Our lived experience advisory panel, which first met in September, now has a name chosen by the members. It’s now known as Patient Voices Matter.

The ten members chose the name because they are all passionate about wanting to share their experiences to make a difference and help patients.

Who are the members of Patient Voices Matter?

We recruited 10 amazing people from nearly 50 excellent applications from people from different backgrounds. Creating a group made up of people with different experiences was a very important part of this project.

Patient Voices Matter members come to the group from different backgrounds; they are all kind, supportive and passionate about improving health for all patients.

What have our first sessions highlighted?

Members’ experience of health inequality is very apparent. Despite the range of conditions, caring responsibilities, and backgrounds, there are common themes:

Communication must improve

Communication and services in general need to be more accessible to patients and carers across all types of care. This includes the way that appointment letters are written, how someone can get in touch with a GP, and how staff speak to patients. Members wanted to see health professionals receive more training around this.

The person before the condition

Members wanted to be seen as a person and not their condition – they want to be treated with dignity. There needs to be more understanding on, and better support for, people with learning disabilities, mental health issues and autism.

Lack of control

Members of Patient Voices Matter want greater control of their healthcare. They want their healthcare professionals to stop making assumptions, and ask them what they want.

This really resonates with me; the Patients Association recently published a report on shared decision making (when patients and healthcare professionals work together to decide treatment) and we think it’s a great way to involve patients in their care. The report is called Shared decision making: shared reality or insider jargon? We are also running an event on shared decision making on the 24th November (see below for more information and tickets).

NHS Constitution

The group believes the NHS Constitution and its principles are really important but didn’t feel that those principles reflect their experiences.

The members wanted to talk about two of the principles in our last meeting. The first is that the NHS provides a comprehensive service, available to all. Our discussions show this is not the case, with group members constantly struggling with accessibility and miscommunication.

The second principle is that the patient will be at the heart of everything the NHS does. The group, like us, think patient partnership is vital and needs to be more ingrained in the work of the NHS. The group’s first action is to look at how we can ensure the NHS Constitution is doing what it should be.

In the future

The Patients Association formed the lived experience advisory panel that is now Patient Voices Matter to help us learn how we can continue to do patient partnership properly. Patient partnership is the Patients Association's strategic focus, as we believe that to ensure everybody can access and benefit from the health and care they need to live well, services must be designed and delivered through equal partnership with patients.

If you would like to hear more about Patient Voices Matter, please get in touch at [email protected]

Sign up for our free Shared decision making: a reality for everyone? event next week.