Learning Disabilities and Palliative Care:

Building Bridges Supporting Care

A-Z of Resources and Reading Materials

April 2014

Compiled by project leads Allison O’Donnell and Liz Smith

The Prince and Princess of Wales Hospice

Glasgow

0141 429 5599

A

The A-Z of health issues affecting people with learning disabilities

Alzheimer Scotland

Alzheimer’s Society (UK)

For Learning Disabilities and Dementia information sheet.

Acute Service Palliative Care Teams and ACP Nurses

Contact details can be found as above

Anticipatory Care Planning:

  • The Anticipatory Care Calendar

This tool and accompanying education helps practitioners monitor the health of adults with a learning disability on a daily basis improving earlier detection of disease and health issues. A great resource for staff working in supported accommodation.

  • When I Die

End of Life Care Pathways July 2007

Manchester Learning Disability Services

  • My Thinking Ahead and making Plans
  • Devon Partnership NHS Trust. End of Life Care Checklist

.

  • Dying Matters

DVD-We are Living Well but Dying Matters.

This film was produced by Change for Dying Matters and the National End of Life Care Programme. The film encourages us to include people with learning disabilities in discussions around death, dying and bereavement

  • Preferred Priorities for Care (PPC)

This a tool for discussing and recording End of Life Care wishes (EoLC)

B

How to Break Bad News to people with Intellectual Disabilities

This book offers unique and flexible guidelines that can be used by practitioners to ease the process of Breaking Bad News to people with learning disabilities.

The website contains a summary of the information described in Irene Tuffrey-Wijne’s book.

British Institute of Learning Disabilities ( BILD)

Books Beyond Words

St Georges Hospital medical School London SW17

Help people learn about life and how to cope with life's bigger challenges, such as love and relationships,

health, death and crime.

Bereavement and Loss

  • Loss and Learning Disability

Worth Publishing Author Noelle Blackman 2003

  • Understanding Death and Dying (Series) BILD
  • Talking Together About Death-A bereavement pack for people with learning disabilities,their families and carers.

Speechmark Publishing

Authors J Cooley and F McGauran

  • Supporting people with learning disabilities coping with grief and loss. - An easy read booklet . Hreepsime Gulbenkoglu 2007. Scope publication

C

Confidential Inquiry into the Premature Deaths of People with Learning Disabilities

CIPOLD

Copies of the report and some film demonstrating the outcomes of the inquiry.

Independent Inquiry, chaired by Sir Jonathan Michael. Recommended the establishment of the learning disabilities Public Health Observatory and a time limited Confidential Inquiry into premature deaths of people with learning disabilities. Investigated the sequence of events leading to all known deaths of people with learning disabilities aged between 4 years and older over a two year period In 5 Primary Care Trust areas of South West England.

Change

Change in conjunction with Macmillan have produced 3 titles each with an illustrated book for people with learning disabilities and a book for carers under the following titles

Symptoms,Screening and Staying Healthy.

Diagnosis and Treatment

Palliative Care ,End of Life Care and Bereavement.

This is a free resource

Carers

Information for carers

NHS GG&C Communications Aids

The Hospital Communication Book

Working with people who have a learning disability and complex needs.

Learning Disabilities consent and capacity

CANCER

Change and MacMillan

Change in conjunction with Macmillan have produced 3 titles each with an illustrated book for people with learning disabilities and a book for carers under the following titles

Symptoms,Screening and Staying Healthy.

Diagnosis and Treatment

Palliative Care ,End of Life Care and Bereavement.

This is a free resource

  • Living with learning disabilities ,Dying with Cancer. Thirteen Personal Stories.

Jessica Kingsley Publishers

Author Irene Tuffrey-Wijne 2010

  • Research Inequalities in Cancer: Black and Minority Ethnic Communities and People with Learning Disabilities
  • Easy Read Information BILD
  • Access to Cancer Screening in People with LearningDisabilities in the UK: Cohort Study in the HealthImprovement Network, a Primary Care ResearchDatabase
  • NHS Lothian Useful information
  • Case Studies GMC
  • Article:Cancer, Palliative Care and Intellectual Disabilities
  • Meeting the Needs of the Cancer Patient with Learning Disabilities at the Pre-operative Assessment Visit
  • Article Reversing the trend: learning disability outcomes in cancer care
  • Easy Read Cancer information
  • Article: Nursing Times exploring the experiences of people with learning disabilities who are dying with cancer
  • Breast Cancer support -Easy Read
  • Booklet to help women with learning disabilities to understand what breast cancer is and the importance of breast mammography. Making It Happen Partnership Liverpool
  • Caring for people with a learning disability, colorectal cancer and stoma
  • Older people with learning disabilities affected by cancer :Involvement and engagement work to inform a research agenda
  • Inequalities in cancer experienced by those with learning disabilities Cancer Research UK
  • The Royal Marsden Easy Read information

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  • A picture leaflet about bowel cancer screening by and for people with learning disabilities. Bowel Screening UK
  • CANCER Journey information pack for people with learning difficulties
  • Communication Tools and Good Practice Plymouth Hospitals NHS Trust
  • Breast Cancer Information

Capacity and Consent (see legislation section)

  • Seeking Consent: working with people with learning disabilities

Meeting the health needs of people with learning disabilities

. RCN Guidance for nursing staff

D

DNACPR

  • DNACPR Framework for Decision Making
  • DNACPR Form
  • DNACPR Integrated Adult Policy

Dementia

  • Karen Watchman

This website has been developed by Karen Watchman for those interested in finding out more about dementia in people with learning disabilities.

  • Living Well with Dementia

Department of Health dementia strategy

  • Scotland’s National Dementia Strategy 2013-2016
  • Standards of Care for Dementia in Scotland

Action to support the change programme, Scotland’s National Dementia Strategy

June 2011

  • Quality Outcome Measures for People with Dementia

Measuring the quality of outcomes for people with dementia

Faculty for Learning Disabilities

  • Information Pack

Structured dementia information pack for people with learning disabilities and family carers

Dudley Community Services

  • Dementia and People with Learning Disabilities

Guidance on the assessment and diagnosis, treatment and support of people with learning disabilities who develop dementia (Royal College of Psychiatrists)

  • Royal College of Nursing Dementia Information

Dementia information and supporting resources (Royal College of Nursing)

  • Dementia Pathway

(case study on page 15 of report)

Learning disabilities assessment pathway flowchart

  • Living with Dementia

Video about dementia (NHS choices)

  • Home for Good

Preparing to support people with learning disabilities in residential settings when they develop dementia

Joseph Rowntree Foundation

  • Care and Detection Screening

Guidelines for structuring community care and support and early detection screen for dementia

National Taskforce on Intellectual Disabilities and Dementia Practices

  • Tips for Supporting People with Dementia

(case study on page 16 of this report)

  • Explaining about Dementia (Easy Read)

(Cheshire and Wirral Partnership NHS Foundation Trust)

(2gether NHS Foundation Trust and Picture of Health)

  • Information for Carers
  • Journals on Dementia
  • Dementia and People with Learning Disabilities

“Guidance on the assessment, diagnosis, treatment and support of people with learning disabilities who develop dementia.”

The British Psychological Society

Division of Clinical Psychology

Faculty for Learning Disabilities

September 2009

  • Dementia- Quick Reference Guide

“Supporting people with dementia and their carers in health and social care”

National Institute for Health and Clinical Excellence. November 2006

  • “My Thinker’s Not Working”

A National Strategy for Enabling adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports”

Report of the National Task Group on Intellectual Disabilities and Dementia Practices 2012

  • Making Reasonable Adjustments to Dementia Services for People with Learning Disabilities

Improving Health and Lives: Learning Disabilities Observatory

September 2013

  • Summit: Living and Dying Well with Dementia

Report on Themes and Key Messages

Edinburgh Napier University, March 2011

  • The National Task Group on Intellectual Disabilities and Dementia Practices Consensus Recommendations for the Evaluation and Management of Dementia in Adults with Intellectual Disabilities

Diagnosis and Treatment Guidelines

The MAYO Clinic, August 2013

  • Down’s Syndrome and Dementia

Psychological interventions for people with Down’s syndrome and dementia

  • Downs Syndrome Association
  • Downs Syndrome and Dementia Workbook for Staff Written byKaren Dodd,Diana Kerr and Scott Fern. This is a great resource .It is a guide to ensuring that you are offering the most effective care possible as the persons condition progresses and their needs change.
  • Down’s Syndrome and Dementia – Philosophy of Care
  • Down’s Syndrome and Dementia – Forget Me Not
  • Down’s Syndrome and Dementia – Fighting for Andrew
  • Downs Syndrome and Dementia. Practitioners Guide.

Venture press

Author Diana Kerr 1997

  • Down’s syndrome Scotland

Have lots of relevant information on their website and have produced some useful booklets.

What is Dementia?

Lets Talk about Death booklet

Living With Dementia

Keep Talking about Dementia

Coping with Loss leaflet

Its your move leaflet-Downs Syndrome and Dementia health information for G.P’s

Pain in people with Downs Syndrome

  • The Simplicity of Dementia: A Guide for Families and Carers. Written by H Buijissen.

Publisher-Jessica Kingsley

  • British Institute of Learning Disabilities ( BILD)
  • About my friend. For friends of people with Downs syndrome and dementiaWritten by K Dodd Turk and M Christmas
  • The Journey of Life.How people change from babies to older people Written by K Dodd Turk and M Christmas.
  • About dementia for people with learning disabilities. Written by K Dodd Turk and M Christmas.
  • Downs syndrome and dementia resource pack.

Written by K Dodd Turk and M Christmas.

Approach to optimising the care for patients nearing the end of life.

  • Alzheimer Scotland
  • Alzheimer’s Society (UK)
  • Down’s Syndrome and Alzheimer’s Disease

Alzheimer’s Disease – A Guide for Parents and Carers (A Down’s Syndrome Association Publication)

  • Understanding Learning Disability and Dementia. Developing Effective interventions

Jessica Kingsley Publishers London

Author Diana Kerr 2007

  • Supporting Derek. A practice development guide to supporting staff working with people who have a learning disability and dementia.

A DVD and training pack for staff

Joseph Rowantree Foundation

Authors Karen Watchman, Diana Kerr Heather Wilkinson.

  • Scotland’s National Dementia Strategy

Dysphagia

  • Benchmark of Best Practice for Management of Dysphagia. Written by P Boulter, A Lea and L Wilson.

Downs syndrome

  • Downs Syndrome Association
  • Down’s syndrome Scotland

DisDAT

  • DisDAT

DisDAT was devised fro people with severe communication difficulties. Its basis is that distress is the primary observation and having identified distress, the cause has to be determined.

Dying Matters

Film: We are living well but dying matters

This film was produced by Change for Dying Matters and the National End of Life Care Programme. The film encourages us to include people with learning disabilities in discussions around death, dying and bereavement

E

End Of Life Care Checklist

Devon Partnership NHS Trust. End of Life Care Checklist

.

Edmonton Symptom Assessment System (ESAS)

This tool is designed to assist in the assessment of symptoms common in cancer patients. It provides a clinical profile of symptom severity overtime.

Easy Read Information

  • NHS Lothian Useful Resources including signage letters information leaflets
  • Easy Read Information BILD
  • Breast Cancer support -Easy Read
  • National Screening Programmes and Cancer Information
  • Bowel Screening Made Easy
  • Youtube video for Bowel Screening Made Easy
  • Easy Read Cancer information
  • Breast Cancer support -Easy Read
  • Booklet to help women with learning disabilities to understand what breast cancer is and the importance of breast mammography. Making It Happen Partnership Liverpool
  • The Royal Marsden Easy Read information

read.aspx

  • A picture leaflet about bowel cancer screening by and for people with learning disabilities. Bowel Screening UK
  • CANCER Journey information pack for people with learning difficulties
  • Communication Tools and Good Practice Plymouth Hospitals NHS Trust
  • Breast Cancer Information

F

Fair MULTIMEDIA-NHS Lothian

Booklets containing easy read/pictorial information about health. Includes booklets about Palliative Care and Cancer .

Foundation for People with Learning Disabilities

Dying Matters. A workbook on caring for people with learning disabilities who are terminally ill.

Supporting older families: making a real difference

G

The Gold Standards Framework

The Gold Standards Framework (GSF) was developed in 2000 to improve primary palliative care from within palliative care. It is now used in a variety of settings and gives us a systematic evidence based approach to optimising the care for patients nearing the end of life.

GMC

Website of the GMC has a useful section for Doctors and other health professionals on people with a learning disabilities .

St Georges University Hospital London

The Glasgow Depression Scale

Is a tool developed to measure depressive symptoms for people with learning disabilities, it is accompanied by a supplementary scale for carers.

H

Home for Good

As increasing numbers of people with learning disabilities live to an older age, they encounter age related illnesses and conditions such as dementia. These demographic changes create pressure on the planners and providers of learning disability services. Yet despite these trends ,there is still lack of useful information and evidence on how to best provide services that are needs led, multidisciplinary and supportive (Watchman,2003).This document aims to address some of these issues.

Health in Later Years

Health in later years for people with learning disabilities

Health Needs Assessment for People with Learning Disabilities in GG&C

Holistic Assessment

This document provides guidance for holistic assessment of the supportive and palliative care needs of adults requiring end of life care. It sets out the main features of the process- including the who, when, where and how –of holistic common assessment.

Hospital Anxiety and Depression Scale (HADS)

This is a valid and reliable self-rating scale that measures anxiety and depression in both hospital and community settings.

Hospital Admission Booklet for Acute Hospital Admission

Hospices in GG&C Area.

Accord -7 Morton AvenueAve

Paisley

PA2 7BW

0141 581 2000

Ardgowan-12 Nelson Street

Greenock

PA15 ITS

01475 726830

Marie Curie-Balornock Rd

Glasgow

G21 3US

0141 557 7400

Prince and Princess of Wales Hospice

71 Carlton Place

Glasgow

0141 429 5599

St Margaret‘s of Scotland

East Barns Street

Clydebank

West Dunbartonshire

G81 1EG

0141 952 1141

St Vincent’s- Midton Road

Howwood

PA 1AF

01505 705635

I

J

Joseph Rowantree Foundation

The Joseph Rowantree Foundation has produced some great work as they strive to promote equity in the learning disability population. They produced a series of posters and factsheets under the title

“Do you recognise pain in someone with a learning difficulty and dementia?”

Written by Heather Wilkinson, Diana Kerr and Colm Cunningham .The posters highlight symptoms and common causes of pain. There are also factsheets for care staff and carers, a guide for care staff and carers and a guide for G.P’S.

Home for Good

As increasing numbers of people with learning disabilities live to an older age, they encounter age related illnesses and conditions such as dementia. These demographic changes create pressure on the planners and providers of learning disability services. Yet despite these trends ,there is still lack of useful information and evidence on how to best provide services that are needs led, multidisciplinary and supportive (Watchman,2003).This document aims to address some of these issues.

These resources are free to down load from the website.

K

The Karnofsky Performance Scale (KPS)

The Karnofsky Performance Scale Index allows patients to be classified as to their functional impairment. This can be used to compare effectiveness of different therapies and to assess the prognosis of individual patients. The lower the karnofsky score, the worse the survival for most serious illnesses

Key Practitioners

Key Practitioners have been identified; this role is held by learning disability nurses and palliative care nurses selected from their respective teams and hospices.

They meet regularly to develop, skills, knowledge and confidence within a framework of partnership and collaborative working and practitioners have come to realise that they have a shared philosophy of holistic and person centred care .

This concept has ensured that PWLD who have palliative care needs are recognised and better placed to receive more equitable and robust care.

Key Practitioners and Local Hospice and Learning Disability Service Contact Details:

Area / Department / Key Practitioner(s) / Contact Details
Renfrewshire and Parts of East Renfrewshire / Accord Hospice / Pamela Dalrymple (CNS) / Accord Hospice
7 Morton Avenue
Paisley
PA2 7BW
0141 581 2000

Renfrewshire and Surrounding Areas / St Vincent’s Hospice / Maria McAlinden (CNS)
Miriam Leitch (IPU) / St Vincent’s Hospice
Midton Road
Howwood
Johnstone
Renfrewshire
PA9 1AF
01505 705 635


Renfrewshire / Renfrewshire Learning Disability Services (RLDS) / Marie Gormley (CLDN) / RLDS
Renfrew Health and Social Work Centre
10 Ferry Road
Renfrew
PA4 8QH
0141 207 7400

Inverclyde / Ardgowan Hospice / Carol Pyper (IPU)
Maureen Anderson (CNS)
Ros Park (Family Liaison Services) / Ardgowan Hospice
12 Nelson Street
Greenock
PA15 1TS
01475 726830



Inverclyde / Inverclyde Learning Disability Services / Stewart McCorkindale (CLDN) / Inverclyde LDS
128 Cathcart Street
Greenock
Inverclyde
01475 499 053

North East / Marie Curie Hospice / Morag MacDonald (Day Services)
Linda Murray (CNS) / Marie Curie Hospice
Balornock Road
Glasgow
G21 3US
0141 557 7400


North East / North East Learning Disability Services / Marie McTiernan (CLDN) / Stobhill Hospital
CHP Offices
300 Balgrayhill
0141 201 4109

North West / North West Learning Disability Services / Laura Cameron (CLDN) / Drumchapel Hospital
Glenkirk Centre
129 Drumchapel RD

South Side / Prince and Princess of Wales Hospice / Ann Bradley (IPU)
Anna Grady (CNS)
Rosemary McGinley (Healthcare Assistant IPU)
Karen Orr (IPU) / PPWH
71 Carlton Place
Glasgow
G5 9TD
0141 429 5599



East Renfrewshire / East Renfrewshire Learning Disability Services / Sharon McGee (CLDN) / Barrhead Centre
8 Carlibar Road
Barrhead
G78 1BD
0141 577 3967

South East / South East Learning Disability Services / Theresa McCulloch (CLDN) / Carlton Centre
1-7 Coburg St
Glasgow
G5 9JF
0141 276 3242

South West / South Wet Learning Disability Services / Maireadh Pringle (CLDN) / Berryknowes Centre
14 Hallrule Dr
Glasgow
G52 2HH
0141 276 2300

West Dunbartonshire / St Margaret’s of Scotland Hospice / Isabella McCallum (CNS) / St Margaret’s of Scotland Hospice
154 Dumbarton Road
Glasgow
G11 6XE
0141 339 3336

West Dunbartonshire / West Dunbartonshire Learning Disability Services / Annejane Barr (CLDN) / Beardsmore Business Centre
9 Beardsmore Place
Clydebank
0141 562 2325

East Dunbartonshire / East Dunbartonshire Learning Disability Services / Barbara McKenna (CLDN) / Kirkintilloch Health and Care Centre
10 Saramago Street
Kirkintilloch
0141 304 7450

Castlemilk / Castlemilk Learning Disability Services / Karen Mowat (CLDN) / Castlemilk Social Work Dept
10 Ardencraig Place
0141 276 4900

GG&C / Learning Disability Inpatient Services / Mary Differ
Caroline Duff / Claythorn House
Gartnavel Hospital
0141 211 3688

Waterloo Close
Kirkintilloch
0141 776 3243

L