Living with a Mechanical Heart Valve: Click.Tick.Thump. Love It!

Support Group for Mechanical & Artificial Heart Valve Surgery & Using Warfarin

ACSMA

AntiCoagulation Self-Monitoring Alliance (ACSMA)

01 April 2013
The Mechanical Heart Valve Support Group is a founding member of the UK based Anti Coagulation Self Monitor Alliance. We need your help and support to REALLY make a difference in peoples lives who rely on warfarin such as with our group. Self Monitoring is a better and more effective way in managing  our lives and families. Please join us at ACSMA and make YOUR voice heard with this extremely important change we are trying to bring about in the UK health system! 

Sincerely

Graeme Archer

Founder

Mechanical Heat Valve Support Group 


Our Vision

“We are campaigning for greater choice for patients on warfarin about how their condition should be managed. Our goal is to empower patients and we believe where possible they should have the choice about whether to self-test or self-manage their treatment. We believe that this change would enable improved health outcomes and save time and money for both patients and the NHS.”

Background:

There are more than 1.2 million people in the UK on warfarin of which less than two per cent benefit from self-monitoring, despite evidence that it can cut the risk of death by nearly two-fifths and more than halve the risk of strokes. AntiCoagulation Self-Monitoring Alliance (ACSMA) launched in October 2012 with the specific objective of achieving greater access via prescription to INR self-monitoring technology for people receiving warfarin therapy. ACSMA is also seeking to raise awareness of the benefits of self-monitoring and aims to ensure that people are equipped to have informed discussions with their healthcare professionals on this topic.

Our objectives:

  • To ensure INR self-monitoring technology is available, accessible and on prescription through the NHS for eligible patients
  • Increase awareness of the benefits of INR self-monitoring
  • To ensure those taking long term warfarin are able to have an informed discussion with their doctor about self-monitoring

Our members:

ACSMA comprises four of the UK’s leading charities and patient groups – AntiCoagulation Europe; the Children’s Heart Federation; AF Association; Mechanical Heart Valve Support Group – that exist to provide advice, support and guidance to people on oral anticoagulation therapy, as well as their families and healthcare professionals. Healthcare company Roche is also part of the alliance.

Anticoagulation

About AntiCoagulation Europe (ACE)

AntiCoagulation Europe (ACE) is a registered charity committed to the prevention of thrombosis and the provision of inf0ormation and support for people receiving anticoagulant and antiplatelet therapy. For more information, please go to the website: www.anticoagulationeurope.org/

AFA

About AF Association

AF Association is an international charity which provides information, support and access to established, new or innovative treatments for Atrial Fibrillation (AF). For more information, please go to the website:www.atrialfibrillation.org.uk/

 

ChildrensHeart

About Children’s Heart Federation

Children’s Heart Federation (CHF) is the UK’s leading children’s heart charity and an umbrella organisation for 23 member groups which support heart children and their families. CHF supports families through its information service, grants programme, peer support events and the provision of medical equipment. The charity also lobbies for changes to the health, social care and education systems for the benefit of heart families. For more information, please go to the website: www.chfed.org.uk/

MechanicalHeartWte

About Mechanical Heart Valve Support Group (MHV)

Mechanical Heart Valve Support Group (MHV) is a ‘not for profit’ online volunteer support group for people and their families with mechanical heart valves which necessitate anticoagulant therapy for life. Over 5000 MHVs are implanted in the UK every year. For more information please go to the website www.MechanicalHeartValve.org/

Roche

About Roche

Headquartered in Basel, Switzerland, Roche is a leader in research-focused healthcare with combined strengths in pharmaceuticals and diagnostics. Roche is the world’s largest biotech company with truly differentiated medicines in oncology, virology, inflammation, metabolism and CNS. Roche is also the world leader in in-vitro diagnostics, tissue-based cancer diagnostics and a pioneer in diabetes management. Roche’s personalized healthcare strategy aims at providing medicines and diagnostic tools that enable tangible improvements in the health, quality of life and survival of patients. In 2011, Roche had over 80,000 employees worldwide and invested over 8 billion Swiss francs in R&D. The Group posted sales of 42.5 billion Swiss francs. Genentech, United States, is a wholly owned member of the Roche Group. Roche has a majority stake in Chugai Pharmaceutical, Japan. For more information visit: www.roche.com and www.roche.co.uk

Read more about our parliamentary drop-in session held on October 24th and our parliamentary reception held on 6th February 2013



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Comment by Graeme on June 26, 2013 at 11:05

Hi,

Anti Coagulation Europe has asked us if any of our members could help us by participating in a survey about patient experiences in anti coagulation services.  If you can assist us with a short survey please follow this link to the survey form. It's only a short one and it WILL help all of us on warfarin! 

cheers

Graeme Archer

Comment by Graeme on June 26, 2013 at 10:55

Health: Home test kits change the lives of heart kids

David Hepworth and his mum Sarah



Hi-tech machines are helping youngsters facing frequent hospital visits. Katie Baldwin found out how.

Coping with your child going through open heart surgery is difficult enough. But for many families the cycle of constant medical appointments continues for many months or years.

And for some, they could face the prospect of hospital visits as much as three or four times a week for the rest of their lives.

That’s if it wasn’t for a small machine which makes all the difference.

Sarah Hepworth, whose son David uses a machine to test his blood in order to see how much of the drug Warfarin he needs, said it had changed their life. More here:

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