Ireland has only 1/2 the staff it needs for genetic services1


People are waiting over 2 years for the right diagnosis2

Wrong Treatment

The delay in diagnosis means that people are being treated for the wrong diseases3

Ending the Wait1

Summary of Report

A genetics service that seeks to realise it’s clinical potential, provide a quality experience for patients and pursue an efficient allocation of resources should set waiting lists as a key measure of performance: a maximum wait time of 6 months has been proposed as optimal on clinical, safety and efficiency grounds5.

There is a clear opportunity to take actions in the short-term – a period of 1 to 2 years – which will achieve meaningful reductions in the time patients spend on the waiting list for genetic services in Ireland.

The urgency of short-term actions to improve the current service is acknowledged in the National Strategy for Accelerating Genetic and Genomic Medicine in Ireland which outlines that “deliver(ing) service improvements in the short term through the implementation of the funding commitment in the National Service Plan 2023 to address urgent service deficiencies”.

This report identifies practical recommendations for specific actions which are i) capable of achieving meaningful reductions in waiting times; ii) derived from the insights of clinical geneticists in other genomics services; iii) consistent with the long-term development of the service in Ireland.

Recommendation 1

An under-staffed workforce limits capacity for referrals and drives up wait times

Staff per million population

Referrals per million population

Time to first appointment, months

Accelerating recruitment and expanding the types of roles that staff the genetics service will create capacity and allow senior clinical staff to focus on complex tasks such as diagnosis and the development of much needed protocols and processes. Allowing delays in recruitment has been a persistent issue for the genetics service to date and has resulted in an under-resourced and under-developed service.

Recommendation 2

Equip clinical teams with the resources to achieve further efficiencies in pathway management

Provide the genetics service with the autonomy and resources to manage the patient pathway, thereby addressing known bottlenecks and reducing obvious inefficiencies such as duplicate referrals and the complexity of managing test providers. A recurring share of budget should be allocated to the core clinical team for this.

Recommendation 3

Empower clinical teams to implement interim technology solutions

Empower the genetics service to implement interim technology solutions with the support of their local IT Department to specifically improve the management of the patient pathway and reduce wait times. A set of technologies and data essential to service improvements should be ‘white-listed’ to allow for rapid implementation inside the genomics service ahead of wider longer-term developments such as Electronic Health Records. 

Recommendation 4

Utilise accessible capacity

Where demand exceeds capacity utilising available and accessible capacity can create ‘breathing space’ for the Irish service to grow. Where this also contributes to long-term quality, for example building cross-border services through collaboration with services in Northern Ireland, this adds to the rationale for pursuing this step.

Skip to content