Skip to main content
Health

Improving care for lesbian, gay, bisexual and/or trans (LGBT+) people facing advanced illness: from patient experience to policy

Aims

Work package 1

Patient experience is central to healthcare quality and better patient experience is associated with improved patient safety and clinical effectiveness. Measuring patient experience is a core initiative in NHS quality improvement projects. Patient reported experience measures (PREMs) are tools designed to measure patient experience.  They can be broad, or focus on specific aspects of care.  There is no measure currently available to measure whether care is LGBT+ inclusive.

Our aim is to develop a PREM of LGBT+ inclusive care (ACCESSCare-PREM) following the Picker Institute Methods. 

Work Package 2

NHS England’s Integrated Care Systems (ICSs) lead on funding and planning health services in their region, and are designed to improve the public’s health and wellbeing and reduce disparities. LGBT+ people experience discrimination, reduced access to services and increased burden of certain life-limiting illnesses. Each ICS has a published strategy.

The aim of Work Package 2 is to examine how the LGBT+ communities and their needs are framed within NHS England ICSs strategies.

This project is part of the 'Communities' cluster within King’s Better Health & Care Futures.

Methods

For Work Package 1, a systematic review will be conducted to identify potential candidate measures. Any measure identified will be analysed informed by the eight domains of the NHS Patient Experience Framework (PEF):

  • Respect for patient-centred values; Co-ordination/integration of care
  • Information/communication
  • Physical comfort
  • Emotional support
  • Welcoming the involvement of family/friends
  • Transition/continuity
  • Access to care

Each measure will be assessed as to whether it is appropriate for the UK NHS setting, could be modified, or should be excluded. We will then conduct a secondary framework analysis of interviews with LGBT+ people (ACCESSCare studies) informed by the NHS PEF to identify priority items for inclusion in the PREM and ensure face and content validity. We will hold a PREM development meeting with LGBT+ community members to review these findings and develop the new pilot PREM ready for further testing. 

For Work Package 2, we will identify the 42 ICS strategies and conduct a critical discourse analysis of them to examine whether and how the needs of the LGBT+ communities are prioritised, and how LGBT+ people are described, framed and characterised within these documents at a micro, macro and meso level. This approach has particular utility when exploring issues of equity and power. 

Impact and Outputs

As part of Work Package 1, we will produce a pilot PREM, peer reviewed journal articles and conference presentations.

As part of Work Package 2, we will produce guidance on inclusive language in policy documents, peer reviewed journal article and conference presentations.

Linked Projects

This work is part of the ACCESSCare programme of studies to improve care for LGBT+ people facing serious or advanced illness, or bereavement

Keywords

LGBTQ+PATIENT EXPERIENCEHEALTHCARECOMMUNITIES