Joint Sub-Committee on Mental Health debate -
Tuesday, 13 Jun 2023

Services and Supports for People with Attention Deficit Hyperactivity Disorder: Discussion

An Cathaoirleach

Before we get to the main item on today's agenda, the minutes of the sub-committee's meeting of 9 May have been circulated to members for consideration. Are they agreed? Agreed.

Our topic today is a consideration of issues relating to services and supports for people with attention deficit hyperactivity disorder, ADHD. To enable the sub-committee to consider this matter, I am pleased to welcome Mr. Ken Kilbride, CEO; Dr. Sonia Morris, board member and senior clinical psychologist; and Dr. Kate Carr-Fanning, board member, ADHD Ireland.

I am also pleased to welcome from the Changing Lives Initiative, Miss Christina Riordan, project manager, and from Archways, Dr. Sean McDonnell, deputy CEO, and Mr. Hugh Doogan, CEO.

Witnesses are reminded of the long-standing parliamentary practice that they should not criticise or make charges against any person or entity by name or in such a way as to make him her or it identifiable or otherwise engage in speech that might be regarded as damaging to the good name of the person or entity. Therefore, if their statements are potentially defamatory in relation to an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative that they comply with any such direction.

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, either by name or in such a way as to make him or her identifiable. I remind members of the constitutional requirements that they must be physically present within the confines of the Leinster House complex to participate in public meetings. It will not be permitted for a member to participate where he or she is not adhering to this constitutional requirement. Therefore, any member who attempts to participate from outside the precincts will be asked to leave the meeting. In this regard, I ask any members participating via MS Teams to confirm that they are on the Leinster House campus prior to making a contribution.

To commence our discussion I now invite Mr Ken Kilbride to make opening remarks on behalf of ADHD Ireland.

Dr. Kate Carr-Fanning

I thank the Chair and members for the invitation to appear today. We welcome the attention being given by the committee to this important issue of mental health and ADHD. Who are ADHD Ireland? We are a national representative organisation for those with this condition. Our mission is simply to make life better for all those affected by ADHD. This year, we will deliver more than 400 activities to support our community. We will receive more than 6,000 contacts from members of the public. Our website will have more than 250,000 visits, all delivered by ten exceptionally motivated and passionate staff, consisting of six whole-time employees and our board and volunteers. As a section 39 organisation, we receive more than 80% of our funding through the HSE.

ADHD stands for attention deficit hyperactivity disorder. It is a neurodevelopmental condition which means the brain has developed differently. Currently, more boys than girls are diagnosed, with prevalence somewhere between 2% and 7%, decreasing with increasing age. In Ireland, there is no guidance for clinicians working with those with ADHD on what good ADHD assessment or intervention looks like.

Regarding child services, ADHD diagnosis falls under the remit of the child and adolescent mental health services, CAMHS. This is a service for both ADHD and those with moderate to severe mental health concerns. Using data from my own service, Lucena Clinic CAMHS, there was a 54% increase in referrals between 2006 and 2021. For ADHD, this is likely to be driven by parents noticing differences when home-schooling their children during the Covid pandemic. It is also from young people themselves self-identifying after viewing content on social media and following increased awareness and acceptance of the condition.

A limitation of having ADHD under the remit of CAMHS is that of waiting list prioritisation. CAMHS waiting lists are largely populated by children awaiting ADHD assessment, due to the fact that urgent mental health issues are of course prioritised. The HSE has recently been funding waiting list initiatives. These are advertised as temporary contracts, making suitable recruitment difficult and retention of any gains difficult. In addition, although children on waiting lists have benefited from speedier assessment as part of these initiatives, the use of the waiting lists as a key metric by the HSE for how CAMHS teams are functioning is an ongoing issue. Once these children have been assessed, they then require supports, and demand for intervention within CAMHS far exceeds capacity.

All disciplines are understaffed on CAMHS teams nationally when compared with the recommendations in the A Vision for Change document. Social workers staff in Lucena Clinic CAMHS is at 37% on average across the teams. Despite this, I note from data available from my CAMHS that those with ADHD were 5.5 times more likely than those without to have a referral to Tusla. Psychology staffing in Lucena is at 40.5%, and that ranges from 23% to 53% across teams. This means there is reduced access to ADHD assessment and intervention.

Children with moderate to severe mental health concerns like depression, anxiety, obsessive-compulsive disorder, OCD, psychosis and eating disorders will be prioritised for intervention over the ADHD cohort. It is common that only medication is available to ADHD children in Ireland.

Of note is the assessment, diagnosis, management initiation, research and education, ADMiRE, team in Linn Dara CAMHS, which is a separately staffed ADHD-specific team in CAMHS. Consideration should be given to extending this model across services. CAMHS provides intervention for moderate to severe ADHD only. There is a lack of clarity on where those with mild presentations should be supported, with many of these children falling between services.

A further issue with current service provision is the segregation of child services in Ireland, with each having different remits. The co-occurrence rate is high between neurodivergences. For example, 30% of those with ADHD also meet the criteria for autism. This means that children currently need to access multiple services nationally and clarity on the presence of other diagnoses is very often needed before ADHD can be considered. This means that CAMHS relies on other services like the children's disability network team, CDNT, and the National Educational Psychological Service, NEPS, to provide assessment that falls outside its remit. Children are often on multiple waitlists at the one time, and are not receiving holistic care in Ireland.

In the UK, there are pilot neurodivergence teams established by the NHS, providing assessment and intervention for neurodivergence more generally. Strong consideration should be given to the establishment of similar teams nationally.

Of note regarding children’s services is the high prevalence of private assessment as a direct consequence of families being unable to access CAMHS in a timely way. Private assessment is currently unregulated in Ireland and the quality of these assessments varies considerably.

Mr. Ken Kilbride

Regarding adults with ADHD, using internationally accepted figures, there are at least 110,000 such adults in Ireland today. There are no exact figures on how many of these are getting a formal diagnosis and support, but we expect it is less than 10%. ADHD is now known to persist into adulthood, with approximately 65% of children continuing to have features, with 15% meeting the full diagnostic criteria. It is also known that adults have higher rates of marital breakdown, unemployment, substance misuse, anxiety and depression and lower life expectancy, which can be up to five years.

Recently, ADHD Ireland did groundbreaking research that was funded by the National Office of Suicide Prevention, NOSP. It was conducted in partnership with University College Dublin, UCD and the HSE. It showed that in terms of suicide risk, 20% of all adults with ADHD have attempted suicide in their lives; 50% have self-harmed in the past; and 10% consider suicide as an option going forward. These results are in line with international studies that have shown that ADHD has elevated risks for suicidal behaviour.

Apart from the impact on families and lives, there is an ongoing cost to Irish society in general. Research shows that the socioeconomic cost to Ireland each year for adults with ADHD is €1.8 billion. Reasonable estimates show that 15% of adults getting treated by the HSE for mental health conditions will have undiagnosed ADHD. We as a society are overpaying for ignoring this condition and we will continue to pay €1.8 billion each year until we do pay attention to it.

ADHD Ireland works as hard as it can to support adults with the condition and we work closely with both UCD and the HSE to develop what can be seen as world-leading initiatives. For instance, in November 2022, the Minister of State at the Department of Health, Deputy Mary Butler, launched our new adult ADHD app. This already has 10,000 downloads. It is one of the few evidence-based apps worldwide and was delivered as a true partnership between ourselves, UCD and the HSE.

We recently launched the understanding and managing adult ADHD programme. This is a six-week workshop series, combining psychoeducation on adult ADHD with acceptance therapy. It has been developed to address the lack of services available for adults with ADHD in Ireland and as an early intervention within the stepped care model. Again, it is a collaboration between ADHD Ireland, UCD and the HSE's national clinical programme for adults with ADHD.

We run what we like to call the world's largest support group for adults with ADHD every second Tuesday. We will continue to do so and continue to call it that until someone proves differently. We also run webinars, social activities and much more for adults.

Purely anecdotally, we have seen a wide range of personnel in the HSE and the community mental health services being overwhelmed by adults looking for ADHD assessment and treatment. We are hearing that some clinics are reporting that up to a third of new referrals are now for ADHD. Although those waitlists are likely to have been screened previously by mental health services, having oversubscribed adult mental health teams serving as a gateway for this service is unsustainable. Getting a diagnosis privately, even if one can afford it, is also onerous, particularly if medication is required here in Ireland.

I will summarise with some key takeaways. ADHD is a serious condition, and without assessment and treatment it can have serious lifelong consequences. However, when it is picked up and treated earlier, outcomes are generally good.

The prevalence rate for ADHD is 5%, which equates to one child in every classroom. The socioeconomic cost of adult ADHD is €1.8 billion per annum. There are very limited assessment and treatment routes for adults in Ireland. The CAMHS system needs to be overhauled for all children with mental health conditions, with consideration given to the removal of ADHD from CAMHS and the establishment of specialist teams for ADHD in Ireland or neurodivergent teams. We must develop national protocols for the assessment of ADHD and guidelines for ADHD intervention in Ireland. Private assessment must be regulated. ADHD Ireland looks forward to working with this committee, relevant Ministers, and all Members of the Dáil to ensure that services are adequately resourced, that they are rebuilt as required and that each person with ADHD in Irish society can live meaningful, happy, productive lives. Gabhaim buíochas.

An Cathaoirleach

I thank Mr. Kilbride and Dr. Carr-Fanning for the presentation. I now invite Ms Riordan to make her opening remarks on behalf of the Changing Lives Initiative.

Ms Christina Riordan

We welcome this opportunity to make a submission to the Joint Sub-Committee on Mental Health and thank the committee for it. Attention deficit hyperactivity disorder is a pervasive and impactful condition that can have a profound effect on many aspects of a child's life. These issues often persevere into adulthood resulting in ongoing mental health problems, higher levels of unemployment and higher risk of offending and incarceration. Young people with ADHD are twice as likely to come from socioeconomically disadvantaged areas. New diagnoses of ADHD have risen in recent years across all age groups. ADHD accounts for more than one third of referrals to child and adolescent mental health services in the Republic of Ireland.

National and international guidelines from the World Health Organization, WHO, and the National Institute of Health and Care Excellence, NICE, recommend high quality group-based parent programmes as a first course of treatment for young children with ADHD. Unfortunately, this treatment is currently not available to many families. For children with ADHD or queried ADHD, there are often lengthy waiting lists for assessment and limited treatment options offered. The focus in many instances is on pharmaceutical treatment.

The Changing Lives Initiative is an innovative community-led intervention programme for ADHD. The programme was delivered and evaluated through a three and a half year EU-funded project involving partners in the Republic, Northern Ireland and Scotland. The EU-funded project worked with more than 2,000 families in Louth, Belfast and western Scotland from late 2017 to early 2021. The programme targets families with children aged three to seven who demonstrate behaviours consistent with ADHD but are often too young or have not had access yet to formal assessment and diagnosis. Potential families are identified through health, educational and community services, or can self-refer to the programme.

Three large-scale evaluations were conducted as part of the EU-funded project, with the results demonstrating a significant and sustained reduction in ADHD-related behaviours; a significant and sustained reduction in other emotional and conduct problems; improved parenting skills and functioning; reduced parental stress; and high levels of parental satisfaction with the intervention.

On foot on these evaluations, the Changing Lives Initiative has successfully completed detailed assessment to be one of the first five interventions included in the new What Works Ireland Evidence Hub launched last month by the Department of Children, Equality, Disability, Integration and Youth. The evidence hub includes programmes which demonstrate improved outcomes for children and young people across the five national outcomes for children under Better Outcomes, Brighter Futures.

Throughout the EU-funded project, the Changing Lives Initiative partners engaged with the statutory health services North and South around sustainability and roll-out of the intervention. At the end of last year, funding was secured from HSE mental health operations for an initial pilot roll-out of the Changing Lives Initiative programme in counties Louth and Meath. The service began rolling out in January this year. There has been an overwhelming response from statutory and community services and families to the programme.

We believe the Changing Lives Initiative, the results of its evaluations, and the potential benefits of further roll-out of the programme, have great relevance to the work of the sub-committee. This highly successful community-led initiative has a proven ability to improve outcomes for families and has the potential to provide a positive solution to current gaps and shortages in services for children with mental health or neurodevelopmental issues. The initiative is heavily aligned with achievement of the national mental health policy, with potential to contribute to 11 recommendations in the Sharing the Vision Strategy 2020–2030.

The value of this intervention is as follows. It provides treatment in line with international best practice, World Health Organization recommendations and National Institute for Health Care Excellence, NICE, guidelines; it is responsive and effective; it provides early identification and intervention; no diagnosis is required; there are no waiting lists; it provides high levels of satisfaction; and it has the potential to reduce waiting lists, improve outcomes and reduce the need for further treatment. Discussions with HSE mental health operations around further expansion of the programme have been very positive but large-scale roll-out and ongoing funding will require wide-ranging support from all stakeholders, including Government.

Before we conclude, we wanted to ensure we captured the perspective of families in our opening statement. A parent who availed of the programme during the EU-funded project has kindly offered to share her story. She has given me permission to read her words today and I hope I can do them justice.

I am a parent to two incredible, wonderful boys with ADHD. And I can tell you wholeheartedly that parenting ADHD is a privilege. It’s not the type of parenting that I imagined I would do, and coming to terms with it in the beginning was difficult. But to step into my boys’ shoes and view the world the way they do has changed my perception of many things.

As we all do as parents, I have worked tirelessly behind the scenes to find a different way of teaching so that my children can be on par with their peers, academically, socially and emotionally. I needed to find a way to encourage their independence and their abilities. Like the ability to listen and follow instruction, or the ability to stay focused and finish the task at hand, the ability to ride a bike or the ability to understand his role within a team sport and not take over! I learned early on to stop trying to fit them into society’s expectations. And instead, I changed my way of life to flow with theirs.

So now, my boys are thriving. They are able. They are intelligent, funny, empathetic and popular amongst their peers. People stop me in the street to tell me how polite, friendly and helpful they both are. And like every other child, they both have dreams of conquering the world.

I tell you all this today because it was the Changing Lives Initiative that brought me to where I am. We went from crèche to crèche as we struggled with behavioural issues. We had half-day school days for months as I worked with the school to ease them into a settled routine. We had movement breaks and sensory rooms. We had meltdowns and classroom evacuations. We had the endless birthday parties to which they were never invited.

Then I was blessed with a space as a parent on the Changing Lives Initiative programme. The strategies that we were given within the programme had such a massive and positive impact on our lives at home that it gave me hope again as a mam. I finally felt empowered as a parent. Because of the tools I was given from the Changing Lives Initiative, my boys advanced from fulltime special unit access to 90% mainstream, the Primary School saw such a turnaround in my eldest within 4 years that they awarded him a never-before-given plaque for courage for embracing his uniqueness and unapologetically being his wonderful self every day.

It was the Changing Lives Initiative that gave me the strategies to encourage that confidence and self-belief in my son. He is now in full-time mainstream in Secondary School, academically ahead and voted most popular kid. I now feel that no matter what comes my way as a mum, I can tackle it. Because of the programme, I feel equipped and confident, and the relationship I now have with my 2 boys is unbreakable. And nothing matters more to me than that.

Completing the Changing Lives Initiative programme gave me the confidence to go forth and re-educate myself in the world of special needs, so I could become a supporter in my local area for other parents who are struggling. We need more programmes like this made available in every community, so that we all can reap the benefits of early intervention.

An Cathaoirleach

Thank you. Before I invite members to speak, I apologise to Dr. Morris for calling her by the wrong name. I thank Ms Riordan for her contribution. I will now invite the members of the sub-committee to discuss the matter. I call Deputy Hourigan.

Deputy Neasa Hourigan

I thank everyone for being here this morning. I thank Ms Riordan for that last piece. For any parent who has kids with different needs, that was a very moving statement. I suspect that everybody in Ireland probably has somebody with ADHD in their lives - I know I do. I will start at the beginning.

One of the most striking things that Mr. Kilbride mentioned in his statement is that there is no national protocol on how we assess ADHD or guidelines for intervention. Could he expand on that? How have we reached that point? There is a very high prevalence rate of ADHD, whether it is 2% or 5%. That is a very high prevalence rate for something that we have no national protocol on. That might lead into a conversation about private assessment. Perhaps the witnesses could expand on that.

Mr. Ken Kilbride

I might refer to Dr. Morris, who has the clinical expertise. There is variance in terms of the prevalence rate. We have gone in the middle, at about 5%. That equates to around 230,000 people in Ireland. There are a lot of people out there with the condition, including children and adults.

Dr. Sonia Morris

The situation is not unique to ADHD; it is neurodivergence more generally across Ireland. We do not tend to develop national assessment protocols for all clinicians to follow. Subspecialties and subdisciplines will develop their own policies. For example, the Psychological Society of Ireland, PSI, is currently developing ADHD assessment guidelines, but they will only apply to the psychologists under the society's remit and they are guidelines, so it will not be compulsory to follow them. At the moment, anybody can assess for ADHD. There is nobody out there to stop people assessing patients, even if they are not qualified to do so. How assessments for ADHD are conducted will vary from clinician to clinician. It will also vary within the public system. There are different practices across CAMHS teams, even within Lucena, despite the fact that we are under the same umbrella at the moment. There is no standardisation of practice because it is determined by the team itself and, more likely, the consultant who is heading up that team and his or her own preferences for assessment. These things are also dictated by the demand that is placed on the service and the pressure for these assessments to be done quickly to get children off the wait list. Without national guidance, the temptation is to have substandard assessments, especially within the private sector.

Deputy Neasa Hourigan

In the statement there is some reference to mild ADHD as opposed to co-morbidity or people who might have much more complex issues. What would a standard protocol look like? What would the witnesses like to see? What would be useful to clinicians in terms of assessment? I am trying to get a sense of whether it is a case of the Department of Health or the HSE issuing a protocol. What groups would that be issued to? Would it go to community healthcare organisations, CHOs, to particular clinicians or to schools? What would the witnesses expect to see if it was working? Is there anywhere in the world that is doing it right?

Dr. Sonia Morris

As I mentioned in my opening remarks, in the UK the NHS is trialling neurodivergence teams. Those teams have a remit for ADHD across all presentations of it, including autism, dyslexia, dyspraxia and any functioning of brain difference. Because the co-occurrence rate is so incredibly high, it means that there is one service providing all the assessment and intervention for each child. In my mind, that is a functioning system. Replication of that in Ireland would be beneficial. At the moment there are separate teams and services providing intervention and assessment, depending on the presentation and needs of the child. There could be a child who is on the wait list for NEPS for their dyslexia assessment, on the CDNT wait list for their autism assessment or assessment of need and on the wait list for CAMHS for ADHD. As the members are aware, across the country the wait lists for all of those services are incredibly long. Looking at NEPS, most schools only have around two assessments per year. How they divide that among the children must be torturous for them. Depending on the CDNT, the waiting time could be anything from a few months to years. It is the same with CAMHS. That means that kids are never getting the holistic care that they need when they need it, which is in the early years.

Deputy Neasa Hourigan

I was talking to a parent yesterday who is looking for a particular assessment. They will be waiting for two years for that and the child is five. I want to lead on to where that interacts with things like private assessment. If we had a strong protocol that was applied within the public sector, setting out the standard and the requirements, I presume that would have a knock-on effect in respect of the recognition of a diagnosis. I was very struck by the fact that the clinicians do not need a diagnosis. We are moving towards that. I want to come back to that point, but I think we still live in a world where a lot of doors, resource hours or whatever it might be are opened by a diagnosis. If we had a strict protocol, or at least an instructive one, would it force private assessment to that standard?

Dr. Sonia Morris

On the note of needing a diagnosis, ADHD is also unique among neurodivergencies in that there is medication management involved. To access that medication it is important that we have accurate identification of whether it is ADHD.

For ADHD access to diagnosis is vitally important, particularly if the individual wants to obtain medication. If there were a strict national policy on assessment, I think that would empower parents to demand better assessment from their clinicians. It is also important to have knowledge of what a good assessment looks like. At the moment, there is no national guidance, and parents do not know. They pay large sums of money for whatever the assessment might be and then find it is rejected by CAMHS when they try to go public for their medication.

Deputy Neasa Hourigan

Do we have a sense of the size of the cohort? I know a number between 200 and 300 was mentioned. How many people in this country are on medication for ADHD?

Dr. Sonia Morris

Almost everybody who attends CAMHS is on ADHD medication.

Deputy Neasa Hourigan

Do we know the number?

Mr. Ken Kilbride

No. That is one of the challenges we face. I would have been able to pick up the phone and speak to various clinicians. The range for the 60,000 children would be approximately between 20% and 50%. Within that, medication would probably be quite a high percentage. Of the 60,000 children, between 20,000 and 30,000 might be in the system. More than likely, between 30,000 and 40,000 are not. There are far more children out there with undiagnosed ADHD than there are in the system being treated.

Deputy Neasa Hourigan

I am aware there is a global discussion around access to some of those medications. There are shortages in some countries. We could be having a different conversation if we were to have more accurate numbers in front of us, which is a shame.

An Cathaoirleach

Would anybody else like to respond to Deputy Hourigan's previous question?

Deputy Neasa Hourigan

I was just about to move on to the Changing Lives Initiative and how a diagnosis is not required to access services. That is really interesting.

Ms Christina Riordan

I might defer to some of my colleagues. The programme was born out of a recognition of that gap, and families awaiting a diagnosis and assessment. There are reasons clinicians might defer and hold off on a diagnosis because of comorbidities and other things going on. The programme we offer is a behavioural intervention and does not require a diagnosis of ADHD. It involves a screening programme. Parents would fill out forms with standardised measures around their child's behaviour. We want to ensure the programme matches the needs of those families and parents and they are reporting behaviour by their child consistent with ADHD. However, a diagnosis is not necessary for them to access the intervention.

Deputy Neasa Hourigan

Does anybody else want to make a comment on that?

Dr. Sean McDonnell

I would not disagree with anything that has been said about the diagnostic process associated with the condition. From our point of view, there are certain characteristics associated with ADHD, and which, when they present, enable us to identify it fairly easily and early. ADHD has to present across multiple domains. It is associated with inattentiveness and hyperactivity, as has been mentioned. Early on, we were picking up large numbers of very young children demonstrating that pattern of presentation and receiving very little care. ADHD is highly comorbid. Even if we were only treating the comorbidity, that would lead to a general improvement in the overall function of the child and family. We agree there is a need for further improvement in assessment, but early intervention on presenting symptoms is equally important.

Deputy Neasa Hourigan

Does that mean not waiting for some kind of clean diagnosis but looking at people's behaviours and seeing if they can be helped?

Dr. Sean McDonnell

Yes. Children are presenting with this pattern of symptomology earlier and earlier. It is being picked up earlier and earlier. As a consequence, these behaviours have more and more time to become embedded. Relations between parents and child can become quite fractious and coercive as a consequence. It is difficult. The earliest intervention in psychoeducation for parents is to understand where the behaviour begins and the condition ends. That is hugely important. While it is important to get a proper diagnostic framework, a treatment option to address the symptomology early is equally important.

Deputy Neasa Hourigan

That brings me to the broader question about the current placement of ADHD in CAMHS. The Changing Lives Initiative appears to be approaching the condition from the ground up. It appears to be identifying the reality and then deciding to work with people. On the other side, as Dr. McDonnell has said, it is really important that people have access to diagnosis and medication. On one hand, we are talking about ADHD as a neurodevelopmental issue and not necessarily a mental health issue.

Is there then a natural conflict as regards its placement in CAMHS? Should we be moving towards those neurodivergent teams and the model suggested by the witnesses? Would anyone like to talk about that placing of ADHD in a mental health setting?

Dr. Sonia Morris

One of the reasons it is placed within CAMHS is because CAMHS is staffed by those working in child psychiatry. To avail of medication, the service needs to be overseen by psychiatry. There is no other public service for children at present in Ireland which provides that service so it needs to be placed within CAMHS. There is no alternative, unless an alternative is established.

Deputy Neasa Hourigan

Okay.

Ms Christina Riordan

It is not a case of either-or. In the context of the inverted pyramid of mental health services, and the filtration down of awareness, self-help and lower level interventions, we are placed at community-level primary care services. There will always be children that will need to filter down into those more clinical services but if robust intervention is put in at that community level, and early intervention and early support are provided, the number of children who will filter down into clinical services will inevitably be reduced. For us, it is not either-or.

Deputy Neasa Hourigan

Obviously, the community health organisations, CHOs, will have to step up. Maybe we should explore whether clinicians are attached to CAMHS exclusively and if something a little more broad should be available, such as the neurodivergent teams. What role do institutions such as schools have to play in moving people towards the representatives' service or services in general?

Dr. Sonia Morris

ADHD Ireland has an excellent relationship with the school system. We provide an accreditation programme, which Mr. Kilbride will speak to.

Mr. Ken Kilbride

We find the prime age for getting an ADHD diagnosis is from eight to 12. Primarily, what we find is the child is going into a social setting that is different from home and his or her behaviours in school are different from other children in the class. Usually, one of the persons to pick that out is the teacher. We do anything we can to get in front of teachers in that regard.

One of the things to bear in mind in respect of that age group is that boys are diagnosed four times more often than girls. There is still the perception that ADHD is about ten-year-old boys bouncing off the walls. ADHD is primarily genetic. It is 50% boys and 50% girls. It is very important not only to find the boys who have ADHD but the girls. We find girls are particularly good at social masking and social camouflaging as they go through those years, which causes anxiety and depression. Again, it is very important to educate teachers to know what ADHD is. As I said, the 5% prevalence rate means one child in every classroom. There will always be one child with ADHD in every teacher's classroom throughout that teacher's entire career. Teachers do not get support in colleges on how to support a child with ADHD-----

Deputy Neasa Hourigan

That is my next question. Is Mr. Kilbride aware of teachers getting any kind of flagging? We have entered into a discussion with schools. Schools are starting to engage more with the issue of mental health, which is very welcome. In my area, there are things such as nurture rooms and very progressive policies that are fantastic but are we aware whether teachers have access to training in training colleges? Is this a matter ADHD Ireland might want to flag for parents?

Mr. Ken Kilbride

To quote what the Deputy said, they are "starting to", but any teacher who left college within the past five years did not receive training on this. We do lots of training for teachers. I always ask them, when they trained for four years to be a teacher, how much training they got to support that one child with ADHD who will always be in the classroom. The honest answer is zero to 30 minutes.

Dr. Sonia Morris

I used to work in the school of education in Dublin City University, DCU, when it was St. Patrick's College for teacher education. I experienced first-hand the overloaded curriculum those trainee teachers experience. We need specialist continuing professional development, CPD, once teachers are out of training, that can be shared among staff. It is not just about new teachers. It is also teachers who are currently in teaching positions who need upskilling on ADHD identification and support to address the stereotypical stigma often associated with ADHD and to ensure there are better supports and identification within the school system. As Mr. Kilbride said, it is often teachers who identify these things first.

Mr. Hugh Doogan

While Ms Riordan addressed the matter of parents in the opening statement, and they are obviously the primary educators and carers, one of the big elements of the Changing Lives Initiative programme are the professional information and awareness workshops. This relates to the point made regarding many of the teachers and early years educators.

We invite both teachers and early years educators into these sessions because their awareness and understanding of what ADHD is and what it is not is quite low, as it would be with people across the population. We have been struck at the demand from schools and early years service for those places, so much so that teachers will go to a three-hour workshop on a Saturday morning. There is definitely a need for professional development and capacity building for our educators, both in primary school settings and early years services.

Dr. Sean McDonnell

In addition, it is important to have consistency of approach across the domains that the child is operating in - both home and school. Teachers are extremely good at picking up children who are externalising behaviours, but ADHD presents both internalising as well as externalising behaviours. There is a series of strategies that can work to reduce the more pronounced hyperactivity and improve concentration. If that is introduced in both home and school, it would have a significant effect. At the minute, in respect of all conditionality, there is not enough education for teachers available. It is not the question of them not wanting it; it is not available.

Deputy Neasa Hourigan

Honestly, I have always found teachers so willing to do that extra training, even outside their hours. They are so willing to learn.

I wish to touch back on the issue of gender, in particular for this service. What is the gender breakdown? Is there a corollary for that younger cohort, that it is more boys than girls coming for services? Are there strategies to combat that and deal with the masking effect that girls might be doing? What is the gender breakdown of parents who engage with the service? Is it mostly mammies who do it? I kind of know the answer to that.

Ms Christina Riordan

I will start and then defer to Dr. McDonnell. On children coming to the programme, it is still a majority of boys but we have a strong cohort of girls. On the cohort of mammies versus daddies engaging in the programme, yes, there would be many mammies. We encourage both parents to come to the programme and we have quite a lot of couples on it. On this round of programmes, we have a strong enough cohorts of dads as well; the involvement is increasing. It is important to allow that space for both parents to attend and to support that.

Dr. Sean McDonnell

Obviously, there are more boys than girls presenting but the gap is closing. On who attends the parental interventions, women are still the primary group. However, more and more men are attending. Certainly during Covid when we were delivering programmes online, far more men were attending. I think there are still barriers that prevent men from engaging but we are getting more men. However, at the moment, it is still predominantly-----

Deputy Neasa Hourigan

Dr. McDonnell means male parents.

Mr. Hugh Doogan

Just to finish that point, Dr. McDonnell mentioned Covid. One of the things Covid opened our eyes up to was that online delivery of the programme can work. We evaluated that as well. According to the World Health Organization guidelines, the group parent programme setting is the best and that is usually face to face. However, the interventions we use worked very well online. In our current round or programmes, we are delivering four and one of those is online and working well. That obviously offers the opportunity for both parents to attend, often in the evening, when childcare does not become an issue, etc.

Deputy Neasa Hourigan

That is key. If we know those girls are out there, ultimately, how do we get them back in? I am on social media as much as everybody. I am fascinated where particularly women in their 30s and 40s say they just got diagnosed with ADHD, they describe it and loads of people in their comments say that they do those same things as well. How do we uncover that? There is a whole generation now of people who have lost out on services when they were younger who would probably benefit hugely from them now. How do we reach those, particularly women?

Dr. Sonia Morris

It is interesting in that many adults who go on to get an adult diagnosis of ADHD have been through the services as children and the diagnosis has been missed because they are presenting more with mental health concerns, for example, anxiety and depression. Undiagnosed neurodivergence is underlying and driving those. We need upskilling in schools with teachers, for sure.

We also need upskilling with clinicians, bringing in neuordivergence onto the radar of mental health commissions so that they are better able to identify potentially undiagnosed ADHD, in particular in the female cohort.

Deputy Mark Ward

I welcome the witnesses. I could have listened to the conversation all day. It was enlightening and fantastic to hear. I thank the witnesses for the work they do in the area of ADHD. I refer in particular to the low level of awareness. Things have moved on since the 1980s. I was a child who went through some services. I spoke to my mother recently and asked why I could not sit still and was always in trouble. I am still always in trouble, but I could not still. I was told I was the bold child in the class. I was not the only one in the class, but I was one of the bold children in the class. We were brought into different services for help. I was not bold at all; there was other stuff going on. Awareness has improved since the 1980s – I am showing my age. Deputy Hourigan touched on what we can do to increase awareness. The witnesses mentioned parents and teachers as being the two critical cohorts in terms of raising awareness. Can any more work be done on that?

Mr. Ken Kilbride

The biggest challenge with having ADHD is not having ADHD; rather, it is the low self-esteem and stigma that goes with the condition. Removing that would be positive. Our logo used to state "Support, education and awareness". We have now changed it to "Support, education and acceptance". It is necessary to move from awareness to acceptance.

I refer to the system around universal design. When children in classes get the services they need automatically because they are in a class, we will get to a situation that works for everybody. From our point of view, we need to move from awareness to acceptance. That is a job that will probably take ten years or so.

Ms Christina Riordan

Deputy Ward is right in that the understanding is moving on. Compared to when we started the project five years ago, the language around neurodiversity and understanding is improving. There is still a long way to go, but it is great to see things moving in that direction. It is about education and acceptance. While we work primarily with families, the work we do with professionals, teachers and educators is equally important in terms of increasing understanding. While we are a health project, it is a key piece that should not be put aside. It is about a holistic approach to ADHD.

Deputy Mark Ward

I was lucky enough to meet the witnesses in Archways recently. We could have a stand-alone meeting about all of the initiatives and programmes being rolled out. It is absolutely fantastic to see the work they are doing on behalf of people. We are speaking about the Changing Lives Initiative here today. I have a couple of questions on that. The pilot that was carried out in Louth and Meath in January seems to have been a great success. What plans are in place for a further roll-out of the Changing Lives Initiative? Most important, what funding is available and what steps are being taken to secure additional funding?

Mr. Hugh Doogan

I will ask Ms Riordan to talk about the success with the roll-out in Louth and Meath in January. I will come back in regarding funding.

Ms Christina Riordan

There has been a huge and overwhelming response from agencies, services and parents in Louth and Meath. We reached our target numbers for the year in terms of parents attending information and awareness sessions in the first six weeks due to the level of interest. We recently held an event to mark the roll-out of the programme and a number of parents talked about the impact it is having on their lives and those of their children. Where it has been really successful, it has been welcomed. We have had great support from all of the agencies, including CAMHS, primary care, schools, the early years sector and all of the other infrastructure including the counselling in primary care services, CIPCs, and child and family support networks, CFSNs. There is a recognition of the need for and the benefit of the programme.

It has been very well received and we have hit the ground running. Programmes are up and running and full to capacity.

Mr. Hugh Doogan

I will follow up on the point on funding. The work we have done in the initial roll-out, as part of the INTERREG EU-funded project, is based on interagency collaboration between the community and voluntary sector and the statutory sector. We have had very good support from the HSE and Tusla and this continues in the roll-out in Louth and Meath. A positive element of the EU-funded project is that it has multi-annual funding. This has given us the time and space to get our teeth into the project, roll it out and evaluate it, which is critical. A summary report of the evaluation is included in the documents we sent to the committee and I hope members have had a chance to look at it. It clearly outlines the outcomes from the project.

We initiated a conversation with the HSE about rolling out the project further and looking at making it mainstream. Then Covid-19 happened and obviously the HSE's attention went elsewhere. In fairness, the executive has stuck with us and has been very supportive. The problem comes back to the fact that the roll-out in Louth and Meath has been funded for one year. We have started a conversation with the HSE. Deputy Hourigan mentioned the CHOs. Louth and Meath fall within CHO 8. We have made a proposal to extend the programme to all six counties in CHO 8, which are Longford, Westmeath, Laois, Offaly, Louth and Meath. These conversations are happening at present. This would still mean that only a small part of the country would have access to the initiative. As we heard clearly from the parental testimony in Ms Riordan's opening statement, every community in the country should have access to this programme. We have a long way to go but we are making progress. Our colleagues in the HSE value it as part of Sharing the Vision. Ms Riordan's opening statement referred to 11 recommendations in Sharing the Vision on which we are having a direct impact. We are playing our part and the HSE is being supportive. We are a little bit hamstrung with regard to the one-year funding. It is imperative that as a country we move beyond annualised funding.

Deputy Mark Ward

I agree 100%. It is something we have been calling for on this committee across parties and across politics. Multi-annual funding is very important to allow groups to be able to forward plans and put measures in place to achieve their goals. I congratulate the Changing Lives Initiative on getting the HSE and Tusla in the same conversation. Sometimes it is very difficult to get to agencies to speak to each other.

I want to go back to ADHD Ireland, which had a great deal of information in its opening statement. Dr. Morris mentioned that children with ADHD do not get the same priority in CAMHS as other people who might be attending the service. Will she elaborate on this? I would like to understand it a little more. What is the rationale behind it?

Dr. Sonia Morris

At present the remit of CAMHS covers ADHD and moderate to severe mental health issues. Moderate to severe mental health issues are one step below inpatient admission. These are seriously unwell children who are attending the service. Someone looking at a waiting list to decide who will get the next intake assessment will prioritise somebody with a potential eating disorder over somebody awaiting an ADHD assessment. The waiting list across Ireland for CAMHS is largely populated by those awaiting ADHD assessments. ADHD assessments should be quite lengthy. They should be comprehensive to determine whether the child has ADHD. This means fewer of these children are being taken off the waiting list because we need the time, space and conditions available to carry out these assessments. As long as ADHD is lumped in with severe mental health issues, we will see differences in prioritisation on the teams.

Deputy Mark Ward

At present 4,500 children are waiting for a first-time appointment with CAMHS, of whom 752 have been waiting more than a year for an appointment. What proportion of this cohort are children with ADHD?

Dr. Sonia Morris

I would say close to all of them. There is a ranking of urgent, semi-urgent and routine.

Where ADHD is concerned, unless there is something serious up with the kid or there are co-occurring mental health issues, he or she will be placed on the routine waiting list. It is largely populated by ADHD kids.

Deputy Mark Ward

Deputy Hourigan touched on this matter. Sometimes, we have to think outside the box. Can anything be changed? Can people with ADHD go somewhere else? Would Dr. Morris recommend a stand-alone service?

Dr. Sonia Morris

As the HSE is using the metric of kids on the waiting list to gauge the efficiency of CAMHS, it has been introducing waiting list initiatives across the country. Similar to what the Changing Lives Initiative said about annual funding, this takes the form of a one-year post or, in some instances, a six-month post, where the HSE employs a clinician to blitz the list and, hopefully, put in place processes so that the list does not build up again. The fact that this position is only a one-year or six-month post means that the gains are not maintained. It is potentially not attracting the right candidates either. Sometimes, the HSE is setting itself up for failure in this regard.

The problem with using the metric of waiting list numbers is that, once those ADHD kids are in the system, there is nothing in it to provide for them because kids with moderate to severe mental health concerns are still on the caseload and coming in off the waiting list. The solution is to have separate teams for ADHD so that there is none of the competition or prioritisation that currently has to happen within CAMHS. There would be a team whose remit was just ADHD assessments or, even better, neurodivergence more generally. Speaking as a clinician, part of my role on the team is handling ADHD assessments. I regularly see kids who are also potentially autistic or dyslexic or they do not have ADHD but are autistic and dyslexic. To ensure informed decision-making on my part, I need to know whether they are meeting the criteria for autism or dyslexia so that I can better interpret the results of their ADHD assessments. This means that I have to send them to a CDNT or NEPS for assessment before they can return to me to confirm a diagnosis. That is very frustrating for parents, who have already waited a considerable time to gain access to me to see whether they can get a diagnosis in the first place. Something needs to be done about this matter.

Deputy Mark Ward

Dr. Morris mentioned how desperate parents could sometimes see a diagnosis as a panacea, in that, once they got a diagnosis, the rest of the supports would follow. Many people who have been in touch with me accessed private diagnoses. Is the delay in regulating psychology under CORU having an impact on people not getting the appropriate care they need? As we saw on "Prime Time" recently, diagnoses were being made by people who were not qualified to make them and were not being regulated. Is the delay having an impact?

Dr. Sonia Morris

Absolutely, but that is not the entire story. Even if psychology was regulated under CORU, the practice of assessment across regulated clinicians would still not be standardised. Clinicians are free to perform whatever standard of assessment they choose. When a significant number of people are demanding private assessments and the private waiting lists are long, there is a temptation to shorten assessments or not to consider other neurodivergences or diagnoses that could be contributing to the features that the young person or adult is exhibiting. There needs to be not just regulation of the field, but also guidance on what good assessment is.

Deputy Mark Ward

Is that in progress? Has anything been set up to consider the matter?

Dr. Sonia Morris

The PSI has a working group of psychologists who are looking at discipline-specific guidelines. Often, such guidelines conflict with the guidelines being used by CAMHS teams. For example, there are PSI guidelines for good autism assessments, but these conflict directly with what assessment teams are being asked to do. What teams are being asked to do falls far short of what psychologists as a discipline have decided is a good assessment and what international best practice dictates is a good assessment. There needs to be a marrying up of what disciplines say is a good assessment and what the public system allows those disciplines to work on within the system.

Deputy Mark Ward

I thank Dr. Morris.

We were critical when we received the Mental Health Commission's recent report on CAMHS. In fairness, though, the Lucena CAMHS was top of the class in that report. Whatever it is doing, it needs to keep doing it. I have asked the HSE to examine that model and replicate it across other CAMHS areas. It is nice not to be critical constantly.

I want to ask a question about the adults and what happens. This also came up in the report by the Mental Health Commission. When children turn 18, a cliff-edge often happens. We launched a document yesterday in relation to extending CAHMS to a SIMS model by extending child and youth mental health to the age of 25. It is in Sharing the Vision: A Mental Health Policy for Everyone but has not been initiated yet. Would something like that help a young person who has ADHD so that when he or she turns 18, he or she will have continuity of care, rather than that cliff-edge approach?

Dr. Sonia Morris

There will still be that transition period; it is just delaying the inevitable. If CAMHS is raised to the age of 25, there will still be the issue of prioritisation of mental health concerns within CAMHS. Also, it does not sit right with me that there would be a six-year-old in the same waiting room as a 24-year-old. The level of care and intervention that a six-year-old requires will be vastly different to that of a young adult. Some extra consideration is needed as to whether that model would actually work in practice. It may be a matter of looking at other countries to see if it is functioning or if there is a better alternative. Perhaps even a separate young adult service would be preferable.

Mr. Ken Kilbride

My other consideration on that concerns the clinicians themselves. We find that these clinicians are either child psychologists or adult psychologists. There is therefore a gap between the ages of 18 to 25 which fits into neither category. At the moment, there are not enough psychiatrists in the child services or the adult services. Where will you get new psychiatrists for this particular service or training to do that? It is a challenge. It is a possible solution but there are things to be ironed out before it could be rolled out.

Deputy Mark Ward

What services are in place for adults with ADHD or even for adults who have not been diagnosed with ADHD and who are looking for a diagnosis?

Mr. Ken Kilbride

In terms of services through the HSE, take the example of CAMHS, of which there are 73 units around the country. At the moment, there are four clinics for adults with ADHD. Once they are fully rolled out, there should be another 12 or 13 across all the CHOs. They do not have funding for them this year. It may be next year or the year after. At the moment, unless you live in the catchment areas, which are in south Dublin, north Wicklow, Cork, Limerick and Sligo, you cannot access these services. At least 50% of the country does not have access to dedicated adult ADHD services through the HSE. Currently, we find that even if you want to go private there will still be long waiting lists. In Ireland today, if you want to be assessed as an adult, particularly if you want to get medication through a psychiatrist, it will not make a difference whether you have the money or not. You cannot get it.

Deputy Mark Ward

I will touch on that because Mr. Kilbride mentioned money. This is my last question and I know I probably went on a bit. In his opening statement, Mr. Kilbride mentioned that young people with ADHD are twice as likely to come from socioeconomically disadvantaged areas. I wonder where he got that information from. What can be done to address that?

Ms Christina Riordan

The statistic itself is from a Northern Irish report. It is also typical of what one sees in other countries. Dr. McDonnell may elaborate on this but the reasons for that are probably the complex genetic nature of ADHD. A child with ADHD is more likely to have a parent with ADHD. There are other factors, such as being able to access early intervention and supports and things like that as well. That may impact how many young people may present with issues around ADHD in disadvantaged areas.

Dr. Sean McDonnell

Children in these areas suffer greater disadvantage more generally. As a consequence, the likelihood is they will experience a greater level of difficulty and will find it more difficult to access any level of supports. It is just a function of how our socioeconomic system works. Those who are living in more disadvantaged areas consequently will suffer greater levels of lack of care.

Deputy Mark Ward

Has there been any move to have additional resources specifically on this issue placed in schools in disadvantaged areas, such as DEIS schools?

Dr. Sean McDonnell

In our evaluation, the cohort was pulled across various domains. The change effects were clinically significant across the domains. If you intervene early, with a level of consistent care and over time, you will be able to see significant changes in the presentation. That will bring about improvements not simply for the parent during the relationship but also in terms of how the parent views his or her ability to cope with his or her child and with his or her situation more generally.

These programmes have the capacity to reach far beyond the condition. It is empowering. As with any condition, for parents who are faced with a situation where they are dealing with a child who is experiencing difficulties, it can be extremely disempowering and it does affect mental health across the board. If we can offer some type of support which is productive and effective, going forward it opens the door for a greater level of engagement with more productive services generally.

Mr. Hugh Doogan

The DEIS schools we work with obviously have smaller class sizes for starters, which makes it easier for the teacher to specifically work with a child that may display conditions and symptoms associated with ADHD. The role of the home school community liaison, HSCL, that is attached to DEIS schools is critical in this as well in getting to the parents, who are often very hard to reach. The HSCL can be critical, so that is one of the benefits of the DEIS scheme. I think more schools probably need it. I speak to principals every day and who say they applied for the DEIS scheme and did not get it.

Deputy Mark Ward

There is probably another debate on the changing demographics and what the DEIS scheme needs now because I think myself it should be extended to other areas. I thank the witnesses for all their interactions.

Senator Annie Hoey

I apologise for missing the beginning of the meeting. I was attending another committee meeting across the way so am hopping from one to the other. I am particularly interested in the area of adults who have been diagnosed with ADHD. We have touched on this a good bit. I have a number of friends from whom the penny dropped when their children were going through services. We all know the story, yada, yada, yada. We know the diagnostic options are difficult because, as has been mentioned, even with money there are very limited ways to do that now. I notice online, whether it is due to algorithms on TikTok or whatever, a proliferation of online offerings of people being able to pay and go for a diagnosis. I assume many of them are legitimate options for people to go to and registrations can be checked. As experts in the area, do the witnesses have recommendations for people who do not currently live in one of the four catchment areas and who have come to this realisation and are really struggling? Perhaps they have been struggling their whole lives. I think in particular of women who went through a long period of masking. I do not know what it is about women in their 30s where the mask suddenly comes off in every which way in their lives. It feels to me, from anyone I spoke to, that once that realisation has happened, there is no going back. Obviously we tell people to research who they are giving their money to and all of those things. How do we support people if they do not live in one of the four catchment areas and are considering spending money? I assume a lot of them are legitimate but I do not know. As I get bombarded with advertisements, there is obviously a market for it. What are we doing to make sure people do not find themselves going down a route of a not-safe diagnosis because if a person wants medication they have to have their psychiatrist and so forth. Will the witnesses advise in that area?

Dr. Sonia Morris

At the moment, there is no safeguarding for bad diagnoses. The Senator mentioned checking the register. Psychology is unregulated. There is no register of psychologists who are fit for work and anybody could call themselves a psychologist and start working, which is a huge issue. Even within that, as not everybody is an expert in ADHD the standard of assessment varies considerably, not just within psychology of course but across disciplines. There is no safeguarding for individuals within that. It is clinical opinion, so if somebody tells a person that the diagnosis is ADHD and then the person goes somewhere else and is told that it is absolutely not ADHD, there is no recourse of action to get a refund of the poor assessment. There is no complaints process in the private sector either. Oversight needs to be established, whatever way that might look. There also needs to be a means for the public to be able to submit complaints against private practitioners and for there to actually be some repercussions for a poor standard of assessment in the private sector.

Senator Annie Hoey

We have discussed the regulation of psychology and there is stuff happening and I am not sure where all of that is at.

For the purposes of this topic, it is highly problematic. I have not come across anyone so far who has had a negative experience, as people have managed to go back to their GP or whatever. On the subject of GPs, there is an issue where we always have faith. I am particularly interested in adult women with ADHD. The issue of women not being believed in all sorts of medical spheres is well documented. I do not think there is anyone who does not know a woman who consistently went with pain, or whatever issue, and who was not believed. In this area it is particularly challenging. We hear throwaway comments about how it is a child's disease, how adults cannot get it, it is attention seeking and so on. It is also called a disease. We have lots of requirements around general practitioners. There is the CAMHS piece for children. What would be the ideal scenario? Is it an awareness piece for GPs? How do we get the primary care person to listen and believe women, in particular, when they say they think they may have ADHD? I have heard through the grapevine that a lot of people I know have had negative experiences. That is what has sent them down the more private route.

Dr. Sonia Morris

Across child and adult services, gatekeeping is a issue in accessing ADHD services. Mr. Kilbride mentioned the new adult ADHD network. Those new ADHD clinics have new established teams. Gatekeeping to adult mental health services is through the GP, and then through an adult mental health team to reach the ADHD team. People need to jump through a lot of hoops before they get to the team that can provide a diagnosis. It is not just about raising awareness. It is about looking at the system in place, and how people access that system. The Senator is correct to state that there is a self-referral process for many clinicians in the private system. For many of the psychiatrists, there is also gatekeeping through the GP. A GP referral is required to access a private assessment. Some work needs to be done with the GP community to look at their impressions of ADHD and the referral process. They also need support in accessing services for their patients. That is an issue. Some GPs might discourage somebody from going forward with an ADHD diagnosis because the path is either expensive, non-existent, or very lengthy.

Mr. Ken Kilbride

We also find that coming through our support groups in particular. It comes up regularly, where women come to the group to ask what they can say to their doctor and how they can talk to them. This can be also be found with children, in particular with girls. It is said that because she sits quietly in the clinic, and is doing okay in school, she could not possibly have ADHD. There is work to be done there. The other challenge is that while psychiatrists can do the assessment, there is also the upkeep of medication. When a psychiatrist gets a person stable on medication, he or she would like to transfer the person to the GP. There might be five in the country who do it. There is a lot of work to be done in getting GPs to help and support people with ADHD medication in Ireland.

Senator Annie Hoey

That is a low number.

Mr. Ken Kilbride

If it is five.

Senator Annie Hoey

I am sure that is tough for people listening in. There is a lot of talk from people in my circle. Finally, I want to ask about people who are steered away from pursuing this. I can probably guess what the answer will be. It seems crazy because we would never discourage people from getting any other diagnosis. We never dream of telling someone who may potentially have cancer that they would be better off to just leave it. It seems wild to me that this seems to happen in the mental health sphere, in particular with ADHD. There seems to be discouragement, even from some medical professions, against pursuing this diagnosis. It is suggested that because people have lived so long without it, they have no need to do that. How would the witnesses advise someone to go forward, who has received that discouragement, either from family, friend circle, or indeed the medical sphere?

As I said, once that penny has perhaps dropped and we have opened up the can of worms of self-realisation, it is very hard to put it away again. What do the representatives have to say about people proceeding forward when they are faced with resistance, possibly from the medical community but certainly from their own friends and circle? That is not even going into the resistance they themselves have, if they want to take that next step but are being advised not to do it.

Mr. Ken Kilbride

We have considered developing a workshop for people on how to talk to their doctor. It is that level of concern. When I talk to people about ADHD, I always say that if we got a euro for every woman who came to one of our support groups, particularly those aged from 40 to 45, who said they had been on anti-anxiety and anti-depression medication over the past 20 years and have just found out they have adult ADHD, we would not need funding from the HSE. It is that common. There is huge work to be done around awareness, particularly of ADHD in adults, and the fact they can have it and it can be assessed and diagnosed, especially in women. There is a big national job to be done on that.

Ms Christina Riordan

To go back to the early intervention perspective, we have introduced into our professional sessions in this roll-out of the programme a piece around women, girls and ADHD and how it might present differently. It is again about increasing awareness away from that typical presentation people see. A question we get asked all the time now is around girls and women with ADHD and that presentation. Awareness is a key thing among professionals and people themselves.

Senator Annie Hoey

There is a real sense of loss. Women I have spoken to feel they have lost their whole lives to this. They were told they were good girls and were diligent, when they were losing their minds trying to be good girls and doing all these things. They feel very betrayed. It is not anybody's fault; it is just how the system was. They feel they have lost their lives. A mourning piece is now happening for how their lives could have been different had something been picked up or had they not been conditioned, through the patriarchy or whatever it was, to behave in a certain way that little girls were very often told to behave, which created all those systems. Maybe that might be-----

Mr. Ken Kilbride

On the point the Senator made, we did a webinar last month on ADHD and grieving the life someone could have had. It was the most heart-rending outcry, to be honest. People gave their experiences of what their lives could have been like had they got a diagnosis as a child. It was heartbreaking.

Senator Annie Hoey

Hopefully, we will see the HSE on this, and not just in those four areas. I am obviously very focused on adults but it seems to be everywhere I move at present among my colleagues and friends. There just seems to be a dawning of something that was missed. As Mr. Kilbride said, these are very hard stories to hear. Some of these people have reached out to the organisations represented today and have received some support through not being able to get it anywhere else.

Mr. Ken Kilbride

To mention today's odd statistic, the ADHD hashtag has 20 billion views on TikTok. A lot of people are getting information from TikTok. We are certainly seeing many more celebrities coming out recently to say they have ADHD. The work ADHD Ireland has done over the past number of years has brought a lot of awareness to the issue. The Covid pandemic has certainly created awareness as well. We are facing - not the perfect storm - but much more awareness and the services are not there to match that at present.

Senator Annie Hoey

When awareness is raised, it is exactly what is hoped for but then that penny drops. People are very much in need of the resources of both organisations. I apologise. I will hop back out of the room again.

An Cathaoirleach

We have been joined by Senator Carrigy. Does he wish to ask a couple of questions?

Senator Micheál Carrigy

I thank the Chair for giving me the opportunity to speak. I am not a member of the committee but I was contacted by a number of schools regarding the organisations that are present today. I have been the chairperson of the Joint Committee on Autism for the past 15 months. We will launch our report tomorrow morning. I heard people chatting at this committee and I watched a piece earlier on screen.

The same words and issues are coming up that are basically parallel: early intervention, lack of professionals and assessments.

A couple of things came up from our discussions and one was quite stark. In respect of the PSI and with regard to the setting up of the CDNTs, no discussion took place with the HSE. We are not going to deal with any issues we have if we do not sit down, work and discuss with professionals in the organisations that are dealing with it on the ground. The HSE needs to wake up to that fact, to be quite honest.

Awareness was spoken about and that is similar with regard to autism and those on the autism spectrum. That is a job for us working in Leinster House and in government. We are working on it here in respect of an awareness campaign and an acceptance campaign. We need to do that. That needs to be led by the Government nationally across a number of areas in disability. It has been said here that many people are nearly afraid to go to their doctor in case they get a diagnosis. We need to inform society and society needs to accept that there are people in society who need these supports and there should be no stigma attached to it, whether it is ADHD or autism. I note that is something that will be quite strong tomorrow in what we are issuing.

There was a recent announcement from the Minister with regard to State counselling services. There are nine trial counties in the country. Ultimately, that will be rolled out, I would imagine, across the country. There is a lack of professionals as it is. What is the short-term proposal to support people? The reality is we do not have enough professionals qualifying through our third level institutions to deal with the waiting lists that we have already. We will now be giving extra supports within our primary schools. It is initially nine counties but that will be rolled out. Are there any solutions for the next four to five years, until those extra professionals come out of our third level system and into the public or even the private system, to give supports? What proposals would the witnesses be putting in place so that we have enough professionals to help those kids and young adults with ADHD?

Dr. Sonia Morris

In the system in general, there are many barriers against access to good ADHD assessment and intervention. We spoke at length about the location of ADHD within CAMHS and the pressure the CAMHS system is currently under with staffing levels and huge increases in referral rates. ADHD is constantly deprioritised within the CAMHS system. Even if there is an increase of professionals entering the system and HSE employment, you will still find that ADHD is probably getting a similar level of care despite the increased number of clinicians available.

As a short-term solution, we should be looking at making sure that ADHD assessment is prioritised within those systems. How do we go about doing that? It would probably involve setting up pilot programmes across the country to see if specialised ADHD teams or specialised neurodivergence teams are more efficient at providing early intervention to ADHD cohorts, with joint initiatives with systems already in place, and are speedier at providing assessments for these kids and adults so that they can access the supports they need with the diagnosis.

In Lucena CAMHS, because we are overloaded, we have found that collaborative working with community organisations relieves the pressures. There are many joint initiatives between ADHD Ireland and CAMHS. That is using the resources available to us. One of the first-line interventions for ADHD - according to the National Institute for Health and Care Excellence, NICE, guidelines - is parenting. That is what Changing Lives is doing as well for early intervention. CAMHS does not have the capacity to roll out parenting programmes for every ADHD child who attends its service, so we have relied quite heavily on ADHD Ireland to provide that on our behalf sometimes.

We can work together across and have a service roll-out of collaborations. However, in order to do that, ADHD Ireland would need increased funding. The staffing in CAMHS needs to be addressed as a matter of priority. I read out some statistics at the beginning in the opening statement to show that we are severely understaffed, with regard to social work and psychology in particular, across all CAMHS teams. Those are the disciplines that work quite closely with ADHD. All disciplines in CAMHS do, but a 5.5 times increased likelihood of ADHD referrals to Tusla, compared with non-ADHD attenders in CAMHS, is massive.

Moreover, to have social work understaffed is a huge issue. Psychology does a lot of the assessment and intervention work within the public sector. Rates vary against A Vision for Change by between 25% to 50% across teams with psychology staffing. That needs to be seriously addressed in the short rather than the long term

Mr. Ken Kilbride

I will throw in a quick pitch for ourselves. The Senator asked about the gap between now and when services will be available. We see ourselves as the leading provider of so-called psychosocial supports in Ireland. We run support groups. We could run more if we had more funding.

We run parenting courses like the Changing Lives Initiative, which are funded by the HSE, through CAMHS. Again, we could do more. We run awareness talks. I did an awareness talk for Childrens Books Ireland last week on how it can support people coming to its service. We could do more on that. We run social events. As Ms Riordan said, the children and families with ADHD are not invited to birthday party or play dates, so we run social events.

We hold public events such as talks. We held one such event in Cork last month where 160 people turned up. Again, we will do similar in Dublin. There is a webinar coming up at the end of this month on why girls are not diagnosed with ADHD and another one on ADHD and finance. This year, we will run about 450 events. We could run more. Everything we advertise is oversubscribed on the day booking opens. Like many organisations funded through the HSE, we have not received a core increase in two or three years, but demand has doubled in that time. The number of calls increased from 3,000 to 6,000. We will get 250,000 visits to our website this year. We are maxed out in terms of organisation. If we got more support, we could do more to support people.

Senator Micheál Carrigy

That is the core of what I am asking, in terms of the short term. The HSE has funded an information line staffed by AsIAm. TikTok was mentioned. Too many people are going online to look for information. They need to go where they can get the correct information and not where almost 75% of what they see is not correct. We need the Government and Department to support those working in community groups which are rolling out information sessions that give the facts to families, in particular. That is the idea behind initiatives such as a one-stop shop. They need to be in every county in order that people can be given the right path and correct information in terms of what supports are available. It is very similar to the work we have been doing over the past 12 months.

Mr. Hugh Doogan

With the Changing Lives Initiative, in our opening statement we spoke about the information and awareness sessions we ran for parents. A lot of that involved signposting people to other services and then introducing them to strategies they can put into practice as soon as they go home.

We may have glossed over something in our opening statement. On 31 May, the Department and the Minister, Deputy O'Gorman, launched the new What Works Ireland evidence hub. The Changing Lives Initiative was one of the first five interventions to be rigorously evaluated. There are two elements to that evaluation. One is the evidence behind it and the second is the cost. We sometimes talk a lot about the cost of X, Y or Z, but it has been proven that the Changing Lives Initiative is a very cost-effective way of intervening early. As our colleagues from ADHD Ireland have said, people will have to be medicated. That is the reality. However, medication costs a lot of money. In the Changing Lives Initiative, we are trying to get in early and try to avoid the need for medication. In some cases, that will not happen. Let us call a spade a spade. However, the cost-effectiveness of the Changing Lives Initiative is a critical part of the model we are proposing. It can be rolled out to communities at low cost.

Senator Micheál Carrigy

Early intervention is key.

Ms Christina Riordan

While investment in clinical services very much needed, investment in community and psychosocial services will ultimately reduce demand on clinical services. It is important to get in early at community level with interventions and supports that work in order to take the pressure off clinical services.

It is a different set of professionals who deliver psychosocial community intervention. They are not competing against CAMHS as it is a different set of professionals. There is scope with more investment to increase these services and really make a difference with community and psychosocial interventions.

Deputy Ruairí Ó Murchú

I welcome all of the witnesses. I thank the Chair. As Senator Carrigy knows, most Chairs have to provide me with a fair amount of leeway. I pay special thanks to Mr. Doogan, Ms Riordan and Dr. McDonnell. I apologise for arriving late. I had another meeting and the witnesses can throw stuff at me afterwards on anything I have missed. I should put on the record that my wife works for Archways and is involved in the Changing Lives Initiative.

There are two parts to my approach to this. There is what I have seen in my life and what I have seen used in our home, and there is what I have seen through the job we do and the various people who come to us. Where the Changing Lives Initiative is in operation it is sold by schools, community groups and sometimes by State services on the basis that at least it is an option that is there. None of us who have been in this room or in this building in recent years has not used ad nauseam the term "early intervention". We speak about it but we do not necessarily always see it.

The witnesses are looking at something that is working and that has helped families, particularly children with ADHD. It has been proven to do so, so it is a matter of rolling it out. This State has a big issue whereby we have pilot projects that work well which then get extended to too wide an area with too little funding and do not get extended to all areas. We then end up back where we started.

Senator Carrigy was Chair of the autism committee. One of the last interactions we had was with a team from Scotland on the system there. Everything with regard to autism and neurodivergence in general seems to go through CAMHS. On some level I would be happy to have no wrong door and one place where people could go but this does not matter if people cannot get their assessments. We all know when we are speaking about CAMHS and anything else that we are speaking about silos. An agency will say it can deal with one child but not with another. An agency will say that children do not necessarily fit its criteria and they should go elsewhere. We have a game of ping-pong. Many members of the autism committee spoke about the need to accept the fact we do not have all of the occupational therapists, speech and language therapists or services that we need. They said that we should see what we have and make an assessment on the best service we can provide to people. This is with regard to everything from assessment right through to therapies.

What are the opinions of the witnesses on the Scottish system? From what I have seen of the Changing Lives Initiative, it works best when dealing with parents who opt in. A large number of people are hard to reach. In some cases we will need far wider interventions. There is no silver bullet for this. We can speak about multi-agency approaches forever, but it is a matter of seeing them. I have thrown enough out there to allow the witnesses to begin an answer.

Dr. Sonia Morris

Our opening address called for a one-stop shop. I am not sure whether it is feasible through CAMHS. The NHS and HSE systems are very different with regard to the services available. They are not identical so we cannot apply the same principles.

CAMHS in Ireland is already oversubscribed and seriously under-resourced.

Deputy Ruairí Ó Murchú

I am not overly concerned. It is more that there was a one-funnel scenario. I accept that CAMHS in Scotland is a different animal than CAMHS in Ireland. We have a whole pile of separate tunnels and someone will do very well to get into one only to be told there is no room at the inn anyway.

Dr. Sonia Morris

That happens. The NHS has also trialled neurodivergence teams. Hull and Reading have teams that cover ADHD, autism, dyslexia and dyspraxia - basically, any neurodivergence or sensory processing issue. Those teams are multidisciplinary and are similar to CAMHS, but they only cover neurodivergences. It is a lovely model of service provision. I spoke about how there was significant co-occurrence. I am sure that the Joint Committee on Autism did not escape talking about ADHD, given that there is a 30% overlap between the two.

Deputy Ruairí Ó Murchú

I do not have to leave my house for that. The comorbidities – autism with ADHD and so on – are the main issue.

Dr. Sonia Morris

As the Deputy alluded, there are kids who are trying to access multiple services to get all of their needs met. It would be lovely if there was a service that addressed all their needs in the one place and there was a single team to provide all of the supports they needed as opposed the current system where the teams cannot or will not speak to one another.

Deputy Ruairí Ó Murchú

We are under-resourced. I accept that, if someone only has ten places to deal with ten people, he or she will logically try to do the best for them, but it means that someone will fall off the cliff.

Dr. Sonia Morris

Yes. I would welcome a separate one-stop shop for persons with ADHD.

Deputy Ruairí Ó Murchú

Dr. Morris spoke about neurodivergences being treated separately from CAMHS.

Dr. Sonia Morris

Yes.

Ms Christina Riordan

We are actively considering a single pathway in early intervention. We are looking at another European-funded project and we are working closely with statutory services, particularly in Northern Ireland, on a neurodevelopmental early intervention pathway so that, regardless of the issue, once it is flagged, there is a one-stop shop where someone can access support programmes and community interventions that support and meet his or her needs. The discussion has been more about clinical services and diagnoses, but something that would be more achievable in some ways would be an initial one-stop shop at community level that people would be directed to to access appropriate programmes and the supports they needed and, from there, be directed into the most appropriate clinical or disability services for their needs. This would be a good solution and is something we are actively examining. Parents would not have to try to find the right doorway to land at.

Mr. Hugh Doogan

Dr. Morris mentioned two trial sites in the UK. Were they Reading and Peterborough?

Dr. Sonia Morris

Reading and Hull.

Mr. Hugh Doogan

The model that Ms Riordan has just described, and the one we are examining, can be found in Peterborough as well. It involves one pathway instead of the many tunnels the Deputy mentioned.

Deputy Ruairí Ó Murchú

A one-stop shop and no wrong door is missing across the board. I have no problem with accepting that there will be deficiencies or there will not be full teams in the disability sector, but we can definitely make an assessment of what we can offer, particularly in terms of the community-led initiatives Ms Riordan referenced. That they are group initiatives is a major factor when families are involved. It provides them connectivity with other people who are going through the same thing. That is vital. Where people cannot necessarily access services where particular issues are concerned, all that can be done is to put them in touch with a group in the hope that someone who has been there and-----

Mr. Hugh Doogan

That point is critical. We have evidence of groups that, years after doing their 20-week programmes, are still meeting for a coffee or a walk in the park to stay connected and to share progress and challenges. As Mr. Kilbride and his colleagues will be aware such networks are critical.

Deputy Ruairí Ó Murchú

The witnesses have put it in a very straightforward way.

Could the witnesses, from their point of view, sum up very quickly what needs to happen? What is the recommendation that needs to come out of this, and what is it that the committee needs to follow up on? I might add that I just inveigled my way into this committee, but I am well used to doing that.

Dr. Sonia Morris

For us, the key take-home point is regulation of practice with regard to assessment, that appropriate assessments are taking place and that parents and families are not being exploited in the private sector. A critical eye needs to be cast over service provision nationally to see if we are providing the best service possible for our ADHD-ers across a lifespan. If we are not, how do we improve that, and how do we ensure that ADHD kids are not being deprioritised within the CAMHS system? How do we ensure there is equity of access to services as an adult across the country, and how do we make sure that those services are adequately staffed? Then we need to look at community programmes, making sure they are adequately staffed and not just funded for short periods of time for pilot projects or for short-term posts, and that they are-----

Deputy Ruairí Ó Murchú

A proper roll-out.

Dr. Sonia Morris

We need a proper roll-out and proper staffing with regard to whole-time equivalents, WTEs, that are not just temporary contracts across community services and within the HSE as well, which is what the trend has been for the past number of years. These would be some of my key points, along with acceptance-raising across the country.

Mr. Ken Kilbride

I would like to make another key point, in terms of adults as opposed to children. If one is identifying and assessing adults with ADHD, because they have been mistreated and misdiagnosed, the potential to save hundreds of millions a year in costs for the HSE means that the business case is ready to go.

Mr. Hugh Doogan

I made a point earlier on, and I do not think Deputy Ó Murchú was in the room at the time, but I will quickly make it again. We are currently rolling the programme out in Louth and Meath with the funding we have received from the HSE. We put a proposal to the HSE to expand that current roll-out to the rest of the counties in CHO 8. That six-county roll-out comes in at under €500,000 per annum. This is scalable. We are not talking big money here, and it is a model that can be delivered very quickly. We are not looking for the clinical professionals that I know there is a shortage of. These are psychosocial professionals who we can train up very quickly and deliver at scale.

I would like to echo once more the words of the parent that is in our parent testimonial: every community in Ireland should have this.

Deputy Ruairí Ó Murchú

It is the early intervention, and it is going to be cheaper, easier, and we may avoid the ambulance piece we need to do later, because we let it all fall into a mess. The witnesses all made the point with regard to the crossover with socioeconomic deprivation as well, so this is a vital piece in bridging that gap.

An Cathaoirleach

I have a couple of questions myself, if that is okay. I have been writing furiously here. There is so much that I want to learn from the witnesses and soak up today. A lot of the questions, like the one Deputy Ó Murchú just asked, was around finding out what the witnesses would do if they had a magic wand. They have kind of told us that.

I wanted to ask specifically about ADHD in children, and the characteristics or symptoms. I am not sure if "symptoms" is the right word, if we are trying to bring about acceptance. On the characteristics of a child with ADHD, how would a parent or teacher see that in a child? What would they be looking for? That is the first question.

Mr. Ken Kilbride

I might ask Dr. Morris to answer as she has a doctorate in this.

Dr. Sonia Morris

There are three different types of ADHD. There is ADHD attentive type, primarily; ADHD hyperactive-compulsive type; and then ADHD where both of those criteria are met. How it presents varies from child to child. There is great diversity of presentation. When one is looking at diagnostic criteria, there are a certain number of features that need to be met across each of those categories to reach diagnostic thresholds. How it might present in the home is dependent on the type of ADHD that the child meets the criteria for. If one is looking at ADHD hyperactive-compulsive type, what one would see is a child who would have loads of lovely energy, who would be enthusiastic about lots of different things, and who might move from one activity to the other very quickly because their interest does not hold very well on one thing.

They might be the risk-taker of the family, so they might be the one who climbs the trees. Some might find that need for movement very difficult, because movement is life for hyperactive, impulsive kids. Having to sit still for long periods of time at family gatherings or household meals, they might be the kiddie at the table who is having their meal standing up. There would be a similar type of presentations in the school. It would be the kiddie who makes the excuse to go to the bin in the classroom to pare their pencil quite regularly, or who needs to go to the toilet quite a lot because they just have this urgency or need to get that movement out of their body. They would also be the ones who are quite eager to answer questions even if the answer is wrong. The answer will pop into their head and they just have to say it so they might not be the kid in that classroom who is waiting with their hand up in the air.

Regarding the ADHD inattentive type kid, they are often described as having their head in the clouds and more or less looking out of the window because everything seems so interesting. Having to filter out all of the information going on around them is really difficult for those kids. It might be that the parent at home tells little Johnny to go upstairs and grab his football training boots, jacket and jumper and meet them downstairs in the car. The kid goes up with all great intentions but just loses half the instruction because they were distracted when the instruction was given. Once they got upstairs they saw their favourite video game on the table and decided to pick it up and have a bit of a play. There is that distractibility element and that is also present in the classroom. The teacher might have to repeat a question a few times because there is a kid in the class is fidgeting under the table and the kid is distracted and looking at that. They might be thinking about what they will do later after school and that might be so interesting to them that they are attending to the teacher in the classroom either. That is the kind of presentation, in a very broad way. It is obviously a bit more complex than that but they would be the types of things one would see.

An Cathaoirleach

Of course. If an adult has ADHD characteristics and does not even realise it him or herself, what would the family look out for or what would they see? Is it the same things?

Dr. Sonia Morris

Mental health conditions are the main things to look out for. The vast majority of undiagnosed adults, whether going for any neurodivergence assessment, have experienced mental health difficulties in the past and have been through the system before. If there is persistent depression, persistent anxiety, that is resistant to treatment one would want to consider whether something is underlying that with regards to ADHD or autism or something like that. The presentation is broadly similar but obviously at an adult level. It might be hyperactivity, impulsivity with regard to workplace relations such as quitting a job on the spur of the moment or going off travelling for a little bit instead of really thinking of the consequences. Trouble with finances is quite a common one because of impulse spending, gambling and things like that.

With inattention one might find a similar as to in school but in work meetings. Thankfully a lot of adults are steered towards careers that play to their strengths and that is often why we see a decrease in presentation in comparison to childhood, because adults know themselves where their strengths lie and follow careers that support them. Often the presentation is not as apparent. Somebody from the Changing Lives cohort mentioned externalising behaviours and internalising behaviours earlier. In adulthood, we see an increased amount of internalising behaviours; this feeling of restlessness or difference within the individual and not quite placing a finger on what that may be.

Mr. Ken Kilbride

In terms of the narrative around ADHD, we talk a lot about the challenges but we also need to talk about the strengths that go with the condition. The creative industries in Ireland are fuelled by ADHD. Most people with entrepreneurial genes will have ADHD. Looking at Olympic gold medal winners, they over-index for ADHD. There are musicians, film actors, and other people like that. There are strengths that go with ADHD and when a person knows he or she has it and knows how to manage it, it can be a positive.

An Cathaoirleach

That is really positive.

Ms Christina Riordan

One of the key things from our point of view for parents who are parenting in a different way, is building on those strengths and helping our children scaffold their development in areas where they may need additional support because they have ADHD. So many of the parents comment that it is just a different way of looking at things and a different approach is what is needed and a move away from that language of a deficit.

Mr. Hugh Doogan

That was well articulated in the parent's statement Ms Riordan read about it being a privilege to go with the children's flow and looking at the world in a different way.

An Cathaoirleach

Is the Changing Lives Initiatives just with parents of young children or does it involve parents of adults?

Mr. Hugh Doogan

Three to seven years of age.

An Cathaoirleach

On the connection between ADHD and addictions, do the witnesses find there is a strong connection between ADHD and alcohol harm, gambling or whatever?

Mr. Ken Kilbride

People with ADHD will overindex for substance misuse. The vast majority of people with ADHD are undiagnosed. However, they will see they are different from their peers, having more challenges in life around, as Dr. Morris was saying, leaving jobs, having more jobs, marital difficulties and conditions like that. They know there is something happening in their lives so they start self-medicating, primarily around alcohol and cannabis.

An Cathaoirleach

I find that fascinating. With my other hat on, I have a charity that looks after family members who have somebody they love with an addiction problem. I do not know an awful lot about ADHD but from what I am hearing today, it sounds like for adult children with addictions, there is some connection with ADHD. It is hard for parents to understand that impact.

Dr. Sean McDonnell

ADHD is extraordinarily problematic in terms of the development of peer support networks. At an early age, children with ADHD have difficulty developing such networks. They have a tendency to overwhelm other children in school during play or social activities and so can become quite isolated in school. That carries on and can lead to the development of and involvement in negative peer groups. That leads to exposure to some of the behaviours we talked about. They are more prone to getting involved in teenage difficulties, delinquent behaviours and early drug use. It is difficult with ADHD to know which comes first, the cart or the horse, but we know that very early on they have a tendency to experience social difficulties. If you can step in and inculcate social skills, it acts as a protective factor.

An Cathaoirleach

That is fantastic. I want to get an understanding of ADHD. Is it genetic or can it develop from trauma within the family? If there is addiction in the family or a traumatic incident has happened within the family dynamic, can it come from there or is it totally genetic? Is there any evidence?

Dr. Sonia Morris

There is a correlation between the experience of trauma and diagnoses of ADHD. ADHDers are more likely to have adverse childhood experiences. However, there is correlation and then there is causation. There is intergenerational ADHD and often that is undiagnosed. The difficulties of lack of diagnosis have been outlined well by our colleagues, with regard to self-medication and coping through substance misuse, which then leads to cases.

We know there is a strong genetic component with ADHD. It is neurodevelopmental and begins before birth in the womb so you are born as an ADHDer. Different childhood experiences, like traumatic brain injury, can look like ADHD but are quite different. Research is ongoing. There is a lot unknown about neurodivergence in general and the underlying causes. There is more to find out and huge studies in genetic mapping are going on worldwide. There is scientific consensus that the main contributors are genetic factors. There are environmental risk factors as well for presentation but whether those factors relate to how ADHD presents, as opposed to whether ADHD is present, requires more research.

Dr. Sean McDonnell

There are structural and functional differences in the brains of children and adults with ADHD.

These do change based on the influence of environmental inputs. No one is absolutely certain as to the underlying reasons or rationale for what gives rise to ADHD. We assume it is largely genetic, but we cannot dismiss the idea of environmental inputs.

An Cathaoirleach

Deputy Hourigan had to leave but she wanted to ask if there is a model for a programme for employers and, if so, how does this operate in the workplace?

Mr. Ken Kilbride

Not that we know of. We do have our own programme, Neurodiversity in the Workplace, and we will go out and talk to employers. A couple of commercial organisations are also providing supports. If the question is whether I can identify a programme that we know of that people could go to tomorrow, then I am afraid the answer is I cannot.

An Cathaoirleach

Okay. Is it inevitable that someone with ADHD will go on medication? Is it a necessity?

Dr. Sean McDonnell

No, it is not inevitable. It is often a choice. Families make this choice and often they do so based on what they perceive to be the educational needs of their children. Children with ADHD have a tendency to fall behind rapidly in their schooling. Parents are often of the opinion that medication will help their children to maintain themselves in the school and academic environment. Unfortunately, parents often engage in medication holidays, so they will give medication for short periods of time and then stop during break times. It is a parental choice but it is a medically-informed one. It is important to note this point.

Dr. Sonia Morris

Dr. McDonnell is correct that it is a choice. We also see many adults availing of medication management. One of the issues with service provision is that very few clinicians are available to prescribe to adults, whether privately or publicly. The demand for medication management from the adult population far outstrips capacity. Many children used to being medicated for their ADHD are also coming through the CAMHS system, but there is no capacity when they transition at 18 into adult services to continue that medication management. As Mr. Kilbride said, even though these people are stable on their medication and the dosages have not been changed, few GPs will take over their medication management. That is an issue.

What we tend to see in the context of medication is that those who meet the criteria for moderate to severe ADHD will avail of it. These are the kids who would have attended the CAMHS service and also the adult services being rolled out across the HSE. Medication supports school engagement because it targets inattentive types of behaviours and allows children to pay attention to lessons to give them the best chance to retain that information. It also supports them in private study and homework at the same time in the home environment. It is possible to go on medication holidays or breaks. This is medication that can be stopped with very few side effects as a result. We do, therefore, see kids who would take such medication during the school term but not during their summer holidays. It is a matter of parental choice.

An Cathaoirleach

What about adults?

Dr. Sean McDonnell

The medications currently available will constrain the symptoms or the presentation but, in the absence of medication, those will come back. None of the medications available are a treatment per se. They act to reduce the presentation. Once the medication is removed, the symptoms will come back. Often, they will rebound with an effect. The medications-----

An Cathaoirleach

The treatment aspect, therefore, is extremely important.

Dr. Sean McDonnell

The behavioural management element, to teach people how to manage these behaviours for themselves, is also important. It was mentioned earlier that ADHD presents serious challenges, but people with ADHD generally also have higher measures of intelligence quotient, IQ, than the norm. They experience difficulties in respect of executive function and decision-making. Problem-solving and decision-making, however, can be taught. It is not an innate quality of human beings to know how to solve problems correctly. Inculcating key skills for individuals at an early age can help. It is important to try to introduce behavioural management, given the medications themselves do not resolve the issue.

An Cathaoirleach

I have learned so much today. I cannot thank the witnesses enough for the phenomenal work they are doing.

I am definitely going to educate myself much more about this issue. As the witnesses have really conveyed today, the worry is around people who are undiagnosed, living with stress and anxiety and being unable to socialise. To be honest, it is devastating. The work the organisations are doing should be rolled out across the country. The one-stop shop and no wrong door approach are great ideas. All of the things that were brought up today are absolutely vital. When we are doing our report, we will certainly include the recommendations the witnesses have given us today. That is for sure. I thank all of the witnesses from ADHD Ireland and the Changing Lives Initiative for their assistance to the committee on this matter and for coming in today.

The joint committee adjourned at 1.26 p.m. sine die.