Most people we spoke to felt they were well looked after and they thought their care was the best available. There were many expressions of gratitude to their health professionals for improving their condition or keeping them alive.
Health professionals were often praised by the people we spoke to. Those whose check-ups were provided by a specialist nurse, either at hospital or at home, greatly appreciated the care that they received. They valued the explanations that the nurse gave them of their condition and its treatment, their readiness to answer questions, the lifestyle advice they gave, booklets they sometimes supplied for keeping records of weight and fluid intake and information about what to do in an emergency. One man said that the heart failure nurses were ‘invaluable’ and ‘worth their weight in gold’. Daniel said he felt so well looked after that there was nothing more that could be done for him other than being allocated a nurse around the clock. His specialist nurse was only available during normal working hours but he found that a short conversation with her could relieve his frequent bouts of anxiety. (See ‘
Specialist heart failure nurses‘)
Cathleen had been delighted that her local pharmacy had delivered her medicines to her home when she was too ill to collect them herself. She also commented that the telephone appointment system at her GP’s surgery had advantages and disadvantages.
Continuity of care was seen as important, with some people saying they tried to always see the same GP about their heart condition whenever possible so they wouldn’t have to explain their history to a different doctor every time they went to an appointment.
Seeing a specialist nurse also provided a level of continuity of care that was not always possible with GPs or medical specialists at hospital out-patient appointments. One man complained that he never saw the same GP twice and that all the GPs he had seen appeared poorly informed about cardiomyopathy‚Äö√Ñ√Æthe cause of his heart failure‚Äö√Ñ√Æso he would always prefer to speak to a specialist nurse. Although some people said they saw the same consultant every time they went for a check-up, several others said that they rarely saw the same doctor and that doctors didn’t take the time to familiarise themselves with the person’s medical history. This had on occasion resulted in contradictory advice being given or inappropriate changes being made to medication. For instance a 35-year-old man developed hepatitis from taking Zocor (simvastatin) and digestive difficulties from atenolol that required invasive investigations and treatment, after which it took two years to stabilise his system, then another doctor who had not read his history tried to prescribe Zocor again (see ‘
Other side effects of heart failure medication‘).
Another man said that each of the different hospital specialists he had seen, and his GP, seemed to have contradictory ideas about what medication he should be taking. His drug regimen had been changed so often that he was not surprised when things went wrong. An elderly woman changed her GP after another doctor advised her that she needed different medication from what the GP had prescribed. A woman in her fifties who had a cardiac resynchronisation therapy (CRT) device implanted was told conflicting information by different NHS staff about which hospital she should attend to have the device checked in the long term.
By contrast, others said that the specialists who looked after their different conditions communicated effectively with each other. A man who had developed liver and kidney problems and now had blood clots in one of his legs said that his various specialists were debating among themselves whether to increase his warfarin dose or discontinue it.
Continuity of care can foster rapport between doctors and patients, and some people talked about having developed a good relationship with particular health professionals and how much they appreciated the care they had given them. Many people who had check-ups with their GPs were satisfied with the arrangement, feeling that GPs had listened to them, reassured them and made sure that they were regularly monitored. Others said they liked the fact that their GP held heart clinics or had a special interest in heart failure. Some people we talked with were being monitored by a GP who had particular expertise in heart problems. Brian has complete trust in his GP/heart specialist and he no longer sees the need to have private health insurance. Vivienne has complete trust in the competence of her GP/heart specialist. Although her initial symptoms had been dismissed by hospital staff as panic attacks, her GP had identified them as those of heart failure.
Beth appreciated that she could discuss things frankly with her GP and disagree with him, and Philip referred to his GP as ‘the brains of the outfit’. A man who had the same GP for 25 years and sees him three times a year for his heart condition said that if he consults over some other health problem the GP takes a holistic view of him and checks up on his cardiovascular health at the same time.
As well as sticking with the same GP, a woman who had monthly home visits from a community heart failure nurse said it was always the same nurse who came and so they had developed a good relationship.
Building a relationship over time with a particular consultant was also valued. A man said he felt that the heart specialists he had dealt with treated him like a person not a number. A 49-year-old man who saw the same specialist repeatedly said he would never choose to move away from the area because he wouldn’t want to lose his current specialist, whom he valued for the way in which he explained his condition to him in simple language that he could understand.
Paula, whose heart failure is a result of congenital heart disease, has been seeing the same consultant for seventeen years, even though in that time she has moved 400 miles away from the hospital where he is based. They have a long-standing relationship based on trust and mutual respect, so she chooses to make the journey two or more times a year rather than seeing someone else. She has all necessary checks done while she is there, including her pacemaker download, and the consultant discusses her care with her local GP where necessary to ensure it is seamless.
Even where continuity was less of an issue the departure of a particular doctor from a hospital could upset established routines and damage the patient’s confidence. One man explained that when his cardiologist left he preferred to transfer to his own GP for check-ups.
The quality of care depends on multiple factors. It was recognised that NHS staff might be overworked and couldn’t always give the time to patients that they would like to; one person said that 5 minute GP appointments were inadequate.
We heard accounts of different levels of care in different parts of the country. Norman moved area specifically to obtain what he saw as better care than where he lived previously. Paul found his care less to his satisfaction after moving to a different part of the country on his retirement; he didn’t see a cardiologist as often as before and had to remind staff when things needed doing.
Others also said they had prompted their GP to do particular checks, such as blood pressure or cholesterol, if they hadn’t been done for some time.
Beth felt let down by her hospital when a follow-up appointment did not happen after she was discharged following treatment for a heart attack. As a result she had felt unsupported and had worried about things that could have been addressed by a hospital professional. Although she is checked regularly by her GP and practice nurse, she feels that these visits are not specific enough to her heart condition and she would prefer regular access to a cardiologist or specialist nurse.
Some people who were looked after in secondary care were reluctant to consult a GP about their heart failure because they seemed to lack expertise in it. A 35 year old man, who was under the regular care of a specialist cardiac nurse and had read a lot about his heart condition, believed that his GP knew less about heart disease than he did. Another said that the doctors treating him acknowledged that he knew about as much as they did about his condition.
There were some specific concerns about something people felt a particular professional had done or not done. This included delays in diagnosis or referral, and treatment decisions.
Another man whose heart condition was monitored by a specialist nurse was reluctant to consult his GP unless absolutely necessary because the GP had upset him on a previous occasion by saying something insensitive.
Summary added in April 2016.
