The Perfect Patient Information Journey in Scleroderma

Scleroderma can be complex and unpredictable, affecting people in many different ways. But what might the scleroderma journey look like? And why is it so important to find out? Working with the Patient information Forum, SRUK has identified this journey and created some new information resources for everyone affected by scleroderma. These materials are designed to reassure people they are not alone, and to help them access reliable information.

A scleroderma diagnosis may be the start of a journey that is ever-changing and takes you in multiple directions. 

Although each individual experience is different, there is one thing that everyone has in common: it is essential to have access to reliable information relating to your own situation, at the time when you need it. SRUK has developed some new scleroderma information resources for display in scleroderma centres, to help ensure that people can easily find the right information at the right time.

Why is the patient journey important?

Understanding the scleroderma patient journey is vital for SRUK in continuing to develop information and support services that are tailored to the needs of our community. Although it often involves key events such as diagnosis, treatment decisions, new symptoms, lifestyle changes and self-care, this journey is always unique to the individual, with no two cases ever the same.

The project to identify the Perfect Patient Information Journey in Scleroderma

In 2021, SRUK partnered with the Patient Information Forum, to develop a project to identify the Perfect Patient Information Journey in Scleroderma. With support from Janssen, we explored what a person’s scleroderma journey might look like, and identified certain points where someone is likely to need specific information, e.g., about a particular treatment. The final step was to develop some new resources to fill these gaps, so that everyone can quickly and easily access the information they need, whatever their situation.

About the project

We began by gathering information to understand how best to meet the needs of our community. We held a series of workshops plus an interactive webinar, with members of the SRUK community alongside leading healthcare professionals. Everyone agreed that wherever you are on the journey, it is always vital to have reliable information. This should be:

  • From a trustworthy source such as SRUK,
  • Easy to understand,
  • Accessible to everyone.

The sessions revealed a patient journey that can be complex and uncertain for many people. Some of the key finding included:

  • If someone has never been in this situation before, early appointments can be quite daunting, therefore some appointment information may be helpful.
  • There could 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 also agreed that information should come from a trustworthy source and highlighted the need to promote SRUK and how to connect with us.

  • Some of the healthcare professionals placed more emphasis on the need for information around referral and treatments.
  • On the other hand, many community members prioritised coping with the grief of diagnosis and emotional wellbeing. 

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,
  • Emotional wellbeing,
  • Symptom flare and organ involvement,
  • Preparing for your consultation.

Bridging the gaps with new information

Taking what we learned, we then worked together to produce some new information materials designed to fill the gaps identified.

We agreed that the best way to meet these information needs was by introducing some new posters into scleroderma care centres. The initial three posters are designed to provide key information about SRUK in relation to some key events on the patient journey, along with how to contact us. The project also identified the need for a new resource to help people make the most of an appointment with a scleroderma specialist, therefore a new leaflet has been produced.

For the initial pilot of these exciting new resources, we have partnered with two leading scleroderma centres of excellence, at the Royal Free Hospital in London and Leeds Teaching Hospitals.

We have developed three posters that are now on display within our partner centres. Each poster is focussed upon a different area of priority that we have identified:

  • Information for someone who is newly-diagnosed,
  • information on treatments and making treatment decisions,
  • The patient information journey, showing some of the key points when information is required, along with how to connect with SRUK.

We have also created an appointment planner, with useful information about getting the most out of your specialist appointment. This will be given to individuals attending appointments at the centres involved in the pilot.

We are very grateful to our partner centres for displaying our posters and offering copies of the appointment planner to patients. This pilot phase will run for six months, after which we hope to be able to display the posters in more scleroderma centres.

If you happen to be at the Royal Free or in Leeds, please let us know if you have seen our posters! You can also download these below.

You can also download a copy of the appointment planner before your next appointment. As ever, we would be really grateful to know what you think of the planner and if you found it helpful.

We would like to thank The Royal Free Hospital in London and the Leeds University Teaching Hospital for their support in this project. 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.