Jamie O’Hara, UK Haemophilia Society; Hortensia de la Corte Rodriguez, Hospital Universitario La Paz, Madrid; Pier-Luigi Solimeno, University of Milan; Miguel Crato, EHC Steering Committee; Lotte Haverman, Amsterdam UMC; Nathalie Roussel, University of Antwerp; Paul McLaughlin, Royal Free London NHS Foundation Trust
Frank and open Q&A about alternative treatments, physical activity, opioids, physiotherapy; comparing various European models in pain management. As always, focus must be patient-centered and patient must be taken into account. Being paternal does not work.
“There is no bleed without pain but there might be pain without a bleed,” @CratoMiguel opens Pain Management Round Table from Brussels.
Chronic pain occurs in over 50% of respondents from PROBE study when walking. The truth about pain in haemophilia: Results from the CHESS & PROBE studies w/ Jamie O’Hara, UK Haemophilia @HaemoSocUK
Joint morbidity has significant impact on resource use. Avoiding it has substantial and dramatic impact. – Jamie O’Hara.
The brain interprets pain signals + the brain is plastic = barring real damage, the brain’s interpretation can be altered using physical activity (which reverses ascending & descending pathways). Good news: @EHC_Haemophilia provides physical activity grants! (retweeted from Amanda Bok)
“Pain is a universal symptom of every condition & it’s management is an art” says Jamie O’Hara at @EHC_Haemophilia RT on pain management before sharing pain data. (retweeted by Amanda Bok)
Nathalie Roussel beautifully sets the scene of @EHC_Haemophilia RT on pain management and calls on all clinicians to use a broad biopsychosocial assessment plan with patients. (retweeted by Amanda Bok)
“Most of you think of haemophilia as a bleeding disorder with orthopaedic complications; I see haemophilia as an orthopaedic disorder with bleeding complications” says Luigi Solimeno at @EHC_Haemophilia RT on pain management, discussing multiple treatment options. (retweeted from Amanda Bok)
Debunking painkiller myths at @EHC_Haemophilia RT on pain management w/ Hortensia de la Corte Rodriguez.
Painkiller pharmacology is not easy & not well-studied in haemophilia, says Hortensia de la Corte Rodriguez at @EHC_Haemophilia RT on pain management, walking us through general WHO analgesic ladder instead. (retweeted from Amanda Bok)
Physiotherapist Paul McLaughlin nails it: best evidence: listen, communicate, assess – physical, appropriate outcome measures, educate, motivate, support, facilitate. Patient-centered! Chronic ongoing knee pain? Another x-ray will not help that.
The vicious cycle of haemophilia – the role of the physiotherapist in pain management in haemophilia w/ Paul McLaughlin, Royal Free London NHS Foundation Trust
Focus has been on stopping the bleeding and not so much on stopping the pain. – Paul McLaughlin
Only 30% of patients use physical activity to deal with pain, reports Paul McLaughlin, noting that’s almost as many people as use ice or prayer! Why aren’t more people using physio?! From @EHC_Haemophilia RT on pain
Respect, candour, accountability, and the primacy of the patient’s lived experience – as usual a wonderfully down-to-earth, pragmatic & empathic talk by Paul McLaughlin at @EHC_Haemophilia RT on pain management. (retweeted by Amanda Bok)
The pain circle w/ Lotte Haverman, Amsterdam UMC. When to use psychological interventions to manage pain? Dutch model takes into account doctor, social worker, psychologist, physio, nurse.
Holistic and practical exercises for relaxation: foursquare breathing, guided imagery, self-talk, hypnosis, mindful mediation.
Lotte Haverman takes us through psychological aspects & cognitive behavioural therapy approaches to acute & chronic pain at @EHC_Haemophilia RT on pain management. (retweeted from Amanda Bok)
Jim is aged 66 and has Haemophilia A with a high titer inhibitor which he developed at age 14.
Maria Elisa Mancuso (MD, PhD) is a Haematologist and works as a Senior Haematology Consultant at the Center for Thrombosis and Haemorrhagic Diseases of IRCCS Humanitas Research Hospital in Rozzano, Milan, Italy. She is Adjunct Clinical Professor at Humanitas University. She obtained a post-degree in Clinical and Experimental Haematology and a PhD in Clinical Methodology. She is involved in clinical research and has published several original articles in peer-reviewed journals a The Lancet, Blood, Journal of Thrombosis and Haemostasis, Haematologica, Thrombosis and Haemostasis, British Journal of Haematology and Haemophilia. She is reviewer for several peer-reviewed journals and member of the Editorial Board of JTH. She is a member of several scientific societies (ISTH, WFH, ASH, EAHAD, SISET, AICE) and was a medical member of the Inhibitor Working Group of the European Hemophilia Consortium. She is co-chair of the ADVANCE Study Group. She has acted also as co-chair of the Scientific and Standardization Subcommittee of ISTH on FVIII, FIX and rare bleeding disorders. She has been involved as principal and co-investigator in several clinical trials, and she takes care of both children and adults with hemophilia and other congenital bleeding disorders with a specific scientific interest in novel therapies, prophylaxis, inhibitors, and chronic hepatitis C.
As a patient with factor II deficiency, the diagnostic and treatment of rare bleeding disorders is a matter dear to my heart. My motivation to participate in the work of the ERIN committee is to improve both diagnostic and treatment for patients with rare bleeding disorders across Europe.
Economist and financial expert by profession, executive coach and trainer by passion and haemophilia advocate by every drop of my blood through my son (who has severe haemophilia A with inhibitors). Bringing a good decade of practical experience from the corporate insurance world, laser focus, growth mindset and resilience from my own experience, offering you anything I can just do, in hope that together we can make life more fulfilled for those impacted by bleeding disorders.
Amy Owen-Wyard is a Registered Mental Health Nurse. With experience working with children, young people, their families and adults with severe and enduring mental health conditions. Amy was also involved in a service improvement to provide a holistic care approach for those in general hospitals to support both their mental and physical health, whilst sharing her expertise and knowledge in mental health with the wider multidisciplinary team.
