Pioneers in patient care: consultants leading change
London
Professor Carol Black
Royal Free Hospital, London
Job title: Professor of rheumatology/centre director
Speciality: Rheumatology
Innovation: Patient helplines – run by specialist nurses, one for patients with connective tissue disease and another for patients with pulmonary hypertension.
Two patient helplines, established by Professor Carol Black and her team, have provided rheumatology patients with a service in London that not only gives them direct access to expert clinical advice, but also a source of physical and emotional support.
Professor Black and her team were keen to improve the care provided for patients and also help medical staff with the treatment of these conditions, hence the establishment of the helplines in 2000. Professor Black says: “The service was introduced to allow us to offer a more holistic approach to the care of individual patients. It also allows us to react promptly when a patient needs expert advice. On the staff side it provides support for local rheumatologists and GPs in dealing with patients with rare diseases like scleroderma a condition in which the skin becomes hard, causing stiffening of the joints and leading to gradual wasting of the muscles. It reduces the amount of time spent by non-expert medical staff on calls from concerned patients.”
For the patient, the benefits are manifold, says Professor Black. “The helplines offer easy access to the department and help decrease the sense of isolation often felt by those suffering from a rare disease. At the same time they help patients manage their condition. The helplines also allow nurses to monitor the patients’ needs and adjust drug dosages using predetermined protocols.”
The helplines have also helped lift the workload from some members of staff in the department. “The specialist nurses are able to filter calls, so the rest of the staff do not have to spend time dealing with enquiries they may not be able to answer. The specialist nurses also deal with pre-admission queries and undertake a programme of follow-up calls on patients with chronic conditions,” says Professor Black.
“We also provide a credit card sized information card for people with scleroderma which tells patients and doctors what to do if they develop complications such as pulmonary hypertension and hypertensive renal crisis, both of which could lead to an emergency.”
Professor Black says the service needs more time and resources. She says: “Patients are becoming increasingly better informed and wish to be more involved in decision-making, but for this type of involvement to take place we need more time with patients. Our Trust has tried to improve the situation, but it’s difficult – there are just so many competing pressures.”