Lone Hummelshøj
(www.endometriosis.org), Axel Forman (Århus
University Hospital), and Andrew Prentice (Cambridge
University)
On
14 September 2005, 140 physicians and women with endometriosis
came together for a day to discuss best practice in
endometriosis as part of the 9th World Congress on
Endometriosis, where the theme was "the patient
as the partner".
Endometriosis has
proven to be elusive for scientists to get to the
bottom of; for clinicians to treat satisfactorily;
and, most importantly: to have a profound impact on
the lives of those affected by the condition.
A lot of this is steeped in the fact that endometriosis
is surrounded by taboos and myths, but we must also
recognise that for too many years these three entities
(scientists, clinicians, and patients) pursued the
disease and illness separately – and subsequently
never got too far. With the realisation, however,
that all the stakeholders play a crucial part in solving
the endometriosis puzzle, joint initiatives have emerged
at local, regional, national, and international levels
to move clinical expertise and research forward, and
to improve overall quality of life for women with
endometriosis.
This progress has been recognised by the 9th World
Congress on Endometriosis where the patient is now
seen as the partner, and where experiences in moving
“best practice” forward will be presented,
emphasising that when support groups and physicians
work together they make things happen and our goals
are achieved faster.
Whilst we will not be dwelling much on the fourth
stake holder today, namely national governments, then
it is worth mentioning that these have – or
should have – a huge interest in endometriosis
also. A disease, which has such a profound impact
on anyone’s life, will also have a socio-economic
impact. If a woman is not able to finish her education,
maintain a career, have children, and, in addition,
has to undergo multiple “hit and miss”
treatments: this has a cost to society. And, through
physician-patient partnership initiatives, this is
now beginning to be recognised:
• In the United Kingdom support organisations,
physicians, and members of parliament have worked
together since 2001 in the Endometriosis All Party
Parliamentary Working Group, raising awareness amongst
the public and legislators. Most recently, the EAPPG
has conducted a Pain and Quality of Life survey, with
data from 7,025 women with the disease (some of this
data will be presented during this congress).
• In June this year the Associazione Italiana
Endometriosi, in conjunction with Societa Italiana
di Endoscopia Ginecologica, got recognition for their
hard work, when the Italian Senate voted in favour
of the first act of the bill that will recognise endometriosis
as a social disease.
• The European Endometriosis Alliance succeeded
this spring in getting 36% of MEPs to sign the 2005
Written Declaration on Endometriosis, through a coordinated
campaign where support organisations and endometriosis
specialists in 13 countries simultaneously wrote to
MEPs to stress the importance of getting the disease
on the agenda. This is the highest number of signatures
ever collected for a health issue in the European
Parliament.
Such progress is worth applauding. There is still
some way to go, however, and there are specific areas
on which we need to focus to get endometriosis recognised
much more widely than it is today. This is the purpose
of this afternoon’s workshops, where women with
endometriosis and those who treat them will be brainstorming
to come up with current challenges, potential solutions,
and most importantly: action plans to move forward
in our field.
We subsequently have an opportunity to present back
at the 10th World Congress in 2008 on how we –
through joint efforts across all disciplines –
have made progress in:
1. Establishing centres of excellence
2. Preventing endometriosis and implementing self-help
programmes
3. Getting international awareness through better
profiling of the disease
4. Utilising all the capacities of support groups
5. Identifying and overcoming barriers, which have
to be considered when women, especially adolescents,
present with symptoms suggestive of endometriosis.
This is partnership for progress!
