PO Box 888 KENSINGTON NSW 1465 AUSTRALIA Nola Buck (02)9636 6515
Editor's Corner
At the Annual General Meeting held on Saturday 1
June 1996, the following members were elected to the Management Committee:
Nola Buck (President), Janet Malone (Vice President), Gillian Thomas (Secretary),
Marianne Newton (Treasurer), Nancye Bonham (Support Group Co-ordinator),
Terry Fletcher, Bernie O'Grady, Allan Quirk, Alice Smart, Doug Sutherland,
Merle Thompson, and Warwick Wakefield. Congratulations to all.
This Newsletter contains further details on workshops
which will be presented at our International Post-Polio Conference, Living
with the Late Effects of Polio, to be held 8-10 November at Merroo
Conference Centre, Kurrajong. Registrations are being steadily received,
but Merroo can cater for a lot more delegates yet. Delegates will be attending
from Japan, Korea and New Zealand, as well as from Queensland, Victoria,
South Australia and Western Australia, and of course, New South Wales.
This is a unique opportunity to learn what people throughout Australia
and overseas are doing.
Two Japanese couples will be attending the Conference
and are planning to stay on for a while to see the sights of Sydney. They
are looking for somewhere to stay. If you can offer to put them up, or
if you speak Japanese, please give Nola a ring on (02) 9636 6515. We'd
love to be able to show our visitors some old-fashioned Australian polio
hospitality.
Those of you who have registered should by now have
received a letter from Merle Thompson asking for your travel plans and
for you to nominate your preference for workshops. If you have not yet
heard from Merle, give her a ring on (047) 58 6637.
On the accommodation side, all ensuite rooms have
now been taken, but there are still less expensive non-ensuite rooms available.
Remember that commodes can be provided if required. If you have questions
about any aspect of the Conference, please don't hesitate to give Conference
Co-ordinator Jean Skuse a ring on (02) 9810 7864, or contact Nola Buck
on (02) 9636 6515. To assist our planning, please register as soon as possible.
Exciting prizes for the fund-raising raffle mentioned
in the last Newsletter have now been assembled. This is the first time
the Network has organised such a raffle. We decided to do so not only to
raise funds for the Conference but to boost the Network's operating funds.
As the Network continues to grow, so too do the costs associated with running
it. We need the support of members to make this venture a success. The
enclosed letter gives further details of the raffle which will be drawn
at the Conference. Please help out.
A Special General Meeting
is to be held on Saturday 7 September 1996
at the Independent Living Centre in Ryde,
commencing at 11:00 am. Formal notification
of the meeting is hereby given. The business of the meeting will be to
consider proposed amendments to the Network's Constitution. A document
detailing the proposed changes, and the rationale behind them, is included
with this Newsletter. Please take the time to read the changes carefully.
We urge you to attend this important meeting. The Constitution lays down
the rules by which the Network operates. It is important that you have
your say about the proposed changes.
Following the Special General Meeting, a Seminar
about the Home and Community Care program
will be held commencing at 2:30 pm.
Full details are given on page 2.
Date: Saturday, 7
September 1996
Time: 2:30 pm (bring
your lunch - tea and coffee will be provided)
Venue: The Independent
Living Centre, 600 Victoria Road, Ryde
Parking is available on the premises. It would be
appreciated if
those who are more mobile would leave the closer
parking for
members who are only able to walk or wheel short
distances.
Following the Special General Meeting, our Seminar
speaker will be Cathy Moore, Home and Community Care (HACC) Policy
Officer, NSW Council of Social Service (NCOSS). NCOSS is a peak state-wide
organisation which represents all community sectors: people with disabilities,
the aged, children, homeless people and so on. Cathy has worked in the
disability area for a number of years and has a good appreciation of our
needs.
Cathy will give an overview of HACC and talk about
the various programs that come under its umbrella, such as Home Care, home
modifications, and Meals on Wheels. She will explain the eligibility criteria
to receive HACC services.
There will be time after Cathy's talk for a question
and answer session. As usual, afternoon tea and a chance to catch up with
friends will follow. We hope to see you there.
The PwD/HACC Consumer Advocacy
Project
While we are on the subject of HACC,
People with Disabilities (NSW) has received funding for a consumer participation
project to find ways that HACC can best meet the needs of younger people
with disabilities. The PwD Project Officers will be conducting focus groups
across NSW to enable you to have a say. All venues are disability friendly.
If you are aged 16-64, are using HACC services, and are interested in participating
in any of the focus groups listed below, please contact the Project Officers
at PwD on (02) 319 6622 or toll free on 1 800 422 015.
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| 19/08 | Community Centre, Parkes District Hospital | PARKES |
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| 21/08 | Level 1, Suite 116, 114-116 Penrith Street | PENRITH |
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| 23/08 | Tuggerah Lakes Community Centre, Bay Village Rd | BATEAU BAY |
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| 26/08 | Nova Employment, 4-8 Woodville Street | HURSTVILLE |
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| 02/09 | Community Health Centre, Brentwood Street | MUSWELLBROOK |
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| 04/09 | Activities Room, Kent House, 141 Faulkner Street | ARMIDALE |
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| 12/09 | Italian Welfare Organisation, 21 Stewart Street | WOLLONGONG |
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| 13/09 | Multi-Purpose Centre, 123 Flora Street | SUTHERLAND |
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| 16/09 | Lismore & District Workers' Club, 231 Keen Street | LISMORE |
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| 17/09 | Ex-Servicemens' Club, Cnr Grafton & Vernon Sts | COFFS HARBOUR |
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| 18/09 | Hastings Shire Council, Cnr Lord & Burrawan Sts | PORT MACQUARIE |
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| 24/09 | Eastern Sydney Disability Service, 197 Birrell St | WAVERLEY |
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| 25/09 | Alice Ferguson Centre, 30 Caldwell Street | MEREWETHER |
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| 04/10 | Narellan Community Health Centre, 14 Queen St | NARELLAN |
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| 08/10 | SS&A Club, 570 Olive Street (enter via David St) | ALBURY |
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| 09/10 | Wagga Wagga RSL Club, Dobbs Street | WAGGA WAGGA |
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| 10/10 | Griffith Regional Theatre, Neville Place | GRIFFITH |
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| 15/10 | Bankstown Library, 62 The Mall | BANKSTOWN |
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| 17/10 | Campbelltown Civic Centre, 91 Queen Street | CAMPBELLTOWN |
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| 21/10 | Bega Valley Shire Council, Zingel Place | BEGA |
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| 22/10 | Dr McKay Community Centre, 9 Page Street | MORUYA |
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Rehabilitation
Services in NSW for Post-Polios
As promised in the last issue, the following is
a summary of rehabilitation services provided by the Area and District
Health Services in New South Wales which responded to a request for information
from Management Committee member Merle Thompson. You are welcome to contact
Merle for further details, by writing to PO Box 38, Woodford 2778 or by
phone or facsimile to (047) 58 6637.
Castlereagh [Coolah, Dunedoo, Coonabarabran,
Baradine, Mudgee, Gulgong]
Contact: Peter Frendin, District Director of Nursing/Community Health
Services
Physiotherapy at each hospital (some part-time).
Podiatrist and Occupational Therapist on a bi-monthly basis to most centres.
Physician visits to Mudgee and Coonabarabran on a regular basis. Referrals
for other services to Lourdes Hospital in Dubbo.
Central West [Orange, Canowindra, Cowra,
Cudal, Eugowra, Grenfell, Molong]
Contact: Graeme Robson, Project Officer
Inpatient assessment and treatment at Apex Rehabilitation.
Outpatient physiotherapy and occupational therapy. Upper limb orthotics
from Occupational Therapy Department. Prosthetic and Orthotic Clinic once
every three weeks. Hydrotherapy group sessions. Home assessments. Physiotherapy
and occupational therapy at some smaller district centres.
Clarence [Grafton/ Maclean]
Contact: Michael K. King, Director of Clinical and Community Services
No formal rehabilitation service.
Physiotherapy and occupational therapy at the
hospital and community health service.
Evans [Bathurst, Blayney, Lithgow, Oberon,
Portland, Rylstone]
Contact: Dr Sophia Lahz, Director of Rehabilitation
Bathurst Rehabilitation Centre offers in-patient
and out-patient services. A multi-disciplinary co-ordinated program can
include physiotherapy, occupational therapy, hydrotherapy and driver rehabilitation.
Prosthetics and orthotics clinic every three weeks.
Hume [Albury district]
Contact: RS Parkinson, Manager Clinical Services
Rehabilitation and brain injury service in Albury
with physiotherapy, occupational therapy, speech pathology, social work,
psychology, orthotics and prosthetics. General acute rehabilitation facilities
and allied health professionals in Wangaratta and Wodonga.
Lower North Coast [Taree/ Wingham]
Contact: Dr WJ McClean, Consulting Physician and Geriatrician, and
Mrs G Hagan, Manager Nursing Services Aged and Extended Care
Assessment and rehabilitation unit [16-bed] at
Wingham Hospital with physiotherapy, occupational therapy, speech pathology
and hydrotherapy.
Macleay Hastings [Port Macquarie]
Contact: Robert Gore, General Manager
There is a co-ordinated service delivery model
for "early intervention" and "aged care" in conjunction with Port Macquarie
Hospital. All of the listed services are available in the district but
not linked into a rehabilitation program although it is common practice
for the practitioners to meet in multi-disciplinary teams. A service plan
is in preparation.
Macquarie [Cobar, Coonamble, Dubbo, Gilgandra, Gulargambone,
Narromine, Nyngan, Trangie, Warren, Wellington]
Contact: Ann Ryan, Planning Officer
Limited resources in many specialist and therapy
services.
Mid-North Coast [Coffs Harbour]
Contact: Mrs Kyra B Kelly, District Director of Nursing, Patient
and Primary Health Care Services
A rehabilitation policy is being formulated and
input would be welcome.
Monaro [Bombala, Cooma, Delegate, Queanbeyan]
Contact: Bill Dargaville, General Manager
Queanbeyan has outreach facilities; in-patient
services are provided at Woden Valley Hospital; Cooma has a fuller service
including inpatient accommodation. A copy of the rehabilitation plan will
be provided when it is completed.
New England [Armidale]
Contact: Dr G DeGabriele, Director Aged Care and Rehabilitation
Programme
The district provides a generalist rehabilitation
service for medical conditions and "slow stream orthopaedics". Allied health
staff are available in Armidale and Inverell. Services vary in smaller
towns but Dr DeGabriele visits on a regular basis. A rehabilitation plan
will be developed during 1996.
North West [Tamworth]
Weekly outpatient clinic run by rehabilitation
specialist - co-ordinating mechanism for range of services. Range of allied
health professionals including eg orthotics, home modifications. Prosthetic/orthotic
clinic in Tamworth every third week.
Orana
Bourke: Contact: Marie Savage, Nurse Unit
Manager
Full-time physiotherapist at the hospital. Podiatrist
visits once every 3 months. Occupational therapist approx. once every 3
months. Referrals for other services to Lourdes Hospital in Dubbo. [Visits
from Commonwealth Rehabilitation Service which is good contact.]
Brewarrina: Contact: Paulene Hertslet,
Health Service Nurse Manager
Physiotherapist: 1 1/2 days per week. Occupational
therapist: approx. 6 times per year. Podiatrist: 5 or 6 visits per year.
Orthopaedic specialist: 3 or 4 visits per year. Physician: 6-weekly visits.
Speech therapist: 3-4 visits per year.
Riverina [Coolamon Ganmain, Cootamundra,
Gundagai, Junee, Lockhart, Temora, Wagga Wagga]
Contact: Mrs Nancye Piercy, General Manager
Riverina Health Service has a Rehabilitation
Unit with specialist, Dr Ronald Howes and a multi-disciplinary team of
allied health professionals [inpatient and outpatient]. Comprehensive service
at Wagga Wagga Base Hospital. Referral centre for southern NSW.
South Coast [Bateman's Bay, Bega, Moruya,
Pambula]
Contact: Mr Craig Hamer, General Manager
Limited services. A plan will be established
in 1996.
Tweed Valley [Murwillumbah/Tweed Heads]
Contact: Ms Kathy Baigent, Allied Health Manager
Individual assistance by allied health staff
in both towns. Plans for a rehabilitation ward at Murwillumbah Hospital
are progressing well.
Central Coast
Rehabilitation service including consultant in
rehabilitation medicine, staff orthotist, outpatient occupational therapist,
community occupational therapist and physiotherapist - Gosford and Wyong
Hospitals.
Central Sydney
Concord and Royal Prince Alfred Hospitals can
provide co-ordinated assessment and rehabilitation treatment. Canterbury
Hospital provides a district assessment and rehabilitation service in consultation
with above hospitals.
Hunter
Contacts: Mr Bryan Dunn, Executive Officer and Dr G. Booth. Clinical
Director, Hunter Area Rehabilitation Service
This Service has close contact with the local
support group. Services available include geriatrician and rehabilitation
medicine specialists; specialised hydrotherapy, occupational therapy and
physiotherapy.
Illawarra [Coledale, Port Kembla, Homeleigh,
Kiama and Shoalhaven hospitals]
Contact: Dr Christopher Poulos, Director of Rehabilitation and Geriatric
Services
Comprehensive range of rehabilitation services
- rehabilitation medicine, physiotherapy, occupational therapy, podiatry
and access to orthotics and links to orthopaedic and respiratory specialists.
Penrith
Rehabilitation services at Governor Phillip Special
Hospital.
South Eastern Sydney [Sydney Harbour to
Royal National Park]
Contact: Ms Liz Kristensen, Health Planner
This area includes the Post-Polio Clinic at Prince
Henry. Rehabilitation services are also available at a number of other
centres. A copy was provided of the Strategic Plan for Rehabilitation Medicine
1995-2000 for Southern Sydney Area which was amalgamated into this area.
South Western Sydney
Advice was to contact Dept of Rehabilitation
and Geriatrics at nearest hospital. A copy was provided of the Aged Health
Services Area Strategic Plan.
Western Sydney
Contact: Ms Chris Blatch.
"Every effort is made to meet the groups' needs
through mainstream services." A copy of the business plan including rehabilitation
services was provided.
International Post-Polio Conference
8-10 November 1996
Living with the Late Effects of
Polio
9:30 am to 10:45 am
Parallel Sessions
4. What I have Found Helpful
People who have had polio are invited to participate
in this session and share their experiences with others. The aim is to
have a variety of short, informative contributions.
4:15 pm - 5:30 pm Parallel
Sessions
2. Respiration Matters!
Dr Elizabeth Ellis, Senior Lecturer, Sydney University; Consultant,
Sleep Disorder Centre Australia Pty Ltd
This session will examine the role of the respiratory
muscles in supporting the respiratory system. We will look at how the work
of breathing changes and how the performance of the respiratory muscles
can be reduced by illness. In addition, we will review the evidence for
how various interventions can affect an individual's condition. There will
be plenty of opportunity for questions and challenges to physical measures
currently offered.
3. Polio and the Experience of Indigenous People
Gail Kennedy
Gail contracted polio as an infant. She will
talk of her personal experiences as an Aboriginal with polio, both then
and now. She will invite questions and discussion.
9:45 am - 11:00 am
Parallel Sessions
4. Wellbeing for Polio People
John Smith is a Uniting Church minister who is currently enrolled
in PhD studies at Edith Cowan University, Perth. He has conducted research
into the impact of polio.
Polio has made an impact on the kind of life
choices we have made. Even without our realising it our capacity for work,
relationships, play and spirituality have all been affected. The advent
of the late effects of polio has raised new questions for us to consider
and so we must ask - What is well-being for us now? This workshop will
provide a context for participants to reflect on their own experience and
share stories with others, to take stock of the demands and the opportunities
life offers in the present, and consider where we invest our energies in
the future.
11:30 am - 12:45 pm Parallel
Sessions
1. Women and Disability / Men and Disability
Concurrent sessions focussing on particular gender
issues relating to polio. The workshop provides an opportunity to discuss
these issues with persons of the same sex.
11:30 am - 12:45 pm Parallel
Sessions (continued)
2. How to Record an Oral History of your Experiences
and your Thoughts About Polio
Mary Le Clair, Communication Consultant
Mary arrived in Australia from Canada in 1973.
She has her own public relations business and designs and presents segments
of public platform speaking and other aspects of communication. In Mary's
words, the workshop will be "fun and cathartic".
Remember - If you are unable to come
to Merroo for the whole weekend, you are most welcome to attend on a daily
basis. Simply complete the Day Attendance section of your Registration
Form. You owe it to yourselves to attend this important Conference;
it may be years before you have the chance to hear such excellent speakers
again so close to home. Don't miss the opportunity to hear what other polio
survivors have to say - there's no need to re-invent the wheel! Even if
you can only make it for one day it will be well worth it. If you have
any questions or special needs don't hesitate to contact Jean on (02) 9810
7864 or Nola on (02) 9636 6515.
Wanted : Women Who Have A Disability
The Royal Rehabilitation Centre, Sydney, in conjunction
with the Area Women's Health Unit, is conducting research to identify health
care issues and needs of the mature woman with a disability. The information
gained from this study will be used to develop new, and improve existing,
services. If you are between the ages of 45 and 65, live in the Northern
Sydney Area Health districts, use health facilities and would like to be
involved in the study (by either participating in small group interviews
or completing a simple questionnaire), please phone during business hours
on (02) 9808 9345 and ask for Joanne Lawrence or Wendy Turner.
Bits 'n' Pieces
Litigation
Versus Science: What's Driving Decision Making in Science?
Professor Fiona Stanley
Professor Stanley is Director, TVW Telethon Institute
for Child Health Research and Professor of Paediatrics, The University
of Western Australia. She delivered this thought-provoking Second Eleanor
Shaw Lecture, on 29 August 1995 in Melbourne. The transcript on the following
pages is reproduced with the kind permission of the author.
Introduction
A spermicide used with most barrier
contraceptives causes birth defects; the whooping cough vaccine causes
brain damage; incompetence by obstetricians is a leading cause of cerebral
palsy; the morning sickness drug Debendox caused an epidemic of birth defects;
environmental pollutants cause chemically induced AIDS. All of these stories
have been reported and all are false. But, as Peter Huber wrote in Galileo's
Revenge: Junk Science in the Court Room, they were not reported only
in the gutter press and on the TV midday quasi documentaries; they were
reported in the annals of US and UK jurisprudence. One amazing case was
a successful $1 million award to a soothsayer who, with expert testimony
supporting her, claimed that a CAT scan had removed her psychic powers.
Imagine the epidemiological study we would need to do to prove that one!
Imagine the debate over the outcome measures!
Most of us in public health research
practice our science with the sincere hope that our research will result
in information which if properly applied could make major improvements
to the health of the community, either through improved outcomes from better
treatments of disease or through preventive programs that avoid the disease
altogether. The vast array of diseases which affect humans are complex
to understand in their aetiology and in the variety of possible solutions.
It is with increasing concern and frustration that we hear of the way litigation
is now influencing parents to avoid vaccination, what drugs doctors can
prescribe, what is an appropriate rate of obstetric interventions and when
they should be carried out, and whether screening for cancer is helpful
to the population. These decisions are not based on science - more what
Peter Huber calls "junk science".
Litigation, by use of selective or
misleading evidence and fanned by a media whose aim is to sell rather than
to inform, can drive us away from making the best decisions in medicine
- those which have the potential to help the majority but rarely may harm
or not benefit, the individual.
The modern sciences of public health,
that is epidemiology and statistics, are now of enormous importance, they
have a population focus. They determine, as rigorously as possible, whether
associations are real and whether they are likely to be causal. Court room
trials are quintessentially singular, framing facts in isolation and demand
that scientific truths be rediscovered anew every time. They often are
influenced by biased expert witnesses, who present an extreme and outrageous
view which is not the general consensus of knowledge. "Let's not ignore
the next Galileo" pleads the plaintiff's lawyer (hence the title of Peter
Huber's book) - "many at the frontiers of medicine or science were ridiculed
to start with". But science has changed profoundly since the days of Galileo.
I now want to tell you the following
stories each of which illustrates the extraordinarily negative effect which
litigation has had on the practice of medicine and public health. And these
are not isolated cases; both the number and variety of cases coming to
litigation and the damages being awarded are increasing alarmingly. There
are some similarities and some differences between the stories but the
message is clear. We have to change the way such things are handled if
we want to continue to advance the public health. Society has established
a system of judging medical care in the courts which is not serving society
well.
Cervical Cancer Screening
Cervical cancer is the seventh commonest
cancer in Australian women, with 1700 new cases per year. It is preceded
over a period of years by a spectrum of asymptomatic abnormalities graded
as I, II or III. Only a proportion of women with these lesions, even grade
III, will progress to invasive cancer, but those with these lesions are
at a higher risk of getting cancer eventually. Screening healthy women
to assess their precursor status by taking a smear from the cervix and
looking at the cells so obtained, was introduced in Australia and many
other developed countries in the mid-1960s. It attempts to identify these
abnormalities in women who have no symptoms and thus give them and their
doctors an idea of their risk status. It is important to understand that
these screening tests are not diagnostic of cancer (some women call
them cancer tests). But even some doctors do not seem to understand that
the majority of women who have abnormalities on the Pap smear will not
get cancer and that some women who have no abnormalities will get
cancer.
But it gets even more difficult. The
tests themselves are not 100% accurate in terms of detecting abnormalities
and some report abnormal cells when they are not really abnormal (false
positive) and some report normal cells when the woman really has an abnormality
(false negative). In any screening test there are these false positives
and false negatives and a good screening test is one where these are kept
to reasonably low levels.
Most women who are screened will be
told accurately that they have either abnormal cells (justifying further
action) or that their smears were normal and that they should come back
for another smear in two years time. Those with false positives will have
additional, unnecessary and sometimes invasive investigations to rule out
cancer; those with false negatives will be falsely reassured they are not
at higher risk. It is when these women have a rapid progressive cancer,
that they feel cheated by the system.
By changing the cut-off levels for
"abnormality requiring further investigation", you can reduce the false
negatives and thus pick up more that are more likely to become cancer,
but it is at the expense of more false positives with their problems. Cervical
cancer screening aims to reduce the illness and death from
a common cancer in women. It was introduced with the knowledge that the
benefit of the program would be less than 100%. Pap smear screening has
the capacity to reduce the incidence of cancer of the cervix by 90% and
thus is a major public health benefit to women and their families.
Recent litigation has involved women
who have claimed that their cancers were not picked up by the screening
process. These situations are tragic for the women concerned and their
families, but it is not a failure of the screening program and it is not
negligence on the part of the laboratory; it is expected as part
of a normal screening activity. These women were the unfortunate few, the
very rare cases, the false negatives which occur in an screening program.
The effects of this litigation have
been negative in the following ways:
It is not beyond the realms of possibility
that the costs of the cervical cancer screening programs could become too
great and that they are abandoned altogether and we have no other way of
preventing deaths from these diseases. If this community wishes to allow
women and their lawyers to sue and be awarded huge damages then it will
have to accept that there will be more women dying of this disease because
cervical cancer screening will become too expensive to continue it. Who
do we blame if it stops? The media, the lawyers, the legal system, the
lack of proper education from the medical profession to introduce the program?
And what can we do to avert a similar fiasco in the future?
Whooping Cough Vaccine and Brain Damage
As you would all be aware, the most
cost-effective public health measure after provision of fresh water and
sanitation, is vaccination. The success stories of smallpox, polio and
measles are legends in the history of international public health. AIDS
has made the public even more aware of how wonderful the solution of a
vaccine would be. However most developed countries have in the past or
are still now facing major problems with their childhood vaccination participation
rates and in USA and Australia it has been called a shambles. Why? The
sources of this reversal has been firstly vaccine liability leading to
exorbitant costs or loss of supply of vaccines as companies decide that
the costs and risk of litigation are too extreme and they decide not to
make vaccines any more, then the belief of certain groups and an increasing
number of parents that vaccines cause major problems such as brain damage,
cot deaths, AIDS, chronic fatigue syndrome and allergies. Not only are
none of these allegations born out by rigorous scientific study, but the
damage and death from the disease itself and the power of vaccines to virtually
eradicate them appears to have been ignored and parents are no longer told.
The resulting epidemics of disease - too late - demonstrate the devastation
that infectious diseases can still wreak amongst our infants. Whooping
cough epidemics are currently sweeping the Eastern seaboard of Australia
where vaccination levels have fallen so low that less than 50% of our children
are protected. In one State in 1990 - 143 cases, in 1994 - 1940 cases,
287 hospitalised, and 7 cases of encephalopathy (brain damage).
The story of brain damage and whooping
cough vaccine is a tragic one; again decisions made by the courts have
done the public health a major disservice by dealing with vaccine injury
in an irregular and unpredictable manner. I also feel angry that as a profession
we as doctors did little to counter the highly emotive and very well publicised
cases of so-called vaccine brain damage which we could have done by showing
dying and brain damaged children with whooping cough on TV and publicising
the statistics which demonstrated what some parents found out too late;
that the disease is far far worse than the vaccine.
Whooping cough killed 5 of every 1000
children in the 1930s and 1940s. Many were left disabled from haemorrhages
into their brains and many developed bronchopneumonia. The vaccine was
initially welcomed. In the 1970s in UK and early 1980s in USA there were
suggestions from parents of children with neurological disabilities that
the vaccine may have been responsible for their child's condition as they
had noticed fits after the vaccine and the children did not recover. Many
children with disabilities are not diagnosed or even noticed to be abnormal
until about 6-12 months of age. Thus it was easy to demonstrate coincidence
of the exposure (vaccination) to the problem. A TV documentary in UK in
1974 showed 36 such children who it was claimed had been brain damaged
(encephalopathy) over the last 12 years. The parents demanded and eventually
were granted vaccine damage payments and the Vaccine Injury Compensation
Act was introduced in 1979.
In the meantime there was a dramatic
fall in immunisation rates in UK, falling from 80% in early 1974 to about
30% in 1975; then followed the worst outbreak of whooping cough since vaccination
became available, with 5000 children hospitalised, 200 cases of pneumonia,
83 cases of encephalopathy and 28 deaths. If you feel litigation
is the way to go, parents of these children should have sued the TV station
who ran the documentary!
In USA, following the first law suit
in 1978 for $10 million there was a dramatic increase in vaccine brain
damage suits, particularly following widespread media coverage of (still
unproven scientifically) adverse vaccine effects. In 1984 73 suits were
filed with an average $46 million per claim and rising to 255 suits in
1986 averaging $16 million per suit. Over the same time period the cost
of the whooping cough vaccine rose from $0.15 to $8.50 per dose. Two of
the major companies making vaccines (Wyeth and Lederle) pulled out leaving
Connaught the only US supplier of whooping cough vaccine. Liability insurance
rose dramatically with further increases in vaccine costs and a real emergency
in terms of vaccine supplies. As in the UK, vaccination levels fell with
resulting major epidemics of whooping cough - 10-12000 cases in 1987 with
40 deaths.
In 1987 the US Childhood Vaccine Injury
Compensation Act was passed following determined lobbying by such organisations
as the American College of Paediatrics and American Public Health Association.
This ensured the supply and eventually brought down vaccine costs as the
number of suits started to fall - by 1990, there were less than 20 suits
per year with lower claims as the parents were attracted to obtain compensation
more quickly and fairly than if they went through a tax on each vaccine.
It is national in scope, optional not mandatory as lawyers wanted to leave
going to court as an option but parents must go through this system first
before they are allowed to pursue a legal route and they then forfeit any
compensation from this system once they have chosen to sue.
Well, does whooping cough vaccine
cause brain damage? There were very few data anywhere which allowed a comparison
between vaccinated and unvaccinated children in terms of disabilities.
Hence the well funded National Encephalopathy Study was conceived and conducted
in UK. All cases of encephalopathy (over 1000 children) were compared in
terms of their vaccination status with over 2000 control children without
encephalopathy. The final analyses, summarised beautifully by the Judge
in the class action suit in UK, demonstrate that vaccination actually
protects against encephalopathy rather than causes it. So many thousands
of cases, hundreds of deaths and complications later and following numerous
court cases worth millions of dollars, with science hardly having a look
in, science eventually did win. How can we stop this happening again and
again?
There was excessive media "hype" about
the adverse effects of vaccines with many TV documentaries and front pages
of cover showing brain damaged children and their parents. Very rarely
were epidemiologists consulted for these programs. In contrast, there was
barely a page on the day when the news broke (if you can call it that)
that there was no evidence that whooping cough vaccines caused permanent
brain damage.
Similar to the cervical cancer story
there has been enormous amounts spent on research into new whooping cough
vaccines. This may be a good thing but it may have been unnecessary, was
not really driven by science but more by the fear of litigation. Money
spent on the development of these vaccines could have been possibly better
spent on other more important vaccines such as against Hib meningitis for
example. Research money also was earmarked for encephalopathy research
if it involved vaccines; other encephalopathy research of perhaps higher
scientific priority remained unfunded.
Cerebral Palsy and Obstetric Care
In 1975 "the new obstetrics" began.
Two obstetricians wrote in an obstetric journal "Early recognition and
elimination of foetal distress should reduce by half the incidence of handicapping
conditions or mental retardation" and "with caesarean section we can now
promise the delivery of a baby in perfect condition following a low risk
pregnancy". Their promises were not backed up by any research findings,
but by a growing belief that most of the cases of cerebral palsy in childhood
are due to birth asphyxia (that is, lack of oxygen at birth) and that new
machines which electronically monitored the baby's heart rate during labour
could accurately diagnose asphyxia. One can only speculate how this belief
arose as most data over the last 100 years suggests that only a small percentage
of children with disabilities had had birth asphyxia. I am sure that those
obstetricians rue the day that they made these rash promises!
The new obstetrics relied on improved
methods of detecting foetal distress and then responding by delivering
the baby by caesarean section if distress was noted. Babies in poor condition
at birth were resuscitated. These birth interventions were much more invasive
than anything done to mother or child up until that time. The aims were
to reduce deaths and prevent brain damage. The increased income to both
obstetricians and those selling foetal monitors may have contributed to
this trend somewhat.
From the late 1970s and increasing
dramatically in number and in amount claimed per suit, parents (via their
lawyers) have sued their obstetricians for negligence if their child was
diagnosed as having cerebral palsy, irrespective of the real cause of that
child's condition. The effects have been devastating for obstetricians
and obstetric care; litigation has driven up the costs of care, particularly
in USA but also now in Australia and UK. In Australia insurance premiums
have risen from $50 per annum to $25,000 in 1995. In USA, where some individual
cerebral palsy settlements have been as high as $100 million, insurance
premiums are over $100,000 per annum. Hospitals have also been hit - one
in South Australia has been forced to close because of the payment for
one case. Pregnant women, their families and society have paid and will
continue to pay for these increases in the costs of care.
Obstetricians are leaving obstetrics
and fewer of them are available to deliver babies; general practitioners
have decided against doing GP obstetrics and midwives, once a cheaper option
for mothers, now have to get malpractice insurance and have raised their
fees too. Some rural GPs do too few deliveries to even cover the cost of
their premiums. Where do rural women go for obstetric care? Those most
affected are the poor and the high risk women whose risks of a poor pregnancy
outcome is greater. And as a backdrop to this sad and sorry tale, lawyers
continue to advertise to encourage parents to sue.
Has this improved obstetric care?
Do obstetricians and other doctors practice better care of women in labour?
All evidence to date suggests that litigation has increased the intervention
rate - in the face of no evidence to demonstrate the effectiveness of either
electronic foetal monitoring or caesarean section to reduce cerebral palsy
or birth asphyxia. Obstetricians are ignoring science and because of fear
and exposure in the courts are practising what is called defensive obstetrics.
A recent study in UK analysed questionnaires from over 3000 practising
obstetricians and found that nearly 100% felt that foetal monitors were
inaccurate but still used them for medico-legal reasons. Other studies
have shown an increase in caesarean section rates for the same reasons.
As there are considerable risks still associated with Caesarean sections,
all agree that it would be best to avoid unnecessary ones.
Well, does intrapartum asphyxia cause
cerebral palsy? And can obstetric care aimed at diagnosing and treating
such asphyxia reduce the occurrence of cerebral palsy? My own group in
Perth have contributed to this international debate because we have data
on all cerebral palsy cases. Thus for the total population we have accurate
cerebral palsy rates from 1956 to 1990, and the capacity to conduct case-control
studies to investigate trends and causes.
In spite of dramatic increases in
the use of electronic foetal monitoring (0% in 1970 to well over 50% of
all births in 1990) and caesarean sections (4% in 1970 to over 20% of all
deliveries in 1990), the occurrence of cerebral palsy actually rose over
the same time period. The message was clear; widespread use of aggressive
obstetric interventions has not reduced the occurrence of cerebral palsy
as promised by the practitioners of the 1970s.
For obstetric care in labour to reduce
the occurrence of cerebral palsy, birth asphyxia or other intra-partum
problems must cause a significant proportion and secondly obstetric care
must be able to avoid the problem. Neither of these seem to be true. The
most damaging aspect is the reliance on the electronic foetal monitor.
This was introduced by enthusiasts who did not evaluate it. The science
has now been done; the main effect is a rise in intervention rates but
no reduction in cerebral palsy.
What is even more embarrassing for
the obstetricians is the considerable observer variability in interpreting
the electronic traces. There was only 22% agreement to do a caesarean section
or not in one study of 50 traces by 4 experienced obstetricians. Six months
later 21% of the same traces were interpreted differently by the same obstetricians.
With such poor levels of agreement, how can an expert witness get up in
a court of law to say with confidence that such a tracing was indicative
of incipient encephalopathy? Or that by not doing a section that a clinician
failed in their duty to the standard of their colleagues? What is amazing
to me is that the courts are still relying on these traces as the mainstay
of evidence in cerebral palsy litigation and that doctors are using monitors
more than ever, because not using one is a reason for parents to sue. If
it was proposed to introduce a test for anaemia which was wrong more than
it was right, it would be rejected.
The truth is that at the moment we
do not have the capacity to accurately diagnose birth asphyxia and an electronic
tracing of the foetal heart rate may be at best a rather poor screening
test. However, screening tests should only be used if they can be followed
by (1) an accurate diagnostic test and (2) an effective intervention to
avoid the problem.
Neither of these pre-requisites can
be met with birth asphyxia. It is acknowledged that we cannot accurately
diagnose asphyxia in the human foetus either before or during delivery.
Research now suggests that most cerebral
palsy cannot be prevented. No individual case of cerebral palsy can, in
my opinion, be attributed with confidence to a birth asphyxial episode.
It is even less scientific to say that a different level of care may have
changed the outcome. We have several case histories; one child with severe
cerebral palsy who had had a poor birth history. Later investigation showed
a family tree with three first cousins similarly affected.
Expert witnesses in the area of cerebral
palsy litigation have done enormous damage to their profession, pushed
by lawyers who only have to prove it is possible that the brain of a severely
handicapped child was damaged during the birth process. Parents who are
promised perfection in a world where realistic expectations of pregnancy
outcomes and the limitations of medical care are never fully explained,
continue to seek someone to blame for the tragic problems in their child.
Debendox and Birth Defects
Debendox was a drug given to pregnant
women to prevent severe nausea and vomiting in pregnancy; such symptoms
are very common in pregnancy and can be very debilitating. Thus it was
prescribed commonly - about 30% of pregnant women in Australia may have
been on the drug. Birth defects also occur frequently - 5% (12,500) of
all Australian births have a major abnormality. Thus it is relatively easy
to collect a series of exposed cases and suggest a relationship. This was
done by a Canadian physician in 1969 (Paterson, 1969). The importance before
going public with such information, of course, is to obtain a group of
control children (without birth defects) to ascertain the level of exposure
in them. Alternatively one could compare the occurrence of birth defects
between two large cohorts of pregnant women - one who had taken Debendox
and another similar group who had not. Only then can we estimate a relative
risk of exposure in relation to birth defects. This was done time and time
again and showed no association but this information did not influence
the courts or the media.
As soon as the first case went to
court in Florida in the late 1970s, the Australian obstetrician and researcher,
William McBride, suggested that the association was causal, based on both
animal and human data. Until animal data in a key experiment was eventually
shown to be fraudulent by the ABC's Normal Swan, McBride was used extensively
by lawyers in USA and Australia as an expert witness for the plaintiffs.
His human data never had a control group! Juries of non-epidemiologists
were influenced by clever lawyers for the plaintiff (the tragedy of the
disabled child is the emotive factor which seems to influence many juries
in favour of the plaintiff). The presentation of good scientific evidence
against Debendox being a teratogen did not appear to influence them. Thirty
trials over 13 years from 1700 suits with many being settled out of court
resulted initially in a 30% success rate for the plaintiffs, one as recently
as 1991.
The effects of this litigation were:
women believed that Debendox was a teratogen and they stopped taking it,
the costs of litigation were not being met by the falling sales of the
drug and eventually, in spite of no evidence of teratogenicity, Marion
Merrill Dow stopped making the drug and took it off the market. There is
now no good and safe drug for use in pregnancy nausea, women are too scared
to take anything else so they just suffer or go into hospital for intravenous
fluid replacement and no drug company is ever likely to make or market
another drug given the Debendox fiasco. So who won? The lawyers were the
only ones as eventually most of the court cases were thrown out on appeal,
so the families of affected children lost everything as well. The litigation
also spawned a huge number of research studies (over 40) so that the safety
of Debendox has been proved conclusively and somewhat unnecessarily over
and over again. It is one of the best researched drugs in relation to pregnancy
outcomes, but is not able to be used as it is no longer available!! Based
on biological plausibility, suggestive evidence, animal data and the other
measures we scientists use to develop hypotheses, it was not on my list
of teratogens needing investigation.
The media labelled scientific reports
as "cover ups" and "white washes" as did some of the women's health lobby
groups. As some of the studies were funded by the company that made the
drug, this further supported a white wash. The US National Women's Network
(representing 1000 women's health organisations in USA) was outraged when
Debendox was eventually removed from the market; enraged not because a
useful and safe drug for nausea in pregnancy had been taken from women,
but because it was still allowed to be sold until all stocks had run out!
The women's movement has had so many beneficial effects for both women
and men; it is sad when misinformation can have such a negative effect.
Why did the courts handle the Debendox
issue badly? It seems that there was a reluctance to use primary researchers
and researchers are often reluctant to become expert witnesses; lay juries
were unable to weigh the evidence and undervalued epidemiological research,
often giving it the same weight as animal data, cellular effects or case
studies; it was easy for the clever plaintiff lawyers to confuse the juries
and to discredit the defence expert witnesses; story telling held more
sway than epidemiological evidence and there was always the tragic evidence
of the abnormal child to push them towards a sympathy vote. It was the
translation of science into evidence that was particularly flawed.
Debendox was removed from the market
in 1983 for economic reasons and not because it was a proven teratogen.
"Debendox wasn't a teratogen it was a potent litogen". "Judges and juries
now tell doctors how to practice and what drugs to prescribe rather than
any scientific studies".
Well, Has Litigation Served Anyone Well?
Who are the winners and who are the
losers in these fiascos? The community and medical care are losers. Doctors
cannot avoid litigation by practising defensively as litigation is illogical
and unpredictable. There is no evidence that the increasing litigation
has resulted in better obstetric care, fewer cases of brain damage following
vaccines, fewer birth defects or better and cheaper screening programs
to prevent cancer. Litigation has had the reverse effects. Medical interventions
and their associated costs have spiralled up as a result of litigation
and useful and safe drugs and vaccines have been unfairly blamed for disasters.
People avoid them, some times at their peril as in the case of falling
rates of immunisation followed by devastating epidemics. Individual families
may have benefited from huge payouts and they can look after their disabled
children without worry of financial hardship, but many did not succeed.
Those who are awarded damages end up often getting far less than the published
settlements, after paying fees. They have spent years of their lives involved
in long and emotionally draining court cases instead of getting on with
adapting their lives to accepting and caring for their disabled child.
It has shown that excessive litigation retards the healing and adaptive
process for parents, family and even the child. The vast majority of families
with disabled children are not eligible for such compensation and have
to cope by themselves and with help from the welfare system.
So the lawyers have won? Well it may
be a short lived victory as they face increasing criticism, even from their
own profession; and reform or alternatives to negligence being decided
by the courts is high on the agenda in most developed countries. One could
argue that lawyers are only responding to the demands of their clients,
reflecting our society.
How Can We Change the Legal System?
There are two general responses -
one to avoid the courts altogether (as occurred with vaccine damage compensation
acts in UK and USA) and the other is to improve the way in which the courts
handle evidence, so that science is better converted into evidence that
can be assimilated by judge and/or jury alike. In all Australian states
except Victoria and NSW juries are no longer used and civil cases are tried
by Judge alone.
Compensation Without Proof of Fault
The concept of fast tracking compensation
outside the court system for those inevitable but unpredictable, very rare
and non-negligent cases of adverse consequences of public health interventions
has been implemented overseas and suggested for Australia. It was suggested
by Professor Charles Watson and Dr Aileen Plant in the AJPH in 1992 for
any adverse effects from vaccination and for cases of viral infection from
missed screened blood transfusion tests. Such compensation would be quick,
fair and helpful and should be introduced immediately. People will need
to debate how it should be funded - possibly by an additional levy on Medicare
similar to motor vehicle insurance. The courts could then be reserved for
those cases where negligence was provable.
Changes to Court Practices
I have few problems with cases for
which there is absolutely no scientific evidence of adverse effects (as
with Debendox) than with cerebral palsy and birth asphyxia (where we know
it can happen but does so very rarely and is difficult to prove). No court
case against Debendox should now succeed or even be contemplated, but some
cases of cerebral palsy are difficult to decide upon. Mediation, structured
settlements, capping of payments and statute of limitation have all been
suggested along with changes to improve the evidence from expert witnesses
such as court appointed witnesses, peer reviewing of witnesses and scientifically
conducted consensus statements.
I suggest using rigorous overviews
such as the Cochrane collaboration to decide on standards of care rather
than a biased witness who can give an opinion that if a difference course
had been taken the child would have been normal.
Heather Mitchell (DD of the Victorian
Cytology Service) puts it very well "Science is downgraded in the courts;
it seems to me the antithesis of justice and fairness when out of 10 expert
opinions on a difficult Pap smear, the plaintiff's lawyer is allowed to
choose only those 3 which favour the plaintiff. They then attempt to discredit
the scientific evidence. The damage (to screening) is done as all this
legal action is eagerly reported in the media accompanied by pictures of
a dying woman; the populace observe the public hanging of an excellent
screening program."
What About the Researchers?
The lessons are there for us as medical
researchers, the most important/obvious ones for me are
Rigorous randomised trials of new
techniques, drugs and screening tests should be mandatory. The possibly
devastating consequences of not doing so must be widely disseminated amongst
doctors and health policy makers.
And the Medical Profession?
We must ensure the use of scientific
proof of effectiveness in the practice of medicine in Australia. Every
way of encouraging doctors to use evidence to guide their practice must
be investigated. We must remove barriers to the conduct of randomised trials
in our major centres of excellence, our teaching hospitals. In public health
programs, we must strive to minimise individual risk; good public health
does not preclude care for the individual.
We must be honest and open with the
people whom we serve as public health and clinical practitioners. We must
give them realistic expectations of what their biology can deliver
and the considerable limitations of modern medicine to change that. It
is not letting our disciplines down to tell people what we can't do in
medicine; there have been great successes in medical science but we have
not solved even a quarter of medical problems and we certainly cannot promise
a perfect baby!
Realistic Expectations
Based on the best available Australian
data with optimal obstetric care - 15-20% (=45,000 per annum) pregnancies
will end in spontaneous miscarriage; 6% (=17,500) will be born preterm;
5% (=14,500) will have a baby with a major birth defect whether they take
Debendox or not; 0.25% (=580) will have a baby with a diagnosis of cerebral
palsy by aged 5 and 0.4% (=1156) will have a baby who will be diagnosed
with moderate or severe intellectual disability by aged 6. This is biological
reality, this is normal life in Australia and no-one is actually currently
to blame for these problems. If pregnant with triplets either naturally
or following an IVF conception, the risks of either a perinatal death or
cerebral palsy based on our WA data may be as high as 15-30%. Are pregnant
women told these risks?
If parents are given realistic expectations
rather than promises of perfection possibly given to justify increased
interventions and charges, then they are less likely to be angry and to
sue when an abnormality occurs. If the population in Australia were accurately
told about screening and what it involves, that is its realistic objectives
and outcomes, then they would understand that there are swings and roundabouts.
Screening does not eradicate disease; it classifies people by their probable
risk of disease. There are decisions to be made here for the greater good
being a larger consideration than that of the individual.
Don't KEEP IT SIMPLE STUPID because
it isn't. Don't patronise an increasingly well educated public who have
a right to know because they will feel betrayed when you can't deliver
those things which should never have been promised.
People die from cancer even if they
have been screened in the best place in the world because screening does
not detect all cases (particularly those that are growing rapidly) and
treatment is not 100% effective. But avoiding cervical cancer by 90% should
be good news. If people understand that, they may accept the few screening
failures. If not then we cannot offer them anything better.
Obstetrics care cannot prevent most
cases of cerebral palsy, birth defects, preterm births or many other pregnancy
problems (we are researching these things but apart from a very few we
don't even know what causes them). But obstetrics has had a significant
impact on reducing stillbirths, neonatal deaths and many other causes of
illness in early childhood and on making childbirth safe for the mother
and more pain free. This is now threatened. Vaccines have been the most
effective and safest methods of preventing major infectious disease this
century and there is no evidence that they cause permanent brain damage
in childhood; if you choose not to vaccinate your child against whooping
cough then you put him/her at risk of serious illness which could cause
brain damage and even death. It is your choice but you can only make informed
choices if you have correct information.
Can the Media Change?
The popular press have played a devious
role in these fiascos; good news is not news whereas bad news is front
page. Science showing that a drug does not cause birth defects is not interesting,
is a white-wash or cover-up and need not be published; junk science showing
disabled kids in wheelchairs and a mother who took a drug in pregnancy
proves causation and is front page news and all over the television. They
tend to stimulate unrealistic expectations from research or unjustified
alarms concerning adverse reactions. "The media coverage of the advances
of science clearly demonstrate both the writer's view of them as magic
and the public's need to see them in this light. Scientific theories which
are riddled with controversy are presented as cut and dried, rather than
tentative and uncertain. The magical thinking which pervades the 20th century
is that we understand everything". The fault may lie with the scientists
as much with the media; we must be prepared to talk to journalists and
to explain the complexities of our methods and their limitations.
I have no solutions to this but my
hope is that via such public forums as this one, we generate some shame
in enough journalists and editors that the reporting may start to become
more balanced. One thing they may wish to do is to peer review their sources
of evidence. Rigorous scientists, of course, often too busy to be interviewed
as they are off seeking the truth, or the elusive research dollars which
have largely gone to these political, media hype issues than to proper
research!!
It is important to remember that the
media can get it right too; Bill Birnbauer wrote an excellent editorial
in The Age in May 1994 which acknowledged the tragedy of the situation
for Rhonda O'Shea. He then went on to summarise the issues in terms of
cervical cancer screening and called for changes quickly to compensation
before we see such valuable albeit imperfect public health programs disappear.
Whatever the solutions we seek we
must act soon. There is general agreement that we have a litigation crisis
in medicine which has wrought enormous devastation and may wreak even more
unless 'something is done'. In Brecht's play, Galileo said "the aim of
science is not to open the door to everlasting wisdom but to set a limit
on everlasting error".