Heart failure

The National Institute for Health and Clinical Excellence (NICE) has produced guidance about how heart failure should be managed, which includes, in addition to lifestyle advice and drug treatments, regular monitoring of the condition.
 
The frequency of visits to a health professional varied enormously, ranging from yearly to weekly depending on the patient’s needs and local arrangements. Some people we spoke to were managed entirely in general practice, some entirely by hospital specialists, and others by a mixture of professionals from both sectors. Check-ups sometimes took place at the hospital because the person was taking part in a research study. Some people had been admitted and re-admitted to hospital for treatment to stabilise their heart failure, and continued to be looked after by a particular cardiology team. In other cases people’s main point of contact was a specialist heart failure nurse based in the community. GPs who had a special interest in heart disease might hold special clinics either at the local surgery or the hospital, meaning that their patients saw a hospital specialist less often or not at all. In addition, people who had a pacemaker or an ICD periodically attended a download clinic with a technician. Some people said they kept a list of questions to ask at these appointments. Daniel had been considered for a heart transplant in the past before his condition improved; he was still under the care of the transplant team at a specialist hospital as well as a cardiology team at his local hospital and his GP. A 53 year old woman said she was very surprised to be given her treatment in a 'department for the elderly'. A woman whose heart failure was a consequence of congenital heart disease was particularly attached to a specific consultant at a hospital 400 miles away from where she now lives and she refuses to see anyone else. She travels there at least twice a year and has her pacemaker checked at the same time.
 
Some people had blood samples taken either at hospital or the practice in preparation for consultations with a doctor or a nurse. People who were taking warfarin had regular blood tests to measure their International Normalisation Ratio (INR) (clotting time) done either at a specific hospital warfarin clinic or by a phlebotomist at their local surgery; tests were typically every two to four weeks. One woman had her own INR testing kit for home use.
 
As well as face-to-face consultations some people received automated prompts to provide information about their condition to a professional. Daniel received a weekly text message reminding him to send blood pressure, pulse and weight measurements back to the hospital by text. Anne received a weekly automated telephone call in which she had to press buttons according to whether she was more breathless than usual, her ankles were swollen or she had put on weight. Check-ups commonly involved a physical examination, a chat about the person’s condition and their general well-being, plus blood tests and measurement of height, weight and blood pressure. Changes to medication were made by consultants, specialist nurses or GPs, while height, weight, fluid, urine, blood pressure and cholesterol checks were usually done by specialist nurses, practice nurses or unspecified hospital staff. Some people mentioned attending hospital for occasional ECGs, echocardiograms, or other types of scan. Paula mentioned having an exercise tolerance test; Daniel had a right heart catheterisation – a procedure to measure the pressure inside the heart. Knowledge about what was being measured in blood tests was limited, apart from specific INR tests to determine the dose of the blood-thinning drug warfarin. Some were aware that a range of things were measured but didn’t know the details. Others knew of one particular thing amongst many, such as cholesterol, haemoglobin, or kidney function. One participant complained that the veins in his elbow often collapsed so blood would have to be taken from the back of his hand instead.
 
Specialist nurses sometimes visited people at home, but one man said that he now preferred to see his specialist nurse at the hospital because it gave him a reason to go out. The frequency of visits had reduced since his condition had been brought under control. A man in his eighties said that his GP had visited him once or twice a week at home while optimising his medication regimen, but he had since attended his GP surgery every fortnight and from now on had been told to only visit the GP when he felt a particular need to do so.




Summary added in April 2016.