Living with chronic pain
Using the pain management videos
The video participants discussed topics that covered more than just the Pain Management Team; they all discussed how services across health and care can work better together and be more coordinated.
These videos were commissioned by the Leeds Community Healthcare NHS Trust Pain Management Team to understand people’s experiences better and inform changes that can improve their service. The video participants talked about many aspects of their care, including services such as GPs, mental health, maternity, community health visitors, specialist hospital services and more. We feel like all of these services could benefit from hearing their experiences.
We would like health and care services to use this summary within their teams in conjunction with the videos as a learning and development tool. This summary contains a summary of the participants' discussions in the videos, their recommendations, and things they shared with us that were not included in the videos.
Rameesah
Parveen
Parveen is a mother living with rheumatoid arthritis. She experiences extreme tiredness, swelling in her joints, and pain that affects everyday tasks such as driving and housework. Since having her baby, even small actions like fastening baby clothes have triggered pain in her wrists and thumbs, altering how she shops and plans her day.
Rita
Rita shared her powerful story about how chronic pain has affected her life, relationships and sense of identity. Thirteen years ago, a back injury from gardening turned her active, community-focused life upside down. Rita has tried a wide range of treatments, from spinal cord stimulation and facet joint injections to hydrotherapy and high-dose morphine patches. Most have brought limited or temporary relief, and she often had to find and fund them herself.
Rob
Rob lives with arthritis and fibromyalgia, conditions that have left him spending up to 70% of his time in bed. Daily tasks, such as dressing, cooking, and attending appointments, can be physically and mentally exhausting. He relies on morphine for pain relief, which helps manage symptoms but causes extreme fatigue. His husband plays a vital role as a caregiver, managing not just the household but also appointments, benefit processes, and emotional support.
People living with chronic pain's recommendations to improve services
This video compiles all of the people who spoke to us about their experience of having chronic pain. Together, they answer what improvements in Leeds health and care services they want to see to help them manage their chronic pain.
In this video, we grouped their recommendations into the following categories:
- Empathy and understanding.
- Fair and consistent treatment.
- Coordination between services.
- Mental health and community support.
- Accessibility and flexibility.
- Continuation for treatment and support.
- Support for families, friends and carers.
We would like to thank everyone who participated in these videos for sharing their experiences and helping improve services for others.