NEWSLETTER

A busy few months

In particular, the informal men’s and women’s groups have got off to a great start and it looks like they will meet regularly. Hopefully not so regularly that waist lines suffer...

Then, on World Haemophilia Day, a group of HFACT members toured the John Curtin School of Medical Research and had lunch in the Vanilla Bean Cafe.

Its not all beer and skittles though, with a serious focus on the very important issue of paediatric pain management. Clare Reeves and Liz Jarvis organised a seminar presented by Dr Angela Mackenzie at the Canberra Hospital. See page 2 for a full report.

The seminar was followed up by dinner at Fred and Maria’s house, allowing members to meet and talk with Dr Mackenzie.

Women’s Wisdom - Afternoon Tea at the Hyatt

The idea of the need for a women’s group came out of the National Haemophilia Conference of late 2007. Sharing ideas and strategies at informal gatherings would help reduce the feelings of isolation felt by some women.

It was universally agreed that the get-together was a great success and the food quite delectable! We agreed more meetings should be held and the next has already been penned into the diary - a luncheon at Lorraine’s on 21st June.

Mary-Lou Minty

L-R: Karen Pattinson, Wanda Haponik, Jenny Lees, Christine Anderson, Mary Lou Minty, Julia Minty, Lorraine Saunders and Kate McKenzie. Also present but not in this photograph were Patti Luhrs, Clare Reeves.

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A presentation by Dr Angela Mackenzie at the Canberra Hospital on Thursday 22nd May.

Dr Mackenzie has been a consultant paediatrician at the Royal Children's Hospital in Melbourne for 25 years. She has worked in the Haematology Department, particularly with families affected by haemophilia, and in anaesthesia.

Dr Mackenzie was a presenter at the 2007 Haemophilia conference in Canberra. As a result of that session HFACT and the Haemophilia Treatment Centre invited her to visit the Canberra Hospital and make a presentation to parents, interested staff and members of HFACT. The presentation drew a larger than expected audience. Over 50 people including parents and medical, nursing, physiotherapy, pathology personnel, from both within and outside the hospital, attended.

Dr Mackenzie’s work with children led her to believe that there must be a better way to carry out medical procedures than the accepted practise. She also observed that parents want to help but become distressed.

Over time she has developed what she calls the friendly approach, a name taken from the advice to “Be all around friendly” given to her by a 10 year old patient.

Dr Mackenzie sums up her approach thus:

     Free a child from fear

     Re-educate yourself about pain

     Improve Communication

     Essential child development

     Nine Techniques

     Dare to question

     Let yourself breathe

     You and your values

Although the actual techniques that Dr Mackenzie uses are only a part of the whole approach, the ‘NineTechniques’ can be summarised briefly as:

In general:
     Family as active participants
     Engage child appropriately where possible
     Monitor for feedback
     Be flexible and creative

3 Pharmacological techniques:
     Sucrose, as it releases endorphins
     EMLA cream
     50% nitrous

3 Physical techniques:
     Positioning
     Relaxation e.g. wet noodle ("go like a.,,'')
     Breathing, blowing

3 Psychological techniques:
     Self talk
     Distraction
     Imagery and hypnosis

There isn’t space here to go into the full details of each point of the friendly approach. So if you were unable to attend but would like further details of the presentation please contact Clare Reeves.

The effectiveness of the approach was highlighted in short videos that Dr Mackenzie screened. Techniques that allowed small children to accept having treatments such as canular insertion calmly and without fuss. Techniques that allowed a teenager to undergo an invasive procedure normally performed under general anaesthetic using self hypnosis instead. The videos were quite an eye opener for the audience and generated a lot of discussion about the techniques that can be implemented in a hospital setting.

Dr McKenzie finished off the day at the HFACT mid-winter dinner around the fireplace at Fred's place.

The seminar required a significant effort by Liz Jarvis and Clare Reeves to bring to fruition. So the HFACT committee would like to thank both of them for all their hard work in making it a success.

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World Haemophilia Day is held on April 17th every year and honours Frank Schnabel, who was born on that day and whose vision led to the founding of the World Federation of Haemophilia. On the day, haemophilia organisations worldwide hold events to raise awareness of the issues affecting people with haemophilia.

One of our members, Kate McKenzie, works at the John Curtin School of Medical Research (JCSMR). So for this year's World Haemophilia Day HFACT was lucky to be offered a guided tour of the new wing of JCSMR. JCSMR is one of Australia's most prestigious research institutions. Areas of research include molecular bioscience, neuroscience, immunology and genetics. Some of the international prizes awarded to JCSMR scientists include two Nobel Prizes, the Japan Prize and an Albert Einstein World Award.

This fantastic new facility is the first stage of a three stage redevelopment of the JCSMR buildings, vital as the original buildings constructed in the '50s are outdated and do not comply with modern standards. After a welcome morning tea and posing for the obligatory photograph, we were taken on a grand tour by Dr Madeleine Nicol, JCSMR's effusive Public Affairs Manager.

The new building has been designed around the theme of the DNA helix. The front facade of the building features a sequence of twisting glass surfaces that form part of a spiral.

View of the entrance of the new JCMSR building,clearly showing the spiral of glass surfaces representing a DNA helix.

The building's exterior feature four repeating sculptured panels. While each panel represents one of the DNA bases, it also has a second meaning. A biological likeness of Da Vinci's Vitruvian Man represents humanity. A helix created by entwined sheaves of wheat represents Australia. A jumble of the letters ACT and G represents the A.C.T. Finally, honeycomb cells in the shape of the HC Coombs building represent the ANU.

The building has also been designed to have a high environmental sustainability through clever use of energy efficient technologies, materials, natural light and ventilation.

L-R: Len Minty, Lorraine Saunders, Ron Lees, Mary-Lou Minty, Patti Luhrs, Maria Wensing, Clare Reeves and Kate McKenzie . Photo by Karen Edwards, © JCSMR 2008

Thank you to Kate and Clare for organising the day and to Madeleine for showing us round. If you missed the tour but are interested in visiting, JCSMR holds annual open days in August.

For more information about JCSMR visit the their web site at http://jcsmr.anu.edu There is a good animated virtual tour of the new building available in the ‘About’ section.

Ron Lees

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A Message from Our Counsellor

I will be on leave from 1st July to the end of August. During this time, Stephanie Buckle will be available as needs arise. She can be contacted at Westlund House on 6257 2855 Mondays, Tuesdays, Wednesdays, 9:00 till 5:00.

If Stephanie is not available, you can also contact Fred Wensing on 6291 7920 and he will be able to put you in touch with the appropriate services.

Clare Reeves

28th International Congress

The 28th International Congress of the World Federation of Haemophilia is being held in Istanbul Turkey from 1 to 5 June. More than 4000 delegates from 115 countries will be attending to hear the latest information about Haemophilia and treatments.

Our very own Joe Guarnieri is attending this congress and we look forward to hearing about his experiences.

Acknowledgment

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