How to feel empowered
Having a heart event or finding out you’ve got heart disease can knock your confidence. Rachael Healy hears how learning about your condition and speaking to people in the same boat can help you feel empowered.
Empowerment is often talked about in terms of transforming your life and following your dreams. But it’s also become a buzzword in health and social care. Being actively involved in your own treatment can improve the outcome and the NHS has promised to support this, by helping patients manage their own health and make informed decisions about their care.
When you’ve just been diagnosed with a heart condition, you face two big obstacles – emotional distress and complex medical information. Combined, they can undermine your confidence. Hearing about other people’s experiences, so you know you’re not alone, and learning more about your condition, so you feel comfortable getting involved in your healthcare, can be the first steps towards empowerment.
Meet others in the same situation
Janet Tait was 65 when she was diagnosed with angina and had to have an angioplasty procedure. She’d been leading an active life, swimming and gardening regularly, so the news came as a surprise and shook her confidence.
“It was all very new and very scary at the time,” says Janet, who lives in Lanark with her husband David. “After the procedure I was worried about what I could and couldn’t do. The hospital staff are very good at their jobs, but they don’t have the time to spend having a chat and they’ve never gone through the procedures themselves, so they don’t have that experience.”
Being actively involved in your own treatment can improve the outcome, and the NHS has promised to support this
Janet also found it difficult to speak to friends and family about her condition and how it was making her feel. On a follow-up visit to the nurse, she mentioned her concerns and was referred to cardiac rehabilitation.
“You met other people who had experienced the same things – with tablets or the effects of the operation,” says Janet. “You could actually converse with them and felt like you weren’t alone anymore.”
After eight weeks of cardiac rehab, Janet was referred to a cardiac exercise class, which helped her maintain her fitness in a reassuring environment. “It’s very much a chatty group,” she says. “A big benefit was being able to speak to other people who have heart disease.”
Share knowledge and ask questions
Heart disease runs in Janet’s family. After her own diagnosis, learning about the genetic element of heart disease and the medications she’d been prescribed helped Janet feel more confident about asking doctors and nurses questions.
“I felt like I needed to know,” says Janet. “Reading is definitely important – I get Heart Matters magazine and I read about my statins. It’s important to let your doctor know if you have any problems at all.”
A recent survey found that when they ask their doctor an important question, 30 per cent of patients only ‘sometimes’ or ‘never’ receive an answer they understand. Jim Clough is a trustee at Salford Heart Care, a Heart Support Group in Greater Manchester, and organises informative talks to help group members learn more about heart disease. He says that meetings can also function as a safe setting for members to share experiences and information.
If we can help people ask the right question, they can become the master of their own destiny
Trustee, Salford Heart Care
“If someone reads an article that makes them more aware of their condition, they tend to bring it into the group,” says Jim. “We also have guest speakers: pharmacists, dieticians, and one of our patrons is a cardiologist, who updates us on what developments in heart care are occurring. Members can take that information and talk to their doctor.”
Jim had a heart attack seven years ago and knows from his own experience the huge difference that peer-to-peer support and medical knowledge can make. A chat with his local group leader helped him regain control of his situation, after two years of feeling lost.
"He advised me how to ask the doctor certain questions and be more assertive,” says Jim. “Sometimes people don’t understand the terminology used by the medical profession. I come from a generation where you respected the doctor – if they said there was something wrong with you, that is what is wrong with you.
Some of our members are reluctant to ask questions or don’t know the right questions to ask, as in my situation. If we can help people ask the right question, they can become the master of their own destiny.”
Find support to help boost your confidence
In a recent GP patient survey, 13 per cent of patients felt they had not had enough support to manage their long-term condition. The support patients desire comes in many forms. Jim and his fellow volunteers arrange blood pressure monitoring, relaxation sessions, exercise classes and even a simple cup of tea and a chat, all based on feedback from group members.
“We don’t give medical advice, but we do give support,” says Jim. “We’ve got so many members who have experience of so many different things, and it’s reassuring knowing someone else has already been through it. We make people aware that they are not alone. I’ve found that trauma has a lot of commonality.”
In a recent GP patient survey, 13 per cent of patients felt they had not had enough support to manage their long-term condition
Janet now provides similar support for heart patients in Lanarkshire. A member of her cardiac exercise group decided to set up a local Cardiac Rehabilitation and Support Group, including a buddy service. Janet and seven others trained with Chest, Heart & Stroke Scotland and began visiting Wishaw General Hospital to provide support to other patients. The group’s motto is: ‘A buddy can help increase your confidence in living with a heart condition.’
As well as empowering others, becoming a buddy has helped Janet feel empowered. “It’s dramatically boosted my confidence,” she says. “You really feel you’re giving something back.”
She advises other patients to take things slowly as they build their own confidence. “Take small steps, like walking to your local shop or doing activities at home,” she says. “Start one day at a time and see how you go. Look for someone to speak to. If they can say, ‘I’ve had that’ or, ‘When I was on that tablet, that happened as well’, that can be a big help.”