News - 2006
Debra Queensland - EB Dressing workshop (May 2006)
A dressing workshop was conducted on the Sunshine Coast in May 2006 to introduce DebRA-A Qld members to Molnlycke dressings. 32 people attended the dressing workshop which commenced at 11am to allow for dressing schedules and travel. Of the 32 participants, 9 were members with EB.
Attendees included Sheila Webster from Molnlycke Healthcare, Carmel Harris as guest speaker from Western Australia and Deanna Forsyth, an EB Registered Nurse from DebRA New Zealand. Other participants were made up of DebRA members, family, carers, nurses and friends who helped out on the day.
The open forum workshop consisted of a presentation from Carmel Harris, followed by Sheila Webster. Samples of Molnlycke dressings were distributed to all present at the workshop which included Mepilex Border, Mepilex Lite, Mepiform and Mepitac. Deanna was very resourceful and had very good input as DebRA NZ utilise these dressings on a regular basis with positive outcomes. In NZ all dressings are supplied by the Government. Only one DebRA-A Qld member was aware of the Molnlycke dressings and was currently using their products. After lunch informal discussions were held to gain advice about individual dressing needs. Another group discussion was held prior to departure at about 3.30pm.
56% of attendee individuals and groups gave feedback via the evaluation forms. 63% of participants who responded knew little about the topic prior to the workshop.
100% knew a lot more following the presentations, and 91% thought in relation to them the dressing workshop was beneficial.
100% of participants were satisfied with the presentations.
When asked what was good about the workshop the following comments included:
- Informative and kept to time. Everyone was friendly and mingled and discussed how they coped with their situation. Lunch was lovely.
- Meeting similar people – real life experience.
- Meeting other sufferers and sharing information
- Open forum input from other people with EB and benefits of specific dressings.
- Great to introduce all dressings and have interaction about different people’s experiences. Great to meet everyone and make more contacts.
- Everything.
- Meeting others with EB, I knew nothing about the dressings before. To see what others cope with and what they can achieve. Thank you.
- It was very informative and educational. From a carers point of view, learning of different categories of EB. The dressing workshop allowed everyone to understand what works for one doesn’t necessarily work for another. However, everyone was able to share their experiences and learn from each other’s procedures and techniques and dressing procedures.
- Learning about the products.
- Getting to meet the network of support – getting support from other EB people.
- The session I found very informative in a relaxed environment. I now have a greater understanding of the possible uses of these particular dressings on EB.
When asked what could be improved about the workshop the following comments were made:
- Nothing you could do better x 4
- More products for EB patients to trial.
- Maybe a couple of different dressing representatives from different companies – this may reduce prices due to competition.
- Would be good to have frequently and keep people in contact.
- Obviously the need for public and Government awareness to EB and the need for much funded medical support as well as support of trained carers. Be it in a support role or personal care.
- One on one would be good.
Additional comments included:
- Would be good to have contact with the group on a yearly basis for support.
- Make workshop 3 monthly or 6 monthly for feedback. Good day and was well organised.
- Great to be involved from NZ and to continue contact and support.
- Thank you for such a wonderful day, I feel full of inspiration and hope.
- Thank you for the opportunity to attend your workshop. The need for Government funding for dressings and medications is SO great for people with EB and the amount of support and care that is needed in a lot of cases is phenomenal. You’re doing a great job DebRA.
- In time hopefully be able to get some type of beneficial fundraising off the ground.
- While I personally do not have a need for dressings, I can definitely see the possible benefits these dressings may provide. The whole day I felt was a great success, I definitely appreciated the opportunity.
- It will be great if the dressings are as successful for our members as they are for the other states, wonderful to think that wounds will heal quicker and with less other dressings required. Only issue is the cost, ultimately have the Government supply in the long run.
Overall there was very positive feedback and the successful workshop provided options to trial new dressings to improve wound management outcomes, networking opportunities and time to catch up with members. Thank you to Lyn and Graham Passey for the lovely venue, Molnlycke Healthcare for funding the catering and Carmel for your inspirational talk. Also thank you to DebRA Australia for assisting financially and all others involved for making it possible.
Sue Holley
DebRA-A Qld Secretary
Sue Holley - It's a boy!
Anyone who has been associated with Debra in Queensland or nationally knows Sue, she's a committed, dedicated and solid foundation of the Debra organisation in Australia. She's been a quiet achiever, there for all of us when we need her and she's a star without doubt... All our love and best wishes and plenty of sleep to Sue and Paul!
"Baby Sam - (Sam Anthony McKenna) born on 24/01/06 at 8 pound 4.
Mother and baby doing well - both getting lots of sleep.
Sue"
Luke Sinanian's new Toshiba notebook
On behalf of Luke my son, I would like to extend a very special thank you to DebRA and it's generous donors for the Notebook they have purchased for his education and personal development.As many of us with EBDM are aware, the early years of development are crucial and Luke did suffer with motorskill development and his hand writing suffered consequently. Fortunately his teachers have recognised this and promoted the use of a keyboard rather than persist with his poor caligrahy. The notebook is a good tool for his learning development, he is behind and this is a good chance for him to accelerate his chances of fulfilling his potential.
It's a lovely Toshiba, it should see him through till the last years of Higher school, it's 3x faster than the one I use to develop the DebRA website (*sulk with envy*), it has 5 year warranty, plays DVD's and will not have any games on it, it's strictly educational. I have connected him to my wireless network, I will soon create an email address for him and hope he will soon participate in answering questions for parents and other kids with EBDMS.
New Queensland committee members
We are pleased to welcome to Debra Queensland, Mrs Kathy Hagan (President) and Mr Paul Galvin (Treasurer).