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A ssociation F rancophone pour V aincre les D ouleurs SIP 2012 AFVD Patient Organization French speaking association against Pain Mme Martine CHAUVIN,

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Presentation on theme: "A ssociation F rancophone pour V aincre les D ouleurs SIP 2012 AFVD Patient Organization French speaking association against Pain Mme Martine CHAUVIN,"— Presentation transcript:

1 A ssociation F rancophone pour V aincre les D ouleurs 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 »

2 A ssociation F rancophone pour V aincre les D ouleurs SIP 2012 « Precariousness and pain. The added value of expert patients » -The real impact of chronic pain -Chronic pain management issues -Expert patient : added value

3 A ssociation F rancophone pour V aincre les D ouleurs SIP 2012 « Precariousness and pain. The added value of expert patients » -The real impact of chronic pain -Chronic pain management issues -Expert patient : added value

4 A ssociation F rancophone pour V aincre les D ouleurs 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

5 A ssociation F rancophone pour V aincre les D ouleurs MULTIDIMENSIONAL CONSEQUENCES OF CHRONIC PAIN PHYSICAL DISABILITY PSYCHOLOGICAL DIFFICULTIES FAMILIAL DISTURBANCES SOCIAL ISOLATION PROFESSIONAL DESINSERTION FINANCIAL ISSUES The real impact of chronic pain CHRONIC PAIN

6 A ssociation F rancophone pour V aincre les D ouleurs PRECARIOUSNESS FACTORS The real impact of chronic pain FINANCIAL ISSUES LOSS OF WORK LOSS OF INCOME DIVORCE ACCOMODATION ISSUES ISOLATION, LONELINESS LOSS OF SUPPORT

7 A ssociation F rancophone pour V aincre les D ouleurs SIP 2012 « Precariousness and pain. The added value of expert patients » -The real impact of chronic pain -Chronic pain management issues -Expert patient : added value

8 A ssociation F rancophone pour V aincre les D ouleurs Healthcare organization in France 200 PAIN STRUCTURES 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

9 A ssociation F rancophone pour V aincre les D ouleurs 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

10 A ssociation F rancophone pour V aincre les D ouleurs 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

11 A ssociation F rancophone pour V aincre les D ouleurs 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

12 A ssociation F rancophone pour V aincre les D ouleurs SIP 2012 « Precariousness and pain. The added value of expert patients » -The real impact of chronic pain -Chronic pain management issues -Expert patient : added value

13 A ssociation F rancophone pour V aincre les D ouleurs 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

14 A ssociation F rancophone pour V aincre les D ouleurs 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

15 A ssociation F rancophone pour V aincre les D ouleurs 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

16 A ssociation F rancophone pour V aincre les D ouleurs 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 , s) -Represents AFVD during congresses -Actively participates to the design and practise of Patient Therapeutic Education programs Expert patient : ACTIVITIES

17 A ssociation F rancophone pour V aincre les D ouleurs Expert patient : A TEAM PLAYER MEDICAL EXPERTISE Pain therapy, Psychological management, Physical therapy CHRONIC PAIN PATIENT PERSONAL NEEDS : Pain, psychological distress, physicial impairment, financial issues, social isolation, … EXPERT PATIENT ADDED VALUE : Psychological support, advices for social, familial and professional difficulties

18 A ssociation F rancophone pour V aincre les D ouleurs 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.

19 A ssociation F rancophone pour V aincre les D ouleurs Présidente de l’association Martine Chauvin - La Tillerolle 1 Rte de la Petite Roche Pompaire Info patients : Mobile : Mail : Web : AFVD CONTACTS Thank you for your attention !


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