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For partners, parents & carers

When CES affects one person, it touches the whole family.

Partners, spouses, parents, children, siblings, friends and carers are often deeply impacted as they adjust to the emotional, physical and practical changes CES can bring. We’re here for you too.

Understanding the impact

Many family members find themselves taking on new responsibilities — providing emotional support, attending appointments, managing medications, helping with personal care, assisting with mobility, and advocating for their loved one. Living alongside someone with CES can mean witnessing:

  • Chronic pain
  • Reduced mobility
  • Bladder and bowel difficulties
  • Fatigue
  • Mental health struggles
  • Loss of independence
  • Changes in employment or finances
  • Frustration, grief or anxiety about the future

It’s natural for carers and family members to feel stress, worry, exhaustion, guilt, frustration or helplessness. Those feelings are valid — and support is available.

Information and guidance

Having a better understanding of the condition can help families feel more confident supporting their loved one — while also looking after their own wellbeing. We provide accessible information on what CES is, its long-term effects, recovery and rehabilitation, bladder and bowel management, pain and fatigue, mental health, supporting someone through treatment, benefits, employment and accessing community services.

Emotional support for families

Caring for someone with a life-changing condition is emotionally demanding. Many carers put their own needs last, and over time that can lead to stress, burnout and loneliness. Our community offers a safe, understanding space where family members and carers can share their experiences, connect with others in similar situations, ask questions, seek reassurance, and feel heard.

Practical support & signposting

We can help signpost families and carers to services that may provide additional support, including:

  • Carers' organisations
  • Mental health services
  • Financial and benefits advice
  • Respite and wellbeing services
  • Social care support
  • Community resources
  • Specialist charities and support groups

Coming soon

A dedicated Family & Carers Hub

We’re building a dedicated space with downloadable guides, carers’ wellbeing resources, family support meetings, and a private carers-only support group.

When one person is affected by CES, the whole family is impacted — and nobody should have to carry that burden alone.