Cancer Services and Learning Disability – 27 November 2017

Working together to improve cancer services and experiences for people with a learning disability

Monday 27 November 2017
The Durham Centre

A conference aiming to improve cancer services and experiences for people with a learning disability through sharing learning and resources from the Macmillan learning disability cancer project, sharing experiences of people with learning disabilities and health and social care professionals, and looking at some of the challenges we still face and how we can tackle them together.


Below are resources discussed on the day, the presentations and accompanying materials and links.


‘Don’t miss out’

Mencap and NHS England have a current campaign to try and increase the numbers of people with a learning disability asking to be flagged on GP systems.

Read more.


Improving healthcare access for people with learning disabilities

Guidance for social care staff on how to help people with learning disabilities get better access to medical services to improve their health.

Access guidance.


Film links

Four short films talk about the challenges people face in accessing cancer services:

Yvonne talks about challenges for primary care, supporting a two week wait referral.

Sandra talks about giving support in hospital and the challenges of communication.

Marianne and Brian talk about Brian’s bowel cancer journey.

Tony talks about providing chemotherapy, ensuring information is understood and consent.


Morning presentations (session one)

Best Practice Guidelines – Gateshead People, Sheila, Kirsty, Audrey and Peter

Produced by Gateshead People for the Macmillan learning disability cancer project. These guidelines can be used to support engagement of people with a learning disability. View the Best Practice Guidelines document.

Two Week Wait referrals and patient information – Dr Katie Elliott

Additional resources are on the final slide of the presentation. Access Easy Read Two Week Wait documents.

Bowel screening flagging project – Julie Tucker and Phil Kelly

Full year 1 report for South Tyneside and information helpful for people considering implementing bowel flagging. Read the report.


Morning presentations (session two)

GA diagnostic pathways – Judith Thompson and Kath Jones

Development of a pathway to ensure people who need a general anaesthetic for diagnostics are supported in a timely way, including receiving services from alternative trusts.

‘I’m a patient – get me in here!’ The realities of patient engagement and co-design – Jo Mackintosh, Kirsty Douglas and Roy McLachlan

Information on the patient engagement and co-design project within the Northern Cancer Alliance.

Learning from deaths – Kim Woolnough

Information on the LEDER project and lessons learnt. Link to national LEDER project.


Keynote speech: Reasonable Adjustments for Deborah – Brian Evans

Brian told us about the reasonable adjustments made to ensure Deborah could receive the care and diagnostic tests she required.

View presentation

Link to video used in presentation



Workshop 1: End of Life and Deciding right – Dr Lisa Baker and Louise Watson

My End of Life Booklet – includes instructions for completion on page 1.

End of Life leaflet 1

End of Life leaflet 2

End of Life leaflet 3

End of Life word bank

Workshop 2: Sharing information to improve care – Emma Mullaney and Crispin Hebron

Better Health for People with Learning Disabilities – NDTi

Summary Care Records: A patient leaflet is available – see the SCR website or talk to your GP practice

Workshop 3: Safety Netting – Dr Katie Elliott comments and questions from throughout the day

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