Atrial fibrillation

Messages for health professionals and decision-makers from people with atrial fibrillation

We asked people what messages they would pass on to help health professionals and NHS decision-makers provide a better service and better care for people with atrial fibrillation (AF). Based on their experiences, they told us they wanted:

Honesty, openness and a willingness to share information
People wanted to understand better their condition and their treatment, advice about drugs and possible side effects, and a ‘straight down the line’ approach and open dialogue when discussing the risks of AF and surgical procedures.
People felt doctors should take people’s fears more into consideration. They wanted to know what to expect from their condition long-term; what to look out for and what to do should their symptoms worsen. (For more see ‘Psychological effects and facing the future with atrial fibrillation’).
Answers to their questions and more time
People also expressed a curiosity about their condition. They wanted answers to questions such as: How and why does it happen? Why did my AF start when I was young when it’s primarily a complaint of older people? Is it hereditary? Could I have prevented it? What is the best way forward? What are my options? What would happen if I did nothing? 

Yet some people did not always get answers to their questions or fully understand the implications of their condition or their treatment options. They stressed the need for doctors to give people time to consider treatment alternatives and an opportunity to ‘come back later and find out more’. As Mary said, ‘they assume we understand, but we’re not medical people’. Listening to people’s concerns was a key message for health professionals.
Empathy and reassurance
Above all, alongside ‘facts and figures’, people wanted empathy and reassurance from health professionals. Freda felt that being concerned can make AF symptoms worse and stressed the importance of putting the patient at ease. Rather than being brushed off with a simple ‘it’s AF, get on with it’, Paul asked medical professionals to give patients information at the same time as reassuring them.
People also stressed the need for health professionals to appreciate the psychological impact of AF on the patient and their family. (For more see ‘Psychological effects and facing the future with atrial fibrillation’). Nuala wanted doctors to show an understanding of ‘what AF’s like for the patient and the journey – an awareness of how debilitating it can be’. Eileen, who has had AF for ten years, spoke of the mismatch between a medical system which focuses on the disease, and people who have to live with its consequences. Similarly, Jeni reminded health professionals to be more sensitive to the impact of AF on people’s lives: ‘it might not kill you, but it devastates your life’. She stressed the need for doctors to ‘see the patient’s side as a whole rather than only seeing the disease’.
Patient centred care and shared decision making
Some people wanted doctors to appreciate that patients with AF are affected in different ways and to different degrees. As Eileen acknowledged, ‘people are affected differently – some are totally disabled, others aren’t’. There was a feeling that people and their specific needs could sometimes get ‘swept aside’ in the system.
People wanted health professionals to see them as individuals. When Gail was in hospital for an ablation, she felt as if she was in a ‘sausage machine’, where the nurses were ‘pleasant, but obviously not interested in you as a person.’ (For more see ‘Medical procedures and interventions for atrial fibrillation’). Many people felt that treatment options should take individual needs into account. Janet urged clinicians to look beyond AF and recognise co-existing health conditions which may conflict with standard treatments. Nuala urged health professionals to ‘listen to the individual’. Carin said she would have liked to have been told what the consultant thought would be best for her, and felt that doctors feared being sued, and thus tempered their advice.
Some people we spoke to wanted more control in monitoring and managing their condition. This was particularly the case in relation to self-monitoring of warfarin medication. (For more see ‘What is it like being on warfarin for atrial fibrillation?’). Dot was planning to start self-monitoring shortly and was pleased as it would fit in well with her working life. Roger spoke of how an expert patient programme had helped him manage his health.
Some people expressed views on commissioning. David Y felt that patient views need to be considered further rather than relying on ‘top down’ decisions when commissioning services for people with AF. When talking about the role of NICE (National Institute for Health and Care Excellence) guidelines in relation to treatments for AF, Paul felt that ‘their hands are tied by cost more than by effectiveness’. 

The best care available, regardless of where you live
People spoke of wanting to get the ‘best physical care available as quickly as possible’ and stressed the need for patients to be made aware of medications and their side effects as well as the range of services and facilities available. They wanted good follow-up support from their cardiac team after operations, regular monitoring and the opportunity to speak to other people with AF, as well as money set aside for research. Some suggested educating people about prevention and lifestyle to help them cope with AF. 

Having good support throughout was a key to successful management of AF. Some people spoke about how beneficial they had found the services of a dedicated arrhythmia nurse. They found the opportunity to contact their nurse directly by phone or e-mail particularly useful, finding this often assuaged their concerns and reduced GP visits and hospital admissions. 

People were adamant that good care should be available to everyone with AF, regardless of where they lived. They noted a lack of consistency in services across the country, expressing concern that certain areas of the country seemed to be more favoured than others. They told us that services for people with AF, access to specialist centres, and at times more expensive drugs and treatments, were not equally available. Glyn suspected that some forms of treatment were ‘just restricted to London’ and not available in the smaller hospital near his home.
Greater awareness of AF in primary care and in the community
Some people said that they had never heard of AF before they were diagnosed, adding that they would have taken their symptoms more seriously and visited their GP sooner had they known about the condition and the associated increased risk of stroke. With this in mind, they stressed the need to raise awareness of AF and stroke risk amongst both GPs and the general public, believing that early detection of AF and prevention of stroke would be more cost effective for the NHS. Brendan felt that awareness should be raised amongst the general public, but that it should be ‘very measured, so that people don’t get scared about confronting health issues.’ (For more see ‘Increasing public awareness about atrial fibrillation’).
Other people wished to stress the importance of anticoagulants (blood thinning medication), and of GPs and nurses taking people’s pulses (as blood pressure machines can measure the pulse rate, but not whether it is irregular). Elisabeth Y believes that health professionals need to learn to take pulses without using electronic gadgets. Some suggested a screening programme, incentives for GPs, or ‘supermarket roadshows’ where people could have their pulse checked opportunistically. Others suggested that posters should appear in GP surgeries to inform people about AF. (See also ‘Atrial fibrillation, stroke risk and blood thinning medication’, ‘What is it like being on warfarin for atrial firbrillation?’, and ‘Alternatives to warfarin for atrial fibrillation: the new anticoagulants’).
(For more see ‘Positive experiences of health care for atrial fibrillation’ and ‘Negative experiences of health care for atrial fibrillation’).

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