Heart failure

It was common for people to be told that they could contact a health professional in between scheduled appointments if they needed to, and many had done so. For some it was an emergency situation, such as suspecting a heart attack, or their nitrate tablets or spray had not cured their angina pain, so they had phoned 999 or gone to A&E or called out their GP from a nearby surgery. Peter said that by calling the GP out of hours service their journey through A&E could be speeded up even if they were not taken in by ambulance.

Specialist nurses often gave out their phone numbers and, while some people we spoke to understood that they could phone the nurse day or night, others understood the nurse was only available during normal office hours. One had called the emergency services instead: Daniel, who was under the care of a transplant centre, could phone there and speak to a consultant if he had concerns out of normal working hours, although he wished he could access his local specialist nurse out-of-hours as a short conversation with her would usually reassure him. One man phoned his specialist nurse if he needed clarification of test results that he routinely received in writing. Others contacted them if they felt poorly. Those who had access to a specialist nurse who was available day and night and would visit them at home greatly valued having this level of support, one man describing it as a ‘lifeline’. Just having the phone number for a specialist could be a comfort, even if there was no need to call. Some people who didn’t have access to a specialist heart failure nurse had been given the means to contact a cardiac rehabilitation nurse or other hospital staff if necessary between appointments; one said he could talk to the nurses at the warfarin clinic. Those who had implanted devices were able to contact the technicians if they had concerns about how the device was working. One woman lived very close to her hospital and was comforted by knowing that she could get there quickly if she had problems.
 
Contacting their consultant or GP between appointments was another option, which some did when they experienced a new symptom episode. Beth requested a new referral to a cardiologist because a planned follow-up consultation had not happened and she was experiencing a new symptom episode. Although she was being regularly monitored in primary care, she had felt abandoned by the hospital and would prefer to see a specialist heart failure nurse about her heart condition.
 
Although it is relatively easy to make an appointment with a GP, people may still lack confidence about consulting them for things which may seem trivial because they lack awareness of what to look out for. One man said he felt guilty when he contacted the GP about non-specific symptoms, whereas the doctor said she was pleased to see him. Making an appointment to speak to a hospital specialist is more difficult, so being given permission to phone a consultant between appointments was greatly valued. One man said he had felt able to do this with a previous consultant with whom he had a very good relationship, but not with his current one (see ‘Satisfaction with health professionals’). We asked some people whether they had been advised what to do in the event of worsening or unexpected symptoms. When asked what would make them seek professional help between scheduled appointments people said that if they experienced unexpected symptoms, a worsening of their condition, or just felt ill, they would contact a specialist or community nurse or their GP or consultant where possible. Some would call the NHS non-emergency number out of hours and one man said if he became extremely breathless he would dial 999.


 
Summary added in April 2016.