How does it feel for me? Emma and Adam's story summary report
Download (PDF 550.73 KB)Summary of report content
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. This report details the experiences of Emma and Adam, a young couple from Wetherby. Emma is autistic and has mental health conditions, including a diagnosis of depression with episodes of psychosis. Adam is Emma’s main carer and support. Healthwatch Leeds followed their journey between June 2021 and June 2022, in a series of filmed Zoom updates.
Some of the key themes are the below.
- Communication. A recurring theme for Emma is the importance of having good information prior to an appointment, so she understands what will happen and can prepare for it. On a number of occasions, this doesn’t happen, leaving Emma feeling confused.
- Compassion. Throughout the recorded journey, Healthwatch Leeds noted a change in how Emma and Adam feel treated. There is a sense in the later recordings that Emma feels more seen and cared for than in some of her previous experiences.
- Coordination. Emma and Adam live on the border of Leeds and Harrogate. This creates challenges around coordination and information sharing between services delivered by different NHS Trusts.
- Interplay of physical and mental health and neurodivergence. The combination of Autism and mental health problems means it can be harder for Emma to get the right services, particularly in a more rural setting, and highlights some of the health inequalities experienced by those who are not neurotypical.
- Family carers. The role and impact of looking after someone with mental health problems, as Adam does, is often not understood.
- Geographical access. Navigating and finding the right services to access can be a challenge for Emma and Adam mainly due to where they live. Living in Wetherby makes it more difficult to access Mental Health and Autism Services because it may be paid for by one area but delivered by a provider in another area. Sometimes services are recommended by care coordinators but are too far away and become a barrier to access.
- On the whole, Emma has had positive experiences of accessing appointments by phone or video call and can also see the advantages of it in terms of accessing appointments sooner.