met them at various conferences and most of them are old hands when it comes to Council matters, unlike me.

It was good to have Erin James representing the Youth Council as an observer. He informed the Council with good humour and enthusiasm and appeared to enjoy the experience. A couple of other observers joined us over the course of the weekend and this seems to be a very useful experience for all.

Most of the agenda items focussed on general administrative issues regarding the running of HFA and expenditure of grants and special funds/awards but lively discussion surrounded a few other issues. Most are keen to see how the new Australian Bleeding Disorders Register will work in practice and despite a few grey areas the updated database should be a positive improvement on the current system.

An eye-opener for me was the reports from other States. In particular from South Australia, highlighting the difficulties they have experienced in maintaining a functioning committee. The SA Foundation is currently being administered by the HFA to support them through the process of generating enough interest within their own ranks to again run the HFSA independently. The HFACT has struggled over the years to maintain a functioning committee but the problems in SA have put some things into perspective for me. I hope that our local members can see a benefit in supporting our HFACT in an effort to maintain the level of service provided to our members and the voice it allows us within the ACT Health system and more broadly through the HFA.

I hope to continue to serve the HFACT as a delegate at least for the remainder of the next 2 y ears and to increase my knowledge on all matters relevant to our group. It is a privilege to be the voice of HFACT at a national level and I look forward to learning, growing in confidence and contributing in a meaningful way over the next couple of years.

Lorraine Saunders

HIV Futures 6: Making Positive Lives Count

HIV Futures 6 is the sixth national survey of Australians living with HIV/AIDS. The survey is out now and will be available until 15 January 2009.

It can be filled out and submitted online by going to www.hivfutures.org.au

Paper copies are available from Clare Reeves, by calling 1800 064 398 or by emailing hivfutures@latrobe.edu.au. There is an envelope attached to the survey booklet so that you can return the survey anonymously and free of charge.

The survey is about all aspects of living with HIV. It is a valuable source of information on the needs of people who are HIV positive for community organisations, like HFA, hospitals and other service providers, doctors and government.

The HIV Futures surveys have been conducted every 2 years since 1997 by the Australian Research Centre in Sex, Health and Society, La Trobe University. About 1000 people living with HIV/AIDS respond each time, including people with bleeding disorders.

- 5 -

Haemophilia Review Clinics

I have been asked to write a short article about the haemophilia review clinics that are held at the Canberra hospital every six months.

Some of you are regular attenders and have probably noticed changes over the years, while others have never been. I thought it would be a good opportunity to explain how things work.

Generally I invite everyone with severe haemophilia, those using regular factor replacement, and people who have had a significant bleeding problem since last review. As I only work part-time in the hospital, I don’t always hear about problems that you have had, so if you feel that you want to come to a clinic and haven’t been invited, please let me know.

With the invitation comes a blood request form. We test for factor levels, the presence or absence of inhibitors, a full blood count including red and white cell counts, liver and kidney function, and occasionally more specific tests like Hep C and HIV or von Willebrand studies. We are interested in your trough level of factor, so it is important to have the blood test before you give yourself factor.

One purpose of the review clinics is for professionals from different disciplines involved in your care to get together to look at your needs in a holistic manner.

In the past these disciplines have included medical specialists from haematology, rheumatology and infectious diseases, as well as the physiotherapist, counsellor and nurse. We are currently trying to recruit to the team a paediatrician and an oral maxillary surgeon. We meet together before seeing you to discuss your care from our individual viewpoints, thus enhancing our understanding of your needs.

Another purpose of the clinic is to allow you to see several professionals on the same day, sometimes simultaneously, to sort out any problems you may have. As most of you appreciate, it can take months to get an appointment with a specialist and this helps to streamline the process.

Another benefit of the clinics is that they offer an opportunity for people in the haemophilia community to catch up with each other socially; either to see an old friend or to meet someone new in the community. This opportunity would be lost if you made appointments with the specialists on an individual basis.

If you feel that the clinics don’t meet your needs in their current form, or have any suggestions or comments to offer, I would be very happy to hear from you.

You can phone me on 6244 2286 on Thursdays or email me at elizabeth.jarvis@act.gov.au

Liz Jarvis  Haemophilia Nurse

Are you between 10 and 18 years old and interested in being part of an online community with other kids of your age?

Livewire is a free online community only for teenagers living with serious illness or disability in Australia. It is run by Starlight Children’s Foundation. Starlight is working with the Haemophilia Foundation Australia (HFA) to see whether teenagers with bleeding disorders would like to take part in Livewire.

- 6 -

Counsellor's notes

Are You Eligible For Centrelink Payments?

Mobility Allowance

Mobility Allowance provides assistance to people with disabilities who are involved in qualifying activities such as job seeking or any combination of paid employment, voluntary work, vocational training and independent living/life skills training, and who cannot use public transport permanently or for an extended period without substantial assistance.

Mobility Allowance is not taxable. You do not need to be getting any other payments from Centrelink to qualify for Mobility Allowance.

Sickness Allowance

Sickness Allowance provides assistance for people who are employed and who are temporarily unable to work due to a medical condition.

Carer Allowance
(Caring for a child under 16)

A person may get a Carer Allowance, (Child), if they look after a child with a disability or severe medical condition who requires a lot of additional care or attention in their own home.

Carer Allowance
(Caring for an adult 16 years or over)

Carer Allowance, (Adult), is a supplementary payment for carers who provide daily care and attention for an adult with a disability, severe medical condition or who is frail aged, at home.

For further information look up www.centrelink.gov.au on the internet, or contact me.

Have you read "National Haemophilia", September edition?

Therein are several interesting and informative items from those attending the 2008 Hemophilia World Congress. I was particularly challenged by Sharon Caris' Article "My Reflections of a Congress." She writes: "The concept of 'making a difference' might sound like an empty cliche to some people, but there is no doubt it is possible to make a difference in the bleeding disorders community."

I think we make a difference by getting involved in local and national haemophilia committees, organisations, functions and projects. HFACT is always looking for interest and support from its members so perhaps consider getting involved again, or for the first time, in 2009.

Travel Insurance and Superannuation

At our last Australian /New Zealand Haemophilia Social Workers' and Counsellors' Group Meeting in October, John Birrill from Maurice Blackburn gave us some useful insights and information on travel insurance and superannuation, particularly relating to haemophilia.  Check out the website www.mauriceblackburn.com.au or contact me, as I have copies of these articles.

I take the opportunity to say thank you for the support and encouragement given to me by so many of you during the year, enabling me to continue to contribute to and support the needs of the haemophilia and inherited bleeding disorders community within the ACT.

I wish you a happy, safe and peaceful Christmas.

Clare Reeves

Acknowledgment

The Haemophilia Foundation ACT would like to acknowledge
that our newsletter has been produced through funds
provided by ACT Health.