Personal Support
Maintaining Our Dignity & Independence
The Thalidomide Society
See how personal support has been shaped by lived experience.
The Personal Support Project brought together Thalidomiders and their families to better understand care needs, the employment of Personal Assistants (PAs), Direct Payments, and how dignity can be maintained through good practice, shared learning, and lived experience.
Through case studies, community sessions, and professional advice on funding and personal support, the project captured valuable insights that continue to support Thalidomiders and their families, informing better practice and more dignified support across the Thalidomide community.
Our Objectives
The Society strives to provide insight and information to anyone seeking to understand the history of thalidomide, contributes to ongoing research and archival material on the drug and supports projects which aim to ensure the impact of thalidomide is never forgotten.
Supporting independence and managing change
A clear, reassuring guide to staying independent and navigating life’s changes. It offers practical tips on accepting help, working with Personal Assistants or care agencies, and planning with confidence, to support you in living the life you choose.
For more information Download PDF
How can I fund my support
This help sheet gives a clear, practical overview of how Direct Payments work and what your rights are. It explains the different ways you can arrange support, how to prepare for assessments and reviews, and what councils must consider. It aims to help you feel informed, confident, and in control when organising the care that keeps you safe, independent, and living the life you choose.
For more information watch Part 1 and 2 of the recordings How can I fund my support part 1, How can I fund my support part 2 or, Download PDF
What are my options for support
Guide to getting support through an agency or your own Personal Assistants, with advice on good care, what to watch for, and making choices that suit your life and independence.
Poppy’s story shows how Supported Living can build confidence, independence and community connection, with support shaped around the person’s needs and routines.
Poppy’s case study – Live in support Download PDF
For more information Download PDF
Self-assessment help sheet
This short self-assessment guide is designed to help you pause, reflect, and recognise how your independence, daily routines, and support needs may be changing. It can help you identify what is working well, where extra support may be useful, and what steps could help you stay in control and plan confidently for the future.
For more information Download PDF
Employing a PA Best Practice
Thinking of employing a Personal Assistant? This Zoom session explains your key responsibilities before recruiting care, support or help with daily tasks.
Led by an Independent Living Advisor, it covers payroll, insurance, contracts, training, safety, working relationships and record keeping.
Click the PDF for the full help sheet and checklist.
For more information Download PDF