MODULE 5:

Resources for Healthcare Providers

This module provides practical guidance, tools, and clinical resources to support healthcare professionals working with individuals with MPS. It focuses on improving communication, enhancing care coordination, supporting transition planning, and ensuring safe emergency management.

Module Overview

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Communicating with Young Adults with MPS

(01)

Guidance on effective, patient-centred communication and shared decision-making.

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Transition Readiness Checklist

(02)

Tools and frameworks to support safe, structured transition from paediatric to adult care.

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Case Studies from MPS Adults

(03)

Real-world MPS case studies to support reflective, person-centred clinical practice.

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Emergency Care Quick Reference

(04)

Essential protocols for safe and effective emergency management of individuals with MPS.

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Advanced Care Plan & LPA Information (UK)

(05)

Information on ACP, LPA, and legal frameworks supporting long-term care decisions.

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Communicating with Young Adults with MPS

Supporting respectful, patient-centred conversations that promote independence, trust, and shared decision-making.

Includes

Communication guidelines

Do's & Don'ts poster

Cultural sensitivity considerations

Shared decision-making strategies

Download Resource
Download the Poster

Transition Readiness Checklist

A practical checklist to help young people prepare for adult healthcare services and increasing independence.

Includes:

  • Medical readiness
  • Psychosocial considerations
  • Legal planning
  • Practical coordination tools
Download the Checklist

Case Studies from MPS Adults

Real experiences from adults with MPS highlighting common transition challenges and successful support strategies.

Includes:

Patient case studies

Challenges and solutions

Clinical insights

Key learning points

Download the Case Studies

Emergency Care Quick Reference

Quick-reference information to support emergency, surgical, and acute care teams managing adults with MPS.

Includes:

  • Airway management considerations
  • Intubation precautions
  • Cardiac monitoring guidance
  • Infusion and anesthesia considerations
Download ER Poster
Download A6 Card

Advanced Care Plan & LPA Information (UK)

Information and planning tools to support future healthcare decisions and legal preparation.

Includes:

Advance Care Plans (ACP)

Lasting Power of Attorney (LPA)

NHS Continuing Healthcare

Planning resources and templates

Download the Plan

Principles of Effective MPS Care

Providing effective care for individuals with MPS requires clear communication, structured planning, and an understanding of both clinical and lived experience perspectives. These resources are designed to support healthcare professionals in delivering safe, informed, and person-centred care across all stages of life.

Download All Module 5 Resources
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