Health

Health, when you have ‘good health’ it is very easy to take it for granted. It is well-known that people with a learning disability face greater and more complicated complex health challenges than those who do not who have a learning disability. People face discrimination, inequality of access and ‘diagnostic overshadowing’, these challenges are compounded for individuals who have a profound and multiple learning/intellectual disability (PMLD/PMID).

I hope these resources will help you when supporting people to achieve their optimum health. I have included a range of resources such as screening tools, assessment tools, examples of good practice guides, health passport, hospital checklist and examples of good communication.

• If you have resources you want us to share, then please let me know.
• If any of the links do not work, then let me know that too.

I wish you ‘good health’.

People with PMLD/PMID are likely to experience additional problems with: posture and mobility, dysphagia, respiration, epilepsy, pain/discomfort, communication, hearing, vision, mental health, continence support, dental and oral hygiene and care, nutrition and hydration, access to cancer screening and being dependent on technology for their health. Raising Our Sights - Health 'How-to' guide (Jillian Pawlyn/ Mencap) Raising Our Sights - Clinical Procedures 'How-to' guide (Jeanne Carlin/ Mencap) Health Frequently Asked Questions (FAQs) (Mencap) Health Guides (Mencap)Getting it Right Charter (Mencap)

Annual Health Check:

• Learning disabilities: Annual Health Checks (NHS Choices)
• About having an annual health check (Mencap easy read guide)
• Cardiff Health Check for People with a Learning Disability
• A Step by Step Guide for GP Practices: Annual Health Checks for People with a Learning Disability.(Dr Matt Hoghton and the RCGP Learning Disabilities Group)

Health action plans:

• What is a health action plan? (Mencap easy read guide)
• Health action plans what are they? how do you get one? A booklet for people with learning disabilities - This booklet tells you more about Health Action Plans and how to get one. (Department of Health)
• Example Personal Health Profile (Oxleas NHS Trust)
• Example Health Action Plan (HAP) available from the EasyHealth website
• Examples Health Action Planning Made Easy (Surrey Health Action)

Posture and mobility:

• Information about postural care (Simple stuff works)
• Postural Care Pathway (Nationalelfservice)
• Postural care resources (Simple stuff works)
• Postural Care guide (Pamis)
• Protecting and restoring body shape (Mencap and Postural Care Action Group )
• Postural Management (Complexneeds)
• Chapter 17 Mobility, Posture and Comfort (Sarah Hill and Liz Goldsmith). In: Profound Intellectual and Multiple Disabilities: Nursing Complex Needs - Jillian Pawlyn, Steven Carnaby.

Dysphagia/Swallowing difficulties:

• Understanding and Managing Nutrition for People with Profound and Multiple Learning Disabilities (Pamis)
• Eating, drinking and swallowing (Complexneeds)
• Ensuring safer practice for adults with learning disabilities who have dysphagia (NPSA)
• Chapter 14 Dysphagia and People with Profound Intellectual and Multiple Disabilities (Hannah Crawford). In: Profound Intellectual and Multiple Disabilities: Nursing Complex Needs - Jillian Pawlyn, Steven Carnaby.

Respiration/Breathing:

• Respiratory Health for People with Profound and Multiple Learning Disabilities (Pamis)
• Living with a tracheostomy (GOSH)
• Chapter 12 Respiratory Health of People with Profound Intellectual and Multiple Disabilities (Colin Wallis), In: Profound Intellectual and Multiple Disabilities: Nursing Complex Needs - Jillian Pawlyn, Steven Carnaby.

Epilepsy:

• Learning disability and epilepsy (Epilepsy Society)
• Understanding and Managing Epilepsy of People with Profound and Multiple Learning Disabilities (Pamis)
• Epilepsy - make your risks smaller Easy read information for people with epilepsy (SUDEP action)
• Epilepsy - make your risks smaller A support guide for Parents & Carers (SUDEP action)
• Chapter 9 Epilepsy: Implications for People with Profound Intellectual and Multiple Disabilities (Mary Codling and Nicky MacDonald). In: Profound Intellectual and Multiple Disabilities: Nursing Complex Needs - Jillian Pawlyn, Steven Carnaby.

Pain/discomfort:

• The Disability Distress Assessment tool (DisDAT tool) is intended to help identify distress in people with severe communication difficulties. (Regnard et.al)
• PPP profile tool for assisting with pain assessment with people who have profound learning disabilities or multiple disabilities (RCNi and ICH)

Communication:

• Collection of useful tools and approaches for effective communication (BILD)
• Communicating with people with profound and multiple learning disabilities (PMLD) (Mencap)
• Breaking the barriers - communication with people with profound and multiple learning disabilities (NHS Scotland)
• Chapter 4 Making Sense of Communication (Karen Bunning). In: Profound Intellectual and Multiple Disabilities: Nursing Complex Needs - Jillian Pawlyn, Steven Carnaby.
• Communication Passport (Millar, CALL Scotland)
• The Hospital Communication Book (Clear Communication People)

Hearing:

• Action on Hearing Loss (RNID) Factsheets
• Guide to functional assessment of hearing (RNIB)
• Functional Assessment of Hearing (Sense)
• Resource list (Hald)
• Chapter 11 Hearing and Aural Health (Laura Waite). In: Profound Intellectual and Multiple Disabilities: Nursing Complex Needs - Jillian Pawlyn, Steven Carnaby.

Vision:

• An equal right to sight (SeeAbility)
• Vision and People with Learning Disabilities: Guidance for GPs (SeeAbility)
• Easy read library Eye health, eye tests , eye conditions, etc. (SeeAbility)
• Be aware of Vision Healthy eyes, signs and symptoms, etc. (SeeAbility)
• Feedback from the optometrist about my test form (SeeAbility)
• Guide to functional vision assessment (RNIB)
• Chapter 10 ‘Sight Is Might’: Vision and Vision Impairment in People with Profound Intellectual and Multiple Disabilities (Gill Levy). In: Profound Intellectual and Multiple Disabilities: Nursing Complex Needs - Jillian Pawlyn, Steven Carnaby.

Mental health:

• Responding to the Mental and Emotional Needs of People with Profound and Multiple Learning Disabilities (Pamis)
• Living healthy, living well Supporting the physical health and well-being of people with profound and multiple learning disabilities (NHS Scotland)
• Chapter 5 Promoting the Emotional Well-being of People with Profound and Multiple Intellectual Disabilities: A Holistic Approach through Intensive Interaction (Melanie Nind). In: Profound Intellectual and Multiple Disabilities: Nursing Complex Needs - Jillian Pawlyn, Steven Carnaby.
• Chapter 8 Mental Health Problems and People with Profound Intellectual and Multiple Disabilities (Steven Carnaby). In: Profound Intellectual and Multiple Disabilities: Nursing Complex Needs - Jillian Pawlyn, Steven Carnaby.

Continence support:

• Everybody needs Toilets: an easy guide for people with a learning disability by Alice Bradley, Mary Buchanan, John Dawson and Agnes Forsyth (BILD)
• Helping people with learning disabilities manage continence: a workbook for support workers and carers by Alice Bradley with Loretto Lambe (BILD)
• Supporting continence management: a reader for managers by Alice Bradley with Loretto Lambe (BILD)
• Changing Places
• Managing Bowels and Bladders for People with Profound and Multiple Learning Disabilities (Pamis)
• Chapter 16 Continence (Jillian Pawlyn and Shirley Budd). In: Profound Intellectual and Multiple Disabilities: Nursing Complex Needs - Jillian Pawlyn, Steven Carnaby.

Dental and oral hygiene and care:

• A Healthy Mouth: Oral healthcare for people with PMLD - factsheet by Karen Bellis
• Oral Health Care for People with Profound and Multiple Learning Disabilities (PAMIS)
• Good Oral Health (Complexneeds)
• Chapter 13 Dental Care and Oral Health (Pauline Watt-Smith). In: Profound Intellectual and Multiple Disabilities: Nursing Complex Needs - Jillian Pawlyn, Steven Carnaby.

Nutrition and hydration:

• Understanding and Managing Nutrition for People with Profound and Multiple Learning Disabilities (Pamis)
• Chapter 15 Nutrition, Hydration and Weight (Sian Burton, Susan Cox and Sue M. Sandham). In: Profound Intellectual and Multiple Disabilities: Nursing Complex Needs - Jillian Pawlyn, Steven Carnaby.

Cancer screening:

• Bowel cancer screening: easy guide (GOV.UK)
• Breast screening: information for women with learning disabilities (GOV.UK)
• Cervical screening: an easy guide (GOV.UK)
• Skin safety - Sunscreen and sun safety (NHS Choices)

Dependent on technology for their health:

• Technology-dependent children and family life (SPRU)
• Living with Medical Technology (Dr Sue Kirk, the University of Manchester)
• Living with a tracheostomy (GOSH)

Health during transition (childhood to adolescence):

• Transition to adulthood for young disabled people with ‘complex health and support needs’ - Joseph Rowntree Findings (1999). Full report by Jenny Morris.
• Transition: Getting it right for young people - Department of Health, Child Health and Maternity Services Branch (2006)
• Parenting children with complex needs (NHS choices)
• Including Me: managing complex health needs in schools and early years settings
• A book about me (FPLD)
• Children and Young People with Complex Health Needs - A one-stop booklet for families (FPLD)
• Education, health and care (EHC) plan
  • Children with special educational needs and disabilities (SEND) - GOV.UK
  • All about EHC Needs assessments and EHC Plans (IPSEA)
  • Education, Health and Care (EHC) plans (Contact a Family)
• National Children’s Bureau a multi-agency membership organisation working in the children's sector, consisting of interconnected networks for individuals and organisations working with or on behalf of children and young people.
• Training materials for teachers of learners with severe, profound and complex learning difficulties.

Health in Hospital:

• Access to Acute Care; Supporting People with a Learning Disability on Admission to Hospital - "A2A" (Access to Acute) interest group homepage – Resources available to download from this site
• Hospital passport and Hospital grab sheet, examples are available in the Easy Health site
• Hospital Admissions That Should Not Happen: Admissions for Ambulatory Care Sensitive Conditions for People with Learning Disabilities in England. Gyles Glover, Felicity Evison (IHAL)
• The Hospital Communication Book (Clear Communication People)
• Going into hospital with a learning disability (NHS Choices)
• Transforming Care for People with Learning Disabilities – Next Steps (NHS England)

Palliative and End of life:

• Living and dying with dignity: Main messages a best practice guide to end-of-life care for people with a learning disability produced by The University of Keele and Mencap.
• Living and dying with dignity: easy read a best practice guide to end-of-life care for people with a learning disability produced by The University of Keele and Mencap.
• End of life care for adults with a learning disability (Dying Matters)
• Loss, bereavement and end of life care (BILD reading list)
• Bereavement and Loss. Supporting bereaved people with profound and multiple learning disabilities and their parents (Pamis)

Further resources:

• Top Tips for supporting and meeting the needs of people with Profound and Multiple Learning Disabilities (PMLD)
• Continuing healthcare guide (FPLD)
• Continuing Healthcare. What do I need to know about NHS Continuing Healthcare? Information for families of people with learning disabilities (FPLD)
• Death by indifference report (Mencap) – standard and easy read versions
• Dignity in health care for people with learning disabilities (RCN)
• easyhealth.org.uk has lots of health information that is easy to understand.
• Evidence to Independent Inquiry into the Healthcare Needs of People with Learning Disabilities (Mencap)
• Evidence to Independent Inquiry into the Healthcare Needs of People with Learning Disabilities (SeeAbility)
• Getting it Right Charter (Mencap)
• Good healthcare for all (FPLD)
• Meeting the health needs of people with learning disabilities: RCN guidance for nursing staff (RCN)
• Mental health nursing of adults with learning disabilities: RCN guidance (RCN)
• PMLD Journal articles on Health - see page 16 of journal article list prepared by Sheridan Forster, 2008
• Primary Care Commissioning: Management of health for people with learning disabilities
• Profound Intellectual and Multiple Disabilities: Nursing Complex Needs - Jillian Pawlyn and Steve Carnaby (Editors)
• My Next Patient Has a Learning Disability: toolkit for supporting people with learning disabilities (Keele)

Networks:

• PMLD Network - Choice Forum (Together4Change and FPLD)
• Hearing and Learning Disabilities (Hald) Special Interest Group is a network of professionals with a dual interest in people with learning disabilities and hearing loss.
• Learning Disability Nurses Forum (RCN)
• UK Learning Disability Forum (Together4Change and FPLD)
• Palliative Care of People with Learning Disabilities Network (PCPLD Network) seeks to provides information and advice to anyone concerned with the palliative and/ or bereavement care needs of people with learning disabilities.

Health content maintained by @JillianPawlyn