Primary and Community Care Education Group (PCCEG) is a joint programme between the Early Diagnosis and Personalised Care workstreams and one of a number of groups under the Transforming Cancer Services Team (TCST) to improve cancer services. As part of its priority setting, PCCEG identified people with learning disabilities as a specific area in need of improvement and held a virtual workshop, in May, with both cancer and learning disabilities colleagues tasked with developing a set of recommendations and actions for improving this significant health inequality in primary and community care.
All of London Region have been tasked with tackling health inequalities in their areas and this ties in with the Primary Care Network Direct Enhanced Service (PCN DES) requirements for both cancer and learning disabilities. PCCEG reviewed their priority areas with their stakeholders and agreed that learning disabilities should be an area of focus because it is a significant area of health inequality and there’s an opportunity to capitalise on resources through DES and the recent LeDeR data analysis contract (which generates data on people with learning disabilities).
The workshop opened with a patient story outlining the current problems with the pathway for people with learning disabilities, showcased examples of quality improvement projects that had been successful in changing outcomes for people with learning disabilities across the UK and detailed the current resources in data or expertise that can be harnessed for change.
The registered attendees included: patients, carers, cancer and learning disabilities nursing, Improvement and Patient Engagement mangers, care workers and community organisations that work with people with learning disabilities. There were speakers from Aurora-Nexus (community org), Royal College of Nursing, LeDeR, charities, London region learning disabilities team and London Cancer Alliances.
The attendees had two breakout sessions to discussion areas of good practice that should be shared and where there is opportunity to improve. Broad themes pulled from the discussion on improvement were:
• Better quality and coverage of the learning disabilities registration and the Annual Health Check
• Better access to and support for cancer screening for people with learning disabilities
• Improving patient, carer and community staff awareness of signs and symptoms of cancer
• Improving communications about reasonable adjustments
• Central resource of easy read materials for all areas of the pathway