What does the EDF do? What ‘added value’ does it bring to the work
done for dystonia patients at a national level?
What good is collaboration with other organisations in
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Dystonia
advocacy at the European level is sometimes a difficult concept to
understand. All of us begin our work as
volunteers at the national level, where we know (or very quickly discover!) the
culture, the politics, the healthcare system and the ground rules for patient
support groups. In that scenario, it
becomes fairly clear what our limitations are (usually funding and a lack of
human resources!) and it is no surprise to find that these same problems exist
at a European level too. The one thing
which makes it a little easier is that the language is usually a common factor,
although some countries have more than one official language.
National approach to dystonia patient support
In our own
countries, we try to find ways of promoting awareness of dystonia amongst the
public and the medical profession. We
liaise with doctors to improve diagnosis and treatment for patients, and to
encourage research into better treatments and a possible cure. We lobby health and other government
departments to improve their approach to the illness and, in many countries, to
ensure that people receive reimbursement for the cost of treatment. We provide advice and information for people
living with dystonia. We need to raise
funds to allow this work to take place.
National effort aims to meet needs today
In other
words most of our effort is spent in trying to help dystonia patients and their
families today, in a very practical way.
These are the ‘traditional’ methods we all use in the national context,
because these people, organisations and national channels of communication are
open to us and we know how to use them.
Unless awareness is raised at a national level, there will be no
influence on dystonia health issues, immediately or for the future.
Differences at European level
The main
point of EDF is that it deals with people, organisations and aspects of
dystonia advocacy which are not available to national groups. There are many doctors, politicians and
organisations who/which work at a European level to influence political policy
and law, or to work with their colleagues in other European organisations. They operate in a way which makes it
impossible for national groups to play a part, even if they want to do so.
Language differences
The
language factor at a European level is a considerable difficulty and, even
though the common language of international medicine is English, people have
varying degrees of skill in the language which bring misunderstanding and lack
of cohesion. This is true not only in
the world of dystonia. I have been told
by colleagues from other European patient federations that, very often, the
level of misunderstanding among the board members of a national group,
about how things work at a European level, is related directly to the differing
levels of skills in English. This brings
no shame to the people who may not understand completely. It is an important aspect of an equation which
uses something imperfect (one language – English) as the common factor.
European effort can only meet needs tomorrow
There is a
growing structure of pan-European organisations which aligns itself with the
European Union establishment, the Parliament, the Commission, Council of
Ministers, etc., and works closely within that framework. These organisations and that framework have,
or will have, a considerable influence on health and other government policies
in all the countries of the European Union. Not this year or next year, perhaps, but in
five, ten and twenty years’ time.
Working in partnership with others inside that framework allows EDF to
raise the profile of dystonia in a scenario where almost no-one has heard the
word before. Unless awareness is raised
at a European level, there will be no influence on dystonia health issues at
that level for the future. National
governments are strongly influenced in the medium and long term by European
Union policy, whether they admit it or not.
Attracting the attention of politicians
There are
so many human illnesses whose advocates are calling for attention, that
politicians do not have the time or energy to respond to each of them. Dystonia is a very small area of neurology
which, in turn, is a small part of the whole of medicine. Other areas of public health concern, such as
cancer, aids, or illegal drug-taking have a much greater interest for
politicians and, therefore, for budgets and policy proposals, simply because
they are more ‘emotive’ and attract more public attention. In other words, no-one wants to hear the
story of dystonia. It is only one of
hundreds of similar tales. By raising
the profile of dystonia over the past four or five years through an alliance
which operates at the level of neurology, EDF has already ensured that many
more politicians have had the illness brought to their attention. The idea of being able to deal with one
organisation which represents twenty or thirty neurological conditions, all at
the same time, attracts the attention of politicians very quickly.
European neurological alliance
European Federation of Neurological
Associations (EFNA)
- Just as ‘neurological alliances’ have been created in several countries, so
the concept has been given life in Europe through the formation of EFNA. This alliance of European federations from
Alzheimer’s, Parkinson’s Disease, Multiple Sclerosis, Epilepsy, Headache,
Ataxia, Dystonia, and several other conditions, has formed partnerships with a
number of other organisations in related fields, to promote the cause of
neurology as a whole and, when appropriate, each individual illness. EDF continues to be very active in this
organisation and the results are already very worthwhile.
Finding ways of promoting research at a ‘public
health’ level. The European Brain Council - Through EDF’s membership of EFNA (see
previous section on ‘European Neurological Alliance’) we are actively involved
in the European Brain Council (EBC) which is a very broad collaboration of
representatives from the European federations of: neurologists (EFNS), neurological patients
(EFNA), neurosurgeons (EANS), basic research scientists (FENS), psychiatrists
(EAPS), psychiatric patients (GAMIAN), Health insurance industry (AOK),
Pharmaceutical industry (GlaxoSmithKline), biotech industry (Medtronic) and the
media. At the EBC launch in June 2003 at
the European Parliament, Research Commissioner Philippe Busquin welcomed the
new organisation very warmly and especially singled out the involvement of
patients as being an extremely important aspect for its strength and credibility.
The
difficulties of promoting research into a ‘small’ condition like dystonia at a
public health level are many. When we
can do that, we will be running along a narrow road alone. Before we learn to run, we need to learn to
walk along the broad road of neurology and brain illness with our colleagues
from other organisations and that is the stage we are at with the work of EFNA
and the EBC.
The importance of the ‘international’ medical
profession
International medical organisations
- such as the European Federation of Neurological Societies (EFNS), the
World Federation of Neurology (WFN) or the Movement Disorder Society (MDS) do
not only hold annual congresses, where doctors present complicated papers about
their favourite topics. These organisations
have a huge influence on neurologists and movement disorder specialists in
every country. Among other activities,
they promote better education for neurologists across
‘International’ doctors - The doctors who are active at an
international level tend to be those who are the opinion-leaders in their
national medical circles. It is
interesting that, almost without exception, they all are strong in their
support of a European Dystonia Federation, as they understand its importance
for the national groups.
Raising the ‘medical’ profile of Dystonia - If dystonia is prominent in some way at an international
medical conference (sessions on dystonia topics, an information stand, a
meeting of the European Dystonia Research Group (EDRG) – which EDF was
instrumental in founding in 2003), then doctors will give the illness more
attention. Younger doctors, especially,
who may be deciding in which area of neurology they should specialise, might be
attracted to make a special study of dystonia, or movement disorders. They may be encouraged to become involved in
scientific studies on dystonia which will contribute to the knowledge
available, and one of which may even prove to be a ‘break-through’ in the
understanding of the illness.
How EDF raises this profile - EDF has created and publicised the
successful David Marsden Award for younger specialists with precisely this in
mind and, a few years ago, we collaborated with Dr Tom Warner and others across
Slowly but
surely, EDF is being accepted by the international medical profession as a
responsible partner with which they can collaborate. This ‘professionalisation’ at the European
level adds value to the work of EDF’s member groups in their own countries when
they promote their own case for collaborative partnerships with doctors.
Finance and prospective funders
Some of you
reading this article may not realise that EDF costs its national group members
virtually nothing. The only cost is the
annual membership fee (a minimal €10, levied for the first time in 2003) Over the 10 years since it was founded EDF
has provided at least part of the costs of its members’ delegates attending the
General Assembly. It has always covered
the expenses of Board members attending meetings. EDF has always been careful NOT to take
funding from a source which would normally be available for a national group
member. In fact, in 2002 and 2003, EDF
was able to provide up to €500 to each member group which took part in
awareness activities for European Dystonia Week.
EDF’s
increasing partnership with the medical profession and, through EFNA and the
EBC, is also raising its profile with the pharmaceutical and biotech companies
which provide the therapies which are used by dystonia patients. This reflects well on the standing of
national groups with the local representatives of these companies and helps to
develop their relationships.
Conclusion
There are
several areas of influence at a European level which have a direct bearing on
the work of national dystonia patient groups.
In the areas of government health policy, the medical profession and the
pharmaceutical/biotech companies alone, there are clear benefits to be gained
from the work which is done by EDF.
If we, on
behalf of dystonia patients, want to be part of that influence for the future,
we must have a European ‘presence’. That
presence is already being provided by EDF.
As those of us know, who have been involved with dystonia advocacy over
the past fifteen or twenty years, medical science and political activity do not
move quickly. If we do not build
influence and publicise dystonia widely now at all levels, national and
European, then the effects of political and policy decisions taken over the
years ahead will not bring the benefits for patients which they might have
hoped.
AMN – April
2004
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