How does it feel for me? Sophia’s story

This report is by Healthwatch Leeds.

This work is part of a wider approach being taken in Leeds to understand people’s experiences as they move around health and care services, called the ‘How does it feel for me?’ programme. As well as the real time journeys that we are following, there are three additional components to the programme: case note reviews, understanding what citywide complaints tell us, and developing a set of metrics (data measures for tracking progress) that will be used to measure joined up health and care services.

The project involves all health and care partners, including representatives from Healthwatch Leeds, Leeds Teaching Hospitals Trust, Leeds Community Healthcare NHS Trust, GP Confederation, Leeds and York Partnership NHS Foundation Trust, Leeds City Council, Carers Leeds, Age UK and St Gemma’s Hospice. It is designed to support them to understand what people’s experiences are like as they move through ‘the system’; identify what is working and what is not; and to think about how they can plan and deliver services better. Increasingly, as health and care services work more and more in partnership, this work will feed into the Integrated Care Partnership for Leeds. 

Sophia is a young woman who has a diagnosis of complex PTSD (Post Traumatic Stress Disorder) which massively affects her day-to-day life. She also struggles with severe migraine episodes, insomnia, and IBS which affect both her physical and mental health.

She wanted to take part in the How does it feel for me? video project as she wanted to be listened to when providing feedback on services. Her experience in the past has sometimes been that she hasn’t been taken seriously when she has tried to give feedback, particularly when she has been in crisis.

Sophia is not her real name. We have used it to protect her identity. We followed Sophia’s journey between April 2022 and April 2023 through a series of audio recorded updates.