Anne had never heard of AF, but says she would have acted sooner if she had been aware of the increased risk of stroke associated with the condition. For her, the idea of having a stroke is the most frightening thing of all. Diagnosed in 2011, she now realises that she had probably had AF for around six years. Thinking that palpitations were a normal part of ageing and remembering older relatives having them, she so did not initially go to see her GP. Anne is also asthmatic, and thought that the breathlessness she felt was due to that. A typical AF episode usually happened during the evening, when sitting quietly. Anne had no warning signs and could not see a pattern to the episodes. She went to bed and tried to sleep, but often this meant a rough’ night and she felt exhausted and unwell for a day or two after. Anne also has an enlarged heart, diagnosed when she was younger, however she does not think that this has any connection to the AF.

When the frequency of Anne’s AF episodes increased to once every 12 weeks, her GP referred her to a cardiologist. She was given a 24 hour monitor to wear but did not have an AF episode during that time. When she next had an episode, she saw her GP, who called for an ambulance. Anne was amazed as she felt no differently than she did during any other AF episode. She was impressed by the ambulance staff and had an ECG in the ambulance and again at the hospital. However, she waited for 8.5 hours on a trolley in A&E before getting a bed on a ward. Despite Anne feeling better, the monitors showed that the AF was still happening. She received an injection of digoxin and stayed in hospital for four days. Her consultant mentioned the possibility of an ablation procedure, but after speaking to colleagues they agreed that given Anne’s AF was occasional, it would be too risky for her to have an ablation at this stage.

Initially prescribed warfarin, Anne found the regular blood tests and frequent need to adjust her medication difficult: I was one of those people who wasn’t very well controlled on warfarin’. Her warfarin levels could be affected by food, antibiotics and alcohol for example. Visiting the hospital regularly for blood tests while on warfarin intruded into her life so much that Anne decided to self-monitor her warfarin level. However, her GP practice was unable to prescribe or support self-monitoring as the local healthcare trust did not fund it. Eventually Anne bought her own equipment. It was phenomenally expensive’, with the machine costing about ¬¨¬®¬¨¬£450 and the testing strips about ¬¨¬®¬¨¬£3 each.

With the arrival of new anticoagulants Anne was prescribed rivaroxaban and has not had an episode of AF since starting the medication. Although concerned that no antidote is currently available for bleeding, Anne describes being on rivaroxaban as much less troublesome’ and is pleased that regular blood tests are not required. Alongside rivaroxaban, Anne also takes the beta blocker carvedilol. She tried 25mg twice a day but it triggered her asthma and she was told the dose was not good for asthmatics. She now takes 12.5mg twice a day. She also uses asthma inhalers, and takes simvastatin (for cholesterol), and omeprazole for her perforated stomach.

Anne has found the information available at conferences organised by the Atrial Fibrillation Association (AFA) excellent. Although her consultant is happy to answer any questions, he has not volunteered information or discussed the increased risk of stroke. She was advised, however, against completing long-haul travel that she had planned for a few weeks after an AF episode.

Anne feels there are contradictory messages relating to AF. She says on the one hand she has been told it is not life-threatening, but then her GP called an ambulance when she had a usual episode of AF. She says that when she has seen a GP or consultant, they have provided good care, but she has struggled to get appointments, and been left waiting around to be seen. She says it is very hard to get a GP appointment in her area. She recalls one occasion when she called 23 times before getting a line, and was finally told there were no appointments left. She wrote to the practice and was told they were looking at their procedures, but she has not noticed a change yet. On another occasion she made an advance appointment, and the earliest one she could get was in several weeks time. Anne feels strongly that the occasion she was kept waiting on a trolley in A&E for 8.5 hours was not acceptable, but she said that the doctors were dismissive of the fact that had happened. She says she gets the feeling that because the NHS is free, people are expected to be grateful, and to accept such occurrences. She also feels that much of it is out of the hands of doctors and nurses, and it is in fact a wider organisational issue.

Anne thinks that people are not aware enough of AF and its risks. She urges people to see their GP if they are having symptoms, and to make sure they are prescribed an anticoagulant. Her message for health professionals is listen to your patients!’ She feels people should be given autonomy over their condition if they want it. She advises family and friends not to panic the person with AF or treat them like an invalid. She says that AF has made her reflect on her mortality, and she feels a little more nervous about having her grandchildren to stay now. But free of an episode of AF for around two years now, Anne is feeling much more positive about the future.

Interview held 7.2.12
Follow-up audio interview 29/01/15