The Perfect Patient Information Journey in Scleroderma

Scleroderma can be a complex, unpredictable disease that affects people in many different ways. But what might the scleroderma journey look like? It is important that SRUK understands this, so that we can offer support that is tailored to the needs of our community.

Alongside leading doctors, nurses and members of our community, we have been working on a project to identify the scleroderma patient journey. This involved mapping the key points when someone is likely to need specific information: such as at diagnosis, when considering treatment options, or if symptoms suddenly change. We did this to create the ‘perfect patient information journey’, meaning a scenario where everyone can access reliable information at the time when they need it.

We began in 2021, when SRUK partnered with the Patient Information Forum to map and identify the patient journey. We held workshops with consultants, nurse specialists and people living with scleroderma, to find out more about peoples’ experiences, and the areas where information has been lacking. The sessions revealed a patient journey that can be complex and uncertain for many people. Some of the key findings included:

• If you have never been in this situation before, early appointments can be quite daunting. Therefore, some appointment information may be helpful.
• There might sometimes be an assumption that people already have all the information they need.
• There can be considerable variations in individual experiences of accessing information, depending on location.
• The need for psychological support is very real. Some people could not recall ever being asked how they are coping emotionally during an appointment.
• More information is needed on self-care.

Everyone agreed that wherever you are on the scleroderma journey, it is vital to have reliable information. This should be:

• From a trustworthy source, i.e., SRUK,
• Easy to understand,
• Accessible to everyone.

The groups identified the following key points upon the scleroderma journey when reliable information is needed:

• Diagnosis,
• Treatment and making treatment decisions,
• General information about the patient journey,
• Preparing for an appointment.

Taking what we learned, we worked together to produce some new information materials. It was agreed that the best way to meet the needs identified was to create some information posters with SRUK’s contact details, for display within scleroderma specialist centres. The groups also discussed the need for a new resource to help people get the most from an appointment with a scleroderma specialist.

Our new resources

Based on all the evidence, we have developed a series of three posters, that will be displayed initially within the specialist centres at the Royal Free Hospital in London and at Chapel Allerton in Leeds. The posters have been designed to reassure everyone affected by scleroderma that they are not alone, and that information is available from SRUK. Each poster has its own key theme:

• Diagnosis,
• Treatment,
• The patient information journey.

We have also developed an appointment guide to help people get the most from an appointment with their scleroderma specialist. You can download your copy below.

This project is currently in its pilot phase, and we are hoping that these materials can be made available in more centres soon.

We are very grateful to The Royal Free Hospital in London and the Leeds University Teaching Hospital for their support in this project, and Janssen for their kind support. We would also like to thank the healthcare professionals and members of the SRUK community who took part, without whose support this would not have been possible.