Nov 15, 2019
Wendy Gin-Sing RN, MSc, MRes, is an advanced nurse
practitioner with the Pulmonary Hypertension Service at the
Hammersmith Hospital in London. In this episode, she discusses
the first ever PAH Patient Charter that was launched on
November 12, 2019 to coincide with PH Awareness Month. The Charter
was facilitated and sponsored by Actelion, a Janssen Pharmaceutical
Company of Johnson & Johnson and a PAH-expert Steering Committee
made up of patients, patient advocates and healthcare
professionals. #PAHPatientCharter #phawarenessmonth
My name's Wendy Gin-Sing. I'm a Pulmonary Hypertension Nurse Specialist. I work at the Hammersmith Hospital in London. I've been looking after pulmonary hypertension patients for about 24 years, and the last 20 years as a Nurse Specialist. I've seen quite a few changes over the time.
Today, I want to talk to you about the new PAH Patient Charter that's just been released.
But first, let me give you a brief explanation about what pulmonary hypertension is. To understand pulmonary hypertension, you need to know what the normal circulation in the body is. You have two circulations, one which pumps blood all the way around the body, and that's the blood pressure that can be measured on your arm. And then there's a second circulation where the heart pumps the blood through the lungs so that it picks up oxygen ready to start off again. In pulmonary hypertension, the pressure in the blood vessels in the lungs goes up.
Normally, this is just very low pressure, because you don't need the blood to go very far. It just goes from one side of the heart to the other by the lungs, and the oxygen moves over from the lungs into the blood vessels at low pressure. In pulmonary hypertension, blood vessels in the lungs change. The walls become thicker. They become less elastic, and the pressure goes up in the blood vessels. This then places more demand on the right side of the heart, which, over time, becomes tired and can sometimes fail.
The PAH Patient Charter came about through Actelion, a Janssen Pharmaceutical Company of Johnson & Johnson. They got a group of us together: patients, patient associations, doctors, nurses. We sat down together and discussed about what we felt was really important when looking after patients with pulmonary hypertension. Both from the medical side and the patient side. We came together and we agreed on many points, and have produced the Charter. This Charter is going to be important for patients, caregivers, and clinicians looking after pulmonary hypertension.
It sets out what patients with pulmonary hypertension should expect. Some of the very simple things like an earlier and accurate diagnosis, being involved in decision making, access to the therapies that are available in their country, and also, and probably the most important, the holistic care for patients so that they can actually live life well and have a better quality of life.
When this is released, I think patients can use it in a variety of ways to speak to their health care professionals, and to try and ensure that they are getting the standard of care that's set out in the Charter, but also to be able to use it for lobbying politically and through the health care organizations in the countries they're in to improve the care of all patients with pulmonary hypertension.
In the UK, we're very lucky that we have designated centers and access to all the pulmonary hypertension medications. But I am aware that there's many places in the world that don't have specialist centers. They have health care that they can't access all the drugs. For some patients, it takes a very long time to get a diagnosis.
The optimal patient journey really starts in the very beginning, getting an early and accurate diagnosis. It still takes around two years in countries with developed health care to achieve a diagnosis of pulmonary hypertension. Whilst the first year, maybe, patients perhaps [are] not seeking medical attention, they have often seen four or five different physicians over the next year before they get an accurate diagnosis.
Once patients have their diagnosis, they should have access to all available pulmonary hypertension therapies within their country. They should also have their care from a most disciplinary team so that they can look after their holistic needs. Not only their physical needs, such as rehabilitation and doing more exercise and managing their symptoms, but also the psychological care that patients, and not only patients, but their carers as well really need as they're going through the journey with pulmonary hypertension. For some patients who pulmonary hypertension therapy doesn't control all their symptoms, they need supportive care to help manage those symptoms. As the disease progresses, they should then have input from the palliative care teams, so that they have a really good quality of life throughout their pulmonary hypertension journey.
I was honored to be asked to take part in the Patient Charter group. It was really good to meet up with patients, physicians, patients, advocacy groups from around the world: PHA Europe, PHA (US), phaware global association®, the PH Association for Latin America, Singapore, Greece, and Germany. It was really important that advocacy groups were involved in the PAH Patient Charter. As health care professionals, we see pulmonary hypertension very much from our point of view, and the associations have many members, all of which who live with the disease or care for somebody who does. It's so important to get their views so that this PAH Patient Charter is really a whole global initiative.
The PAH Patient Charter is really important, because it will help patients be more empowered so that they can be part of making the decisions about their care. Not only because they're better educated, but also they have more confidence in being able to talk to you, [the health care professionals,] but making decisions about the care that really affects them.
Pulmonary hypertension can affect anybody, from little children up to people who are very old. It affects people in every country, and that's why it's important to have a global PAH Patient Charter that we use to improve quality and quantity of life with patients with pulmonary hypertension. We're excited that the PAH Patient Charter's been launched during Pulmonary Hypertension Awareness Month. To learn more, search the hashtag #PAHPatientCharter.
My name's Wendy Gin-Sing, and I'm aware that I'm rare.
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