Meeting of the Joint Committee on Health and Children
Presentation by Mrs. Caitriona Devlin
Campaign to improve services for teenagers who suffer acquired brain injury
DID YOU KNOW THAT THERE IS NO DEDICATED SUPPORT GROUP OR
ORGANISATION FOR TEENAGERS FOLLOWING AN ACQUIRED BRAIN INJURY
(ABI)??
What is an ABI?
An ABI is any sudden damage received to the brain during a person’s lifetime
and not as a result of birth trauma.
What are the causes of an ABI?
 Road Traffic Accident, a fall, a sporting injury or an assault.
 It can also be caused by a brain tumour, aneurysm, haemorrhage, a
viral brain infection such as meningitis, encephalitis or septicaemia.
 It can also be caused by lack of oxygen to the brain e.g. following a
heart attack.
Conor’s Story
On the 3rd December 2012 aged 14, I sustained a very significant brain
injury following a very serious RTA in which my Dad was also seriously
injured. I sustained a fractured base of skull , bleed to the cerebellum, ( this
affected the balance part of my brain) a fractured cheekbone, facial scarring
I had a large frontal lobe involvement ( this affected my emotions and the
cognitive part of my brain I just couldn’t for a long time rationalise anything
I was very emotionally labile) . I had a distal axonal injury (part of my brain
in different areas scraped off my skull causing little bleeds all over it)
On 3rd December 2013 one year to the day of my accident I appeared on
Ireland AM and on various radio stations before making a presentation in
the Dáil and submitting a petition of over 4000 names highlighting the fact
that there is no dedicated support group or organisation providing
specialist advices or services to teenagers or their families and friends
following an ABI.
An ABI is life changing. I thought it could never happen to me or my family.
It really does only take a split second for your life and the lives of your
families to be changed forever. The lack of dedicated services, the lack of a
support group, or organisation specialising in Acquired Brain Injury for this
age group made a difficult experience turn into a terrifying journey for us.
Everyone that sustains an ABI deserves the right to return to live the best
life that they can live. I have been very lucky with the recovery I have made.
I know that my outcome might not have been so good if my Mum hadn’t
fought so tirelessly to ensure that I got the specialised care that I required. I
continue 2 years post-accident to require Psychology, Speech and
Language, and Occupational Therapy support. I avail of these supports to
ensure that I am prepared and supported with my higher level learning for
my Leaving Certificate. Different problems have arisen during the last two
years and having these supports in place has helped me come to terms and
cope with so many different problems that have arisen and continue to
arise. The Psychology support that mum eventually secured for me through
ABI Cashel( their remit is in fact adults only) has and continues to be
invaluable. During the early stages of my recovery I also needed
Physiotherapy and Psychiatric support (I was so sad and confused about
what was happening it felt like I was in a constant nightmare dream and
could not understand why I couldn’t wake up and get” back to the real
world.” I expressed suicidal tendencies and just wanted to get home. I was
physically and emotionally very weak.
Everything changes for you following an ABI. Despite my determination not
to let my ABI determine me. life has been difficult at times. I was a pupil at
Rockwell College when the accident happened. I enjoyed school and loved
rugby. I had a good circle of friends and a good relationship with my
teachers. However, following the accident I felt lost. I can express now that
I was traumatised my whole sense of who I was disappeared. I was very
hard on myself and my confidence in myself was shattered especially when
it came to sports. I over analysed everything especially in sports. I tried so
hard to play well that I played worse and used to beat myself up about this.
I didn’t know where I belonged anymore. Overtime I made up my mind that
I wanted to make a new start and change schools. I know my mum and dad
were very nervous about this as they were afraid I was potentially jumping
from the frying pan into the fire. I just wanted a new start that no one was
comparing me to the old pre accident Conor I needed to be accepted on
who I was now “without comparisons” I didn’t want to be” the brain injury
kid”. I moved schools in September and feel very happy with my decision.
Having the specialised supports already in place ensured that I made an
informed decision and was aware of the potential difficulties that lay ahead.
The importance of continuous supports is paramount following any ABI.
However, as a teenager so many changes are naturally occurring in our
bodies physically and emotionally. Throwing a head injury into the mix
without specialised supports and advices and you could find yourself in
potentially very scary territory.
Some teenagers can appear to have made a good initial recovery only for
cognitive, social, emotional, or behavioural problems to become apparent
later with age and development.
An ABI can affect the teenager’s future acquisition of skills and it can
throw their normal development process off track.
In my opinion having specialised support services in place in the community
would in fact save money for the state in the long term. I had with my
mother’s hard work and perseverance secured the specialised services I
needed in the community prior to going to the National Rehabilitation Unit
in Dun Laoghaire. These services were however scattered all over the
country from Tipperary , Tullamore, Cork, Mallow, and Cork. .As a result of
this I only had to do a two week assessment before being discharged home
to continue with my community supports . I was one of the lucky ones that
had a good support system in place before leaving the NRH. Many children
and teenagers following an ABI leave the NRH where they have spent weeks
and months with the security of having all the required specialised services
under one roof to having little or no supports in the community. This is very
frightening for families and its leaves families distressed and vulnerable. It
is crazy that in this country there are only 6 beds and 2 day beds (There is a
total of 6 beds which are shared with children with Spinal Cord Injury) for
all the children in Ireland requiring these specialised services. There is such
a long waiting list to get in there. Teenagers and younger children all have
to follow the same rules. We had to go to bed early etc. in the ideal world
older children should have a dedicated area to themselves where they can
watch a movie, or play music or even just to chat. I found this difficult as I
felt like my confidence and independence was knocked as we had to adhere
to the rules the same as the 2 year olds.
In the Dail last year I heard my brother Paul speak for the first time about
life for him following my ABI. Paul was amazing and such an important part
of my recovery however, I was shocked to hear Paul talk on what a
devastating affect my accident had on him.
Pauls Story
On the 3rd December 2012 my life changed dramatically. I was 12 years old
and I was faced with the prospect of losing my brother. He and my Dad had
been involved in a serious car accident. Conor was taken to the Intensive
Care Unit in Clonmel before being stabilised and sent to Cork University
Hospital. He was on life support and nobody could say whether he was
going to ever be ok again. He had injured his brain. I asked mum for a
promise not to tell me lies and just be truthful but nobody knew I was so
scared. When Conor first woke up all he did was cry and scream I was the
only one that could really calm him down. I watched movies with him and
rubbed his head but Conor never remembered me being with him. I went
home with my aunt and uncle as Mum and Dad felt I needed a break from
the hospital. I went back to school but I was so lonely. I felt angry that Dad
didn’t come home with me even though I knew he was injured I hated
feeling so alone. When Conor came home at Christmas I was so delighted it
was the best Christmas ever. However, at the same time it was like living
with a stranger. He seemed now like the younger brother he depended on
me a lot. Conor was so scared and sad at times. I had no one to play with,
Conor used to be so tired all the time. Dad was different and Mam was too.
Conor and Mam were always going for appointments and then to the NRH.I
felt mixed up I was glad Mam was looking after Conor but I also felt sad that
I was on my own. It took a long time for me to see the old Conor coming
back. I wish there had been someone to talk to about this. Perhaps another
child whose brother or sister had went through the same kind of
experience. Since the accident Conor has made me so proud the way he has
fought very hard to get back to full fitness. I have had to grow up a lot I
realise we are very lucky that Conor is so good. I just wish Mam hadn’t had
to fight so hard to get Conor the help he needed. I know Mam felt guilty
about me and tried as much as possible to give me time. If these services
had been in place Mam would have not been as stressed and I wouldn’t
have felt so alone. I want there to be someone or somewhere for other
children like me to be able to talk about how they are feeling if someone in
their family suffers from an Acquired Brain Injury. It was a very scary lonely
time for me.
Mums Experience
On the 3rd 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 RTA. 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 that there was
“reason to be hopeful”. Conors recovery was very emotionally draining.
When Conor came off life support he became very psychotic and his anxiety
levels were through the roof. He had to literally learn how to do everything
again from the most basic tasks such as walking, eating and speaking etc.
Conor thought he was in a 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
as he had enough of hospital he said “he would kill himself if he couldn’t 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 this
frightful day the reality of the lack of services for teenagers following ABI
became very apparent. Conor had been having daily intensive
physiotherapy, Speech and Language , 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 do all people with an
ABI) required all the specialist services at varying degrees. Conor in
particular needed his psychological wellbeing 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. It shocked me that even though it is
well known that all specialised services will be required at some stage for all
persons following an ABI that no referrals had been made. As Conor was so
emotionally labile I used to have to wait till he was asleep to phone text and
haunt people to try and see if anyone could offer me help to ensure 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 following ABI and their families. Words cannot
describe how devastating this was to be constantly fighting for supports at a
time when my whole 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 just
the type of injury or the severity of injury but the age at injury,
developmental stage, the family community supports, the availability of
specialised supports all contribute to the teenagers eventual outcome.
SOME SUGGESTIONS THAT IN MY OPINION MAY HELP MAKE A DIFFERENCE
IN THE FUTURE.
 A well-defined pathway of care in the future is needed. Every
child admitted with an ABI should have referrals made on
admission to all the relevant specialities in their local area in
preparation for discharge. It is important to remember that some
needs may arise that have little or no local specialists
 Parents should have a Paediatric ABI specialist link person that
they can liaise with throughout there ABI journey. There should be
ready access to expert services and a clear map of how services
work and are inter linked. Who does what??
 Written information for parents around ABI in Ireland. The
leaflets and booklets used are all UK or USA produced and not
specific to the Irish situation.
 Up skilling of local services 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 SNA and teachers on request.
 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 ABI is that a child’s
needs and presentation arising from their injury can change with
development. This increases the intensity of the services (reviews
and re-assessments) required for children versus adults.
 Understanding of the subtle and emotional impact of ABI.
 Education for teachers and educators around ABI as part of their
training. 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 to the Department of Education .NCSE and to SENO’s
to raise awareness and understanding about ABI and its potential
impact on schooling. This information could be provided through
lecture or online podcasts.
 The NRH is the centre of excellence. In my opinion there should be
Outpatient/Outreach Paediatric service available there. The
current service has 6 beds and is inpatient only. It has all the
expertise together under one roof they can therefore liaise with
each other to ensure each child’s individual needs are met.
Conor’s care in the community was so fragmented.
 The NRH Paediatric Programme therapists are world class should
be an Outpatient Paediatrically- trained, but most only work parttime in that service. The NRH Paediatric Neuropsychologist, who
plays a vital role in ascertaining the impact of injury and
monitoring change over the years, works only part-time and also
provides services to children with spinal Injury and Limb Absence.
The waiting lists for admission assessments are very long adding
to the stress of what is a very difficult situation. An increase in
therapy hours is required to this service if the NRH is to develop
and grow.
EVERY CHILD REGARDLESS OF THEIR AGE DESERVES THE BEST AVAILABLE
RESOURCES TO LIVE THE BEST LIFE THAT THEY CAN!
I would like now to introduce Dr. Sarah O Doherty Clinical Psychologist in
Neuropsychology to answer any of your questions arising from this
presentation. She will also address why a well-defined pathway of care is
needed for all children following an ABI.