HSP Patient Journey

One of my areas of work* in HSP has now been published. I've been working with friends at EuroHSP to help develop a patient journey for people with HSP for the European Reference Network for Neurological Diseases.

They have been running a project for a while to try and illustrate aspects of neurological diseases. I have been able to use the results of my surveys and conversations with many people who have HSP to try and get the views of those with HSP down.

You can see this here: https://www.ern-rnd.eu/patient-journey-hereditary-spastic-paraplegias-hsps/

The text at the top of this page describes the aim:

Patient Journeys  are info-graphical overviews that visualize patients’ needs in the care of their rare disease. Because Patient Journeys are designed from the patient’s perspective, they allow clinicians to effectively address the needs of rare disease patients.

Patient Journeys consider that patients’ needs may differ at different stages of the disease – e.g., initial symptoms vs. treatment. They also reflect the patients’ personal experiences, which may vary depending on the person, clinic and country.

ERN-RND considers Patient Journeys working documents that patients and clinicians can use together to identify gaps in care and adapt care pathways to better meet the needs of patients living with these conditions. Patient Journeys can therefore be seen as a first step toward systematic patient engagement in the design of care pathways.

In addition, Patient Journeys are a useful resource for patients, families, non-specialist clinicians, and the general public to understand the care needs of patients living with a rare neurological disease.

Each line on the journey covers a different aspect - the disease line gives details about HSP, the clinic line addresses different issues which might be encountered when talking with healthcare and other relevant professionals. The challenges line gives some of the challenges experienced by people with HSP at the moment. The goals line sets out some objectives which clinicians can hope to deliver in combination with people who have HSP.

There is a second sheet of the journey, which uses words to describe in a a little more detail these aspects.

I was quite pleased when talking about the graphics to make sure that we covered walking sticks, walking frames and wheelchairs. The team within the ERN were very accommodating to these ideas.

(*Note - thats work in the task-based sense. This, like my support group work is all voluntary)