Highlight on International EP Organizations: All About the Cardiomyopathy Association

The Cardiomyopathy Association (CMA) is a registered charity in the United Kingdom that helps patients and their families affected by cardiomyopathy. EP Lab Digest speaks with Sarah Dennis, Information Manager of the CMA, about their goals and activities.

Tell us about the Cardiomyopathy Association (CMA). When was it formed, and why? The Cardiomyopathy Association was set up in 1989 by the late Carolyn Biro. She was American and had hypertrophic cardiomyopathy. When she came to the UK she found there was very little information or support available for patients and their families. Thus, she started the group at her kitchen table and later ran it in the conservatory at her house in Watford, Hertfordshire. At the start of 1996, the charity moved into its first offices in Watford and is now in larger premises in Chesham, Buckinghamshire.

Approximately how many CMA members are there currently? Is membership limited to patients or can cardiac health professionals also join the CMA? The CMA has around 2,900 members. Members include patients, family members, medical professionals and general supporters.

What benefits are provided by the CMA to cardiomyopathy patients? What information can patients find on the CMA website? The CMA’s core work is providing information and support to patients and their families. The charity has separate booklets on each of the main types of cardiomyopathy (hypertrophic, dilated and arrhythmogenic right ventricular cardiomyopathy) and also provides videos and CD-ROMs on hypertrophic and dilated cardiomyopathy. The CMA has a telephone helpline [+44 (0)1494 791224], including a free phone number in the UK, as well as support groups across the UK and a network of volunteers (who have the condition themselves or have family members affected) offering one-on-one support over the telephone. We also publish a quarterly magazine that has health features on cardiomyopathy and related subjects, news on developments in treatment and research, patient stories, a question and answer page, and fundraising articles. The charity holds information days around the UK; these are open to patients affected by the condition, their family members and friends. Medical people are also able to attend. These information days feature cardiomyopathy experts from the Heart Hospital in London, who give talks on the different types of cardiomyopathy, treatments and latest research. CMA staff also talk about the services available from the charity. The information days give those who attend the chance to meet others who are similarly affected. The CMA website gives comprehensive and accurate details about the condition, countering much of the old and sometimes misleading information available elsewhere on the Internet. The CMA site covers in detail the different types of cardiomyopathy and treatments, and includes an array of features about living with the condition. There is a question and answer section, a helpdesk and a message board. There is also a separate section on the website dedicated to children with cardiomyopathy. I think it is especially helpful that the CMA has “key contacts” that patients can call. Tell us about these volunteers and about the differences they’ve made. The CMA has a network of almost 50 key contacts who offer one-on-one support over the telephone to those affected by cardiomyopathy. The key contacts either have the condition themselves or have the condition in their family. They undergo a day’s training with the charity, in which they study listening and counseling skills and learn about the support available to them from the CMA. Key contacts offer people with the condition the chance to talk to others who really understand what they are feeling and who have faced similar difficulties. One newly diagnosed patient told us, “I can’t stress enough how brilliant it was to talk to someone who not only knew about cardiomyopathy, but understood what I was going through. I had been lost in a fog, but now I had a point of reference and I could start to find my way. The key contact gave me lots of encouragement and support, and the thing I now remember most about the conversation was that she lived with the condition. She had children, a job and most of all, a positive attitude to life. When I put the phone down, I felt a huge weight had been lifted from me. I knew then that I too could live a full life.”

When was the CMA’s message board started? What are some of the most common patient concerns and questions addressed? The message board was started in 2003. The most common concerns people have when joining the board are about survivability. There is a great deal of old and inaccurate information on the Internet about cardiomyopathy. Part of the CMA’s work is to address this and help people to understand their condition so they can live their lives. The other concerns relate to isolation. Many people who are diagnosed with cardiomyopathy are not able to meet others similarly affected. The message board often provides them with their first contact with other people who have a similar diagnosis, who understand the problems they are facing. Your website mentions that the CMA funds cardiomyopathy nurse specialists around the UK to help assist the patient, assess the family tree, etc.

How did such a program come about? How many of these nurse specialists are there? Why is it important to help fund such positions? Cardiomyopathy is not a well-known condition, has many different presentations (some patients are severely affected, some very mildly affected), and is often inherited. So when someone is diagnosed with the condition, it is important that a medical person takes time to sit down with the patient so that he or she can explain fully what the condition is, allow the patient to ask questions, and also look at the family tree to see if other family members need to have heart checks. In a busy cardiac unit, with the majority of patients being treated for coronary artery disease, this is often difficult. The CMA wanted to help ensure that patients with cardiomyopathy received this special time. The charity started by funding a nurse’s post with Professor William McKenna’s inherited heart disease team (initially at St. George’s Hospital in Tooting, but now at the Heart Hospital in London). The CMA has since funded a nurse at the Royal Hospitals, Belfast, one working between the Royal Alexandra Hospital, Paisley and the Western Infirmary, Glasgow, and one at the South Yorkshire Cardiac Centre, Sheffield.

Does the CMA support or help sponsor public cardiac screenings to diagnose cardiomyopathy? How many people in the UK are affected by cardiomyopathy? Our cardiomyopathy experts estimate that around 1 in 500 people in the UK are affected by hypertrophic cardiomyopathy, around 1 in 2,500 by dilated cardiomyopathy, and around 1 in 10,000 by arrhythmogenic right ventricular cardiomyopathy. This means around 200,000 people in the UK are affected by the condition. Because the condition usually runs in families, the CMA campaigns for patients and their family members to receive regular screening in a specialist clinic to find those at risk and save lives. The CMA also wants to see more genetic testing available to affected families to try and establish which members of the family are at risk of developing the condition. These are our priorities.

When is the next regional information day being held? How many are held each year? The charity holds five information days a year. The next one is being held on Saturday, September 20th, from 9:30am to 5pm at the Holiday Inn in Regent’s Park, London. The following one will be held at the Village Hotel Liverpool in Whiston, Merseyside, on Saturday, November 1st.

Tell us about the Cardiomyopathy 2009 conference. When were the CMA annual conferences started? What are some of the topics covered at these meetings? The CMA’s national medical conferences started in 2004, as there were no conferences dedicated to the condition at the time. Since then the CMA annual medical conference has become an established and important part of the medical conference calendar, and each year more than 120 doctors and other medical professionals attend from the UK and other parts of the world. Over the years, the conferences have looked in detail at each of the main types of cardiomyopathy and also associated conditions. In 2009 the conference will focus on “Dilated Cardiomyopathy and Non-Compaction.” The conference is being held on Friday, May 16th, 2009, at the Cavendish Conference Centre in London. The charity also holds regular conferences for nurses to improve their understanding of the condition as well as to provide updated information on the latest treatments.

What are the Cardiomyopathy Association’s plans for the future? The CMA is keen to develop more services for families affected by cardiomyopathy as funding allows. We will continue to campaign for improved care for families affected by cardiomyopathy and more widespread genetic services. In addition, we plan to fund more nurses in cardiomyopathy care and in genetic services to help improve availability of these services to families. The CMA is also looking to employ a nurse in the UK head office to further improve its helpline services. Another aim is to continue to expand the number of key contacts and support groups around the country. A booklet on children with cardiomyopathy is due to be published by the CMA later this year.

Is there anything else you'd like to add? The CMA’s ultimate aim is to ensure that all patients with cardiomyopathy receive good care as a standard. The CMA has for many years worked directly with the UK government to improve services to patients in the UK. The charity had representatives on a government board that drew up new guidelines (Chapter 8 of the National Service Framework for Heart Disease) for the care of patients and families, and they now sit on the implementation board for Chapter 8. The charity has also been working with pathology organizations to help ensure correct postmortem diagnosis and tissue collection when people die suddenly from the condition. These are essential for determining the proper care for family members.

For more information, please visit www.cardiomyopathy.org.