Where Do People With a Learning Disability Go To For Support?

Understand where people with a learning disability get support after a cancer diagnosis. Explore support needs when they are diagnosed and when a close family member/friend is diagnosed. Identify barriers to accessing cancer support services and why many people do not use charities or formal services. Gather lived experiences through interviews and focus groups to shape better pathways. Provide recommendations to reduce inequalities and improve support across the North East and North Cumbria.

Why This Matters

Evidence (NCPES, LeDeR) shows people with a learning disability have a poorer cancer experience, higher rates of avoidable cancer deaths, and shorter survival. Many do not access mainstream cancer charities or formal support routes. People often rely solely on family, creating gaps when families themselves are overwhelmed, uninformed, or unsupported. Poor communication, lack of accessible information, and no clear support pathways increase fear, trauma, and avoidable harm. Children and young people with a learning disability are especially vulnerable and often unnoticed by services during a family member’s cancer journey.

What we did

Co‑designed the project with Cancer Workers (experts with lived experience), the Learning Disability Network, Northern Cancer Alliance, and Northern Cancer Voices.

Delivered interviews and a focus group with 3 people with a learning disability who had cancer

Delivered interviews and a focus group with 6 people with a learning disability whose family member had cancer

Themed and analysed findings using transcripts, notes, and live experience insight.

Gathered experiences about support, information, emotional impact, and unmet needs.

Used easy‑read tools, accessible prompts, and trauma‑informed facilitation.

Outcomes

What we achieved!

Family and friends are the primary or only support system for most people. Very little engagement with Macmillan, Cancer Research UK, Maggie’s, or local support groups. People did not know where to go for help and were rarely signposted. Medical information was often too complex; easy‑read materials were inconsistent or absent. Many young people were unsupported by schools/colleges unless parents initiated this. People frequently took on caring roles (sometimes major medical tasks) without support or guidance. Emotional needs were largely unmet; some described trauma, distress, and in one case, self‑harm linked to witnessing cancer treatment. Hospital‑based staff were often praised, but support outside the hospital was inconsistent and insufficient.