Appendix 6 - Carer and professional resources

Resource name	Resource details	Resource link
Advance Care Planning - Gold Standards Framework	Advance Care Planning in 5 simple steps video and Thinking Ahead Tool.	Click here
Advance Care Planning	This document has been co-produced by 28 national organisations, designed to support care planning conversations, and achieve outcomes.	Click here
Gold Standards Framework Prognostic Identification Guidance	This tool outlines the potential indicators that long term life limiting diseases are progressing into the later stages. It’s a clinical tool used by doctors and nurses.	Click here
Deaths Mortality Review Report	Here is the latest Learning From Deaths Mortality Review Report.	Click here
No Barriers Here	This is a co-produced project to improve advance care planning and access to palliative and end of life care for people with learning disabilities.	Click here
Palliative Care for People with Learning Disabilities	Website with a variety of really good resource links and webinars	Click here
PoHwer	POhWER is a UK charity that provides free, independent advocacy and support to help people—especially those who are vulnerable or disadvantaged—have their voices heard in health, social care, and legal decisions.	Click here
Professor Irene Tuffrey-Wijne – Professor of Intellectual Disabilities and End of Life	Irene provides information on research, projects, publications, and links to resources.	Click here
ReSPECT	ReSPECT is short for a Recommended Summary Plan for Emergency Care and Treatment. In Hertfordshire the ReSPECT form is a way to ensure all conversations about aspects of end of life care are recorded in one place.	Click here
ReSPECT Good Practice Guidance	This document which has been approved by the Hertfordshire & West Essex ICB and the Hertfordshire County Council Safeguarding Adults Board, has been developed to support the completion of ReSPECT documents for people with learning disabilities.	Click here
RESTORE2	It can be difficult for people with learning disabilities to let you know if they are feeling unwell, and harder to recognise health deterioration. This HNS video explains the benefit of care providers being proactive in monitoring health to pick up on subtle changes. The Health Improvement and Prevention Nurses in the Community Learning Disability Nursing service can provide RESTORE2 training. If you wish to know more contact them on hipld.team@hertfordshire.gov.uk	Click here

Appendix 6 – Carer and professional resources