Disability and palliative care

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Easy read resources for people with a disability

Living and dying with dignity (UK)

Published by Mencap (UK) in 2008. This 8 page easy read booklet was part of Mencap’s North Staffordshire Palliative Care Project done in collaboration with Professor Sue Read and others from Keele University. This easy read version of the project report outlines 12 things that help people with a disability to live and die with dignity if they have a life-limiting illness. It is currently not available through Mencap but can be found through the site of Bristol based (UK) organisation Well Aware.

Web: http://www.wellaware.org.uk/uploads/ckeditor/attachments/610/best_practice_guide_easy_read.pdf

Macmillan Cancer Support series of end of life booklets (UK)

The series of ‘End of Life’ branded booklets published by UK based Macmillan Cancer Support were developed by CHANGE, a UK based organisation with a mission to create opportunities for people with learning disabilities to become empowered citizens to succeed, grow and participate equally in society. The CHANGE booklets published in 2016 under the End of Life heading include:

  • Changes that can happen at the end of life
  • Choosing where to die
  • Getting ready to die
  • If you are dying from cancer
  • Making decisions about the future if you are dying
  • Spirituality and religion at the end of life
  • The end of life
  • Thinking about your funeral
  • Who can help if you are dying

In addition to the booklets listed under the End of Life heading, the Macmillan Cancer Support site includes further booklets under headings such as “Being told you have cancer” and “Living with cancer”. There is also a heading “After someone dies” with booklets designed to help people with a disability to understand their feeling and emotions when somebody they know dies. Booklets in this series include:

  • Going to a funeral when someone dies
  • Grief and loss when someone dies
  • How you may feel when someone dies
  • What can help you feel better when someone dies

The entry page for access to all these resources is:

Web: http://www.macmillan.org.uk/information-and-support/resources-and-publications/other-formats/easy-read.html#271926

We’re Living Well but Dying Matters (video/film) (UK)

This 15 minute film was produced by CHANGE for Dying Matters, a coalition of people across England and Wales which aims to help people talk more openly about dying, death and bereavement, and to make plans for the end of life. The film is about including people with learning difficulties in discussions around death, dying and bereavement. It features people with learning disabilities telling their stories and sharing their wishes to support other people with learning disabilities to become more comfortable talking about dying, death and bereavement.

Web: http://www.dyingmatters.org/page/were-living-well-dying-matters

Preparing for your death: a guide for people with learning disabilities and their carers (UK)

Published by FAIR (Family Advice and Information Resource) an information and advice service for people with learning disabilities and carers in Edinburgh, Scotland, in association with Glasgow University and Good Life, Good Death, Good Grief. This nine page booklet covers topics including: What is dying like; Body changes; Planning ahead; How do you tell the people close to you?

Web: http://www.fairadvice.org.uk/userfiles/Preparing%20for%20your%20death.pdf

When I die: the choices that Tony has made for the end of his life (UK)

Developed by Sunderland People First and available from various sources, including the Easyhealth (UK) website of Generate: Opportunities for people with learning difficulties, this 16 page booklet is designed as a proforma for people to use and adapt as a description of a person’s end of life wishes. It includes sections on: A little bit about me; The people who supported me to make my End of Life book; People who are important to me; These are people who I used to know who I would like to see; What I would like to happen to my possessions when I die; This is what I would like to happen at my funeral when I die; These are the plans and policies that I have.

Web: http://www.easyhealth.org.uk/sites/default/files/when_i_die_2_0.pdf

My Information Plan (UK)

Developed by staff from the Sherwood Forest Hospitals Foundation NHS Trust (UK) and Nottinghamshire Community Health NHS Trust (UK) and published on the ‘General Practitioners (GPs) End of life care for adults with a learning disability’ section of the Dying Matters (UK) website. This four page information plan is designed to provide a summary of key information for people with a disability living with a life-limiting illness. It is useful for the person themselves and also for them to give to care providers and medical staff to assist in understanding care needs. It provides space for recording information (or prompts for further information to be provided) on various topics, including: My illness is; Information given to me should be in (tick relevant formats); What is palliative care?; What may happen to my body; Treatments I may need; What to do if I feel poorly; What care I may need at the end of my life; My feelings; My beliefs; Support I may need.

Web: http://www.dyingmatters.org/sites/default/files/user/images/My%20Information%20Plan%20Final%20Document%202.pdf

Traffic light hospital assessment: Important information about me (UK)

This four-page template is designed for people with a disability to take with them when they visit hospital to help inform hospital staff about care needs. It was adapted from the Gloucestershire Learning Disability Partnership Board Traffic Light Hospital Assessment (UK) and is published as part of the My Next Patient has a Learning Disability project of Keele University (UK). The template includes space for information about: My communication (e.g. how you can communicate with me and help me understand); Levels of support (e.g. how I go to the toilet and how you can keep me safe); About my care (e.g. how I eat and drink, how I take medication). Also covered are: What I like? (e.g what makes me happy?) and What I don’t like (e.g. What makes me sad?).

Web: http://www.keele.ac.uk/nursingandmidwifery/mnphald/toolkitcontents/traffic%20light%20assessment.pdf

Health Passport (NZ)

The New Zealand Health Passport (16 page version with pictures) is a booklet designed for people with a disability to carry with them when attending hospitals or other providers of health and disability services. Developed by the Office of the Health and Disability Commissioner, the Health Passport covers topics such as: This is what I want to tell you about myself; My communication; Things to know when providing medical care; Decision-making; Safety; Moving around; Daily activities.

Web: http://www.hdc.org.nz/media/166977/health%20passport%20(pictorial).pdf

My pain profile (UK)

Developed with input from Nottinghamshire Community Health NHS Trust (UK) and published on the ‘General Practitioners (GPs) End of life care for adults with a learning disability’ section of the Dying Matters (UK) website this six page pain profile is designed to provide a summary of key information about pain for people with a disability living with a life-limiting illness. It is useful for the person themselves and also for them to give to care providers and medical staff to assist in understanding care needs. It provides space for recording information (or prompts for further information to be provided) on various topics, including: I may be in pain because; My pain medication; My other medication; The form I take my tablets in is (tick form). Page 3 is headed ‘My Usual Self (when happy and comfortable)’ and is designed to be used as a baseline for the assessment of pain, covering topics such as: My facial expressions; My body language; My vocal sounds. Page 4 is about ‘Things that may help to make me feel more comfortable’. Pages 5 and 6 are for ‘Assessment of my pain’ including: Changes to my facial expressions; Changes to my body language; Changes to my vocal sounds.

http://www.dyingmatters.org/sites/default/files/user/images/pain%20assessment%20tool%20Notts%20final%20doc.pdf

Preferred Priorities of Care (Accessible Version) (UK)

Developed by the Nottinghamshire Healthcare NHS Trust (UK) and Sherwood Forest Hospitals Foundation Trust (UK) this 10 page document (2011) is published on the website of Nottinghamshire’s Learning Disability and Autism Partnership Board (UK). Informed by Lancashire and South Cumbria Cancer Services (UK) ‘Preferred place of care’ document (accessible version adaption by Calderstones NHS Trust). It provides space for recording information on topics such as: My health now; What I want for my future care; Where I want to live and be looked after.

Web: http://www.nottscountypb.org/Libraries/Local/734/Docs/HEALTH/end%20of%20life%20info/PPC%20final%20document.pdf. The document can also be found on the Dying Matters website at http://www.dyingmatters.org/sites/default/files/user/images/PPC%20final%20document.pdf

Am I Going to Die? Beyond Words (UK)

Published in 2009 by Beyond Words (UK), ‘Am I Going to Die?’ is fictional, based on the real life experiences of ten people with learning disabilities. The book draws on what was important for participants when they were ill and dying. Beyond Words also has various other titles of interest, including: When Mum Died; When Dad Died; When Somebody Dies; Getting on with Cancer; Anne has Dementia. Published by Beyond Words (UK). No free download, for sale only.

Web: http://booksbeyondwords.co.uk/bookshop/paperbacks/am-i-going-die?rq=die

Let’s talk about death: a booklet about death and funerals for adults who have a learning disability (UK)

Published by Down’s Syndrome Scotland, this booklet was written to support an adult with a learning disability after someone close to them has died. It includes sections on: WHY do people die?; WHAT HAPPENS when a person dies?; What is a FUNERAL?; THE DAY of the funeral; How do YOU feel? What will HAPPEN? What about the FUTURE?

Web: http://www.dsscotland.org.uk/resources/publications/for-parents-of-adults/

Supporting people with disabilities coping with grief and loss (Aus)

Published in 2007 by the Australian organisation Scope, the aim of this booklet is: to provide people with disabilities and their support people with an overview and an understanding of the grief process; to highlight the range of needs of people with disabilities who may be grieving; to provide effective strategies for supporting people with disabilities in dealing with grief. Topics covered include: Cycle of life; Why do people die?; When people are alive…; When people are dead. The first half of the 36 page booklet is in ‘easy-read’ style for people with a disability. The second half of the booklet has further information for support people. Available for sale from SCOPE or free for download through the the Easyhealth (UK) website of Generate: Opportunities for people with learning difficulties.

Web: http://www.easyhealth.org.uk/sites/default/files/SUPPORTING%20PEOPLE%20WITH%20DISABILITIES%20COPING%20WITH%20GRIEF%20AND%20LOSS.pdf

Palliative care general information (not disability specific)

World Health Organisation (WHO) definition of palliative care

The World Health Organisation (WHO) definition of palliative care includes references to: living as actively as possible until death; dying as a normal process; integrating psychological and spiritual aspects of care; support systems for families/carers during the patients illness and in their own bereavement; applicability early in the course of illness, in conjunction with other therapies. WHO also provides a specific definition of palliative care for children.

Web: http://www.who.int/cancer/palliative/definition/en/

What is palliative care? Palliative Care Australia brochure

This brochure from Palliative Care Australia explains what palliative care is and what it involves, including care for the person with a life-limiting illness, their friends, family and carers.

Web: http://palliativecare.org.au/what-is-palliative-care/

Living, dying and grieving well: a guide to palliative care. Palliative Care Victoria booklet

This Palliative Care Victoria booklet provides information about palliative care for the person diagnosed with a life-limiting illness, as well as their carers, family and friends. The booklet can be accessed from the ‘About palliative care’ section of Palliative Care Victoria’s online library.

Web: http://www.pallcarevic.asn.au/library/for-families-patients/fp-about-palliative-care/

Victorian Government Better Health Channel: Pages on end of life and palliative care services

Better Health Channel is a Victorian Government website providing health and medical information with the aim of helping people understand and manage their health and medical conditions. The Better Health Channel pages on end of life and palliative care include: Palliative care explained; Palliative care at home; Dying and death explained, Palliative care options and services; Accessing a palliative care service; Who’s who in a palliative care team; Support for family and carers.

Web: https://www.betterhealth.vic.gov.au/palliative

North and West Metropolitan Specialist Palliative Services Quickguide (internal site link)

The NW Metro Specialist Palliative Services Quickguide provides an explanation of the different types of specialist palliative care services operating in the north and west metropolitan region of Melbourne, Australia, along with contact details for further information. Published on this site by the North and West Metropolitan Region Palliative Care Consortium.

Web: http://northwestpalliative.com.au/services_quickguide/

Victorian Government Palliative Care Program (Department of Health and Human Services)

The Palliative Care Program pages of the Victorian Government Department of Health and Human Services include details of government policies and strategies relating to end of life and palliative care, including Victoria’s end of life and palliative care framework.

Web: https://www2.health.vic.gov.au/palliative-care

An Outline of Different Cultural Beliefs at the Time of Death

This publication of the Loddon Mallee Regional Palliative Care Consortium is designed to assist healthcare workers to understand the different cultural or religious approaches to death and dying. It notes that “It should not be seen as prescriptive or fully detailing all the intricacies of a given religion or culture, nor is it intended to be a definitive statement indicating how individuals may wish to be treated during or after their death”.

Web: http://lmrpcc.org.au/admin/wp-content/uploads/2011/07/Customs-Beliefs-Death-Dying.pdf

Caresearch: Palliative Care Knowledge Network

CareSearch is an online resource designed to help those needing information and resources about palliative care. The website is run by the Flinders University Centre for Clinical Change and Health Care Research and has been funded by the Australian Government’s Department of Health. There are sections designed specifically for health professionals and others for patients, for carers, and for family and friends.

Web: http://www.caresearch.com.au/Caresearch/Default.aspx

The Palliative Care Bridge

The Palliative Care Bridge is a NSW-statewide palliative care education program coordinated and delivered by the HammondCare consortium, comprising HammondCare, Sacred Heart Health Service and Calvary Healthcare Sydney. The site provides educational videos and resources on various palliative care topics. The site aims to better equip users to gain confidence and specialised knowledge in the delivery of appropriate palliative care to people in need.

Web: http://www.palliativecarebridge.com.au/

Victorian Government guidelines and policies: disability and palliative care

Disability Residential Service Palliative Care guide: End-of-life care for residents of disability residential services

This 2009 guide of the then Victorian Government Department of Human Services (now Health and Human Services) is designed to assist residential staff and their managers to confidently plan and care for a resident at the end of their life. The guide describes the important areas of care to be considered when a person with a disability has been diagnosed with a life-limiting illness. This includes how disability and specialist palliative care staff can work together when required and consideration of the advantages and challenges for people with a disability who may wish to die at home in the residential service.

Web: http://www.dhs.vic.gov.au/about-the-department/documents-and-resources/reports-publications/disability-residential-service-palliative-care-guide

Residential Services Practice Manual (Palliative care section in Chapter 5)

The Residential Services Practice Manual (RSPM) outlines the roles and responsibilities of disability services support staff working in residential services managed by the Victorian Government Department of Health and Human Services. The manual describes best practice approaches to supporting people who live in residential services and applies to department-managed group homes, facility-based respite and residential institutions. Funded community service organisations that provide residential services for people with disabilities may also use the contents of the manual. The manual is provided in separate chapters for download. Palliative care is covered in Chapter 5 of the manual.

Web: http://www.dhs.vic.gov.au/about-the-department/documents-and-resources/reports-publications/residential-services-practice-manual

Victorian Government Palliative Care Program (Department of Health and Human Services)

The Palliative Care Program pages of the Victorian Government Department of Health and Human Services website includes details of government policies and strategies relating to palliative care, including Victoria’s end of life and palliative care framework.

Web: https://www2.health.vic.gov.au/palliative-care

Better Health Channel information on end of life care and palliative care

Better Health Channel is a Victorian Government website providing health and medical information with the aim of helping people understand and manage their health and medical conditions. The Better Health Channel pages on end of life and palliative care include: Palliative care explained; Palliative care at home; Dying and death explained, ‘Palliative care options and services; Accessing a palliative care service; Who’s who in a palliative care team; Support for family and carers.

Web: https://www.betterhealth.vic.gov.au/servicesandsupport/end-of-life-and-palliative-care-services

Victorian Government Department of Health and Human Services: Disability information

The human services section of the website of the Victorian Government Department of Health and Human Services provides a range of information about services for people with a disability. This includes information about National Disability Insurance Scheme (NDIS) and facts sheets about arrangements between the Victorian and Australian governments to ensure, in the context of the NDIS, ongoing access to specialist disability services for people with a disability aged 65 years and older, including people living in state government funded supported accommodation.

Web: http://www.dhs.vic.gov.au/for-service-providers/disability

Victorian Government Office for Disability

The Victorian Government Office for Disability works to implement a coordinated, Victorian Government response to disability. Its aim is to improve the lives of people with a disability and help address barriers to community participation. The Office for Disability web pages include information on: The Victorian State Disability Plan; Promoting positive attitudes and awareness; Participation in social and cultural life; The Victorian Disability Advisory Council.

Web: http://www.dhs.vic.gov.au/about-the-department/our-organisation/organisational-structure/our-groups/office-for-disability

Disability and palliative care guides and resources (Australian)

Dying to Talk Staff Training Toolkit (Community living staff helping people with intellectual disability to understand and prepare for the end of life)

Through an Australian Research Council (ARC) grant coordinated by the Centre for Disability Research and Policy at the University of Sydney, during 2013-16 various organisations and researchers* collaborated on a project known as ‘Dying to Talk: Community living staff helping people with intellectual disability to understand and prepare for the end of life’.

In addition to seminar papers published on the Dying to Talk project page of the Centre for Disability Research and Policy website, and publications in various academic journals, the project has produced:
  • Dying to Talk Staff Training Toolkit (publication awaiting)
  • Dying to Talk DVD (publication awaiting)
  • End of Life Planning Booklet (publication awaiting)

The Dying to Talk Training Toolkit includes many case studies (mostly real stories with names changed) and covers topics including:

  • 10 handy teaching skills
  • Recording plans and decisions
  • What the end of life is
  • Bequeathing (e.g. making a will)
  • Organ donation
  • Advance care planning
  • Care when dying
  • Funeral wishes
  • Loss grief and mourning

The toolkit is designed for disability staff but can also be used with family members, other unpaid caregivers and people with intellectual disability.

The toolkit notes that the staff role is to teach the concepts, not to help make end-of-life decisions, and that individual decisions should be made in the same way as other major life decisions (e.g. with family, as part of an individual plan).

The toolkit’s teaching principles are summarised as
  1. Take advantage of naturally occurring opportunities.
  2. Teach the same concept repeatedly, across different situations, and gradually expand the topic
  3. Use concrete examples where possible to assist understanding
  4. Don’t explain everything at one time. Offer information in small pieces
  5. Do not lecture. Instead ‘talk’ and ‘do’
  6. Use direct, concrete language
  7. Encourage peer teaching
  8. Teach throughout the whole of life, not just in older age
  9. Use questions to check for understanding
  10. Set up situations so the person can listen in
*Researchers and organisations involved in the Dying to Talk project include:

At the time of writing, the Toolkit and associated resources, including the Dying to Talk DVD were awaiting publication. General project information, including updates on publication details for the toolkit and DVD, can be sourced from the Dying to Talk project page of the Centre for Disability Research and Policy website.

Disability Residential Service Palliative Care guide: End-of-life care for residents of disability residential services

This 2009 guide of the then Victorian Government Department of Human Services (now Health and Human Services) is designed to assist residential staff and their managers to confidently plan and care for a resident at the end of their life. The guide describes the important areas of care to be considered when a person with a disability has been diagnosed with a life-limiting illness. This includes how disability and specialist palliative care staff can work together when required and consideration of the advantages and challenges for people with a disability who may wish to die at home in the residential service.

Web: http://www.dhs.vic.gov.au/about-the-department/documents-and-resources/reports-publications/disability-residential-service-palliative-care-guide

Disability and palliative care guides and resources (International)

Consensus Norms for Palliative Care of People with Intellectual Disabilities in Europe

This 2015 ‘white paper’ report from the European Association for Palliative Care (EAPC) was part of a project ‘Palliative care for people with intellectual disabilities: Best practice guidelines and core standards’. The aim of the project was to improve palliative and end of life care for people with an intellectual disability by: Identifying examples of good and promising practice across Europe; Developing consensus guidelines and recommendations for core standards of care, research and education; Publishing the good practice examples and consensus guidelines/standards that will be applicable and influential in Europe and beyond. The Consensus Norms report and other project background can be access via the EAPC’s website page for the project.

Web: http://www.eapcnet.eu/Themes/SpecificGroups/IntellectualDisabilities.aspx

Living and dying with dignity: The best practice guide to end-of-life care for people with a learning disability (UK). Full report.

Published by Mencap (UK) in 2008 by Sue Read and Heather Morris as part of Mencap’s North Staffordshire Palliative Care Project, this report includes chapters on:

  • Persistent challenges to accessing end-of-life care for people with a learning disability
  • Recognising when someone is ill
  • Getting expert help
  • Holistic end-of-life care for people with a learning disability
  • Promoting autonomy and choice
  • End-of-life issues: Preparing for death
  • Coping with loss
  • Challenges to be considered: A proactive approach

The project also produced an 8 page Easy read publication ‘Living and dying with dignity: What is important about caring for someone with a learning disability when they have a life-limiting illness’ (see below and also in our Easy Read section) and a 2 page A6 leaflet summarising the 12 main messages from the report (see below).

The full report is no longer available through the Mencap website but is available through social welfare section of the British Library.

Web: http://socialwelfare.bl.uk/subject-areas/services-client-groups/adults-disabilities/mencap/living08.aspx

Living and dying with dignity (UK). Easy read.

Published by Mencap (UK) in 2008. This 8 page easy read booklet was part of Mencap’s North Staffordshire Palliative Care Project done in collaboration with Professor Sue Read and others from Keele University. This easy read version of the project report outlines 12 things that help people with a disability to live and die with dignity if they have a life-limiting illness. It is currently not available through Mencap but can be found through the site of Bristol based (UK) organisation Well Aware.

Web: http://www.wellaware.org.uk/uploads/ckeditor/attachments/610/best_practice_guide_easy_read.pdf

Living and dying with dignity: the 12 main messages. Ensuring all people with a learning disability receive inclusive end-of-life care services (UK)

This 2 page A6 leaflet provides a summary of the main points of the 2008 Mencap report ‘Living and dying with dignity: The best practice guide to end-of-life care for people with a learning disability’ (see above). The leaflet is published as part of a 2009 toolkit My Next Patient has a Learning Disability project of Keele University (UK) available through the School of Nursing and Midwifery at Keele University.

Web: https://www.keele.ac.uk/nursingandmidwifery/mnphald/toolkitcontents/End.pdf

Palliative Care for People with Learning Disabilities (PCPLD) Network (UK)

The PCPLD Network is a professional association of Hospice UK and its website is funded by Mencap (UK). PCPLD aims to: raise awareness of the palliative care needs of people with learning disabilities; share and promote ‘best practice’; enhance collaboration between all services providers, carers and people with a learning disability.

Web: http://www.pcpld.org/

Improving End of Life Care for People with Learning Disabilities Resource Pack (UK)

This 50 page resource pack published in 2011 was developed as part of a project improving end of life care for people with a learning disability across Nottinghamshire County, Nottingham City and Bassetlaw (UK). It includes sections on: person centred planning at the end of life; the importance of good communication; breaking bad news; pain and symptom management; medication and anticipatory prescribing. It was written at a time when the Liverpool Care Pathway (LCP) was still in operation, so some of the LCP related references will be out of date. The resource pack can be found at the website of Mid Nottinghamshire Clinical Pathways (UK).

Web: http://midnottspathways.nhs.uk/media/1090/learning-disability-end-of-life-resource-pack.pdf

Dying Matters (website section on end of life care for adults with a learning disability for GPs)

The Dying Matters Coalition was set up in 2009 through the National Council for Palliative Care (NCPC). The Coalition’s mission is to help people talk more openly about dying, death and bereavement, and to make plans for the end of life. The Dying Matters website includes a section devoted to assisting GPs with end of life care for adults with a learning disability.

Web: http://www.dyingmatters.org/gp_page/end-life-care-adults-learning-disability

Widening access to palliative care for people with learning disabilities: Guidance and resources for professionals (UK)

Published by Hospice UK in 2013 the aim of this publication is to share some of the thinking, good practice and resources that have been developed throughout learning disability and end of life care services in a form that will be accessible to all practitioners but especially those working in hospice settings.

Web: https://www.hospiceuk.org/what-we-offer/publications?kwrd=learning%20disabilities

Disability and health or ageing issues (general information)

Centre for Developmental Disability Health (CDDHV)

A joint initiative of Monash University and the University of Melbourne, the Victorian Government funded CDDHV aims to improve health outcomes for people with developmental disabilities by working with mainstream healthcare providers to build professional level understanding in relation to the health and healthcare issues of people with disabilities. The CDDHV site includes access to various resources and information products.

http://www.cddh.monash.org/index.html


Hospital Care for People with a Disability: A Quick Reference Guide

The Centre for Developmental Disability Health (CDDHV) worked with Victorian based NGO Moira Disability and Youth Services to produce this guide which was published in 2001. The guide is designed to highlight some of the issues around planning for an admission, the admission itself and discharge from hospital. The booklet is available in hard copy from CDDHV for a small charge to cover postage and handling, or free for download online.

http://www.cddh.monash.org/assets/hospital-care.pdf


Hospitalisation of people living in disability support accommodation services: A guide for hospital staff and disability support workers

This 24 page booklet was published by the then Victorian Department of Human Services (now Department of Health and Human Services) in 2012.

http://www.dhs.vic.gov.au/__data/assets/pdf_file/0011/734780/3_hospitalisation-of-people-with-disability-a-guide.pdf


Support for older people with intellectual disability in group homes: A manual for group home staff

This 173 page manual was authored by staff from the University of Wisconsin-Madison (USA), School of Nursing, Madison, prepared with input from Australian based staff of La Trobe University (Dr Christine Bigby) and Australian Catholic University (Dr Ruth Webber). The project was funded through the Australian Research Council (ARC) Linkage Program, with project partners including Catholic Homes, Gill Family Foundation, National Disability Services Victoria, Office of the Public Advocate (Vic), St John of God Health Care and Wesley Mission Melbourne. There is also a separate 44 page Manager’s Guide.

http://arrow.latrobe.edu.au:8080/vital/access/manager/Repository/latrobe:34115


My Next Patient Has a Learning Disability: A Toolkit for Supporting People with Learning Disabilities (UK)

This 2009 toolkit was developed by a group chaired by Dr Sue Read of Keele University in the UK and is available through the University’s School of Nursing and Midwifery.

https://www.keele.ac.uk/nursingandmidwifery/mnphald/


British Institute of Learning Disabilities (BILD) Ageing Well Project

The BILD Ageing Well Project includes a range of free resources, including a 40 page toolkit ‘Supporting older people with learning disabilities: a toolkit for health and social care commissioners’. The toolkit includes chapters on ‘support with health’ and ‘support with the end of life’.

http://www.bild.org.uk/information/ageingwell/

Communication, difficult conversations and planning ahead

Breaking Bad News

A UK based website providing information about how to support someone with an intellectual disability in ‘bad news’ situations. Includes guidelines that can be used by practitioners, families and carers to ease the process of breaking bad news to people with intellectual disabilities.

http://www.breakingbadnews.org/


We’re Living Well but Dying Matters (video/film)

This 15 minute film, produced by CHANGE for Dying Matters and the National End of Life Care Programme (UK), is about including people with learning difficulties in discussions around death, dying and bereavement. It features people with learning disabilities telling their stories and sharing their wishes to support other people with learning disabilities to become more comfortable talking about dying, death and bereavement.

http://www.dyingmatters.org/page/were-living-well-dying-matters


Disability Distress Assessment Tool (DisDAT)

The Disability Distress Assessment Tool (DisDAT) was developed by a combined learning disability and palliative care team at Northgate Hospital in Northumberland, UK. It is a tool to help identify distress in people who because of cognitive impairment or physical illness have severely limited communication. It also documents a person’s usual content cues, thus enabling distress cues to be identified more clearly. DisDAT is designed for use by both lay and professional carers. It is available free from the website of St Oswald’s Hospice.

http://www.stoswaldsuk.org/how-we-help/we-educate/resources/disdat.aspx


Abbey Pain Scale

The Abbey Pain Scale is an instrument designed to assist in the assessment of pain in patients who are unable to clearly articulate their needs. Author Jenny Abbey noted in 2007 that the Abbey Pain Scale is best used as part of an overall pain management plan.

http://www.bcf.nhs.uk/docs/19354_8582738196.pdf


My Next Patient Has a Learning Disability: A Toolkit for Supporting People with Learning Disabilities (UK)

This 2009 toolkit was developed by a group chaired by Dr Sue Read of Keele University in the UK and is available through the University’s School of Nursing and Midwifery. In addition to general communication tips and tools for health professionals working with people with a learning disability, the toolkit includes a summary of the main points of the 2008 Mencap report ‘Living and dying with dignity: The best practice guide to end-of-life care for people with a learning disability’.

https://www.keele.ac.uk/nursingandmidwifery/mnphald/


Living and dying with dignity: What is important about caring for someone with a learning disability when they have a life-limiting illness (Easy read)

Published by Mencap (UK) in 2008, this 8 page easy read booklet was part of the North Staffordshire Palliative Care Project that produced the 78 page report ‘Living and dying with dignity: The best practice guide to end-of-life care for people with a learning disability’ Both the easy read and full report are currently not available through the Mencap website but are available here on our site as PDF documents with Mencap’s permission.

Living and dying with dignity Easy read version Mencap 2008.pdf


Preparing for your death: a guide for people with learning disabilities and their carers (Easy read)

Published by FAIR (Family Advice and Information Resource) an information and advice service for people with learning disabilities and carers in Edinburgh, Scotland.

http://www.fairadvice.org.uk/userfiles/Preparing%20for%20your%20death.pdf


When I die: the choices that Tony has made for the end of his life (Easy read)

Developed by Sunderland People First and available from various sources, including the Easyhealth (UK) website of Generate Opportunities Ltd

http://www.easyhealth.org.uk/sites/default/files/when_i_die_2_0.pdf


My Information Plan (Easy read)

Published on the ‘End of life care for adults with a learning disability’ section of the Dying Matters (UK) website.

http://www.dyingmatters.org/sites/default/files/user/images/My%20Information%20Plan%20Final%20Document%202.pdf


My pain profile (Easy read)

Published on the ‘End of life care for adults with a learning disability’ section of the Dying Matters (UK) website.

http://www.dyingmatters.org/sites/default/files/user/images/pain%20assessment%20tool%20Notts%20final%20doc.pdf


My End of Life Plan (Easy read)

Developed by the Nottinghamshire Healthcare NHS Trust (UK) and Sherwood Forest Hospitals Foundation Trust (UK) and published on the website of Nottinghamshire’s Learning Disability and Autism Partnership Board (UK)

http://www.nottscountypb.org/Libraries/Local/734/Docs/HEALTH/end%20of%20life%20info/My%20End%20of%20Life%20Plan%202.pdf


Preferred Priorities of Care (Accessible Version) (Easy read)

Developed by the Nottinghamshire Healthcare NHS Trust (UK) and Sherwood Forest Hospitals Foundation Trust (UK) this 10 page document (2011) is published on the website of Nottinghamshire’s Learning Disability and Autism Partnership Board (UK). Informed by Lancashire and South Cumbria Cancer Services (UK) ‘Preferred place of care’ document (accessible version adaption by Calderstones NHS Trust)

http://www.nottscountypb.org/Libraries/Local/734/Docs/HEALTH/end%20of%20life%20info/PPC%20final%20document.pdf

Note: The same Preferred Priorities of Care document (Accessible Version) can be found on various other sites, including Dying Matters (UK) at http://www.dyingmatters.org/sites/default/files/user/images/PPC%20final%20document.pdf. The original 19 page Lancashire and South Cumbria Cancer Services ‘Preferred place of care’ document (Accessible Version) can be found at: http://www.cheshire-epaige.nhs.uk/ePaige%20Documents/PPC%20accessible%20version.pdf


Am I Going to Die? (Easy read)

Published by Beyond Words (UK). No free download, for sale only.

http://booksbeyondwords.co.uk/bookshop/paperbacks/am-i-going-die?rq=die

Beyond Words also has various other titles of interest, including: When Mum Died; When Dad Died; When Somebody Dies; Getting on with Cancer; Anne has Dementia.

Loss and Grief

Supporting people with disabilities coping with grief and loss (includes easy-read section)

Published in 2007 by the Australian organisation SCOPE, the aim of this booklet is to: provide people with disabilities and their support people with an overview and an understanding of the grief process; to highlight the range of needs of people with disabilities who may be grieving; to provide effective strategies for supporting people with disabilities in dealing with grief. The first half of the 36 page booklet is in ‘easy-read’ style for people with a disability. The second half of the booklet has further information for support people. Available for sale from SCOPE or free for download through the Easyhealth (UK) website of Generate Opportunities Ltd.

http://www.easyhealth.org.uk/sites/default/files/SUPPORTING%20PEOPLE%20WITH%20DISABILITIES%20COPING%20WITH%20GRIEF%20AND%20LOSS.pdf


When someone has died: advice for those who are left behind. A guide for people with learning disabilities and their carers (Easy read)

Published by FAIR (Family Advice and Information Resource) an information and advice service for people with learning disabilities and carers in Edinburgh, Scotland.

http://www.fairadvice.org.uk/userfiles/When%20someone%20has%20died.pdf


The Geese and the Peanut Butter Chocolate Ice Cream: The Grieving Gifts to the Lexington Street Community. A Resource to Help Individuals with Developmental Disabilities and People Who Support Them Grieve the Death of Loved Ones

Written by Melody Steinman and illustrated by Pat Schosser, this resource (2006) of The Elizabeth M Boggs Center on Developmental Disabilities (New Jersey USA) was designed for family members and people who support individuals with developmental disabilities. It describes the responses of staff, family, neighbors and individuals in a group home after a sudden death of an individual with a developmental disability.

http://rwjms.rutgers.edu/boggscenter/products/documents/GRIEFRESOURCE.pdf

Other links and resources (Content to come)

More content pending