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 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 passports, hospital checklists 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 (National Elf Service)

• Postural care resources (Simple stuff works)

• Postural Care guide (Pamis)

• Postural Care (Mencap )

• Postural Management (Complexneeds)

• Postural Care (NES)

• Postural Care (Public Health England)

• Chapter 17 Mobility, Posture and Comfort (Sarah Hill and Liz Goldsmith). In: Profound Intellectual and Multiple Disabilities: Nursing Complex Needs - Jillian Pawlyn, Steven Carnaby.

• Pressure ulcers (Public Health England)

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)

• Unsafe swallow project (Gerrard Wainright St Anne's)

• 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)

Communication:

• Five good communication standards - (RCSLT) 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 (NES)

• 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)

• Informal Functional Hearing Evaluation (TSVBI)

• 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: Recommendations for professionals and Reasonable adjustments (SeeAbility)

• Eye Care Factsheets library Eye health, eye tests , eye conditions, etc. (SeeAbility)

• Feedback from the optometrist about my test form (SeeAbility)

• Guide to functional vision assessment (RNIB)

• Functional Vision Assessment (See Ability)

• 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)

• 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)

• 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