Jerry Buttimer (Cork South Central, Fine Gael)
Link to this: Individually | In context | Oireachtas source

I remind members, witnesses and people in the Visitors Gallery to ensure their mobile telephones are switched off for the duration of the meeting as they interfere with the broadcasting of the proceedings.

I welcome to our meeting members of the campaign to improve services for teenagers who suffer from an acquired brain injury. I welcome Mr. Paul Devlin, Mr. Conor Devlin, Mrs. Catriona Devlin and Dr. Sarah O'Doherty. I sincerely thank them for being here. I thank Deputy Lowry who made the request that they appear before the committee. I also thank the Minister of State, Deputy Hayes, for being here. Apologies have been received from Deputy Noel Coonan who cannot be here today. It is important that we understand that Dr. O'Doherty will make her presentation in an advisory capacity and she is not part of any campaign but she is here in her own right and is working very hard to improve services for teenagers who suffer from an acquired brain injuries. The witnesses are very welcome to the meeting. I also welcome Deputy Fitzpatrick to the meeting. We extended our sympathy to him on the death of his mother at our meeting last Tuesday and I thank him for being here this morning. Apologies have been received from Deputy Regina Doherty, Deputy Dowds, who had to leave to attend the Committee of Public Accounts, Deputy Moloney, Senator Henry and the Vice Chairman, Deputy Conway.

Sandra McLellan (Cork East, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

Deputy Dowds is still here but he will have to leave shortly.

Robert Dowds (Dublin Mid West, Labour)
Link to this: Individually | In context | Oireachtas source

I will have to leave in a few moments but I am still here in body.

Jerry Buttimer (Cork South Central, Fine Gael)
Link to this: Individually | In context | Oireachtas source

Witnesses are protected by absolute privilege in respect of the evidence they are to give to the committee. However, if they are directed by the committee to cease giving evidence in relation to a particular matter but continue to do so, they are entitled thereafter only to a qualified privilege in respect of their evidence. They are directed that only evidence connected with the subject matter of these proceedings is to be given and witnesses are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person, persons or entity by name or in such a way as to make him or her identifiable. Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside the Houses or an official by name or in such a way as to make him or her identifiable.

I invite Mr. Catriona Devlin to being the proceedings.

Ms Catriona Devlin:

Do the members know there is no dedicated support group or organisation for teenagers following an acquired brain injury? What is an acquired brain injury? It 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 acquired brain injury? It can be caused by a 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, for example, following a heart attack. I will pass over to Mr. Conor Devlin.

Mr. Conor Devlin:

I thank the Chairman and members for inviting me to attend. On 3 December 2012, aged 14, I sustained a very significant brain injury following a very serious road traffic accident in which my Dad was also seriously injured. I sustained a fractured base of skull, a bleed to the cerebellum, which affected the balance part of my brain, a fractured cheekbone, facial scarring and I had a large frontal lobe involvement and this affected my emotions and the cognitive part of my brain. I could not rationalise anything; I was an emotional wreck. I had a distal axonal injury, where my brain bounced off my skull causing loads of little bleeds all around it.
On 3 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 more than 4,000 names highlighting the fact that there is no support services, group or organisation providing specialist advices or services to teenagers or their families and following an acquired brain injury.
An acquired brain injury is life changing. I never thought it would happen to me or my family. It only takes a split second for one's life or the lives of others to be changed forever. The lack of dedicated services and the lack of a support group or organisations specialising in acquired brain injury for this age group has made a difficult experience turn into a terrifying journey for our family.
Everyone who sustains an acquired brain injury deserves the right to return to live the best life that he or she 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 had not fought so tirelessly to ensure that I got the specialised care that I required. I continue two 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 problems and these problems continue to arise. The psychology support that Mum eventually secured for me through ABI Ireland in Cashel - although its remit is for 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 and I could not understand why I could not wake up and get back to the real world. I was physically and emotionally very weak. I expressed suicidal tendencies and just wanted to get home.
Everything changes for one following an acquired brain injury. Despite my determination not to let my acquired brain injury 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 in my performance in sports. I tried so hard to play well that I ended up playing worse and used to beat myself up over it. I did not know where I belonged anymore. Over time 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 pre-accident Conor. I needed to be accepted for 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 an acquired brain injury. However, as a teenager many changes are naturally occurring in our bodies, physically and emotionally, and throwing a head injury into the mix without specialised supports and advices, one could find oneself 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 acquired brain injury affects 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 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 Dún Laoghaire. These services were scattered all over the country in Tipperary, Tullamore, Mallow and Cork. As a result of this, I only had to do a two-week assessment in the National Rehabilitation Hospital, NRH, before being discharged home to continue with my community supports. I was one of the lucky ones who had a good support system in place before leaving the NRH.

Many children and teenagers following an acquired brain injury, ABI, leave the National Rehabilitation Hospital, NRH, where they have spent weeks and months with the security of having all the required specialised services under one roof only to have little or no supports in the community. This is frightening for families and leaves them distressed and vulnerable. Members have no idea. It is crazy that, in this country, there are only six beds and two day beds - six beds are shared with children with spinal cord injuries - for all of the children requiring these specialised services. There is a long waiting list.

Teenagers and younger children have to follow the same rules in the NRH. We had to go to bed early, etc. In an ideal world, older children would have a specialised area to themselves where they could watch a movie, play music or just chat. I found this difficult. My confidence and independence were knocked, as we had to adhere to the same rules as two year olds. Teenagers are the most high-risk age group for ABIs. Why is there no room for us?

In the Oireachtas 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, but I was shocked to hear him talk about what a devastating effect it had on him.

Mr. Paul Devlin:

I thank the Chairman and his committee for having me today. On 3 December 2012, my life changed dramatically. Only 12 years old, 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 ever going to be okay again. That hurt me. He had injured his brain. I asked Mum for a promise not to tell me lies and just to be truthful, but nobody knew I was so scared. I needed to know the truth behind it all.

When Conor first woke up, all he did was cry and scream. I was the only one who 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 did not come home with me even though I knew he was injured. I hated feeling so alone. I was living out of a bag and being tossed from house to house.

When Conor came home at Christmas, I was so delighted. It was the best Christmas present ever. However, at the same time it was like living with a stranger. He now seemed 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 of 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. In fact, it was only about a year ago.

I wish there had been someone to talk to about this, perhaps another child whose brother or sister had gone through the same kind of experience. Since the accident, Conor has made me so proud by the way he has fought very hard to get back to full fitness and his old sport. I have had to grow up a lot. I realise that we are very lucky that Conor is so good. I just wish Mammy had not 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 her time. If these services had been in place, Mam would not have had to be so stressed and I would not 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 after someone in their family suffers an ABI. It was a very scary, lonely time for me.

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.

Jerry Buttimer (Cork South Central, Fine Gael)
Link to this: Individually | In context | Oireachtas source

Would Dr. O'Doherty like to make a few brief remarks and then we can take Members' questions?

Dr. Sarah O'Doherty:

The Devlin family have summarised everything very well. On childhood acquired brain injury, one of the issues is that it really is, generally, a lifelong condition. Needs change in these children with development which makes the level of service they need quite intensive. I work at the National Rehabilitation Hospital, but I am not speaking on its behalf today. However, I see a lot of children coming back to its services, or further down the line, years after a child has suffered an acquired brain injury, problems can present and parents find it very hard to access services at that stage. There are problems around access to services and information and a lack of clarity about acquired brain injury in the community and within the education system.

Billy Kelleher (Cork North Central, Fianna Fail)
Link to this: Individually | In context | Oireachtas source

I welcome all the witnesses here today. I wish to say at the outset that very often people can go through very traumatic experiences and come out the other side and are happy that they are out the other side. Obviously, the witnesses wish to highlight the deficiencies in the services not only in the context of the impact on them but also the impact on other families and individuals who tragically will have to experience this at some stage in the future, as is inevitable. It is a noble aspiration to try to ensure that their experiences can highlight the deficiencies.

Obviously, Conor is at the centre of this, in terms of the presentation. However, it impacts not only him. We can get caught up in the impact on the individual and forget about the impact on the broader family, leaking out into the community as well. We need to focus on the supports that are required not only for the individual but also to ensure the broader community can also support that individual and that family?

I am interested in the whole area of education. A school or college might not have any expertise in the area and on what is required when a person has an acquired brain injury and they are on the pathway to recovery. There are various stages. I presume the reaction to the trauma initially is "Will my son live? Will my husband live? Will my wife live?" and then to ask how much damage will be done. Then one sees the pathway of recovery. It can be a very difficult, long and arduous journey. At some stage, for a young person, education obviously will play a very central role in his or her recovery and adaptation. The witnesses say there are very little or no supports in the schools. Are they saying some teachers should be educated in this area? I assume a clinical specialist is needed, as opposed to a teacher, to assist a person on their educational journey after an acquired brain injury. There was a reference in the speech to the need for an educational aspect in this for teachers; a need for education for teachers and educators on ABI as part of their training. Is this being suggested for every teacher or just some individual teachers? Is it really a clinical issue that needs a clinician with a particular competency as opposed to an actual teacher?

On the broader area, the family have had a difficult journey. It has probably challenged the family, brought it together, perhaps tore it apart. I do not want them to discuss that here. However, obviously it can be hugely traumatic not only in the physical context but in the emotional and social context of a family, when this hits them. What other areas does the family think the State and the health services need to address to help the family unit and address the pressure under which people are when dealing with this? Where are the real pinch points? Where are the State or the health services not stepping up to the mark? I know there are deficiencies in lots of areas and the family have made that clear in their presentation. What are the really key areas that keep them together, keep them going, keep them supported? Where are the real deficiencies?

Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

Go raibh maith agat, a Chathaoirligh. I wish to join the Chairman in welcoming the Devlin family and Dr. O'Doherty here today. I am a parent. I am also a brother. I recognise in the witnesses here the fact that Conor comes from a wonderful family. There is no question as to what made Conor the young man he is, in being able to cope and to come here today. It is such a brave thing to do. Listening to his mother, and his brother, I can see that all of this is so much a part of his recovery. I salute the family for it. It has been a wonderful experience meeting with them today.

Perhaps Dr. O'Doherty could help us further on the areas that the family is highlighting. The system is like so many other areas. This is a particular cohort of people, a number of people. We speak here on the last day of February of every year about rare diseases. There are so many disease issues around the country that are not provided for because there is such a small number of people directly affected. Perhaps there is a co-relationship here. What numbers does Dr. O' Doherty think would be presenting from a paediatric circumstance in terms of ABI? I understand and appreciate well the distinction between the needs of children and younger people as against the adult experience of ABI. Given what Catriona, Conor and Paul have highlighted here this morning, is there better provision for the adult who presents with ABI? Is what Catriona, Conor and Paul are highlighting here today something that also has an application to some extent within the adult cohort of people directly affected by ABI?

In Catriona's contribution, she highlights the fact that all of the specialties that might be required might not be available locally. Can we identify if these are available at least on a State-wide basis and are accessible? Accessibility would be the critical thing even if it cannot be available in our immediate backyard. Can Dr. O'Doherty give us an expanded picture in terms of her knowledge of the area from a practitioner's point of view?

It is clear from the strength of the contributions made and the spirit in which they are made that they are not about making any change in Conor's circumstances today. This is about helping those who may tragically find themselves in the same experience. The motivation behind it is absolutely heroic. I ask the Chair if the committee could undertake to forward the combined contributions of our guests this morning to the Minister and to the Director General of the HSE and ask them for their respective responses on what has been highlighted not only to us as a committee and that it would go forward to both the Department of Health and the Health Service Executive? I would propose that we would do that.

I would be anxious to hear what Dr. O'Doherty would say in respect of the areas that I have highlighted because that will inform us in terms of our respective individual lobbying over the period ahead. I wish to say, in conclusion, that the family make such a compelling case that none of us can afford to ignore it. While we are sitting here today, for any of us we could be sitting where Conor is tomorrow.

Jillian van Turnhout (Independent)
Link to this: Individually | In context | Oireachtas source

I too wish to join in welcoming the witnesses here today and thank them for their presentations. I felt quite emotional when they were giving it and I am only listening to the story. I cannot but begin to understand how emotional the family must feel. The story raised many issues for us. However, what I really respect the family for is the fact that they also brought forward suggestions. In our role as the committee dealing with health and children, we now need to do something and channel that.

I was very interested when Conor was speaking on access to speech and language and psychology services and supports in his local community because it is something that really must be developed more. Conor mentioned how his mother had at times to fight for those services. My background is in children's rights.

From this and in campaigning for children's rights I have learned that securing rights for children is often about the pester power of parents. The reason I want children to have stronger rights is that parents will pester and ensure their children secure these rights.

I am interested in learning a little more about this issue. All of us deal with issues such as delays in obtaining speech and language services. While there is a pathway into more general services, in the case of children with an acquired brain injury these services must be highly specialised if they are to deal with their needs. I would like to understand more about this. While I support Deputy Ó Caoláin's view that we should write to the Minister for Health, it should also be noted that the Minister for Children and Youth Affairs and the Child and Family Agency have a major role in ensuring the availability of dedicated services for children. I do not want the establishment of Child and Family Agency to make it more difficult for the National Rehabilitation Hospital, for example, to access and line up these types of services for patients leaving the hospital. This is an important issue.

The provision of supports for children and young people is critical. Acquired Brain Injury Ireland obviously does not have a separate section for children. The ripple effect of acquired brain injury on a family, to which Paul referred, is a very important issue. One needs to know what language one should use and what one should ask. I thought of my father who had a stroke about two years ago when I was listening to the presentations. While everyone speaks about access to services, relatives of people who have had a stroke do not know what services they should ask for. Acquired brain injury is similar in that it is not a condition for which people are prepared and there is no lead-in period. People must deal with the issue suddenly. I admire what the witnesses have done in advancing this issue.

It is good for the joint committee to hear recommendations and suggestions. We should pursue these with the two Departments that come within the ambit of the joint committee and seek to ensure clear pathways are available for children and their families who find themselves in these circumstances. The provision of community supports and the ability to access them, as appropriate, are critical because these are longer-term services.

I was interested in Conor and Paul's comments about school. I will need to think about them because they had an impact on me. Conor's remark on not wishing to be known on the basis of how he was before and after the accident was very insightful. We must be cognisant of this issue and find a way to allow children and young people to be who they are. I thank the witnesses very much.

Colm Burke (Fine Gael)
Link to this: Individually | In context | Oireachtas source

Some of the questions I intended asking have been asked. I thank the witnesses for their comprehensive presentation. If one were to pick out one area that would have an immediate effect in terms of assisting someone who had a similar experience as they have had if it were prioritised, what would it be? As we heard, acquired brain injury arises not only as a result of road traffic accidents but also from brain tumours. This is important because people who are diagnosed with a brain tumour are extremely frightened and need to find information.

We learned that there are only six inpatient beds for people with an acquired brain injury. Does Dr. O'Doherty regard this number as adequate and, if not, what would be an appropriate number of inpatient beds? Given the delay in accessing services, I ask Dr. O'Doherty to outline her views on the number of beds that should be provided. If one were to increase the number of beds, would it be difficult to find staff with the expertise required to deal with such patients?

Catherine Byrne (Dublin South Central, Fine Gael)
Link to this: Individually | In context | Oireachtas source

I thank the Devlin family for their presentation and the stories they recounted. It is a great privilege to be a member of this committee because every now and again members have an opportunity to meet people such as the Devlin family who share the trauma they have experienced. The joint committee makes decisions on health and submits recommendations to Ministers. The stories told by our guests were touching and moving. Conor and Paul are blessed in having such an extraordinary woman as their mother. As a nurse, she also has an insight into matters which other mothers would not know about.

Conor's comments about not having a place of his own in hospital where friends could visit him and he could talk on a one-to-one basis set alarm bells ringing in my head. A couple of weeks ago, I visited a presentation on the new national children's hospital at which the design team was announced. A group of young people attended and made a presentation on their experiences of hospital as teenagers. I am glad the new facility will have single rooms and rooms where young people such as Conor and Paul will be able to spend time together and will not have to put up with having a baby in a cot crying beside them or having to go to bed at the same time as younger children. These issues are very important. We must review and change the way in which the health system operates, especially for people who require long-term hospital care. These types of facilities should be available in all hospitals, although I accept that this may not be possible in the current circumstances.

Ms Devlin provided an excellent description of the health services and her constant battle to secure the services Conor needed, which involved knocking on and beating down doors. I thank Paul for his honesty. He opened a door for many of us who are aware of the experience of patients but may not understand what goes on outside of the that. The support Paul showed for his brother helped him to recover. I do not mean to be patronising but Paul and Conor are both handsome young men. If I had two lovely girls of their age, I would send them in their direction.

Sandra McLellan (Cork East, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

I agree with Deputy Byrne's final point.

I thank the Devlin family for coming before us and sharing their experiences. It is obvious that they are a very close family and very supportive of each other. They articulated the position extremely well and laid out clear solutions for the joint committee to address. They also highlighted the problems of accessing services and information.

Many of the issues I had intended to raise have been addressed. I will, however, raise a few points. Ms Devlin stated that waiting lists for admission and assessments are very long and add to the stress of a difficult situation. How long are the waiting lists?

Conor articulated his experiences extremely well and said he was very frustrated and constantly tired. How did he cope when he returned to school? Did he go back to school full-time or part-time? Was he provided with a special needs assistant? How did his friends cope with him and how did he cope with his friends?

Paul's presentation was excellent. We tend to forget how these types of trauma affect family members and Paul gave members a real sense of how his brother's experience affected him. Are there any specific services, for example, counselling or training, that should be made available to family members? Were such services provided to Paul?

When school authorities or special needs assistants request training to deal with students with acquired brain injury, are these requests met and how long does it take before such training or services are provided? Should training be provided to classmates of a child who has an acquired brain injury? Is any such training provided or is information given to classmates when a child is reintegrated in school after suffering a brain injury?

I thank the Devlin family again. We are all on the same page on this issue.

Michael Lowry (Tipperary North, Independent)
Link to this: Individually | In context | Oireachtas source

I thank the Chairman for meeting the Devlin family some months ago and offering them an opportunity to appear before the joint committee. I also thank members for the interest they have shown in this issue.

I thank the committee members for the interest they have taken in the subject and the contributions they have made.

I became aware of this issue when Ms Catriona Devlin rang me shortly after the accident. She was frantic with worry and hugely distressed. She was very anxious because she could not access services. As a mother, she knew that Conor needed support and she wanted back the Conor that she had. Then her training and qualifications as a nurse obviously kicked in. She knew particularly that there were interventions that would improve Conor's situation. At that stage I do not think that any of the family realised that with intervention he could have made such progress.

The reason they are here today is to point out what happened to Conor. He was extremely ill - he had life-threatening injuries. Because of his mother's persistence he got access to services and today we can see the benefits of that. That is the most important lesson to be learnt. There are other children of Conor's age who have similar accidents and are not as fortunate as Conor. We have a responsibility and an obligation to young people to fill the gap in the service.

This is a very powerful story. Today the family have given a concise view of what happened. It has been very informative, constructive and helpful. The recommendations made today are ones the committee should incorporate in its report. The committee should use its influence to ensure these recommendations are brought to the attention of the HSE and to the Minister to ensure we get an improvement in these services.

Deputy Catherine Byrne spoke about two lovely girls. Just before we came I spoke to Paul and Conor Devlin. I said they were looking fine and dandy - very cool with their shoes and hairstyles. Let me assure Deputy Byrne that Paul is quite busy. We might arrange an interview at a later stage.

The important thing is that the committee follows up on this issue and uses its position to get an improvement.

John Crown (Independent)
Link to this: Individually | In context | Oireachtas source

I am very sorry I missed the presentation. I heard a quick report from the staff in my office. I was detained in the hospital this morning. I know the presentation was very moving and wish the family all the best.

One of the key issues in addressing head injuries is to have appropriate acute treatment to minimise the medical consequences when they occur. This country is a disaster for it; it is an absolute nightmare. I recently spoke to a neurosurgeon who is emigrating and who was unburdening himself of his concerns about the system. We should not have hospitals that are designated as trauma centres if they cannot deal with a head injury; it is that simple. Having people going from a roadside accident, an acute haemorrhage at home, an act of violence or a sport injury to a hospital which cannot deal with a head injury, and then awaiting acceptance and transfer to another institution is all wrong. This is a terrible system.

I have previously hinted about it before when I have said in this committee and in the House that we need a fundamental review of our neurological services. Sometimes the stuff that happens as a result of a head injury could have been ameliorated, prevented or reduced in its intensity, severity or consequences if it had been handled in a timely and expeditious fashion. I believe the system right now does not do that.

Mr. Paul Devlin:

I thank Deputy McLellan for her question. I did not go for any counselling. My mother wanted me to go but I did not want to go. I wanted to keep it all to myself because I was worried about my parents and Conor.

Mr. Conor Devlin:

I was asked about school. I started back in Rockwell and was all guns blaring to complete my junior certificate because I did not want to be compared to anyone else. I just wanted to be normal Conor. I started back on half-days and returned to full days after a week. I was so upset in school. I used to be fairly intelligent - I am not saying I was a genius. I used to listen in class and be able to pick up what was being said, but after about five words I was completely lost. I had an SNA once or twice a week, but only during transition year. I felt I was different and was being looked at through different eyes by the teachers and everything. I moved schools because I did not want to be seen as accident Conor as opposed to normal Conor.

Jerry Buttimer (Cork South Central, Fine Gael)
Link to this: Individually | In context | Oireachtas source

Has the move been good?

Mr. Conor Devlin:

Yes, thank God.

Ms Catriona Devlin:

I will pick up on what Conor has said with regard to our experience with the schools. In fairness, everybody was very willing to help, but I think there is a lack of knowledge and that goes back to where training will need to be brought in. Some of the problems Conor was experiencing related to feeling that his friends were looking at him differently. However, one's perception of oneself following an ABI is very different. We were very nervous about him moving schools because we thought he was, as he said, jumping from the frying pan into the fire. That was typical of parents. He wanted to be who he was and who he is. He is an amazing young guy. He has put in a lot of work himself. He did not want the accident to determine who he was.

He played rugby. I listened to Senator Crown. In rugby there is a lot of work being done with concussion, injuries and all that. Obviously that was something Conor was strongly advised not to play. At 14 a boy has a perception of being a rugby player and being part of the team was very different. I underestimated how strongly Conor felt about it. Everything on this journey has been about time. From the time he got the accident "time" was a word I hated because I just wanted to know. As a nurse, I knew how important it was to get the services. I felt a window of opportunity to put the work in. Conor's needs might be very different from somebody else who sustained a head injury. However, I know Conor's needs were specifically in the area of psychology and that was something we could not even avail of privately.

We were asked about the different adult groups. I contacted any organisation in the directory that related to brain, including ABI, Headway and BRÍ. Conor was in such a bad place that I was making these phone calls at night when he was asleep. I think I contacted every Deputy in the country to see if they could get me help. As a nurse, that is not something I recommend, but I was desperate to get my son the help he needed. As a nurse, I thought the children in this country were well looked after and I was very shocked to find out the reality of the situation.

Dr. Sarah O'Doherty:

Deputy Kelleher asked about education, which is a key area. We need development in liaising with schools. I work very closely with the Department of Education and Skills. However, acquired brain injury is not even listed as a disability within its categories. When a child sustains an acquired brain injury, one is reinventing the wheel every time in terms of accessing a special needs assistant and other resources because there is no template for them. So it is necessary to explain every individual case to the decision makers about that child. Sometimes they do not meet the criteria laid down by the Department of Education and Skills and therefore miss out on resources and miss out on getting an SNA.

It would be very important if we could explain acquired brain injury at a more general level to educators by getting into teacher training colleges so that it is there on the map as a disability. There are varying degrees of acquired brain injury. It is a very individualised injury.

Schools have been fantastic to date. I have worked in my post for 14 years and it usually is the first time the school in question has ever received back a child with an acquired brain injury. The good news is that most children return to school. While that is where the majority of their rehabilitation will take place, schools do not have a background in providing strategies and supports to a child with an acquired brain injury. It would be wonderful if there could be a post of an outreach person who would be a link with schools. Such a person would visit a school when someone returned with an acquired brain injury to educate the school and support it with regard to a child's changing needs as he or she is in education. The big difference with children with an acquired brain injury when compared with adults is their needs change with development. Disabilities and problems can occur later on or can become more evident when a skill is required or the system changes and more pressure is put on the child. Something may not have been an issue at the age of four, but suddenly a teenager is presenting as being disinhibited or unable to process information or not finding their way around a new school. It must be a service that can adapt and change to those emerging disabilities. To revert to the education piece, that person also could provide information at a more general level, as well as supporting individual schools and children with plans. I would envisage that as a key area of development and I thank Deputy Kelleher for raising it.

As for other issues raised, Deputy Ó Caoláin asked about numbers. Another issue is that we actually have no figures in Ireland with for the incidence of acquired brain injury or head injury. No data are being collected and, at present, we rely on figures from the United Kingdom or the United States. Approximately 4,000 to 5,000 children present in hospitals in Ireland with a head injury. That could include children who do not have acquired brain injury. Of those children, using British figures, approximately 400 to 500 will have a brain injury of a moderate to severe nature. Again, however, the language there is confusing because mild traumatic brain injuries were mentioned and these are concussive injuries or ones in which the child may actually be fit to go home on the same day. In this context, "mild" does not mean mild outcome and those children also need following and services. I suppose that in the region of 400 to 500 children are in need of services with a brain injury every year.

Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

I wanted to get a sense of whether adult provision was something to which Dr. O'Doherty is exposed or on which she is in a position to comment. While this meeting is highlighting the paediatric need, is there a comparable falling down and under-provision in respect of the adult experience?

Dr. Sarah O'Doherty:

There are huge differences between the needs of children and adults with acquired brain injury. To refer back to that developmental piece and that changing nature of acquired brain injury, I see children as a neuropsychologist to ascertain their needs and to help make plans and pathways for them when they leave our service. They inevitably will return to that service at some point because their needs will change with development. As their brains mature and expectations of them change socially, emotionally and educationally, they will return to our service to be reassessed and re-evaluated. This does not happen in the adult services. There is a need for such an ongoing service for children, as well as a flexible and adaptive service into which children can bounce back at any time to avail of those services. We are not really set up for that at present. The place where I work operates as an inpatient service only and we are trying to cover an outpatient service. Again, on a wish list, an outpatient service for paediatrics that is staffed by paediatrically trained experts would be invaluable.

Colm Burke (Fine Gael)
Link to this: Individually | In context | Oireachtas source

On the question I raised of inpatient beds, there are only six such beds. What is Dr. O'Doherty's view in this regard? Is this adequate?

Dr. Sarah O'Doherty:

It is not adequate but, in response, were we to increase the number of beds, we would need to increase the staff numbers as well.

Colm Burke (Fine Gael)
Link to this: Individually | In context | Oireachtas source

If Dr. O'Doherty had a choice in the morning and wished to improve services, what does she think would be the appropriate number of inpatient beds to have for a population of 4.6 million? That is the question I really am asking.

Dr. Sarah O'Doherty:

A document was produced by the National Rehabilitation Hospital in 2009 as part of the submission to the national neurological rehabilitation strategy. It was suggested then that 20 beds would meet the needs. The new National Rehabilitation Hospital is to start construction next April and there is provision for 12 inpatient beds within that hospital. I suppose we will be obliged to consider increasing staffing levels.

Catherine Byrne (Dublin South Central, Fine Gael)
Link to this: Individually | In context | Oireachtas source

On a lighter note, I would like to say to Deputy Lowry that I said "If I had two lovely daughters". I am afraid they are a little bit older than Paul and Conor so it would be known as baby snatching. I do not believe it has been done at this committee but I say "well done" to the witnesses. I really enjoyed what they said.

Jerry Buttimer (Cork South Central, Fine Gael)
Link to this: Individually | In context | Oireachtas source

Deputy Byrne, this is not Lisdoonvarna. I thank in particular Paul, Conor and Catriona Devlin, as well as Dr. Sarah O'Doherty. I thank them most sincerely for their touching and powerful testimony this morning. As a committee, members appreciate their honesty, their bravery and the campaigning zeal they all have. One point that members can take from this morning's meeting is that the witnesses' story is shared in other houses nationwide. Deputy Ó Caoláin has made a suggestion on which the joint committee will reflect. We will put together a response to both the Minister for Health and the Minister for Children and Youth Affairs, as well as the two agencies, namely, the Health Service Executive and the Child and Family Agency. The joint committee will follow up with them to ascertain how it can help to prolong the battle to get the points made by the witnesses this morning. Thereafter, the joint committee will reflect on the replies before we ascertain what we can do next. I thank the witnesses again most sincerely. I thank Deputy Lowry for bringing this issue to the joint committee's attention. I genuinely thank Paul and Conor for their attendance. They have a wonderful mum and they should appreciate her. Well done.