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.