Ms Catriona Devlin:

On 3 December 2012, life as I knew it changed. I was faced with the reality that my husband Michael and son Conor had been involved in a serious road traffic accident. Michael had multiple fractures to his back and Conor had a serious brain injury. It was terrifying. As a mother and a nurse, I felt helpless. The only thing we were told was that time would tell and there was "reason to be hopeful".

Conor's recovery was very emotionally draining. When Conor came off life support, he became very psychotic and his anxiety levels were through the roof. He literally had to learn how to do everything again, including the most basic tasks like walking, eating and speaking. Conor thought he was in a constant dream and would at times hurt himself to see if he could wake up. It was awful. My husband was a physical and mental wreck and Paul was distraught. The day Conor begged me to take him home because he had enough of hospital, he said he would kill himself if he could not go home. This was soul destroying as a mother to hear. I asked Conor to give me a few days to get things in place and I would get him home.

On that frightful day, the reality of the lack of services for teenagers following an ABI became very apparent. Conor had been having daily intensive physiotherapy, speech and language therapy and occupational therapy and was under the care of a consultant paediatric psychiatrist. I was now faced with the prospect of bringing him home with little or no services in place. The panic buttons were alarming big time in my head. Conor, as all people with an ABI do, required all of the specialist services to varying degrees. Conor in particular needed his psychological well being to be supported. I was distraught - I suddenly found myself case managing Conor's care. I was shocked to find that there was nothing really arranged for Conor when I expressed a desire to take him home, even though it was well known that all specialised services would be required at some stage for everyone following an ABI.

As Conor was so emotionally labile, I used to have to wait until he was asleep to telephone, text and haunt people to try to see if they could offer me help to ensure that Conor's care could be secured in the Tipperary area. I nearly drove myself mad. It was soul destroying, not only as a mum, but as a nurse, to realise the void in services for teenagers and their families following ABIs. Words cannot describe how devastating it was to be constantly fighting for supports at a time when my entire life was turned upside down. Simple things could have made this journey easier.

The outcome of an ABI in teenagers is dependent on many factors, Not only the type or severity of the injury, but the age at injury, developmental stage, the family community supports and the availability of specialised supports contribute to the teenager's eventual outcome. I will outline some suggestions that, in my opinion, might help to make a difference in the future.

A well-defined pathway of care is needed. Every child admitted with an ABI should have referrals made on admission to all of the relevant specialties in his or her local area in preparation for discharge. It is important to remember that some needs may arise that have few or no local specialists. Parents should have a paediatric ABI specialist link person with whom they can liaise throughout their ABI journey. There should be ready access to expert services and a clear map of how services work and are interlinked. For example, who does what? There should be written information for parents about ABI in Ireland. The leaflets and booklets that I received were all UK or USA-produced and not specific to the Irish situation. Local services should be upskilled when a child with an ABI presents. One idea is that local therapists could attend the NRH for specialist training. The NRH already provides this service to a child's special needs assistant, SNA, and teachers on request.

There should be follow-up and ongoing advice as the child's needs change. This could be provided by a paediatric ABI specialist link person. A major difference between child and adult ABIs is that a child's needs and presentation arising from his or her injury can change with development. This increases the intensity of the services - reviews and re-assessments - that are required for children versus adults.

There should be an understanding of the subtle and emotional impact of an ABI. Teachers and educators should have as part of their training education about ABIs. This could be delivered as a module in teacher training college and-or at master's level. Schools could be supported by the ABI specialist link person, who might work in conjunction with the NRH programme. Information could be given to the Department of Education and Skills, the National Council for Special Education, NCSE, and special education needs organisers, SENOs, to raise awareness and understanding about ABI and its potential impact on schooling. This information could be provided through lectures or online podcasts.

The NRH is the centre of excellence. In my opinion, an outpatient-outreach paediatric service should be available there. The current service has six beds and is inpatient only. As Conor mentioned, these are shared with children with spinal cord injuries. The NRH has all off the expertise together under one roof, allowing people to liaise with one another to ensure each child's individual needs are met. Conor's care in the community was very fragmented.

The NRH paediatric programme therapists are world class, but most only work part-time in that service. The NRH paediatric neuropsychologist, who plays a vital role in ascertaining the impact of injury and monitoring change over the years, only works part-time and also provides services to children with spinal injuries and limb absences. The waiting lists for admission assessments are very long, adding to the stress of what is already a very difficult situation. An increase in therapy hours is required if the NRH is to develop and grow. In my opinion, every child, regardless of age, deserves the best available resources to live the best life that he or she can.

I would like to hand you over to Dr. Sarah O' Doherty, Clinical Psychologist in Neuropsychology, to answer any of the committee Members' questions or to readdress why well-defined pathways are needed for children following acquired brain injury, ABI.