older man talking to a doctorHealthcare Services - Access, Quality And Improving The Care Pathway For Thalidomide Survivors


To explore beneficiaries' experiences of healthcare services in more depth, and to seek ideas for improving the 'pathway of care'.

This is a follow on piece of research from a Health and Wellbeing survey that the Trust carried out. Beneficiaries had raised concerns over access to appropriate healthcare for their thalidomide damage.  In addition the Trust had received a significant number of enquiries for their support in helping beneficiaries obtain healthcare.

What was found

Information from beneficiaries was obtained through a focus group discussion and a number of one-to-one interviews.  Their personal experiences of accessing healthcare were obtained in the following areas:

  • primary care and referral process
  • monitoring, diagnosis and screening
  • treatment and care
  • rehabilitation and convalescence
  • supported self-management

Feedback was then obtained on a key service provided by the Trust - to provide information, advocacy and advice on health and wellbeing issues, so that beneficiaries can maximise their health, independence and quality of life.  Ideas were provided to build and extend this service to improve the pathway of care. The main initiatives were:

  • Health and Wellbeing team
  • Information about thalidomide damage and health
  • Network of specialists
  • Clinical research
  • Peer to peer support

View the full published article here:

Access to Healthcare Services


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