Caring Beyond Words

Co-designing solutions to improve dental access for people with learning disabilities
Dentistry
 

Summary

People with learning (or intellectual) disabilities often have worse oral health than other people. They may also find it harder to get the dental care they need.
This project aims to work closely with people with learning disabilities to understand the problems they face and come up with solutions together.
The team includes researchers, advocates, and professionals from different fields. It also includes a co-researcher, a visual artist, and a creative writer. 
Together, we will create new and creative ways to involve people with learning disabilities, as well as their carers and dental professionals. We want to learn from their experiences and design better ways to support their dental care.

Objectives

  • Build a collaborative and effective team, with LDEngland, co-researchers, research teams, and other stakeholders. 
  • Develop an "engagement in research" system, piloting innovative interventions to capture dental narratives of individuals with intellectual disabilities, using creative research tools to support the design of future program grant work packages 
  • Explore new methods for documenting the experiences of individuals with intellectual disabilities in the research project. 
  • Capture personal narratives of patients with intellectual disabilities and their dentists, focusing on their involvement in decision making during dental care, including their experiences of "seeking and waiting" and "moments of care." 
  • Collaborate with LDEngland and caregivers to analyse the narratives, identifying systemic challenges, misconceptions, and potential interventions.

Many people struggle when it comes to going to the dentist, but for people with intellectual disabilities those challenges are only amplified by their condition.

Until now, there has been very little research exploring what can be done to support patients impacted by such conditions, and the dentists treating them. Our hope would be that, through this project, we can find solutions that improve the patient experience and be incorporated into current and future dental practice. 

Mona NasserProfessor Mona Nasser
Director ²ÝùÊÓƵ Institute of Health and Care Research (PIHR)

Dental concerns are a routine cause of diagnostic overshadowing in people with learning disabilities.

Their presentation of distress is often thought to be related to mental health problems or seizures, leading to them being at risk of being put on psychotropic medication. Perversely, unaddressed dental concerns lead to significant change in physical and psychological wellbeing precipitating crises which should not happen. It also lends itself to difficulty in conducting suitable assessments. Our project explores ways in which we can maybe make inroads to dental assessment and treatment faster and more meaningfully. 

Rohit ShankarProfessor Rohit Shankar
Professor of Neuropsychiatry and Director of CIDER

 

²ÝùÊÓƵ project staff

External collaborators project staff

  • Samantha Clark - Chief Executive, Learning Disability England

    Samantha Clark

    Chief Executive, Learning Disability England; Joint Chief Investigator, Caring Beyond Words
  • Gary Bourlet - Membership and Engagement Lead, Learning Disability England

    Gary Bourley

    Membership and Engagement Lead, Learning Disability England; Co-Researcher, Caring Beyond Words
  • Rachael Hall - Project Manager, Learning Disability England

    Rachael Hall

    Project Manager, Learning Disability England
  • Sarah Lennard

    Sarah Lennard

    Cornwall Intellectual Disability Equitable Research (CIDER) Lead, Cornwall Partnerships NHS Foundation Trust & Honorary University Fellow, ²ÝùÊÓƵ
  • Holly Fraser

    Holly Fraser

    Senior Researcher, Cornwall Intellectual Disabilities Equitable Research, Cornwall Partnerships NHS Foundation Trust
  • Dr Hooman Samani

    Hooman Samani

    Senior Lecturer and Course Leader of Creative Robotics at the University of the Arts London, Creative Computing Institute.
  • Shaimaa Shihab

    Shaimaa Shihab

  • Dr Richard Laugharne

    Dr Richard Laugharne FRCPsych

    Consultant Psychiatrist, Cornwall Partnerships NHS Foundation Trust, Director of Mental Health Research in Cornwall, Deputy Director of CIDER 

Project partners

Funded by

Cornwall Intellectual Disability Equitable Research – CIDER

Formally launched in October 2018 and led by Professor Rohit Shankar, Cornwall Intellectual Disability Equitable Research (CIDER) is a partnership between the ²ÝùÊÓƵ and Cornwall Partnership NHS Foundation Trust (CFT) focusing on epilepsy in people with intellectual disabilities.
Carnewas and Bedruthan Steps in Cornwall at sunset