Groundbreaking roles see Kay and Lindsey help people with learning disabilities know more about cancer

Two women with personal experience of living with a learning disability, and dealing with cancer in their families, are helping to make it easier for people in similar situations know more about the disease.

In groundbreaking roles, Kay Southern and Lindsey Fothergill are the new cancer learning disability project workers at the North East and Cumbria Learning Disability and Autism Network, in partnership with the Northern Cancer Alliance, and with support from Inclusion North.

The aim of Kay and Lindsey's posts - believed to be the first of their kind in the country - is to make things better for people living with a learning disability who experience cancer.

The work is being celebrated this week for Learning Disability Week 2025 which has the theme 'do you see me?'. It is about making sure that people with a learning disability are seen, heard, included, and valued in all aspects of life.

Kay's mum Janice was diagnosed with breast cancer in 2012 and later developed head and neck cancer. 

Kay, 28, from Newcastle, said: "I want to help people understand more about cancer. While it was my mum who had treatment, I want to share my experience of how cancer affects the whole family to support others who are going through the same thing.”

Lindsey, 29, was in high school when her mum Suzie was diagnosed with breast cancer and has lost other family member to the disease.

Lindsey, from North Shields, said: "Due to my family history of cancer, I want to help other people with learning disabilities and autism know more about the disease. This will help them be more involved in discussions because that didn’t happen for me. I also want to help people know where and how to get help if they have any questions."

Kay and Lindsey have already reviewed patient information leaflets and will be exploring where people with a learning disability affected by cancer get help and support.

Julie Tucker, project manager for North East and Cumbria Learning Disability and Autism Network, said: "We’re delighted that Kay and Lindsey have joined our network. Due to their experience and backgrounds, they are ideally placed to help people living with learning disabilities understand more about cancer, and the impact it can have on individuals and families.

"We truly value the contribution they are offering and are excited about the potential it has to improve the lives of people throughout the North East and Cumbria. We look forward to the project going from strength to strength in the future and sharing the learning across the country."

The North East and Cumbria Learning Disability and Autism Network and Northern Cancer Alliance are both hosted by the North East and North Cumbria Integrated Care Board (ICB).