Today, the Health Information and Quality Authority (HIQA) has launched a six-week public consultation on its draft health technology assessment of the transition to, and organisation of, adult secondary healthcare services for individuals with severe neurological impairment (SNI) in Ireland.

The assessment, requested by the Department of Health, examines the transition from paediatric to adult healthcare for people with SNI, and potential options for the configuration of adult secondary healthcare services to best meet the needs of this group of individuals. Its findings will inform decision-making by the Minister for Health and the Health Service Executive.

SNI describes a group of disorders of the central nervous system (that is, the brain and spinal cord) that arise in childhood and result in motor impairment, cognitive impairment and medical complexity. While the impairment is permanent, it can be progressive or static. People with SNI have complex lifelong healthcare needs and require substantial support with activities of daily living. 

Advances in healthcare mean more young people with SNI are now living into adulthood, increasing the need for coordinated transition from paediatric to adult healthcare services. This move can be challenging for these individuals and their families, as adult services are typically organised differently from paediatric services. This can lead to some young adults losing contact with healthcare teams during the transition, which is an issue affecting young adults with SNI in many countries.

Commenting on the launch of the public consultation, HIQA’s Chief Scientist, Dr Conor Teljeur said: 

“People with severe neurological impairment have complex care needs and require extensive support throughout their lives. The structure of paediatric hospital services lends itself to managing those needs. Adult hospital care, by comparison, can appear more disparate and frequently lacks a single point of contact within the hospital for coordinating care across specialities. This makes navigating healthcare challenging for people with SNI as they transition into adulthood, placing an additional burden on their families and carers.”

Dr Conor Teljeur continued: 

“Our draft assessment found improvements in transition from paediatric to adult healthcare cannot occur in isolation, but instead depend on having adult services that are equipped to provide coordinated, ongoing care. We encourage people with experience of these services, their families and carers, healthcare professionals and members of the public to read the draft report and share their views with us.”

HIQA is now seeking feedback on its draft findings. The consultation will remain open until 5pm on Friday, 13 November.

Following the public consultation, HIQA will consider the feedback received and update the assessment where appropriate. The final report will be submitted as advice to the Minister for Health and published on HIQA’s website.

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Further information: 
Caoimhe O’Connell, Communications Manager | 087 639 5916 | caoconnell@hiqa.ie  

Notes to the Editor:

• HIQA has previously published the following document:
  • Protocol for a health technology assessment of the transition to and organisation of adult healthcare services for individuals with severe neurological impairment
• HIQA has today published the following document for public consultation:
  • Draft Health Technology Assessment of the transition to, and organisation of, adult healthcare services for individuals with severe neurological impairment
• Severe neurological impairment (SNI) is a medical term for the most severe neurological conditions that arise in childhood. A neurological condition is any condition that affects the brain, spinal cord or nervous system. These conditions can arise suddenly, for example due to a brain injury, or can be present from birth. SNI involves experiencing both physical and intellectual disability. More than 400 different conditions can lead to SNI, including epilepsy and cerebral palsy.
• People with SNI depend on their families and the healthcare system to provide much assistance and medical care for a variety of complex needs daily. 
• An estimated 1,500 children in Ireland have SNI, about 1 in every 1,000 children. 
• People with SNI are living longer due to advances in medical care and technology. 
• Transition of care involves moving from paediatric to adult healthcare services.
• Similar to the situation observed in Ireland, HIQA’s overview of international services identified a consistent structural divergence between paediatric and adult secondary healthcare for individuals with SNI. Paediatric services were typically well established, multidisciplinary, and coordinated, whereas adult services were typically disjointed and delivered by single specialities.
• The lack of specialist consultant-led care and coordination support to facilitate integrated healthcare for adults with SNI increases the burden on these individuals and their families and reduces the opportunities for proactive monitoring and integrated management of the patient’s care needs.
• The evidence presented in this draft HTA shows that adult services should involve multidisciplinary care overseen by a single clinician, as well as a dedicated coordination role to manage appointments. Clear leadership of the service and communication between hospital and community services are key to safe care.
• The HSE’s National Transition Framework could be adapted to meet the needs of young people with SNI, but improvements in the adult service must be made in tandem.

About HIQA

The Health Information and Quality Authority (HIQA) is the independent body that promotes safety and quality in the provision of health and social care services in Ireland. Through its regulation, standard setting and evidence to inform decision-making functions, HIQA supports health and social care services to consistently deliver excellent standards of care and the best possible health and social care outcomes for all.
Find out more: www.hiqa.ie