|
|
|
The Patient Partner Magazine |
July - 2000 |
||||||
|
|
Extracts from the newsletter
|
||||||||
|
EDITION
JULY - AUGUST 2000 |
|||||||||
All
those weeks and months of planning and organizing and in the blink of an
eye, Conference 2000 is now but a colourful memory. It was so wonderful to
see you all again. I have only two regrets… The first is that I didn’t
get to chat to anyone for any substantial length of time, and the second is
that it is such a great pity that we can only get together once
a year!
To say that the Villa Via turned out to be a magnificent venue would be the understatement of the year! The brochures always make a place sound too good to be believed, but in this case, every word of it was true… and then some! Thank you Linda and Searle for spoiling us to the nth degree. There are few companies that would treat 30 volunteers to two and a half days of resplendent luxury, gourmet feasting, a relaxing sunset cruise and a variety of stimulating learning experiences, not to mention an array of wonderful little gifts. Searle must certainly be complimented for “taking the grind out of arthritis!”
These though were not the only reasons that made this conference so especially memorable for me. It was some of the little things that happened that will always be remembered with a smile. For example, seeing Grace and Debs Woods trundling down to the beach, so that Grace could put her foot into the icy Atlantic waters… Or, hearing gentle, soft-spoken Thandi describe why the Presentation Skills session was so meaningful to her… And seeing Frans, Poppie’s husband, cheerfully helping our gang clamber on and off coaches and boats, up and down staircases and in and out of enveloping sofas. The fact that he didn’t put himself into traction on more than one occasion is astounding. He is always more than welcome to attend our conferences in the future, wouldn’t you agree?
Then of course there were all of the
one-minute speeches that were simply delightful. Who could ever forget
Roy’s poker-faced account of the pointlessness of tapestries? And
Kitty’s convincing description of the importance of self-tapping screws of
all things?!
I cannot remember Dinah’s topic for the life of me, but I do
remember so vividly just how confidently and eloquently she was “praating
the taal.” Her minute was far too short for all she wanted to tell us! And
the fun just never stopped.
Our in-house entertainment crew, the inimitable Prof Tony Ullyatt,
and Dr Anwar Bulbulia, amongst others, certainly peppered the conference
with many light-hearted and amusing moments.
Our
guest speakers were excellent. I have attached copies of Melinda du Toit’s
(seen on the left) talk on the benefits of Occupational Therapy, and of
Charlotte Lavine’s Presentation Skills slides. In fact, there is a bumper
pack of attachments to this newsletter, so you will have many hours of
pleasurable and informative reading ahead of you. Dr Gotlieb’s (below 
left)
talk was
exceptional. I have not asked him for a copy of it as I felt that most of
what he taught us was to enhance our
own understanding of arthritis. It was too involved for use in the time
constraints of our usual education sessions. Aside from the content of his
talk, I learnt a great deal from his slide presentation and from him as the presenter. Charlotte could have used him as the model for her
course the following day. He stood away from the screen so that every member
of the audience had a clear view at all times. He knew exactly what was on
each slide, so never once did he turn his back on us and talk to the screen.
I’ve seen quite a few speakers guilty of screen speaking! I liked the way
he repeated each question from the audience so that we could all hear it
before he proceeded to give his response. It is an effective technique of
ensuring that the speaker always has the audience’s attention. I found the
technique that Charlotte used of moving around the room in an attempt to get
people to project their voices, distracting. In my opinion, it works better
in a smaller room as it also generates greater contact between speaker and
audience.
| Pictures seen at conference | |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
Earlier this year, Sonette and Heather very kindly spent a day entertaining Dr Mary Bell, a visiting Canadian Rheumatologist. Dr Bell is very much involved in the Patient Partner Programme in Canada. She let us know at the very last minute that she had a whole day free before she was due to fly back to Canada. No sooner had our S.O.S message gone out to the Cape, when in a flurry of phone calls, Sonette and Heather had taken care of every little detail. Linda and I would like to thank them for going to so much trouble at such short notice to arrange a day that Dr Mary Bell is sure to remember forever.
Our two wonderful hostesses really spoilt her. They took her on a guided tour of De Toren Wijnlandgoed - Sonette’s wine farm and of the Cheetah Foundation – Heather’s pet passion. Dr Bell loved every minute of it, and mentioned that she wanted to organize an international Patient Partner Conference here in S.A next year. Sounds like a plan to me!
I drew up a list of a million and one questions for her to answer about their programme.
The Interview
Set-up
1. How many PPs are there in Canada?
120 country-wide.
2. Are all areas of Canada covered by the PPP?
Not yet, but within the next 3 years they should be.
3. Do they have co-ordinators? eg National / Regional. Who appoints them? Annual election? National Co-ordinator, appointed by Dr Bell.
4. How frequently do they train new recruits to the programme? 10 new PPs/year.
5. Do they have a great turnover of PPs or are they quite settled, once they join?
Lose about a third within the first 6 months. They find it a very demanding.
6. What is the degree of Searle involvement in the Programme?
Searle is only involved in the marketing side of the programme.
7. Do they offer the programme in French and English? All in English, except for three medical schools where it is done in French. A French Rheumatologist trains PPs separately for this.
8. Are PPs assessed at all? Annually? What format do they follow?
The co-ordinators are assessed once a year to ensure that a high standard is
maintained. The other PPs are taught and trained by a rheumatologist on a regular
basis. (Much like Dr Vanessa Burch and the Cape Town PPs.) If a PP is not up to
standard, they get extra one on one training. Also quarterly workshops to work on
skills.
9. Do PPs have any kind of a kit? Contents? Charts, plastic models.
10. Clothing? Uniform? Wear a tank top, shorts and a tracksuit.
Functions
Medical Students.
1. How established are they in the medical schools? Entrenched in curriculum? Yes
2. How often do they see students? Once or twice weekly.
3. Do they do full body? Only hand, wrist, knee, ankle, foot? Same as S.A.
4. Length of sessions with students? Same as S.A.
5. PP:Student ratio? Content?
3rd Years: 3 students/PP – focus on anatomy. Compare students’ “normal” joints vs their affected joints.
4th Years: 2 students/PP – focus on normal….early changes….late signs.
5th Years: 1 student/PP – Full Body and disease self-management.
6th Years: 1 student/PP – Long term planning, strength tests, Xrays, blood tests.
Post-graduates/Interns: carefully selected PPs for these sessions.
6. Are they left alone with the students? Doctor always present? Mostly.
7. Are they in any way involved in the assessment of the students? Written or practical exams? Informal report back on strengths and weaknesses.
8. Statistics in terms of information retention by students? Will send to Sonette.
9. Do they see Allied Health Professional students? Eg Physios, Ots, Podiatry students etc? Mostly Phsios and Ots. At the School of Pharmacy, they teach costs and side effects. Teach at Insurance Companies – Disability is emphasized. Also target government, but didn’t specify the details.
CMEs
1. With GPs? Allied Health Professionals?
With GPs - once a month. AHPs – every quarter.
2. Do doctors receive accreditation points for the CMEs? Yes.
3. Do PPs attend lectures by doctors? Mary Bell lectures to them.
4. What types of presentations do they do? Digital? Multi-media etc as we do? They have a video to show doctors. They also do small groups of no more than 5 doctors/PP. She doesn’t believe in “Flash and dash.”
Patient Education
1. Where and to whom? Provincial clinics? Private? Pharmacies? Shopping Malls? Retirement Villages? None at all. The Arthritis Foundation provides that service.
Remuneration – Same system as ours, except that Searle provides a bus.
1. Are they remunerated per function - travel and time? How much?
2. Does Searle provide transport, or must PPs make own arrangements?
3. Insurance? Personal and Vehicle? Medical coverage on injury - in accident or during a dem with students?
General
1. Communication channels? Monthly newsletter? Monthly newsletter.
2. Monthly meetings? Quarterly.
3. Annual Conferences? Not yet, but in the pipeline.
4. Annual lunches eg Christmas? Each site has their own.
Media exposure? - Magazines, newspapers, TV ads, TV Talk shows, Radio interviews etc? They train certain PPs to deal with the press - to convey specified information.
Rheumatology Management Course for Doctors by Debbie Els
The first in a series of Rheumatology Management Courses was hosted at the Manor Inn in Kyalami. This course is run by the SA Medical Association, and is sponsored by Searle and Pfizer. The doctors spend three intensive days learning about arthritis and its treatment. Patient Partners have been assigned one whole day to spend educating the doctors on practical joint examination skills and on the physical and emotional impact of the disease on a patient’s life.
We began the day with a data presentation overview of the Patient Partner Programme. Thereafter, two Patient Partners presented their brief personal and medical history of their disease. This was followed by an open discussion session with the doctors. A Rheumatologist was present to assist us during this part of the session, as there was a mixed bag of medical and personal questions from the doctors. It is during this session that the ice is usually broken and we are able to interact freely with the doctors.
Later, during a short “emotional Impact” session with them we discussed and described some of the issues that are pertinent to the patient as well as their family, friends and colleagues. The doctors were very receptive to our input as they said that this was an area to which they never devoted much thought when treating their patients. They were appreciative of our openness and candour. It was also during this session that we shared with them the writings of family members on their perspective of living with someone who has arthritis.
We then broke into small groups for the “hands on” demonstration sessions. We acted as the “living lessons in arthritis,” sharing with them our many findings, and the ins and outs of performing joint examinations. We also placed a heavy emphasis on how our physical changes impact on our daily function. They were fascinated by this and watched very carefully during the lunch break how we handled our eating utensils and poured from jugs etc!
In the wrap up session at the end of the day, we dispelled some of the more common mistaken beliefs regarding arthritis, and we asked the group for feedback on the day. They all agreed that by the third day of the course, they were exhausted and it was a Saturday, so they were very happy to spend the day in relaxed learning situations with us. They were unanimous in deciding that it was the most valuable and informative day of the course! They expressed great interest in learning more about sex, intimacy and arthritis.
