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Giving people with blood cancer a voice

Professor Claire Harrison, Consultant Haematologist at Guy’s and St Thomas’ NHS Foundation Trust, blogs about the power of the patient voice in improving blood cancer care.

claire harrisonAs an eager sixth-former about to head off to medical school I received some advice from a local GP and father of my friend: “Always listen to your patients.”

Reflecting how this advice has influenced our practice in the myeloproliferative neoplasms (MPN) clinic at Guy’s and St Thomas’ NHS Foundation Trust demonstrates that the basic clinical skill of listening is as important today, more than 30 years later.

What are myeloproliferative neoplasms?

MPN are a group of rare disorders of the bone marrow that cause an increase in the number of blood cells. This overproduction of blood cells in the bone marrow can create problems for blood flow and can lead to various symptoms, including shortness of breath, fatigue and sweating. There are three main types of MPN:

  • Polycythemia vera – when the body makes too many red blood cells
  • Essential thrombocythemia – when the body makes too many platelets (needed for clotting)
  • Myelofibrosis – when the body makes too many blood cells and scar tissue forms inside the bone marrow.

Being diagnosed with an MPN can leave patients feeling vulnerable. To help settle this vulnerability our team, supported by Guy’s and St Thomas’ Charity and a group of local patients, founded a patient education and advocacy group called MPN Voice.

A community for blood cancer patients

BCA MPN graphic1MPN Voice provides clear and accurate information and emotional support to people who have been diagnosed with a myeloproliferative neoplasm (MPN), including families and friends. The group now has members across the UK and throughout the world. MPN Voice offers patient forums and a peer support programme to allow people with MPN to contact others in similar circumstances. We also have an online forum at HealthUnlocked which provides a supportive and informative platform for people to ask questions about anything related to MPN. In addition, we produce information leaflets and a newsletter for people with MPNs so that patients are better informed and have more confidence dealing with and managing their condition. Most of all we aim to offer hope to everyone who are affected by MPN.

This truly collaborative team effort has led to between eight and ten national patient forums per year. An active buddy scheme provides patient to patient support at difficult phases of the disease, including at diagnosis and when the time comes to make treatment decisions. The group has successfully supported phase 1-3 trials in a range of novel targeted therapies. It has also represented the patient voice and successfully overturned a negative National Institute for Health and Care Excellence (NICE) decision on funding for the first targeted therapy for the most aggressive MPN – myelofibrosis.

Making strides in MPN care

Last year, MPN Voice and our clinical team at Guy’s and St Thomas’ published an international MPN Landmark Study on the major impact MPN has on patients and their families. The study has helped put MPN on the research agenda for the future and identified a need for improved patient-physician communication. With the help of patients and clinicians at MPN voice we can better unify the health goals of people with MPN and their physicians, worldwide.

The King’s Health Partners Haematology Institute is aiming to bring together our strengths in clinical service, research, and education to deliver exceptional outcomes for haematology patients. Our vision is to develop cures and vaccinations for haematological conditions so that future generations do not have to face lives with these diseases.