Ask an Expert: Seizures and Epilepsy

Time sensitive

BC Epilepsy Society presents

Ask an Expert: Seizures and Epilepsy
Tuesday, January 20th
7-9 pm
Chan Auditorium at BC Children’s Hospital
4480 Oak St.
Vancouver, BC

The BC Epilepsy Society presents a panel discussion with medical and social service professionals specializing in epilepsy care and support.

A neurologist, nurse clinician, and social worker will answer your questions and discuss epilepsy related issues at this event.

$10 or free with BC Epilepsy Society membership
For more information call 604-875-6704 or go to www.bcepilepsy.com

This educational event is part of the annual Speaking of Epilepsy lecture series presented by the BC Epilepsy Society.

The British Columbia Epilepsy Society is a non-profit, charitable organization dedicated to serving the well being of people living with epilepsy. We empower, educate, and support British Columbians living with epilepsy and their families and fund research to find a cure.

University of the Fraser Valley Nursing Students' Health Fair

Where do you turn if you have health-based question, but it’s not urgent enough to call your doctor? Nursing students at the University of the Fraser Valley (UFV) know it’s sometimes hard to find up-to-date information and that’s one of the reasons why they organize an annual Health Fair.

Each fall, UFV’s fourth-year nursing students host a public health fair, where they provide face-to-face information about a number of common health issues. This year’s event took place at Sevenoaks Mall in Abbotsford on Friday, October 17. Topics covered by the nursing students include the newly introduced HPV vaccine, high blood pressure, Type II diabetes, arthritis, childhood asthma, and preventive dental care for pre-school-aged children.

UFV Nursing faculty member Sheila Edwards says it’s a great opportunity for the students to thoroughly research a health issue and then present material and resources to the public in a friendly, informative way.

With the HPV vaccine being introduced to all Grade 6 and Grade 9 girls in this school year, Edwards says her students decided it was the perfect time to openly discuss the vaccine, its benefits, and the risks of cervical cancer. Their goal is to provide health-based answers to parents, girls, and women between the ages of nine and 26 years of age, and the public in general.

The students also determined that many parents have questions about dental care for preschool children; so again, this was a topic they have researched and are hoping to share their information.

The public health fair is part of UFV’s community health course taken by fourth- year nursing students. Edwards says it is a great opportunity for the students to deal directly with the public, while learning about topical issues. UFV nursing students have hosted these public health fairs for about nine years now.

Mental Health Café

Mental Health café deals with real issues in Fraser Valley communities

Don’t try to tell University of the Fraser Valley (UFV) philosophy instructor Peter Raabe that talk is cheap.

Raabe is a true believer in the power of talking about problems large and small. The North Vancouver resident introduced a Philosophy Café-style open discussion group specifically focused on mental health issues, to that community more than eight years ago. Since then a similar café group has been established in Coquitlam and a one is just taking root in Chilliwack.

The philosophy café, he explains, is an open forum for people directly affected by mental health issues. Raabe is adamant it is not a “typical self-help group” but a positive discussion that helps participants come up with ideas and suggestions about how to cope with mental health concerns and the wellness of a community.

Philosophy cafés give people a chance to discuss mental health issues affecting them and the communities where they live. Raabe says the sessions are open, friendly, and led by trained UFV students who keep the topics on track and topical.

Raabe, who is a philosophical counsellor when not teaching at the university, decided to get the students involved when he realized the concept of mental health cafés was becoming popular and his time to coordinate them was limited. A good facilitator, he says, will lead the discussion, keep it on topic, and ensure it remains respectful even though some sessions can get heated. And that’s where his UFV students come in.

“I wanted to pass on the legacy, so to speak, so I put out a call to the Psychology department for students who might be interested in taking this on.”

Eight students came forward and Raabe drafted a six-week training schedule that taught them the strengths and the exact role of good facilitator. He explains that it is a skill; good facilitators don’t dictate, they ask questions, sometimes act as the devil’s advocate to keep the conservation flowing, keep the discussion on topic, and know how to end it on time. When the UFV students completed the training, they were rewarded with three course credits they could count towards their degree.

“The students are able to apply their philosophical skills in practice. It’s a real shifting of gears for students — we’re putting them into a position of mentor or advisor for adults of many different age groups,” adds Raabe. “The students see some positive opportunities, both for themselves and for the participants, and they are really happy to be doing this.”

Four of those students continue to facilitate the mental health cafés which take place monthly in Coquitlam and now in Chilliwack. Next week, the Chilliwack café takes on the topic of the pharmaceutical industry’s impact on the mental health community.

Scott Campbell, with Chilliwack’s Mood Disorders Group, says the mental health cafés are a great opportunity for all residents of a community to come together to discuss topical issues that generally affect the community as a whole.

Raabe likens the mental health café to a book club. The group meets regularly; topics for the next gathering are generally picked at the end of a session. Anybody can attend, anybody can suggest topics, and all voices are respected and listened to.

“There is no limit to what topics they choose,” he says. “And the important part of the facilitator is to empower the group to pick its own topics. Theses groups have jelled quickly and that might be because they are looking for information and they are looking for skills to deal with mental health issues. They can also look at possible solutions. But with a philosophical discussion there are sometimes three or four solutions. It’s never a simple case of what’s right or wrong.”

The next Chilliwack mental health café takes place Saturday, Dec 13, at 1 p.m. in the Minto Room at Evergreen Hall, at 9291 Corbould Street. It is hosted by the Chilliwack Mood Disorders Group. For more information, people can contact Scott Campbell at 604-793-4906.

The Coquitlam group also meets Saturday, Dec 13 at 1 p.m at the Pinetree Community Centre, 1260 Pinetree Way, Coquitlam. The topic for the December meeting is 'Holidays and Mental Health.' For more information about the Coquitlam group, people can contact Teresa Spurr at teresa_cafe@shaw.ca

Raabe expects the idea of the mental health philosophy cafés will continue to grow and is hoping other communities start similar groups. When the need arises, he will train more students who take on the role of facilitator.

“I know of nothing else like this in Canada,” adds Raabe. “There is not another café that deals with mental health issues on a continuing basis. Now we have people who are making suggestions and coming up with possible solutions or ideas to deal with mental health issues. That’s what it’s all about.”

UFV offers a minor in Applied Ethical and Political Philosophy as part of the Bachelor of Arts program. Students can also take a variety of philosophy courses for general interest. Applications for September 2009 are currently being accepted. To find out more, visit www.ufv.ca .

LATCH-ON Literacy Program

North Island College launched LATCH-ON Literacy this past September, a literacy program developed specifically for young adults with intellectual disabilities, including Down Syndrome.

LATCH-ON, which stands for Literacy and Technology Hands-On, was initiated in 1998 at the University of Queensland in Australia by Dr. Anne Jobling, a Down Syndrome researcher, with the help of Dr. Karen Moni, a lecturer in English curriculum and literacy education. LATCH-ON was developed with a socio-cultural approach to literacy that uses a combination of technology and more traditional methods of instruction to enhance literacy development.

The program’s objectives include providing opportunities for young adults with intellectual disabilities to continue their literacy development in a post-secondary environment, using computer technology to enhance literacy, and enhancing self-concept and life opportunities (work placement) through the expected positive outcomes of improved literacy development.

North Island College welcomed both Dr. Jobling and Dr. Moni in late August where they provided a week-long intensive training session for NIC instructors, as well as for project partners from the Down Syndrome Research Foundation in Burnaby. It is expected that the program will reach up to 30 students from the North Island region during its two-year trial, 10 at each of the regional campuses located at Campbell River, Comox Valley and Port Alberni.

“This is the first time the LATCH-ON program has been offered in Canada, and we are extremely pleased that North Island College was selected as the pilot site,” says program coordinator, Sheila Doncaster, who also serves as the Chair of the Department of Access for Students with Disabilities.

Funded by the Ministry of Advanced Education and Labour Market Development, LATCH-ON is a joint project of North Island College and the Down Syndrome Research Foundation. For further information about the LATCH-ON program, please contact Sheila Doncaster at (250) 334-5079 or sheila.doncaster@nic.bc.ca.

Survey: Network for Patient Education in Canada

The Working Group on Canadian Patient Education is conducting a survey to assess patient education networking needs.

Individuals working in a patient education program at a health care centre in Canada are asked to complete an online survey

For more information or with questions contact:

Tracy Hutchings
905-537-4322 x 46620
hutchtra@hhsc.ca

OR

Farrah Schwartz
416-864-6060 x 3831
schwartzf@smh.toronto.on.ca

A collection of health literacy curricula

Links to health literacy curricula collected after a discussion on the National Institute for Literacy Health and Literacy listserv.

"The curricula are organized by the following types: University courses, Medical School courses, Professional training programs, and Adult Basic Education/ESL/ENL program courses."
http://www.advancinghealthliteracy.com/curricula.html

Plain Language Tools

Photo: JDurham http://photodaisy.blogspot.com

Finding a reader-friendly alternative to jargon or more complex terminology can be a challenge. The following plain language resources may help.

Plain Language Thesaurus for Health Communications
CDC National Center for Health Marketing
http://www.nphic.org/files/editor/file/thesaurus_1007.pdf

Reviewer's Guide to Evaluating Health Information Materials
by Sandra Smith, MPH, CHES
BeginningsGuides 2008
http://www.guidesforbeginnings.com/pdfs/articles/Reviewers-Guide.pdf

Plain English Lexicon: A Guide to Whether Your Words Will be Understood
Martin Cutts
Foreword by Christine Mowat, past Chair of Plain Language Association InterNational (plain)
http://www.clearest.co.uk/files/PlainEnglishLexicon.pdf

Words to Watch Fact Sheet
Pfizer Clear Health Communication Initiative
http://www.clearhealthcommunication.com/media/words-to-watch.html

Readability Toolkit
P R I SM [ Project to Review and Improve Study Materials]
Group Health Center for Health Studies
http://www.centerforhealthstudies.org/capabilities/readability/readability_home.html
Direct link to the Toolkit:
http://www.centerforhealthstudies.org/capabilities/readability/ghchs_readability_toolkit.pdf

Webcast: What is ABA and Why is it Important in the Treatment of Autism?

Presented by Suzanne Jacobsen, Ed.D., BCBA
Clinical Director, ABA Learning Centre

Webcast available from Monday, December 15, 2008
Advance registration now open.

In B.C., once parents receive a diagnosis of autism for their child, they are expected to set up a treatment program grounded on Applied Behavior Analysis. But what exactly is ABA and why is it so crucial in autism treatment? This presentation explains the differences and overlap between commonly used terms that frequently confuse parents including:

• Discrete trial
• Lovaas therapy
• Verbal Behavior
• Pivotal Response Training
• Positive Behavior Support
• Natural Environment Teaching

This workshop is illustrated by wonderful video of children engaged in ABA and having fun while learning communication, academic and social skills.

The Speaker: Dr. Suzanne Jacobsen is well known to professionals and parents across B.C. for her exceptional range of expertise as a diagnostician, educator, psychologist and behavior consultant. She has lectured across North America and in Asia on various aspects of autism treatment. A registered psychologist and certified teacher, Dr. Jacobsen is a Board Certified Behavior Analyst and a member of ACT's Advisory Council.

Who Should View this Webcast? This presentation was developed for parents primarily, but community professionals have found it to be informative in broadening their understanding of the breadth of ABA. To see feedback from previous participants, see the webcast overview page.

What is a Webcast? ACT webcasts are video-taped presentations that can be viewed over the internet by anyone with a fairly new computer and a high-speed internet connection. The webcast is an edited version of the live event. Subscribers can download a copy of the same handbook available at the event. This webcast is available at the convenience of the viewer, 24/7, for the full duration of your subscription. For information on ACT's move toward webcasts, see our fall 08 newsletter, ACT on Autism (.pdf).

A brief webcast preview is available for viewing on the ACT website. This will also ensure that your computer can access the webcast successfully. For further information on webcasting, including minimum technical requirements, see our webcasts FAQ.


To register call ACT* at 604-205-5467 or 1-866-939-5188.
*Office hours are Monday to Friday, 8:30 a.m. – 5 p.m.

2008/9 subscription cost for What is ABA? (available from December 15, 2008 to December 31, 2009):

Category 1 - Individual family or para-professional or student – $35
Category 2 - Family & One-to-One Staff (focused on 1 child or siblings – 8 or fewer users) – $100
Category 3 - Individual Professional – $50
Category 4 - Small Organization (8 or fewer users) – $200
Category 5 - Large Organization (9 – 20 users) – $300
Special – Don’t find your circumstance on this list – Call or email ACT for advice!

Manual: For a preview of ACT's new Autism Manual for BC, see www.actcommunity.net/AI/Manual.htm.
Bursaries: If you are low income, ACT has some bursary funds available. Please apply for a bursary before registering. See www.actcommunity.net/Foot/bursaries.htm for more information.

Support & Information: ACT’s team of Information Officers can provide support and information on a wide range of autism-related topics and can advise on whether a workshop or webcast is appropriate for your needs.
Contact ACT by email at info@actcommunity.net
or by phone at 604-205-5467 or 1-866-939-5188.

New article: "Literacy and Health: Implications for Active Living"

"Literacy and Health: Implications for Active Living"
by Irving Rootman and Joan Wharf-Higgins in
Alberta Centre for Active Living's WellSpring (October 2007 Vol 18, No. 4)

"What’s in this article for you? This article focuses on the following main topics:

• What is literacy and health literacy?
• Why should active living practitioners be interested in literacy and health literacy?
• Do people understand communications about physical activity?
• What can you do to address literacy or health literacy in your practice?"

Read more:
http://www.centre4activeliving.ca/publications/wellspring/2007/october.pdf

The Vocational and Rehabilitation Research Institute (VRRI) in Alberta is an excellent source of information for people with disabilities and people who work with them. Plain language booklets are available from the website on a range of health and life skills. Also available are short, practical publications for service providers to facilitate respectful and successful communication and support. The following recent item caught my eye:

Speaking Plain Language: How disability support workers can use plain language with clients who may have limited literacy or language comprehension skills by Aiofe Freeman. (FastFacts Vol 1, no. 2 March 2008)

While resources on plain language writing are happily fairly plentiful these days, information about how to communicate verbally in accessible language is more unusual. This brief guide with a reference list offers practical tips for conversing with people who have difficulty understanding because of literacy or language challenges. While these tips sound like common sense, consistently putting them into practice can be tricky.

Suggestions include:

• Think about your audience
• Be aware of your tone
• Reduce the amount of information you provide at one time
• Use short and everyday words
• Find out if you are being understood--but recognize that your listener may be uncomfortable admitting that they don't know what you're talking about!

How to be a "pleasantly assertive" patient

Researchers at University of North Carolina at Chapel Hill offer five ways to get more from your doctor.

These days, going to the doctor may seem more like speed dating than care giving. Patients get a few minutes with the clinician, and he or she does most of the talking. How can a person get the information they need and the outcome they desire in a 15-minute office visit? What if the treatment options don’t feel right? Is it too much for a patient to feel they are considered a partner in their own well-being?

Often, people leave their doctor’s office with more questions than answers, according to researchers at the University of North Carolina at Chapel Hill School of Medicine who are looking at how patients can get more of what they need from the health-care system. They have found that patients (or their advocates) who talk to physicians about their beliefs, values, lifestyle and
concerns can get better results from their health-care experience.

“Research shows if you ask doctors what they think is important to patients, and then ask patients what’s important to them, there’s not a great match,” said Dr. Michael Pignone, chief of the UNC division of general internal medicine.

But, as smart as doctors are, they aren’t mind readers, Pignone and his colleagues note. “A common problem is patients thinking that their physician will know how they – the patient – feels about specific decisions” said Dr. Carmen Lewis, assistant professor of medicine of general internal medicine and clinical epidemiology. “Doctors don’t – you need to tell them. People feel the doctor is the expert, but the individual is the expert about his or her lifestyle and how he or she values options and outcomes.”

Pignone offered some tips for becoming what he calls a “pleasantly assertive” patient, so that patients’ health-care providers can better help them.

1. Prepare for your visit. “It might seem silly, but it’s really helpful to write down your symptoms, complaint or problem, then summarize it into a couple of sentences,” Pignone said. “Bring your list and your summary with you to the visit. This allows the doctor to quickly review your condition and ask specific questions, instead of spending time focused on general issues. This one step can make visits 25 percent to 50 percent more effective.”
2. Have an agenda. “Before your appointment, decide what you want from the visit,” Pignone recommends. “For instance, if you’re suffering back pain, you might want to know what is causing the pain as well as a treatment plan for getting better. Make sure you share that with your doctor at the very beginning of your visit. It might feel funny at first, but your doctor will appreciate it. Sharing this information will help you all make better decisions about treatment, make the visit more efficient, and improve the chance that your health-care needs will be met effectively.”
3. Know your medical history and medications. “To help you get the treatment you need, doctors need to know what tests you’ve had – and when – as well as what medications you’re taking,” Pignone said. “Without that information, they might mistakenly re-order tests or prescribe medication that has a bad interaction with something you’re already taking. That can have adverse effects for your health and your wallet.”
4. Tell your provider about your values or lifestyle preferences that could affect your treatment. “It doesn’t make sense to agree to a treatment plan you know you won’t follow – it won’t result in your feeling better,” Pignone cautioned. “For example, if a Wednesday night smoking cessation class conflicts with your book club, it’s not going to be an effective intervention for you. On a more serious level, if you don’t want to deal with the uncertainty of a possible recurrence of cancer, you might prefer a mastectomy to a lumpectomy. Similarly, if you can’t afford medication or to take off work for recurring visits, tell your provider even if you’re embarrassed. There are often ways to work around the challenges if your care team knows about them.”
5. Clarify the decision to be made. “Sometimes you’re offered several options, so be sure you understand the alternatives and if you don’t, ask for clarification,” Pignone said. “Your doctor should be able to give you important details about each option either during the visit, or on a follow-up call. In addition to the details, ask them how good the medical information is.”

Pignone and Lewis acknowledged that this approach results in a very different doctor-patient relationship, but evidence shows that proactive patients tend to get more effective and efficient care.

“The sicker you are, the more this matters,” Pignone said. “But it’s harder to do. If you’re not comfortable interacting this way, involve other people who support you in your life to come with you and play this role.”