PMLD / PMID

Health Resources

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.

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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
Toolkit: 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)
Postural Care (Mencap )
Postural Management (Complexneeds)
Postural Care (NES Scotland)
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)
Dysphagia in people with learning difficulties: reasonable adjustments guidance (Public Health England)
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)
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)

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)
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 a tracheostomy (GOSH)
Supporting pupils with medical conditions at school (DfE)

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 (Carlin, J)
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 (England) (Contact a Family)
- Education plans (Northern Ireland, Scotland and Wales (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:

Going into hospital with a learning disability (NHS Choices)
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)
Transforming Care for People with Learning Disabilities – Next Steps (NHS England)
Michael J (2008) Healthcare for All: Report of the Independent Inquiry into Access to Healthcare for People with Learning Disabilities.
Department of Health, Social Services and Public Safety (2010) Guidelines on Caring for People with a Learning Disability in General Hospital Settings.
Public Health England (2016) Reasonable Adjustments: A Legal Duty.
Public Health Wales (2014) Improving General Hospital Care of Patients who have a Learning Disability.
Learning Disabilities Mortality Review (LeDeR) Programme
The learning disability improvement standards for NHS trusts (NHS Improvement)

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)
Improving End of Life Care for People with Intellectual and Developmental Disabilities Resource Pack (NHS)
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)
Campaign reports including Treat me right, Getting it right charter (Mencap)
Dignity in health care for people with learning disabilities (RCN)
easyhealth.org.uk has lots of health information that is easy to understand.
Good healthcare for all (FPLD)
Mental health and learning disabilities (NES Scotland)
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)
Toolkits for supporting people with learning disabilities (Keele) Including Loss, Change & Bereavement, End of Life Care,
Toolkit (Keele) My Next Patient Has a Learning Disability

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)
Choice forum - UK Forum for Supporting People with Learning Disabilities (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