SIP 2012 Precariousness and pain The added value

SIP 2012 « Precariousness and pain. The added value of expert patients » AFVD Patient Organization French speaking association against Pain Mme Martine CHAUVIN, AFVD funding president, Pompaire, FRANCE A F V ssociation pour rancophone 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 A F V ssociation pour rancophone 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 A F V ssociation pour rancophone aincre les D ouleurs

A F V ssociation pour rancophone aincre les D The real impact of chronic pain 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.

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

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

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 A F V ssociation pour rancophone aincre les D ouleurs

A F V ssociation pour rancophone aincre les D Healthcare organization in France ouleurs 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 200 PAIN STRUCTURES 66% OF PATIENTS ARE WOMEN 1 to 3 FTE physicians per structure TYPE OF PAIN - Back Pain (20%) - Neuropathic (17%) - Headache (16%) > 500 medical consultations / yr / structure 53% HAVE PAIN FOR > 2 YEARS 30% ARE IN WORK INCAPACITY or SICK LEAVE DUE TO PAIN

A F V ssociation pour Pain specialists rancophone 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.

A F V ssociation pour rancophone aincre les D Chronic pain management issues ouleurs PAIN MANAGEMENT ISSUES AND IMPACTS 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 / nonspecific / incomplete pain management (insufficient pain relief) - Insufficient / uneven care costs coverage

A F V ssociation pour rancophone aincre les D Chronic pain management issues ouleurs PRECARIOUSNESS WORSENING FACTORS • Delay to diagnosis & care access • Lack of «global » management • Insufficient efficacy of non-specific treatment • Cost of care

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 A F V ssociation pour rancophone aincre les D ouleurs

A F V ssociation pour rancophone aincre les D Expert patient : DEFINITION 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.

A F V ssociation pour rancophone aincre les D Expert patient : ROLE ouleurs THE EXPERT PATIENT provides added value to medical management, and has a personnalized approach with each patient. THE TEAM « EXPERT 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. 1 PATIENT 1 SOLUTION

A F V ssociation pour rancophone aincre les D Expert patient : SKILLS ouleurs The Expert Patient has specific skills and missions : - Empathy; Inspires confidence; Listening skills; Patience; Dialog; Communication skills; personal pain experience BREAKS PATIENT’S ISOLATION - Positive attitude; motivational skills; « coaching » skills HELPS THE PATIENT TO BECOME AN ACTOR IN HIS PAIN LIFE AND CARE MANAGEMENT

A F V ssociation pour rancophone aincre les D Expert patient : ACTIVITIES 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 0810510310, emails) - Represents AFVD during congresses - Actively participates to the design and practise of Patient Therapeutic Education programs

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

A F V ssociation pour rancophone aincre les D Expert patient : a key player 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. Bringing their unique expertise of « LIVING WITH CHRONIC PAIN » and « MANAGING PAIN CARE PROCESSES » , Expert Patients may become an essential contributor to pain management.

A F V ssociation pour rancophone aincre les D ouleurs Thank you for your attention ! AFVD CONTACTS Présidente de l’association Martine Chauvin - La Tillerolle 1 Rte de la Petite Roche - 79200 Pompaire Info patients : 0 810 510 310 Mobile : 06 15 57 83 83 Mail : association-afvd@neuf. fr Web : http: //www. association-afvd. com