The Full Interview:
CHANGE [Jamie Marshall]:: Tell us about Breast Cancer Now
Breast Cancer Now (Anna Preciado): Breast Cancer Now is the UK’s largest breast cancer charity, we fund life saving breast cancer research, we also campaign for the best possible treatment and care or breast cancer patients.
In addition to our research and campaigning we also offer a range of support services for people with breast cancer, both online and face-to-face.
Breast Cancer Now also has a range of information and booklets that are written by clinical specialists and reviewed by health professionals and people affected by breast cancer., information is available in hospitals, can be downloaded or can be ordered and will be sent out in the post.
I work in the Breast Cancer Now Service Pledge which is a patient-led service improvement program that we offer free to NHS service and has been running for 20 years. In that time, we have worked with over 150 breast cancer services across the UK.
The aim of the project is to improve patient experience for all breast cancer patients, we do this by helping the trust to gather feedback from primary and secondary breast cancer patients, and hospital staff on their breast cancer service, we do this using surveys and focus groups; We then work with patients and services to come up with a plan which we call the service pledge which acts on the feedback given to create positive change. This service pledge works by empowering patients and staff to improve the service, increase patients’ confidence in care and treatment and also improve services in the ways that matter most to patients.
CHANGE: Thank you so much for telling us all about Breast Cancer Now.
Why is it important for you to have easy read information?
Breast Cancer Now: Earlier this year, we worked with an external agency to evaluate and review the current service pledge program, with the goal of increasing its impact. One of the key areas that we identified was the need to reduce barriers to participation. As part of this work, we reviewed our data collection methods, and we now offer a range of data collection methods to help us reach a more representative sample of patients to ensure that more voices are heard.
This all comes back to accessibility, removing all the barriers that we can to enable our service users to be engaged and participating in all our activities including the service pledge.
Accessibility is essential and we want to ensure that our services are available and can be used by as many people as possible, this includes people with impaired vision or hearing, cognitive impairments and learning disabilities.
We know that according to the Department of Work and Pensions, around 24% of the UK population lives with a disability and that's nearly one in four people, which is a huge, huge proportion. As an organization we understand that everyone is unique and even though people may have similar disabilities their needs may be very different so we want to recognize that disabilities and other inequalities can all have an impact on breast cancer diagnosis and treatment.
Research shows that in England, 43% of adults in the UK do not understand written health information, to be able to reach as many people as possible we need to carefully consider the language that we use. Using plain English helps to ensure our information is clear and easy to understand so that people can take informed action about their health, this is really important and why easy reads are absolutely essential for us.
Our health information team works really hard to ensure that Breast Cancer Now is accessible to everyone and our publications are available in different languages as well as Braille, large print and audio formats. We are also really committed to improving access to people with secondary breast cancer and the health information team is currently exploring ways to expand out easy-read resources to better meet their needs.
For the service pledge team, it is crucial to gather feedback from a representative sample of the population where we're delivering the project and we're working hard to break down barriers for participation and building trust with everyone involved. A key part of this is making our service pledge information clear and accessible, so everyone who receives it can understand and engage with it.
CHANGE: That’s really lovely to hear, Accessibility I so important to us as an organization and it’s great to hear of all the things that you’re doing to make sure that Breast Cancer Now are as ass accessible as possible to as many people as possible.
What was it like working with CHANGE?
Breast Cancer Now: We worked with CHANGE to develop an easy-read version of our survey pack documents, these materials are sent to people with primary and secondary breast cancer who are eligible to take part in the service pledge at selected NHS trusts. The packs include the survey itself along with key information about the program., its importance and how to take part. Working with CHANGE was absolutely fantastic, they have such expertise to bring that we don’t currently have when creating easy read.
We know that standard written documents can sometimes be too complex or intimidating, particularly if they're sent by their healthcare provider. And that's why, partnering with organizations like CHANGE, who bring expert knowledge is so, so important. CHANGE’s support helped us ensure that we provide high quality, accessible information to everyone taking part.
This work is very important because by reducing barriers to participation, we create a more welcoming and inclusive experience and this allows us to gather richer, more diverse feedback that's going to lead to meaningful conversations with healthcare professionals and drive improvements in breast cancer services without deepening existing inequalities. Working with CHANGE was really essential to be able to do this piece of work. Rowena (one of CHANGE’s designers) was absolutely fantastic. She is great at delivering the documents on time and her images are absolutely spectacular and we really can't wait to start trialling it with our patients.
CHANGE: We're really excited too. We really enjoyed reviewing it in the words of pictures team and really liked the pink branding.
Breast Cancer Now: Oh, that's so nice to hear and say we are obsessed with the images, they are just so nice and they are so good at catching exactly what we want to communicate with patients, they are really easy to understand in a simple but very nice and engaging way to patients and for users.
I would love to hear what you thought about the work?
CHANGE: We loved the images, we loved the branding as well and we talked a lot about how there's a lot of healthcare inaccessibility and we love partnering with organisations that are working to reduce those barriers and to increase accessibility.
It brought up a lot of things for us, as some of us have been personally touched by breast cancer. So, it was lovely to see the ongoing work that's being done, by organisations such as yourselves to, you know, just really improve people's quality of lives and make sure that they're OK.
Breast Cancer Now: Oh, thank you. I just wanted to reiterate how important it is to listen to a broad range of experiences because it just brings newer fresh ideas and insights that can lead to real improvements in care. It also ensures that when hospitals make changes, for example, with the service pledge, they're doing it in a way that reduces health inequalities and not aggravating them. The goal is to create better care for everyone, not just a few.
We wouldn't be able to, to do this without organisations like yourself. Thank you.
CHANGE: Thank you for agreeing to be interviewed.
CHANGE would like to take this opportunity to thank Anna Preciado and the Service Pledge team at Breast Cancer Now.
