Towards a better understanding of NHS secondary and social care backlogs: qualitative perspectives on waiting lists, deferrals and delays by disabled people from minoritised ethnic groups.

Objectives: To explore how backlogs in health and social care were perceived by and impacted disabled people from minoritised ethnic groups, with a view to improving their experiences and social, health and well-being outcomes.

Design: Interview and workshop-based qualitative study as part of a larger mixed-methods study; main analysis is based specifically on the interviews.

Setting: Primary and secondary care in the UK.

Participants: 271 participants aged 18+ with a chronic condition or impairment associated with disability, white British and from several minoritised ethnic groups, resident in the UK for at least 3 months of the pandemic, using quota sampling to ensure the recruitment of different disability-ethnicity combinations. Four 'key informants' or relevant others by virtue of their work (a medical general practitioner (GP), community leader, charity representative, member of parliament).

Main Outcome Measures: Experiences of care backlogs.

Results: Three distinct categories of care backlog left people suffering for months to years, worsening their condition and attitudes to the National Health Service. These were waiting lists for new patient secondary care (including bottlenecks in GP referrals), deferrals (in patient help-seeking or diagnostic appointments) and delays with existing care plans. Within each category, nuances in experiences, such as feelings of being in limbo when waits and delays were undefined, suggested subcategorisations that are helpful for determining future policy. Disability had more effect on experiences than ethnicity, though an intersection with waiting lists and referral models from other countries was reported.

Conclusions: Different types of backlog require different government considerations. Work is needed to restore patient confidence and encourage help-seeking, as well as improving access to general practice, to encourage those people to use healthcare who ceased doing so during the pandemic. Referral processes may need substantial reform to remove GP bottlenecks. There should be more transparency about wait times and the way certain conditions are prioritised for patients on long waiting lists or with cancelled appointments. Neglected specialties such as gynaecology and those currently overloaded such as mental healthcare should receive particular support, and alternative services should be considered.