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AF Hampshire Patient Support Group Meeting (Andover 16 October 2018)

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AF Hampshire Patient Support Group Meeting (Andover 16 October 2018) AF Hampshire Patient Support Group Meeting (Andover 16th October 2018) Attendance: 27 AF patients/carers Apologies: CD, JD, BR, CP, FM, IM, RM, MP,AS, Speakers: Tamara Everington Consultant Haematologist (and Haematology Clinical Lead on the Wessex AHSN AF Programme) plus Drs. Chris Arden and Rob Bowers 1. Introduction: Tony Corbin (TC AFA PSG Coordinator) welcomed everyone, reiterating the aims of the PSG. He handed out copies of the one page AFA PSG Summary to the several first time attendees. (NB Donations of £49 were received (thank you) to cover the costs of refreshments (£25 charged by the hospital catering group).The surfeit of £24 has been donated to AFA. 2. Focus On Anticoagulation – Tamara Everington AF… This open Q&A style discussion started with Tamara providing a layperson’s explanation on what blood is, mentioning the role of plasma, platelets and the fact that blood clotting is a natural/needed process (i.e. in case of accident or a fall). The body is essentially programmed to make (and dissolve) clots. However, people are different (‘bleedy or clotty’) plus illnesses vary the blood make- up. Those with AF face up to a 5x higher risk of injurious clots leading to strokes. Anticoagulant therapy protects and restores ‘the system’ to a healthy balance and lowers stroke risks. Tamara added that Aspirin no longer viewed as effective for those with AF. (unless in addition to anticoagulants for blocked arteries with symptoms). Anticoagulants (Warfarin and the new DOACs) Long established, Warfarin is still viewed as an effective treatment for many patients living with AF.(Don’t fix what isn’t broken). However, some patients do experience very variable blood thinness readings (INR) leading to very regular testing. Some suffer side effects (tiredness and cold fingers/feet is relatively common) and older more frail patients prone to falls, need to take account that cranial bleeding risk is higher with Warfarin versus DOACs. Also if undergoing surgery/dentistry etc., consult your health adviser – possibly will need to temporarily lower dosage (although INR<4 ok for most dental work). (Regular) Ibuprofen is not advisable especially if history of stomach ulcers. Tamara next explained that DOACs (Dabigatran, Rivaroxaban, Apixaban, Edoxaban) work entirely differently to Warfarin (Fast versus slow acting and they block a specific part of the ‘clotting cascade’). Do not need monitoring, indeed INR level may show normal (i.e. 1). Being shorter acting, it is vital to take DOACs at same specific time each day (more impact if dose missed). Patients are advised not to have surgery/tooth extraction immediately after dosing but delay taking their tablets until after on that day. Finally, some DOACs may not be suitable for patients with Lactose Intolerance or significant Kidney issues (warfarin is the only suitable anticoagulant in severe kidney failure). Addressing an email submitted question (a patient with permanent AF, AV node ablation, a pacemaker and experiencing episodes of rapid ventricular ectopics (and VT) plus varying INR coincident with changed other medication) Tamara’s view was that moving from Warfarin to DOACs unlikely to provide many advantages. Other Specifics included: a. Dabigatran – acid in capsule which may give indigestion if it gets stuck on swallowing, take with water; has an antidote. Twice daily dosing the norm. Not suitable if kidney function is poor. 1 b. Rivaroxaban – Once daily, must be taken with food (1/3 less effective if not. Not the best choice if ‘bleedy’ from nose / mouth / bladder / bottom. May worsen diarrhea / headaches and sometimes causes rash. c. Apixaban – Twice daily (12 hourly), may worsen diarrhea / rash, low risk of bleeding from the gut d. Edoxaban – Once Daily Not the best choice if ‘bleedy’ from nose / mouth / bladder / bottom. Looking to the future, it is likely that AF patient protection methods will be even more individualised and closely linked to Genetic Profile matching techniques in order to assess and treat risks. (For further guidance, please talk to your Health Professional. Much more detail in the attached AFA Booklet on Anticoagulation and Anticoagulants) 3. Updates: Tony Corbin Mention was made of the AFA Patients Day (7th October) in Birmingham. The AF agenda included the following topics: TC mentioned there were new publications available both as downloaded PDFs or in Hard Copy from AFA. These included booklets focusing on Bradycardia (Slow heart rhythms) AF Devices (Pacemakers/ICDs) and the diagnosing techniques related to AF. (AFA Website address is at foot of notes). A brief update on the AF Programme work of AHSN (Wessex Academic Health Science Network) referenced the roll-out of AF detecting AliveCor devices to GP surgeries. Patient PM’s appearance on a BBC South Today feature also mentioned (see link at foot of notes). Tamara (Everington) is leading work related to providing a ‘Patient Charter’ to simplify and achieve consistency related to anticoagulation procedures, prescribing and counselling for AF Patients. This is under the auspice of the Hampshire Regional Anticoagulation Network – Patient Expectations initiative (AHSN website address is at foot of notes). 2 4. Open Q&A (Doctors Arden and Bowers) Questions posed included: Does Cod Liver Oil reduce Cholesterol? – No proven gains or benefits Ablations – Previous have not worked, is the Derriford method recommended? – Viewed as very invasive and not necessarily better chance of success over catheter based ablations. Weight and AF? – Exercise and sensible diet always recommended. Remember to keep hydrated! What is an Ablation? – Change Heart’s electrics to promote normal (sinus) fibrillation Does scarring cause recurrence of AF after ablation? – A normal feature, formed in around six weeks. Doesn’t add to risk of recurrence per se. Paroxysmal AF can it be controlled? – ‘Pill in the pocket is a remedy if recurrent. Beta-Blockers and Cardioversion other ways to get back into sinus rhythm. Simply lying quietly on the floor can reduce ‘adrenalin’ and can help promote a return to regular rhythm. The AF Big Issues – the results of the previous meeting exercise were briefly covered. It was agreed Paroxysmal AF can be more symptomatic than Permanent AF: Breathlessness, to varying degrees, is a commonly experienced consequence of AF and finally the psychological impact of chronic conditions like AF is becoming better understood with more focus on emotional wellbeing than ever before. The precise date, time and venue for the next meeting will be advised after checking our clinician’s availability. Any ideas for topics to be included in the next session, please contact TC. We will aim for a meeting date in March 2019. With thanks offered to the contributions and time given by Tamara and our resident Doctors, the meeting concluded shortly before 7.45pm. AF Information Sources and Partner Website Links: AF PSG Meeting Coordinator - Tony Corbin: [email protected] Mobile 07801-166223 NHS Advice: https://www.nhs.uk/conditions/atrial-fibrillation/ Heart Rhythm Alliance Charity: http://www.heartrhythmalliance.org/aa/uk AHSN - http://wessexahsn.org.uk/programmes/29/atrial-fibrillation-detect-perfect-protect Starting Anticoagulation with Jack <Video> https://vimeo.com/206257430 Alive-Cor AF ECG Device BBC South Today Feature: https://vimeo.com/262379552 3 .
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