In this chapter we explore how stigma has restricted access to equitable health and social care for people with Tourette’s in the UK. Participants in our study detailed their prolonged and frustrating journeys through the healthcare system, characterised by a lack of recognition from general practitioners (GPs), frequent misdiagnoses, and an absence of specialist care. The findings corroborate existing research from Australia, Canada, and Europe, highlighting inefficiencies in the diagnosis, assessment, and support of Tourette’s Syndrome. Misdiagnoses and delayed diagnoses, exacerbated by GPs’ insufficient knowledge, often led individuals and their families to assume the roles of advocates and educators, navigating a complex healthcare landscape without proper guidance. We also examine the impact of neoliberal policies on the National Health Service (NHS) and social care, emphasising that funding cuts and privatisation have led to inequities in access to essential healthcare, disproportionately affecting those with Tourette’s. Participants noted the unavailability of tailored social care services, with many relying on charities, private care, or complementary and alternative medicine to address unmet needs. Advocacy efforts, such as those by Emma McNally, aim to standardise Tourette’s care across the UK and address the shortage of specialists, yet significant barriers remain. Ultimately, this chapter calls for systemic changes to health and social care policies to promote equity, accessibility, and standardised care pathways for individuals with Tourette’s, recognising that stigma and systemic inequities continue to hinder access to appropriate services.

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Barriers to Care: The Impact of Stigma and Systemic Inequities on Health and Social Care Support for Individuals with Tourette's

  • Melina Aikaterini Malli,
  • Rachel Forrester-Jones

摘要

In this chapter we explore how stigma has restricted access to equitable health and social care for people with Tourette’s in the UK. Participants in our study detailed their prolonged and frustrating journeys through the healthcare system, characterised by a lack of recognition from general practitioners (GPs), frequent misdiagnoses, and an absence of specialist care. The findings corroborate existing research from Australia, Canada, and Europe, highlighting inefficiencies in the diagnosis, assessment, and support of Tourette’s Syndrome. Misdiagnoses and delayed diagnoses, exacerbated by GPs’ insufficient knowledge, often led individuals and their families to assume the roles of advocates and educators, navigating a complex healthcare landscape without proper guidance. We also examine the impact of neoliberal policies on the National Health Service (NHS) and social care, emphasising that funding cuts and privatisation have led to inequities in access to essential healthcare, disproportionately affecting those with Tourette’s. Participants noted the unavailability of tailored social care services, with many relying on charities, private care, or complementary and alternative medicine to address unmet needs. Advocacy efforts, such as those by Emma McNally, aim to standardise Tourette’s care across the UK and address the shortage of specialists, yet significant barriers remain. Ultimately, this chapter calls for systemic changes to health and social care policies to promote equity, accessibility, and standardised care pathways for individuals with Tourette’s, recognising that stigma and systemic inequities continue to hinder access to appropriate services.