a ssociation f rancophone pour v aincre les d ouleurs sip 2012 afvd patient organization french...

Association Francophone

pour Vaincre les Douleurs

SIP 2012

AFVD Patient Organization

French speaking association against Pain

Mme Martine CHAUVIN, AFVD funding president, Pompaire, FRANCE

« Precariousness and pain. The added value of expert

patients »



SIP 2012


patients »

-The real impact of chronic pain

-Chronic pain management

issues

-Expert patient : added value



INVISIBLE CHRONIC PAIN…

… IS THE VISIBLE PART OF THE ICEBERG.

•AT HOME : Daily life destruction.

Isolation, psychological fragility, emotional distress, familial conflicts, reduction of activities.

•AT WORK : Professional and Social desinsertion.

21% of european chronic pain patients are completely unable to work.

19% of chronic pain patients have lost their jobs due to their condition.

The real impact of chronic pain



MULTIDIMENSIONAL CONSEQUENCES OF CHRONIC PAIN


CHRONICPAIN



PRECARIOUSNESS FACTORS


FINANCIAL ISSUES

LOSS OFWORK

LOSS OFINCOME

DIVORCE

ACCOMODATIONISSUES

ISOLATION, LONELINESS

LOSS OFSUPPORT



SIP 2012


patients »



issues




Healthcare organization in France

200 PAIN STRUCTURE

S

1 to 3 FTE physicians

per structure

> 500 medical

consultations / yr /

structure

PAIN STRUCTURES’ PATIENTS :

Waiting list > 1 MONTH FOR 50% of patients to access a pain consultation

49% of patients REFERRED BY GPs

MEAN AGE = 53 YRS OLD

66% OF PATIENTS ARE WOMEN

TYPE OF PAIN - Back Pain (20%)- Neuropathic

(17%)- Headache (16%)

53% HAVE PAIN FOR > 2 YEARS

30% ARE IN WORK INCAPACITY or SICK LEAVE DUE TO PAIN



PAIN = MEDICAL SPECIALTY ?

Medical training on pain :

1/ Initial training = part of the second cycle of medicine studies, mandatory since 2001, module of 16 hours = « pain and palliative care »

2/ Continuous training programs (university courses), DIU, DESC (voluntary process). Content may vary depending on the region.

Pain education of medicine students and physicians has been developed since 10 years.

However the proposed programs need further improvement.

Pain specialists



PAIN MANAGEMENT ISSUES AND IMPACTS

Chronic pain management issues

PHYSICIANS / STRUCTURES :

-Pain Specialization is not attractive, not well recognized

-Lack of Pain Physicians / units

-Coordination to face multidimensional aspects of chronic pain can be improved

-Poor research funding

PATIENT IMPACT :

-Delay in diagnosis

-Delayed access to dedicated care

-Before access to pain units, inadequate / non-specific / incomplete pain management (insufficient pain relief)

-Insufficient / uneven care costs coverage



PRECARIOUSNESS WORSENING FACTORS

•Delay to diagnosis & care access

•Lack of «global » management

•Insufficient efficacy of non-specific treatment

•Cost of care

Chronic pain management issues



SIP 2012


patients »



issues




THROUGH :

-His own experience of chronic pain,

-His knowledge and unique expertise of chronic pain

gathered from various sources : other patients’ testimonials, training, congresses, discussions with specialists and scientific societies, health institutions data, …

-His motivation to help other patients,

THE EXPERT PATIENT IS ABLE TO :

-Speak about chronic pain, is curious and able to acquire new information

-Transfer theory into practise, and willing to be a useful and active person helping other patients.

Expert patient : DEFINITION



THE EXPERT PATIENT provides added value to

medical management, and has a personnalized

approach with each patient.

THE TEAM « EXPERT PATIENT – PATIENT –

PHYSICIAN » MUST BE ABLE TO EXPLORE

SOLUTIONS TOGETHER WHICH WILL BE ADAPTED

TO THE PATIENT.

The solutions need to be tailored to each patient.

Expert patient : ROLE

1 PATIENT 1 SOLUTION



The Expert Patient has specific skills and missions :

-Empathy; Inspires confidence; Listening skills; Patience; Dialog; Communication skills; personal pain experience

-Positive attitude; motivational skills; « coaching » skills

Expert patient : SKILLS

BREAKS PATIENT’S ISOLATION

HELPS THE PATIENT TO BECOME AN

ACTOR IN HIS PAIN LIFE AND CARE MANAGEMENT



WHAT DOES AN AFVD « EXPERT PATIENT » DO ?

-Participates to multidisciplinar Pain Clinic consultation

-Operates basic services of AFVD in regional hospitals

-Answers patients’ questions and provides individual information (Hotline 0810510310, emails)

-Represents AFVD during congresses

-Actively participates to the design and practise of Patient Therapeutic Education programs

Expert patient : ACTIVITIES



Expert patient : A TEAM PLAYER



With their specific action, added value,

complementary position and individualized

interaction between the patient (+ families and

caregivers) and the physician, Expert patients

contribute to accelerate the way through adapted

and multidimensional solutions anticipate, avoid

or limit financial impact of chronic pain to patients.

Expert patient : a key player

Bringing their unique expertise of « LIVING

WITH CHRONIC PAIN » and « MANAGING PAIN

CARE PROCESSES » , Expert Patients may

become an essential contributor to pain

management.



Présidente de l’associationMartine Chauvin - La Tillerolle 1 Rte de la Petite Roche - 79200 Pompaire

Info patients : 0 810 510 310 Mobile : 06 15 57 83 83

Mail : [email protected] : http://www.association-afvd.com

AFVD CONTACTS

Thank you for your attention !

a ssociation f rancophone pour v aincre les d ouleurs sip 2012 afvd patient organization french...

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