Simon Foundation conference
Trustee Linda Crumlin reports on the recent
Simon Foundation conference in America.
The Simon Foundation conference in June was
held to launch the third decade of the Simon Foundation in America. The mission
of the Simon Foundation is: 'To bring the topic of incontinence out of the
closet, remove the stigma surrounding the condition, and provide help and hope
to individuals with incontinence, their families and the healthcare
professionals who provide the care.'
The major focus for the Simon Foundation in its
third decade will be to take the message of cure, treatment and management to
individuals in their communities, in unique and creative ways. This has started
with "The Bladder Mobile". The Bladder Mobile will provide visitors
with information on incontinence, bring the topic out of the closet, and
generate media interest through touring the communities. They are also working
on a shopping centre exhibit on incontinence that will also tour major centres
in the USA.
There were around 50-60 'experts' attending
this conference from the USA, Canada, UK, Germany, Sweden and Australia. The
delegates were a mix of Urologists, Geriatricians, Psychologists, Continence
Advisors, consumer organisations - Simon Foundation, Incontact, The German
Continence Organisation , Crohn's and Colitis Organisation UK and USA, to name
a few - and pharmaceutical and medical appliance companies.
The main aim of this conference was to discuss
the issues around stigma and incontinence - the effects that this stigma had on
people, carers, the media and the public - and to exchange ideas on how to start
removing the stigma, making it easier for people to accept their bladder and
bowel problems without the fear of how others will react to them.
As a Trustee of Incontact, I was pleased to
attend this conference and exchange ideas and success stories with these
important organisations.
The agenda featured 'Living with the stigma
of disfigurement', 'Stigma and self-esteem', 'Continence', 'Stigma
and the media' and 'Fighting stigma through global continence promotion'.
After each speaker there was a lively and interactive discussion about the
subject and the audience's experiences.
From this conference I learnt that:
- There are many definitions of the term 'stigma':
- Scar
- To mark or brand
- A mark of shame or discredit
- A moral or physical blemish
- A physical characteristic that serves to
identify a disease or condition
- Spoiled identity
- Stigmatisation is personally and socially
costly.
- Language is an important part of breaking
down taboos and stigmas - e.g. "What's wrong with your...foot, leg,
face", etc, immediately conveys a stigma.
- Research suggests that there are three
important parts to helping people adjust to their continence issues: The
quality of information about their treatment options, their ability to
manage other peoples reactions to their incontinence and the quality of
support from family, friends and support groups.
- Most importantly we realised that stigmas
could be broken down, but it would take a consistent and repeated message to
both the general public and the healthcare professionals that are dealing
with bladder and bowel disorders.
As the consumer organisation representing
people with bladder and bowel problems in the UK, Incontact have been very
active in pushing back the boundaries surrounding this issue and making it
easier for people to get the support and medical help they need. We have reached
tens of thousands of people with our message through our Healthy Bladder
Campaign, our leaflets, our magazine and our website. We are very successful in
what we do and we were recognised at the conference for the wealth of
information we have provided.
However there are still a very large number of
people out there that are finding it difficult to cope with their problems and
feel that they have no-one to turn to. They find it difficult or impossible to
confide in friends about this very personal problem, and are reluctant to speak
to their GP's about their concerns. These are the people we still need to
reach. Our challenge is to keep the successful momentum going that we have
generated over the past few years.
By building relationships with other continence
organisations like the Simon Foundation, we can continue to learn from each
other, exchange ideas and together have a stronger voice that continues to shout
out our message.
Lastly, the Simon Foundation believe in the
saying, 'Nothing about us without us'. I think this also applies to all we
do at Incontact.
How does America compare to the UK?
How many people in the US are affected by
bladder and bowel problems?
- Urinary incontinence affects between 20 and
25 million people in America.1
- More than 6.5 million people in the US have
bowel incontinence.2
How much do bladder and bowel problems cost
the US?
- The cost of treating urinary incontinence in
the US is an estimated $16 billion a year.1
- Over $400 million is spent on containment
products by Americans each year.3
1 National Bladder Foundation
2 National Digestive Disease Information
Clearinghouse
3 Lahr, 1988
How many people in the UK are
affected by bladder and bowel problems?
- Over 6 million people are believed to have
bladder problems in the UK.4
- Data on the number of people with bowel
problems in the UK is very hard to find. One study of the number of people
with bowel incontinence in adults aged 40 or more suggested that 2.1% of
people living in the community suffer from bowel incontinence5.
If you extend this to the rest of the UK population (estimated at 59.2
million in 2002) it gives the figure of 1,243,200.
How much do bladder and bowel problems cost
the UK?
- The cost of incontinence to the NHS was
estimated at ?423 million in 1998 alone.6
- ?120 million a year is spent by NHS on
absorbent products.7
- In England alone in 1998, urinary
incontinence appliance prescribing cost ?50 million. 8
4 Pharmacia SIFO Research and Consulting 1998
5 Prevalence of faecal incontinence in adults
aged 40 years or more living in the community (Gut Online 2002;50:480-484)
6 Continence Foundation 2000
7 Continence Foundation 1998
8 Prescribing Analysis and Cost Data (stated in
Prescribing Nurse Bulletin 1999)
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