Atrial fibrillation

Negative experiences of health care for atrial fibrillation

People with atrial fibrillation (AF) meet a range of health care professionals. While there is a great deal of satisfaction with the service and treatment people receive at times experiences of health care can fall short of expectations. We spoke to people about some of the difficulties they have faced.

Dissatisfaction with the system
Some people reported scheduling issues, including having to wait eight months to see a consultant for diagnosis, a 45 minute wait to see a GP while in AF, and insufficient consultation time.
Carin recalled being very frightened when her symptoms were being investigated in hospital, and asked unsuccessfully for some form of tranquiliser for her anxiety. Anne said that her experience in hospital was not satisfactory, having to spend eight hours on a trolley in A&E before being found a bed. She admitted being ‘far far more frightened of A&E than the attack itself’.
Poor communication, attitudes and care
Attitudes of consultants and their ability to communicate appropriately and effectively were central to people’s experiences of care. Some people felt that health professionals had dismissed their concerns with flippant, off-hand or thoughtless comments. Elisabeth X, diagnosed at age 30, recalled her ‘very nice and sympathetic’ GP sitting on her bed and explaining ‘that we all had to die of something and it was likelihood it would either be cancer, a stroke or a heart’. Glyn’s medical team failed to take into account how Glyn’s AF made caring for his special needs son more difficult. The surgeon’s dismissal of his concerns with the comment ‘Oh well, I’m only here to treat your atrial fibrillation. Your son is your responsibility,’ was disappointing.
Some people we spoke to did not feel comfortable asking questions or felt that at times their consultants failed to treat them as an individual. Eileen felt patronised when at the age of 52 she was ‘patted on the head’ and told, ‘It’s your age. AF is one of those things – you have to learn to live with it - this is as good as life’s going to get’. Elisabeth X, recalled how she asked for a transfer to a different cardiac unit after tensions with her consultant. She described him as ‘an ‘old school sort who didn’t believe in telling patients what was wrong with them’ or answering their questions.
Unhappy with the service he was receiving at the hospital, Martin adopted a proactive stance by asking his GP to refer him directly to a particular consultant who was considered ‘the best man in the country’. Chris X said that he lost confidence in the specialists at his local clinic and decided to stay under his GP’s care. In retrospect, he felt he was put straight onto a ‘blunderbus’ drug rather than something ‘more benign’, and that the consultant was a ‘war horse’ who dictated his treatment to him. Lack of a full explanation or prognosis, an ablation which failed ‘because they’d left it too late’, poor follow up and monitoring after surgery, and a feeling that ‘they don’t want to know’ when calls to the hospital for advice went unanswered, left Glyn feeling frustrated and uncertain what to do. He described himself as ‘just a name and a number’.
Some people felt they had not been fully informed about their condition and its risks. Freda would have liked a ‘definitive answer’ as to whether her AF would deteriorate as she got older. She would have preferred an honest discussion with her cardiologist. Some said that they had not been told that they were at increased risk of stroke due to their AF, instead finding out by doing their own research. On reflection, Geoff is ‘not sure they even mentioned stroke’ when he was diagnosed nine years ago.
Some people reported a negative reaction from their consultant when they refused to follow their advice. Mary’s cardiologist was ‘quite pressing’ in suggesting she have cardioversion to control her palpitations. Deciding against the treatment, Mary described how he ‘lost interest because I wasn’t cooperating’. Others felt they were given little choice in deciding on their treatment.
Treatments did not always take into account pre-existing health conditions. Eileen was ‘not particularly impressed’ at the impact of a change in medication on her blood pressure. Roger was told that, in addition to AF, he was also showing some symptoms of chronic fatigue syndrome but that further investigations into this could not be conducted until his AF was ‘under control’ or cured. He felt that this was unfair given that he had been experiencing AF for ten years and that it was not at that point under control.
Freda was disappointed to have been discharged by her cardiologist, even though she felt her AF was not completely under control. She felt she would like occasional monitoring rather than being discharged completely. Geoff found he struggled with the lack of continuity in the specialists that he saw, and that there sometimes seemed to be a lack of clarity in what they said. He felt that AF was not fully explained to him in terms of people’s varying severities and symptoms, and possible treatment options. Martin, whose sister also had AF, expressed shock at her GP’s lack of knowledge of the specialist role of an electrophysiologist. He felt that this showed a lack of current awareness of AF and referral and treatment options.
Problems living in isolated areas
Living in an isolated area or being away from home could be challenging. When having an episode of AF while on holiday in Wales, Geoff said that staff at the A&E department at the local hospital were unsure how to treat him, which subsequently led to anxiety about being away from his local hospital.
(For more see ‘Positive experiences of health care for atrial fibrillation’)

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