Last year the PHA-UK offered sponsorship for a nurse from each of the pulmonary hypertension (PH) centres in the UK to attend the biennial American Pulmonary Hypertension Association conference in June. I was thrilled to be offered this opportunity to attend the conference, and I was really excited that I would be going to Miami!!!
I represented the pulmonary hypertension team from The Royal Free Hospital. The Hospital is part of the London consortium of PH NSCAG centres, including Hammersmith Hospital, Great Ormond Street and The Royal Brompton Hospital. At the Royal Free we predominantly care for people who have pulmonary hypertension associated with a connective tissue disease.
I was interested to learn about patient experiences in the USA, in particular those affected with PH related to connective tissue disease. In one of the discussion groups I attended patients stated that although they were under the care of doctors with specialist knowledge for their connective tissue disease, the care for pulmonary hypertension was often taking place at other hospitals, and that these centres were often not easy to identify. In an ideal world patients would like both centres of expertise in the same place. This is a service we are able to offer at the Royal Free.
The treatment, in the USA, for pulmonary hypertension associated with connective tissue disease is similar to the treatments available in the UK. Patients on advanced therapies identified that they would appreciate more support from health care professionals, particularly in the many places without a dedicated specialist pulmonary hypertension team.
One difference that I identified was the way in which patients receiving their PH prostacyclin therapy through a Hickman line were taught the skills to care for their infusion and line. The Hickman line would be inserted as a day procedure and a family member would be taught to care for the line. Patient education was carried out as an outpatient process, this heavily relied upon family participation and if patients did not live close to the hospital, they would stay in a hotel within close proximity of the hospital. At the Royal Free Hospital Hickman line insertion and patient teaching are performed whilst an inpatient.
I was fortunate enough to stay in the hotel where the conference was being held, which worked out well as there were plenty of early starts. The hotel was a short distance from South Beach, so I also got to sample some of the famous beach culture.
After the conference I took time out to do some sightseeing, and for the first time in my life I hired a car and drove on the wrong side of the road. I admit I was very nervous, but fortunately my trip down to Key West was a straight road, so I didn't have to worry about any wrong turns. I would recommend this trip, as the scenery on the drive down was beautiful. On my journey back to South Beach I took the opportunity to pay a brief visit to the Everglades, where I was able to have a tour with a real life Park Ranger, named Larry.
I felt very privileged to be able to attend the conference, which brought together patients and healthcare professionals from all over the world to share experiences and expertise. I know it has helped to improve my understanding of how people are affected by pulmonary hypertension and hopefully in turn improved the care I provide for my patients at the Royal Free Hospital.
I would like to thank the PHA-UK for sponsoring me to attend this conference.
Joanna Smee Pulmonary Hypertension Nurse