Additional Guidance and Resources

A list of COVID19 published guidance and resources shared by NHSE/I can be found here  You can continue to receive updates and link into webinars by joining the national Palliative and End of Life Practioners Network which was set up during the COVID19 pandemic.  Please email Sherree Fagge to join.

National Guidance

NICE Quality Standard Care of Dying Adults in the last days of life Quality Standard (QS144).  Published date: March 2017

NICE Quality Standard End of Life Care for Adults Quality Standard (QS13).  Published 2011, updated 2021

NHS Learning Hub : Ambitions for Palliative and End of Life Care

End of Life Care Strategy 2008 DH

The e-learning programme End of Life Care for All (e-ELCA)

Public Health England’s National End of Life Care Intelligence Network

Treatment And Care Towards The End Of Life – GMC good practice guidance

Regional Documents

NECN Palliative and End of Life Care Guidelines 2016

North East Regional Genetics Screening Guidelines for palliative patients April 2021

Sustainability and Transformation Partnership support tool (Durham, Darlington, Teesside, Hambleton, Richmondshire and Whitby)

Sustainability and Transformation Partnership support tool (Northumberland, Tyne and Wear and North Durham)

Sustainablity and Transformation Partnership support tool (West, North and East Cumbria)

Disease management/clinically specific information

Diabetes UK End of Life Care (March 2018)

End Of Life Care In Advanced Kidney Disease

Heart 2016 – Deactivation of Devices

Operational policy for deactivation/reactivation of implantable cardioverter defibrillator (ICD)

Withdrawal of Assisted Ventilation at the request of a patient with Motor Neurone Disease Guidance for Professionals.  Association for Palliative Medicine of Great Britain and Ireland (November 2015)

Supporting someone with a learning disability

Northumberland Tyne & Wear NHS Foundation Trust have produced an easy read patient information leaflet entitled Advance Decisions and Advance Statements: Making choices about your care and treatment, a copy of which can be found here

Sunderland Learning Disability Services have worked closely with colleagues in palliative care to make sure they share the knowledge and experience…developing information that is easy to understand about becoming poorly and maybe reaching the end of your life.  They have also developed what they call My End of Life Booklet.  Its a good idea to fill this in when you are well so that in the future people who love and care for you will know what you wanted when you are no longer there.  Please follow this link for their information on reaching the end of life.  This is excellent information for people with learning disabilities, their families and all carers.  There are three further leaflets available and also a word bank that aims to explain complicated words.

Marie Curie provides a selection of easy read booklets to support those living with or having an illness they will probably die from.  Please follow this link to find these booklets on their website.

Understanding the patient experience – Margaret’s story

These films aim to provide education and increase awareness, allowing people to think about their individual rolls within health or social care and how and when they offer support to individuals.

We are immensely grateful to Margaret for sharing her story and giving us the opportunity to stop and think about how we can better support and work with people with a learning disability.

These films are aimed at people working within: primary and secondary care, social care and third sector organisations who support individuals with a learning disability.

To view the full length version of Margaret’s story (approximately 11 minutes) please click here.

To view the short version of Margaret’s story (approximately 7 minutes) please click here.