Guidance and Resources
National Guidance
Ambitions for Palliative and End of Life Care: A national framework for local action 2015 – 2020
End of Life Care Strategy 2008 DH
Leadership Alliance for the Care of Dying People Published June 2014: One Chance to Get It Right
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
Caring for the dying patient
1 Title Page Contact Information – 2015
1 Title Page Contact Information – 2015 – Word Document available for adjusting to local needs
4 Daily Reassessment – 2015 – Word Document available for adjusting to local needs
NESCN COMMUNITY DRUG CHART v2 2019 (3)
Caring for the dying patient guidance v2 Sept 2018 NB: this form may be used as an A4 double sided or A5 folded document and may be adjusted for local use.
Additional Supportive Resources – Caring for the Dying Patient
Supplementary documentation to support the Regional Caring for the Dying Patient document
When Someone is Dying Leaflet – information leaflet
24 hr communication record_ patient/carer
Care Plan Accountability for the Dying Patient
Directory of Specialist Palliative Care Facilities June 2017
Programme for the delivery of Deciding Right across North Cumbria and North East of England January
Deciding right and caring for the Dying Patient: a regional review of use. August 2018:
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)
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
This film and resource pack 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.
This film and resource pack are aimed at people working within: primary and secondary care, social care and third sector organisations who support individuals with a learning disability.
If you are viewing the film independently we ask you to look at the learning points within the Margaret’s story resource pack. The resource pack also includes a session plan, so the film can be shared as part of a team meeting or education event. To access a copy of the resource pack, please click here.
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.