Training the healthcare workforce on lysosomal storage disorders

The UK’s first RCN-accredited nurse training programme for lysosomal storage disorders launched

Published: 07th March 2023

A new comprehensive nurse educational programme to support diagnosis and access to treatment for rare disease patients

A new nurse training programme was launched today to help healthcare professionals better identify lysosomal storage disorders (LSDs) and help provide faster diagnosis and access to treatment.

Expert nurses and health care professionals from several lysosomal disorders centres across the UK designed the eLearning programme with input from the British Inherited Metabolic Disease Group (BIMDG), who are hosting the training on their website.

The training is open to LSD nurses and allied health professionals through membership of BIMDG and is accredited by the Royal College of Nursing (RCN). This means that participants can earn CPD points by completing the modules.

What are lysosomal storage diseases?

Lysosomal storage diseases are a group of over 70 rare inherited metabolic disorders that result from defects in lysosomal function. They are characterized by an abnormal build-up of various toxic materials in the body’s cells as a result of enzyme deficiencies. They may affect different parts of the body, including the skeleton, brain, skin, heart, and central nervous system. Problems with lysosomal function leads to diseases such a Gaucher Disease, Fabry Disease, Mucopolysaccharidoses and many more.

Health Innovation East supported the development of the training programme by seeking educational grant funding from four pharma companies, coordinating the process for the nurse steering committee to select the medical communications agency to be appointed to develop content.

Liz Morris, Lead Specialist Nurse at Cambridge University Hospitals NHS Foundation Trust, was part of the steering group which helped create the course content. Speaking of the launch, she said:

“As a clinician, it can be difficult finding reliable training to help deliver better care for patients with rare diseases. We want to help educate nurses and other health professionals by providing accessible, digestible and accredited resources so they can understand more about these conditions and their patients’ experiences. The team at Health Innovation East have been pivotal in helping us get to this point; making introductions and helping us find the right partners to give healthcare professionals the tools to help their patients.”

This resource supports the NHS Long Term Plan’s aims of better workforce education and retention as well as improving the experiences of patients with rare diseases. The team is already looking at expanding the platform to additional healthcare professionals including pharmacists, genetic counsellors and GPs across the UK and beyond.

What does the lysosomal disorders training programme cover?

There are six evidence-based modules covering important topics relevant to metabolic nurses treating patients with lysosomal storage disorders. These modules have been designed to advance knowledge and practical skills as well as encourage continuous professional development. Each module has an assessment and a certificate upon completion.

The modules are:

  • Biological function of lysosomes
  • Pathophysiology of different lysosomal disorders
  • Diagnosis
  • Treatment and management
  • Provision of care
  • Research and development

There is also an optional capstone assessment to reflect on their learning across their programme. This involves writing a patient case study with the aim to submit to a scientific journal.

Access the training via the BIMDG website now

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