Patients’ views were vital in developing the NICE guideline, says Victoria Thomas of the Patient Involvement Unit for NICE
In 2001, the National Collaborating Centre for Chronic Conditions, commissioned by NICE, began work on developing the recently published guidelines on the diagnosis and management of chronic heart failure.
The Patient Involvement Unit for NICE worked with the guideline development group, particularly its two patient representatives, to supplement the research evidence with the views of a patient focus group.
The patient experience
All 12 focus group members felt that it was important to receive an accurate diagnosis. Many had never received a formal diagnosis and were frustrated that the terminology health professionals used, for example ‘idiopathic dilated cardiomyopathy’, was used in place of a categorical diagnosis.
The group members felt that not all specialists would admit to having diagnosed a patient incorrectly, and said that patients would appreciate honesty over any mistakes made. Patients wanted detailed information about their prognosis at an early stage, but felt that health professionals were often unwilling to give this information, creating uncertainty about the future.
Nursing and medical staff showed high levels of compassion and care. However, patients felt that communication between consultants and patients could be better. Some consultants, they felt, appeared insensitive to patients especially when relatives were present.
Patients also felt that communication between all the health professionals involved in their care could be improved. Several patients felt frustrated at having to explain their case history at each consultation, even though the consultant had their notes to hand.
The GP’s role
Some patients were very positive about the attentiveness shown by their GPs. However, there was dissatisfaction that the patients felt they knew more about their treatments than their GPs did. Some said that ‘out of hours’ or locum GPs often appeared more knowledgeable than their own family doctor. Many felt that GPs should be more willing to refer them for specialist treatment.
On the whole, patients, particularly those also undergoing cardiac rehabilitation, were happy with their drug treatment. However, they expressed concern about taking several different drugs without knowing about possible interactions; they felt that their drug therapy was not reviewed often enough.
Rehabilitation and support
The focus group members who participated in cardiac rehabilitation programmes found them a very positive experience. However, patients were exasperated that few places were available.
Group members felt that psychological support was not available to those patients who did not take part in a rehabilitation programme. Some patients felt that counselling would be useful, to help them to manage the range of information they are given.
All members expressed frustration at ‘falling out’ of the system after they were discharged from a consultant’s care with no easy means of obtaining further support.They wanted to have clear management plans, which actively involved their carers.
Mutual support was felt to be an important therapeutic tool, which should be available from the outset.
The focus group was positive about the care they received and the health professionals who provided it, but found certain aspects, particularly those over which they had little control, very frustrating. They welcomed the national guideline and recognised the benefits in trying to standardise the quality and level of NHS care. The group’s main recommendations have been incorporated into the guideline.
Copies of the short version of the guideline, Chronic heart failure: management of chronic heart failure in adults in primary and secondary care, and the patient version, Management of heart failure: understanding NICE guidance information for people with heart failure, their carers, and the public, are available at: www.nice.org.uk.