Joint Committee on Health díospóireacht -
Wednesday, 17 Jan 2024

Child and Adolescent Mental Health Services: Families for Reform of CAMHS

An Cathaoirleach

The purpose of today's meeting is for the committee to hear proposals from Families for Reform of CAMHS in relation to child and adolescent mental health services, CAMHS. To commence the committee's consideration of the matter, I am pleased to welcome Ms Hannah Ní Ghiolla Mhairtín, Ms Gráinne Morrison and Ms Emer Deasy from Families for Reform of CAMHS.

I will read a note on privilege. 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 also remind members of the constitutional requirement that they must be physically present within the confines of the Leinster House complex in order to participate in public meetings. I will not permit a member to participate where they are 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 members participating through MS Teams that prior to making their contribution to confirm that they are on the grounds of the Leinster House campus.

To commence our consideration of CAMHS, I invite Ms Ní Ghiolla Mhairtín to make opening remarks on behalf of Families for Reform of CAMHS.

Ms Hannah Ní Ghiolla Mhairtín

I would like to start by thanking the committee for inviting us in to speak today. As families, we often have a shared feeling of our children being forgotten and our families ignored so we cannot tell the committee how important this opportunity is for our group and just how crucial action and the urgent reform of CAMHS is.

Families for Reform of CAMHS is a new group that was set up at the beginning of last summer. Ms Morrison, Ms Deasy and I are just three of the parents involved. Behind us we have the support of a further 820 members. Our children are found in communities, neighbourhoods and groups right across Ireland. For most of our members, it was not until we went looking for help that we realised that mental health supports and a functioning mental health service is largely non-existent in Ireland, that children nationwide are being failed and our families are being left alone without adequate support at a time when we need it most.

In the past 12 months, reports from the Mental Health Commission and the United Nations Committee on the Rights of the Child have highlighted serious concerns about the insufficient and inadequate mental health services for children, portraying an overwhelmed and poorly governed system with inadequate staffing and resources. None of these concerns are new and were raised in the UN committee's 2016 report and in the Mental Health Commission's 2017 report. Not only are our families being let down but so too are the dedicated staff within CAMHS who are trying their best to help our children despite the system and not with the support of it. The Government and the HSE have acknowledged service deficits and yet we have seen no real reform or real commitment to bring about change. Children continue to suffer as a result.

In Ireland, there are approximately 4,400 children currently awaiting first-time CAMHS appointments. The collective number is stark. The reality for each of the 4,400 families on the waiting list, who cannot access support now when they desperately need it, is heartbreaking. It is hard to sum up the feelings you experience as your child’s mental health is deteriorating and you are unsure whether support will come too late.

Once you are in the door, however, serious challenges remain. Therapeutic supports are extremely hard to access and children are often only offered medication. We have families who were told their child would be discharged if they did not accept medication. We have families who have been discharged and not told about it. We have families who were left without support when weaning their child off serious medications.

Only 12% of our members have a care plan and key worker for their child. Some 35% of our members would like to make a complaint but have chosen not to because they are worried about how it would impact their child’s care. This speaks so strongly to the vulnerable position families find themselves in. It is so difficult to get into CAMHS in the first place that families feel they have to accept whatever is offered. We are reliant on CAMHS. Our children are reliant on a service that the mental health inspector cannot assure us is safe, that is not regulated and that you have to battle to gain access to and battle again to get any support beyond medication.

There are two key messages we would like to convey today. We are calling on the Government to urgently commit to and implement the Mental Health Commission’s 49 recommendations to reform CAMHS, including the regulation of CAMHS, and, second, to end the discrimination against autistic children and against children with intellectual disabilities in the provision of mental health services.

The official reply as to whether the Government will commit to the Mental Health Commission’s recommendations is that many of these reforms are being progressed under national mental health policies and HSE annual plans. While we have no issue with the policies and service plans in place, many of which for years have already set out commitments to the reforms we are now calling for, the reality is they are not being delivered. If the Government is truly committed to the reform of CAMHS, we urge it to publicly commit to the Mental Health Commission’s recommendations. These recommendations overlap substantially with the reforms our group is calling for and that, importantly, call for the regulation of CAMHS. In this regard, we welcome the proposed legislation by Deputies David Cullinane and Mark Ward that would regulate CAMHS under the Mental Health Act and ensure recommendations from the Mental Health Commission would be taken on board and progress monitored annually.

The second issue we would like to focus on is the discrimination experienced by autistic children and children with intellectual disabilities in mental health services. Some 85% of our members who have an autistic child said that having a diagnosis of autism has negatively impacted the service and support received by their child in CAMHS. Members mentioned that anxiety or depression was just dismissed as being part of autism rather than acknowledging and offering support for the actual mental health issues being experienced. This is deeply concerning to us. Anxiety, depression and other mental health disorders are separate and, importantly, treatable conditions. Denying a mental health diagnosis and denying mental health treatment on the basis of a child being autistic cannot be justified in our opinion and is completely discriminatory. This is not some unheard-of secret. Our members are being advised by their GPs, teachers, social workers, OTs and speech and language therapists to not disclose a diagnosis of autism because it is widely recognised as a barrier to gaining help from CAMHS.

One of the most concerning trends identified in our survey was that of autistic children with suicidal ideation being turned away by CAMHS. This is dangerous and the stories being shared are heartbreaking. Parents promise their children they will get them help and keep them safe and then are unable to do so.

Some 81% of our members who have children with intellectual disabilities have no access to any mental health service at all. Since September 2022, children with intellectual disabilities are no longer accepted by CAMHS but are to be seen by the specialist service known as CAMHS-ID. However, this service largely does not exist. There are only four to five partial teams in the country when there should be 16. Therefore, essentially, children with intellectual disabilities have been discharged from CAMHS to nothing and to no appropriate support.

If you are in an area with no team, you cannot be referred across to an area with a team.

Families have nowhere to turn and no timelines have been given as to when a functioning service, or even a stopgap telehealth service, can be put in place.

We welcome any questions.

An Cathaoirleach

Before starting with members, I thank the Sub-Committee on Mental Health, which is a subcommittee of this committee, for its work on this issue. We have met the Mental Health Commission. We have also received a response from the HSE to the report, saying it is mindful of the recommendations. I hope we can highlight and progress some of the issues the witnesses have raised.

Deputy Durkan will lead us off.

Deputy Bernard J. Durkan

I welcome our guests and thank them for their presentation. We all recognise and understand their annoyance, frustration and disappointment at the degree to which their issues and concerns have been addressed over recent years. We can only highlight their points again with the Department, CAMHS, the Minister and the HSE in whatever way makes it possible to focus on the issues that need to be addressed in the short term.

How long have the 4,400 families been on the waiting list? By how much does the shortest time vary from the longest?

Regarding access to supports within the service, families are being discharged without being told about these and are being left without support. Has any reason for this been given? We all believe the purpose of accessing a health service, be it accident and emergency, hospital or so on, is to bring attention to an issue, bring about a diagnosis and do whatever must be done to address it. The longer this situation continues, the more embarrassing it becomes and the more annoyed and frustrated people grow. Patients who need diagnoses are not getting them and are suffering as a result.

My final point is on autistic children. Autism is a condition that requires urgent and particular treatment and understanding. It is not something that can be ignored, dismissed or put on the long finger. The lifespan of a child is a short one. If attention is not given to issues as they are raised, the child suffers in the long term.

Ms Grainne Morrison

It is a postcode lottery and depends on which CHO someone is in, with CHOs 4, 6 and 8 being the worst. There is then some discrepancy in terms of who is accepted into CAMHS, with the level ranging from 38% to 81%. Of our group, 40% were accepted on the first referral and 25% had multiple referrals. Some – 22% - had to go to accident and emergency and 9% needed to go to their TDs to be admitted into CAMHS.

Taking this back to the very start, in most cases, parents will go to a public health nurse when their child is around two years old because they have noted a speech and language delay or some other form of delay. The public health nurse will refer them to speech and language therapy, but they could be waiting for one or two years for it, so they end up going down the private route. The public health nurse is the first point of call.

The speech and language therapist might notice that a child needs some occupational therapy because there are sensory issues at play. The parents go back to the HSE and ask it how long the occupational therapy waiting list is. They could be waiting for another year or year and a half, so they wait or go privately again. This is another cost on the families.

The occupational therapist might believe the child, when going to school, needs an educational psychologist’s report. The parents go into the school and ask the principal. The principal only gets one or two National Educational Psychological Service, NEPS, referrals per year, though, so the parents decide to get an educational psychologist’s report privately. That is another €1,000.

It goes from there. NEPS psychologists are the educational psychologists. I am sorry for going on, but I want to give the members an idea of the situation. The educational psychologist might identify that there is ADHD because the child has issues with concentration and cannot focus in school. An education psychologist cannot diagnose that, so they will refer the child to CAMHS. The latter will not take the child because the problems might be considered to be mild at that stage. The child then goes to a clinical psychologist in the private sector. That costs another €1,000. The clinical psychologist then refers the child back to CAMHS, which will say that the presentation is still too mild for the child to be seen by one of its teams. From there, the family will see if they can get the child another referral to a private psychiatrist, which costs another €1,000 and involves a further assessment.

This process starts when the child is around two years of age and could be going on until the child is 12 or 13. That lovely, beautiful little child will be negatively impacted the whole way up. Parents are financially impacted the whole way up. The child then gets into a situation where they are suffering from negative thoughts, depression and anxiety because they cannot concentrate in school or have sensory differences. They might be autistic when going into school. The child is managing and masking, but getting more and more depressed until it gets to a crisis situation, which sometimes occurs around the transition from primary to secondary school. Then the child might be self-harming, have suicidal ideation and will really be in a crisis situation. The parents will have paid thousands of euro and will have received little or no services from the State because other people might me more in need. It is just a disastrous situation for parents, children and families, and especially for autistic children. If they do get referred and get a place in CAMHS, we find that CAMHS will diagnose them as autistic and will refer them back to disability services. That is the sad situation.

Deputy Bernard J. Durkan

Over the years, we have all had to intervene in cases of the nature that Ms Morrison has described - and we continue to intervene - but it should not have to be that way. There should be a reaction immediately when the child is referred, and a determination made. I am concerned about the cases where the diagnosis is of a mild nature. Presumably, nothing happens then. Do we have any figures in respect of the ongoing situation after the child is diagnosed as being mildly affected? What happens in the context of their quality of life and their ability to interact with society in the best way possible? We have all seen cases where it has been determined that the child is able to interact, and the decision and the diagnosis is wrong. I know of cases where children have been arrested at a later stage, in civvy street, by virtue of the fact that nobody understood what their condition was. That surely should not be happening.

Ms Emer Deasy

That is the issue. Looking at the waiting lists for CAMHS, as Ms Morrison has already alluded to, many of the children on those waiting lists have ADHD symptoms and are waiting for a diagnosis. They tend not to be prioritised when there is a child with a chronic mental health issue that might present a more immediate threat to life. ADHD is not an immediate threat to life. Those children will get left on the waiting list for longer. As Ms Morrison outlined, their parents will go the private route. When they get into CAMHS, families think it is great and that they are going to get all the help they need for their children. Unfortunately, that is not the reality when children get into CAMHS. In 2019, the CAMHS operational guidelines suggested that each child should have a care plan covering both the family and the child and also that each child should have a dedicated caseworker. We surveyed our members. Of those who answered, 12% said they had a key worker and an individual plan in place, 12% had a key worker but no plan, 4% had a plan but no key worker and 72% had neither. That is a glaring gap in the system. Children are waiting before finally being accepted into CAMHS. As Ms Morrison stated, it may take a third or fourth referral from a GP. Meanwhile, the child is withdrawing from school, withdrawing from social interaction and engagement with their peer group, becoming more and more depressed, starting to have very negative thoughts about themselves and believing some of the narrative around them.

They become labelled as the bold child in the class. Classmates look at them and say that X is the bold boy or the bold girl. In many cases, it tends to be boys because girls can mask it for longer at a younger age. That is the starting point where the problem arises. The urgent referrals are not being given to children with ADHD.

In terms of getting the appropriate care in place at a young age, a lot of international research has been done that supports earlier interventions being put in place to support children, particularly prepuberty. This again goes back to Ms Morrison's point. If we can get children proper supports in primary school before they hit that critical age of ten, 11 or 12, with puberty starting, we can arrest and potentially turn back a car crash that is waiting to happen whereby children start to withdraw further from school, stop attending school, stop submitting work and, all of a sudden from an academic perspective, start to fail.

In many cases, there might be other issues coexisting with their ADHD. They may have autism or dyslexia. There are a number of other things that can co-present with ADHD. Meanwhile, these children start getting involved in antisocial behaviour and become a burden on the State. There is a lot of evidence internationally to that effect.

An Cathaoirleach

I need to move on. I thank Deputy Durkan and call Deputy Cullinane.

Deputy David Cullinane

I welcome the witnesses. I thank them for their advocacy work on behalf of all the children and families and for the very detailed information they have provided to the committee, including the surveys that were done last year, which are quite shocking in terms of the responses that came back. I will get to those shortly. I might go through some of them because it is important for people who are tuning in and for the public to understand from a parent's perspective and from a child's perspective the full extent of the challenges in this area.

In the material they have provided in addition to the opening statement, the witnesses say that on 28 September they submitted 18 questions to the HSE in respect of children with autism. Have they received responses to any of those questions yet?

Ms Hannah Ní Ghiolla Mhairtín

No. We had a meeting in September with the Department of Health and the HSE. We were told we could send in follow-up questions. Three or four related to autism-specific questions. The rest were just looking for information on current initiatives. We continue to be told that they are being progressed, but we cannot get any information on them. We have not heard back to date.

Deputy David Cullinane

I suggest that the committee follow up with the HSE because September is a long time ago. Information should be supplied to people who have asked questions. This is something that, hopefully, we can help with today.

I want to deal with the surveys that were done. It is obvious that we need to regulate, reform and resource this sector. Any of us who have had any experience of families of children and young people with mental health difficulties, particularly children with autism, given the unique challenges they face and which the witnesses have set out, know that it is heartbreaking. I want to go through some of what was said in the survey of October of last year, which I imagine was coming from parents. One of the parents stated: "Was told that my child’s suicidal thoughts and plans were not really mental health issues and just their autism”. Another comment indicated:

Child refused support for severe anxiety, self-injurious behaviour and suicidal ideation as they kept saying it was due to autism and they do not deal with autistic children.

I want to outline one parent’s experience, which I thought sums up the experience of many families, and I have dealt with some myself. With regard to the parent of a nine-year-old daughter, the survey report states:

Parent 1 shared the referral letter sent and refusal letter received at the time of their daughter’s mental health crisis. The referral letter - sent by the family’s GP asking for CAMHS engagement – sets out how this 9 year old girl was saying that “she wished she was dead and that she didn’t want to be here”. The letter of refusal from CAMHS stated, “She does not appear to have a moderate to severe mental health illness and therefore we will not be accepting this referral. It is common for children with disabilities to have meltdowns and say they do not want to be here.” The refusal letter was sent from CAMHS having never met the 9 year old.

I think that is quite shocking as well. There are many similar examples too. Ms Ní Ghiolla Mhairtín might just explain to us how traumatic that is and what changes the organisation would like to see in this area. I ask this in the context where we have GPs, very clearly concerned about a child, submitting referrals and CAMHS is simply sending letters back not accepting those referrals. That could possibly be for medical reasons, and could be coming from clinicians as well, but sometimes the response might be because of resource issues. I will give Ms Ní Ghiolla Mhairtín time to give her own perspective on some of the responses received from those surveys and her view of how that impacts parents and children. I will, therefore, give much of the time I have left to the witnesses to respond.

Ms Hannah Ní Ghiolla Mhairtín

I thank the Deputy. Originally, we undertook a survey in August and patterns started being identified from it around how autistic children were being treated. We then ran the second survey in October to try to get a little bit more detail about what was entailed when people said they had had negative experiences. This was really when the experiences of children with suicidal ideation being turned away from CAMHS came to light. I suppose this is something we cannot really get our heads around. We find it mind-boggling that children with suicidal ideation are being told they do not have a moderate-to-severe mental health issue. Families are heartbroken and are really trying to get help. They are going into accident and emergency departments. Often, they are referred from there on to CAMHS, but once it is realised then that there is a diagnosis of autism, CAMHS says the child should go back to the children's disability network team.

We are concerned that a kind of diagnostic overshadowing is taking place now. Within the diagnostic criteria for autism, anxiety and depression are not criteria to be diagnosed with autism; they are separate, treatable conditions. We are concerned that the policy situation now does not reflect that reality. This policy situation is set out in the CAMHS operational guidelines, where it is very clearly stated that all children, whether neurotypical or autistic, should be entitled to "appropriate multidisciplinary mental health assessment and treatment", but this has not been the reality. We are also worried because there have been some worrying policy developments in the last six months, and we are concerned that this is going to get worse. Over the summer, a pilot version of the new CAMHS hubs was launched. Autistic children, in the context where the terminology "a primary diagnosis of autism" was used, were excluded from accessing those CAMHS hubs. These hubs are intended to provide emergency intensive support to children who need it. In that regard, we really question this exclusion because the children in CAMHS who are autistic have already been told they meet the threshold of having a moderate-to-severe mental health issue. How can they then be excluded from this new initiative? We think this is discriminatory. We have raised it with the HSE and it told us that certain cohorts were excluded to make the pilot phase as successful as possible. We do not, however, believe the pilot phase represents what the long-term service should be offering and we wonder how it would impact the evaluation of the service.

A second thing that has emerged is that autistic children are now being told they will not be accepted into CAMHS. Instead, the CAMHS psychiatrist will offer in-reach into the children's disability network team. We have major concerns about this because we have always been told by the children's disability network teams that they are not specialists in mental health and cannot treat eating disorders, OCD, etc., but this responsibility has now been put back on those teams. Additionally, not all autistic children are within the remit of the children's disability network teams. Those teams deal with children who have complex disabilities. All autistic children have different levels of support needs. We see this situation, therefore, as just a further obstacle for autistic children to get into CAMHS. Parents are very distrustful and heartbroken now in respect of where to turn to.

Deputy David Cullinane

Okay. Would Ms Morrison or Ms Deasy like to elaborate or give their own views?

Ms Grainne Morrison

The second biggest cause of death in the autistic community is suicide. In that context, I refer to the situation that exists when people who have children with suicidal ideation are looking to access a psychiatric service - we know there are benefits that can be offered to them; some therapies or whatever else - and are denied it. Some 80% of autistic people will have suicide or mental health problems and the second biggest cause of death is suicide.

Ms Emer Deasy

I will go back to the point of the connectivity and linking of services. Ms Morrison has outlined it and she walked us through it at the start. There should be joined-up thinking between them. If one care worker were to be appointed to a child and when another service was identified, they should be linked in, rather than going back to the bottom of a waiting list and having to wait for that service. We should be able to get ahead. If we had a more upstream approach to it we could get ahead of a child becoming depressed and getting to the stage where they have suicidal ideation. That is the key thing we as parents are asking for. Any new reforms should not involve the Department of Health but the Department of Education and the training of teachers, caregivers and the area of early childhood care. People have been put into a classroom to teach, and there will invariably be a couple of children there who are neurodiverse, yet those teaching have no training to deal with that. It is inadequate in this day and age. We need to change the narrative around it and the general acceptance of neurodivergent people in our society.

Deputy David Cullinane

I will very quickly conclude. Some 4,400 children are waiting to get access to services. As we can see from the opening statements, even children who get into the services are not getting the treatment or supports they need. Following this hearing, there is definitely a need for us to follow up with the HSE and CAMHS at some stage over the next number of months. It is not good enough that responses have not been given to this group which has submitted detailed questions. There are very serious issues being raised. There was the report by the Mental Health Commission, and we are being told it will not be implemented in full. There was the UN report. There are surveys coming from parents which reflect many of the challenges. I would argue, a Chathaoirligh, that we should follow this up with the HSE. I thank our witnesses for their advocacy work and for their attendance today.

An Cathaoirleach

I agree. If at all possible, this is something we should try to follow up on. There is cross-party and non-party support on this issue. Collectively, we all want to see this situation being resolved. The figures are stark and frightening: 81% of the members of Families for Reform of CAMHS who have children with an intellectual disability have no access to any mental service at all. That is scandalous and unacceptable. Collectively, in the Oireachtas as a body, both the Seanad and the Dáil, we need to put our heads together and resolve this issue. As I said, we are told it is not a matter of money. We are told it is not a matter of goodwill towards the issue. What, therefore, is the issue? We are told the services on the ground are broken and are missing key personnel. However, that is of no use to a family that is crying out for help and, particularly, to those children who have suicidal ideation. Those families must be up the walls trying to get services for their child. I call Deputy Shortall.

Deputy Róisín Shortall

The witnesses are very welcome. I thank them for the incredible work they are doing. The survey is very useful. It is from the coalface and it provides a very clear analysis of the situation and what needs to be done to rectify it. The Department and the HSE should be indebted to them for coming up with that data. The findings are also absolutely in line with those of the Mental Health Commission. The witnesses referred to the 49 recommendations and this committee has been in touch with the Department and the HSE about the importance of implementing those 49 recommendations. However, it is important to point out there are three primary recommendations the Mental Health Commission identified. The first of those was the immediate and independent regulation of CAMHS. That is by far the most important one. There have been years of excuses, explanations and long stories about why the service is so bad. There is a need for that essential service to be independently regulated because we cannot depend on either the HSE or the Department to be upfront about what is going on. That is a key part of the problem.

Mental health services for children should be a top priority service.

We need to shine a light on that, as does the Mental Health Commission by regulating it. That needs to happen urgently. It should be our number one demand as a health committee. There is also the question of monitoring the implementation of the recommendations. We do not want this to just be piecemeal. Let us do it properly. It is long overdue. There has to be monitoring but also oversight of CAMHS by the health and safety committee of the HSE. The extent of the serious concern of the Mental Health Commission is that this is now a health and safety issue and it must be overseen. The implementation of these recommendations and the operation of CAMHS must be overseen by that subcommittee. We need to move on those recommendations urgently.

Families for Reform of CAMHS had a meeting with the Department and the HSE in September. Who did it meet? What level were they at? We already expressed when the Mental Health Commission and the HSE were before the committee that we do not have a director of mental health services - there are various other assistant people and so on. It is hard to know why that director post was stood down. It does not seem to make any sense. A lot of these issues and the lack of priority flow from that. Will the witnesses tell us the level of the people they met from the Department and the HSE? What was their response to the issues Families for Reform of CAMHS raised and the survey?

Ms Hannah Ní Ghiolla Mhairtín

In September, we met officials from the Department of Health along with Dr. Amanda Burke, the new clinical lead of CAMHS. In October, we also met the Minister of State, Deputy Butler. We raised our concerns, to which they were receptive. I am not sure we got any clear commitments from them coming out of the meeting but they were receptive. They were trying to say to us that they are on our side and they are also trying to bring about reform. Where we differ is perhaps the level of urgency with which we see that reform has to be brought about. We have children in our group who cannot wait. This is seriously urgent for some children. Being told initiatives are in progress that will allay our concerns is all very well and good but we cannot get the detail on what those initiatives are. This means, first of all, that we cannot assess if we think that will respond to the problem, especially around the CAMHS service for intellectual disabilities. I think there was widespread acknowledgement that it is not good enough and it was raised that CAMHS was looking at putting in place a telehealth interim solution or a solution in which children can be referred from one area to another where there is a relevant team. Even for these stopgap measures, no timeframes could be given, let alone for when that service would be up and running. The meetings went well but we are still not clear on what is actually happening. That speaks to the Deputy's point that if progress is monitored across a number of different policies and service plans, we cannot find out what is happening. If there was the consolidated approach under the Mental Health Commission's recommendations and they were reported on, it would lead to more transparency about what is actually happening and might allay our concerns or give more opportunity for us to engage and give feedback. When we hear about new initiatives, it is the families who can see that there might be issues. It would be great to have the opportunity to consult on some of the proposals.

Deputy Róisín Shortall

I take it Families for Reform of CAMHS agrees with that number one priority.

Ms Hannah Ní Ghiolla Mhairtín

We do.

Deputy Róisín Shortall

I think that is very clear and something the committee can pursue actively. I agree with earlier speakers that we will now take this on as an urgent issue. It is one thing to be sympathetic with a group but Families for Reform of CAMHS is speaking to people who can do something about it. What in the view of Families for Reform of CAMHS are the main obstacles to reform at this point?

Ms Emer Deasy

The starting point is that things are not joined up. We are working in silos. Each department works separately. Even within the HSE and CAMHS, there is no joined-up thinking.

We can take the example of a child with ADHD. The starting point with CAMHS generally is to start with medication, and we have already outlined that in some cases where a family do not to medicate their child as a first port of call, the child will be discharged from CAMHS. We have a lot of evidence of that happening. If people decide to medicate, it is a big help for a child with ADHD, but these children will typically need support from an OT with developing organisational skills, and speech and language therapy will also be very helpful. There are a lot of other therapies, but they are not offered as a combined care plan. That would be a really good place to get to.

We have outlined the situation with children aged up to 13 years. If we cast it forward into adulthood, which ADHD Ireland has done a lot of surveys on and which are internationally based, and look at adults with ADHD that has been untreated, 20% of them have attempted suicide, 50% of them have self-harmed, and 10% consider suicide as a possibility of dealing with their lives in the future. In a very recent survey the group carried out, it estimated the annual cost to the Exchequer of untreated adult mental health as being €1.8 billion per annum. That is a stark figure. Why is it so high? It is high because in a lot of cases people with ADHD undiagnosed as adults will struggle to finish education, hold down jobs and maintain relationships and their mental health deteriorates, so they become a burden on the State when they would not otherwise. We need to get ahead of it when children are young to prevent it becoming this dire situation for adults in the State.

Deputy Róisín Shortall

Ms Ní Ghiolla Mhairtín drew attention to the issue of children with autism and their exclusion from CAMHS. When the group raised that with the HSE and the Department, what was their response to that issue? It seems to be an issue that could be corrected. It would seem it is a policy issue.

Ms Hannah Ní Ghiolla Mhairtín

In the Department of Health and HSE meeting we raised the particular issue around the CAMHS hubs and the exclusion of autistic children, and they said they would take that away to think about, so that is one of the questions we are waiting for a response on. We also brought it up in our meeting with the Minister of State, Deputy Butler, along with our concern around the use of the phrase "primary diagnosis of autism", because when we look at international research and literature, it refers to a dual diagnosis of autism plus whatever the mental health diagnosis is. Nowhere else is primary diagnosis of autism written about, which we feel is maybe the HSE trying to put its responsibility for autistic children at a remove. The Minister of State agreed with us that dual diagnosis was the preferable terminology. It is still within the CAMHS hubs documents. That has not changed. A number of TDs have submitted parliamentary questions for us on the issue, but the question is always whether the Minister will address the discrimination experienced by autistic children in CAMHS and the response is always that the children's disability network teams provide ASD treatment. What we have to keep iterating and reiterating is we are not looking for ASD treatment but for mental health services and mental health treatment. The HSE has moved away from saying "primary diagnosis of autism" to "mental health issues associated with ASD", which is basically saying the same thing. When we look at research, the question of why the autistic community experiences higher levels of mental health issues is so complex and cannot be reduced down to saying it is because they are autistic. They are a huge number of factors involved, as with neurotypical people. We are not really of the mind that this is being taken seriously enough and that is why we have prioritised it for today's discussion.

Deputy Róisín Shortall

I thank the witnesses very much.

Deputy Neasa Hourigan

There are two areas I want to cover, but before I do, I highlight that in the past 24 hours the list of priority Bills for 2024 was published by the Chief Whip and I was really surprised to see that reform of the Mental Health Act 2001 was not on that. Some of what we are talking about is around the confusion that lies in much of our legislation. That legislation in particular does not vindicate the rights of person with disabilities or those who might be neurodivergent and it certainly does not bring us into line with the UNCRPD. It is on the priority drafting list, but we must take account of pre-legislative scrutiny.

I know Senator Black is on the call as well. We have done a lot of stuff on this in the Sub-Committee on Mental Health. Prelegislative scrutiny was completed in May 2022. I am really surprised to see that it is not on the priority publication list. Do you think that bringing legislation like that more into line with things like the UNCRPD, where your rights are clearly required to be vindicated within the legislation, would push services like CAMHS to rectify some of these issues? Would you like to talk about that? It was a surprise to me that it is not on the list.

Ms Grainne Morrison

Yes, there has to be some form of regulation in place in every part of healthcare. There is HIQA and there are governance and regulatory bodies. Only 1% of mental health services in Ireland are regulated. In our opinion it has to be a priority. We must listen to Dr. Susan Finnerty turning around and saying she cannot give parents confidence that there is a safe and effective, best practice service in CAMHS. As parents, what do we do? We are not TDs. We cannot push this.

Deputy Neasa Hourigan

It is very hard to put your child into a service that you think will not do them justice. You feel like they are not safe.

Ms Grainne Morrison

It is horrendous. Would you put your child into a burning building?

Deputy Neasa Hourigan

Exactly. Chair, I do think that the committee should follow up on that. A huge amount of work has been done on the mental health legislation and it is very tardy for it not to be on the priority publication list. I do not know if we can ask why that is the case.

Before I run out of time, I want to ask about the increase in numbers for ten to 14 year-olds, which jumped out at me. On the issue of neurodivergence, while it is problematic to locate that fully within the disability conversation, for the purposes of today's conversation it is useful. Some children with disabilities access mental health supports through a service that provides them other supports. For example, for a deaf child or a child with a visual impairment, there is a model whereby they receive mental health supports or counselling through those services and those supports are sometimes provided by people who also have those additional needs. Do parents of autistic children feel that CAMHS is the correct place and that we should reform it? Should it be done through services that align with other needs? Do we need to look at specialist staffing within CAMHS? Let us say you are one of the very few who are taken seriously, you are not relegated because of your other diagnosis, primary or not. Are there staff in the service right now who are adequately trained to deal with neurodivergent mental health requirements?

Ms Grainne Morrison

No. Some 15% to 20% of the population is neurodivergent, whether dyslexic, dyspraxic or have ADHD or ASD. There needs to be a whole look over education in the HSE for autistic people. England does it. They do the Oliver McGowan mandatory training for everybody.

Deputy Neasa Hourigan

When you say everybody, do you mean everybody within the NHS?

Ms Grainne Morrison

Anybody in healthcare in England has to do autistic training. That is because of the poor outcomes. If you are autistic, you have 12 years less of a lifespan than your neurotypical peer. That is because you might be frightened going to the doctor or due to communication levels. These are intelligent people, doctors, lawyers or plumbers who are autistic, but they have less of a lifespan going along. Education has to be a priority.

Deputy Neasa Hourigan

It is not just accessing the service but also that within the service you would need specialists.

Ms Hannah Ní Ghiolla Mhairtín

One of things that always comes up for us is that when you get into CAMHS, CAMHS says they are not specialists in autism, and when you go into the child and disability network team, CDNT, they say they are not specialists in mental health services, so you are kind of pushed between the two.

When people go to CAMHS, they are very specifically looking for mental health services. We want to keep saying that, because so many families are being gaslighted. I know I keep saying that CAMHS often is the right place for this. We speak about the over-reliance on medication but in many cases medication is required and CAMHS is the only service that has child psychiatrists. You cannot access that in primary services or in CDNTs. Therefore, people are trying to get into CAMHS for a specific reason.

Yesterday, the Minister of State, Deputy Butler, announced the launch of a new screening process. When kids are to be sent on to a particular service, there will be a new panel in place that will determine the best service for the child to be sent to. She is of the belief that many more will end up in primary care, as opposed to going into CAMHS. Many of our members are quite concerned about this. There is a waiting list of 16,000 for primary care psychology at the moment-----

Deputy Neasa Hourigan

Sixteen thousand?

Ms Hannah Ní Ghiolla Mhairtín

It is 16,000. We are speaking about reducing CAMHS lists to go into primary care, but there is a huge list there. Primary care does not offer medications so that will close another door. We are also really concerned that all the autistic children will get diverted to the CDNT and will not get into CAMHS at all. There is real potential in the idea, but the devil is in the detail and we have not seen the detail yet.

Deputy Neasa Hourigan

Is it the case that the representatives did not hear any suggestion that there would be an expansion of the provision of services so there could be access to medication through different routes or pathways?

Ms Hannah Ní Ghiolla Mhairtín

No. The only thing they have said which we have noticed in the past few months was that instead of autistic children going into CAMHS there might be psychiatric in-reach into the CDNTs. However, in the CDNTs, the rest of the staff are not mental health specialists. Therefore, they will not be getting the multi-disciplinary approach to mental health that is promised under the CAMHS operational guidelines. We are still therefore very much trying to get into CAMHS.

Deputy Neasa Hourigan

That is useful for us as we move forward in focusing on this issue. This is a matter of reforming CAMHS and not the expansion of other services. It is useful for us to understand that.

Ms Grainne Morrison

The other issue relates to situations where a child has ADHD and ASD. There will be children who have cross-over; the co-occurrence rate is approximately 50% to 70%. There is therefore a child who is going into CAMHS for medication management of ADHD but they will not be treated for their depression or anxiety in CAMHS. Therefore, the psychiatrists are not treating. They are sent back to CNDTs.

Deputy Neasa Hourigan

Is it therefore the case that even within that, once they have accessed the service, it is still being split and they are being sent somewhere else?

Ms Grainne Morrison

Exactly. There is nothing holistic about it. They are being split down the middle, so parents end up having to take off days here and there. It is so stressful for parents. There is no holistic approach to this at all.

Ms Hannah Ní Ghiolla Mhairtín

The individual issues are being treated by separate services, as opposed to the child being treated holistically. It is a very fragmented approach and it often does not make sense.

Deputy Neasa Hourigan

Is that why the representatives believe there should be a case worker or some kind of post that advocated for the child rather than the particular issue?

Ms Grainne Morrison

That would help.

Deputy Neasa Hourigan

Okay. In the last minute I have, I will ask a representative to expand on the increase in the prevalence of mental health issues among the group of ten- to 14-year-olds. Does that, in their estimation, provide particular challenges? It is around the age of 12 years old that one will move into secondary school and, often, some services will take them and some will not. Could the representatives expand on that?

Ms Hannah Ní Ghiolla Mhairtín

Yes. We took those figures from the National Self-Harm Registry Ireland. It is interesting because many kids who cannot get into CAMHS are being told to try the NGO sector. There are really good organisations, such as Jigsaw-----

Deputy Neasa Hourigan

They are excellent.

Ms Hannah Ní Ghiolla Mhairtín

-----but they only take children from age 13 onwards. Many kids are starting to experience issues earlier on, from the ages of ten and 11. There is nowhere to turn for them. CAMHS is the only option, and they cannot get in. Things need to be looked at so we can start having enough services for a younger age group, because they are falling between two stools at the moment.

Deputy Neasa Hourigan

I am out of time and I thank the representatives.

An Cathaoirleach

I call Deputy Kenny.

Deputy Gino Kenny

I thank the representatives for their ongoing work on this very important issue. A number of months ago, representatives from the Mental Health Commission were in this very room and I asked them about their report.

To say the least, their report was quite damning and unsettling in terms of the provision of child and adolescent mental health services and I asked whether CAMHS in its present format was reformable. They gave me the answer in support. Obviously, the group here today is called Families for Reform of CAMHS. Do they believe CAMHS, in its present format, is reformable in terms of the services their children are not getting, and thousands of other children are not getting?

Ms Grainne Morrison

We are not the HSE. We have not got corporate governance. We do not know how these structures work or whatever else but I would say that CAMHS has to be reformable. For our children, grandchildren and whatever else there has to be some form of reform. Reform comes from legislation so we need legislation to monitor the mental health sector. Then you have accredited bodies. Health accredited bodies will go in and best practice starts then. I hope CAMHS can be reformed.

Ms Hannah Ní Ghiolla Mhairtín

We have ten key reforms but we also have 31 sub-reforms, so we are not trying to solely focus on the problem. We are trying to put forward solutions we think would bring the system up a notch and offer a safe system. Certain things probably need to be looked at beyond CAMHS, which is the interaction of CAMHS with other services like the CDNT. I am not sure whether some services should be merged. That would be a bigger overhaul. We focus very much on reforming CAMHS because we think there are some key things that can be done there but they need to be done urgently.

Deputy Gino Kenny

Yes.

Ms Emer Deasy

I will refer to one other stark and worrying statistic we have discovered in our work, which was not an awful shock. It is the level of private services being sought by families where they cannot access care through the State. They are on waiting lists for CAMHS, occupational therapy, OT, or whatever and they go privately. That sector is largely unregulated. Parents pay out money hand over fist for play therapy or counselling sessions but there is no regulation of that system, which forces families into poverty, of which Barnardos has evidence. Families are choosing to get their child his or her weekly therapy session rather than pay an ESB bill or buy a full grocery shop and that is really worrying.

There is another thing that is very worrying, and again a number of our members have experienced this first hand. They have not been able to access services in Ireland, their children are in crisis and they are watching them fall apart before their eyes. Parents will do everything for their kids. They will go overseas to seek help, and that is happening increasingly in this country. If you had another medical need you would probably access care in the North or the UK and it would be covered by the State. You might get to go overseas for other medical treatments you need. That option is not available to our children. What is happening, and we have a very worrying statistic coming forward, is that parents are paying for online assessments. They are meeting with the psychiatrists in other parts of Europe. They are travelling to those destinations and are coming back with prescriptions for very severe drugs but there is no medical oversight. We have had instances where parents have tried to contact those providers in those overseas jurisdictions after the event but were unable to access them or get through to them. The parents are now faced with figuring out how to renew a prescription or wean a child off a drug from which he or she is suffering very bad effects. This is happening and it is really worrying. Parents are going to serious lengths to look after their children and the State is failing them very badly.

Deputy Gino Kenny

That is my next question. I want to discuss the private sector in terms of assessment of needs and so forth. How confident is the group in certain groupings and individuals in terms of assessments? It is quite arbitrary. The Mental Health Commission in its report said there was no regulation at all. If there is no regulation at all in terms of the assessment of a child then alarm bells are ringing in a serious way.

Ms Emer Deasy

They have to be.

I will outline another thing that is quite stark. If you take the example of a child with ADHD, the parents will get a private assessment because they hope it might accelerate their child's acceptance by CAMHS, and it might.

Deputy Gino Kenny

How much would that assessment cost?

Ms Emer Deasy

It can cost anything from €800 to €1,500, at a minimum.

Ms Grainne Morrison

As we laid out earlier, that goes on, possibly, from two years of age up to 12 or 13 years of age. You can pay up to €10,000 - that is for an assessment and therapy. It will start off with speech and language therapy and will include OT, an educational psychologist, a clinical psychologist and a private psychiatrist. Then CAMHS will say it has to reassess your child because it does not know what kind of assessment the child has had. You could have rolled out €10,000.

Deputy Gino Kenny

The assessments may not be accepted by CAMHS.

Ms Grainne Morrison

We are told 99.9% of the time that those assessments will not be accepted and that it will reassess.

Deputy Gino Kenny

My God, that is unbelievable.

Ms Emer Deasy

Parents believe that by getting an assessment it might open the door. It will open the door but they are back to getting a reassessment done so they have really wasted their money. That is what it boils down to.

Deputy Gino Kenny

The parents have spent all that money getting all the assessments and therapy but when their child eventually gets into CAMHS-----

Ms Emer Deasy

The process starts again.

Ms Grainne Morrison

People could have to wait for another year or two years, depending on the area, for reassessment.

Deputy Gino Kenny

Is it the case that when a child is in CAMHS, and they have had assessments, the professional in CAMHS will not accept the assessments or they think it is the wrong diagnosis or the wrong path?

Ms Grainne Morrison

It is a combination of those. As the professionals in CAMHS say, and one has to agree with them, there is no regulation on the outside.

Deputy Gino Kenny

Yes.

Ms Grainne Morrison

CAMHS wants to reassess, but there are plenty of good psychiatrists and psychologists on the outside who do thorough assessments. Despite this, children are reassessed when they enter CAMHS.

Deputy Gino Kenny

I can see how that would be problematic. As to regulation of the services parents and children have to attend, the Mental Health Commission's report stated that there is very little regulation. How concerned is Ms Morrison about this? Parents are paying a great deal of money for services.

Ms Grainne Morrison

I am massively concerned. It is frightening. It was only when the Mental Health Commission came out and Professor Lucey stated that only 1% of mental health services in Ireland were regulated that-----

Deputy Gino Kenny

It is incredible that 99% is not regulated.

Ms Grainne Morrison

We need regulation for everything. The other day I listened to a Minister speaking on radio about the regulation of electric scooters. That is fantastic, yet we have no regulation of mental health services.

Deputy Gino Kenny

What does it mean in reality if 99% of these services are not regulated? Are some people saying they are A, B, C or D when they are not and they are not trained to make assessments?

Ms Grainne Morrison

If there is no one is regulating or standing over a sector to ensure people’s work is best practice, people could do anything. I am not saying that is the case, but in any form of general medicine, there needs to be an accredited oversight body and overarching governance.

Deputy Gino Kenny

Which is not the case at the moment.

Ms Emer Deasy

From a learning perspective, anyone in a regulated medical sector will do annual continuing professional development courses and will be obliged to keep up to date with best practice. If there is an unregulated system in which people are providing services that are unregulated, there is no guarantee it is best practice and no one is keeping a watch on it. Meanwhile, parents are stretching themselves to provide these services to their children in the hope that they are doing good.

Deputy Gino Kenny

It was mentioned that parents were going to other jurisdictions for assessments. Is that widespread?

Ms Grainne Morrison

It is becoming widespread.

Deputy Gino Kenny

Where are the other jurisdictions?

Ms Grainne Morrison

There are a lot in Spain and other parts of Europe, depending on where the psychiatric services are. As Ms Deasy said, children in Ireland are going on controlled drugs that have been prescribed by psychiatrists in different countries.

Deputy Gino Kenny

When a child who has had an assessment and is on medication comes into CAMHS is the assessment changed with regard to how the drug is prescribed?

Ms Grainne Morrison

Potentially, yes. CAMHS might not accept the initial assessment.

Ms Hannah Ní Ghiolla Mhairtín

It is often children who have been refused by CAMHS who are in this situation. It is parents who cannot get into CAMHS who go-----

Ms Grainne Morrison

They are desperate.

Ms Hannah Ní Ghiolla Mhairtín

-----to other psychiatrists throughout Europe and getting a diagnosis from them. They have been told there is nothing wrong with their child by CAMHS.

An Cathaoirleach

I am conscious that a number of people are looking to contribute online. I ask them to indicate to the clerk. We will take a comfort break after Senator Kyne's contribution.

Senator Seán Kyne

I thank the witnesses for coming before the committee and for their testimony and advocacy. This is the third meeting we have had on these topics in the previous year. This time last year both Ministers came before the committee. We have also had the Mental Health Commission before the committee and now we have the witnesses today. We need to follow up with another meeting with both Ministers on progress. Last year the Minister of State told us the same thing Deputy Hourigan said, which is that the mental health Bill was on the list for priority drafting. It is still on the list for priority drafting. We need to push it with her.

The witnesses mentioned the postcode lottery. We have heard that CHOs 4, 6 and 8 are the worst. What does the best look like? What is the best service? Its location is one thing but what does a good service look like?

Ms Hannah Ní Ghiolla Mhairtín

I am not sure. The best CAMHS service was at 50%.

Ms Grainne Morrison

I do not know the best.

Ms Hannah Ní Ghiolla Mhairtín

We will come back to the Deputy.

Ms Emer Deasy

There has been some narrative around certain CAMHS being better. One is my CAMHS. If that is what the best looks like it is not enough.

Senator Seán Kyne

I will read some of what the Minister of State, Deputy Butler said at this time last year. She said:

I have visited many CAMHS teams the length and breadth of the country in the past six months and was really struck by a young girl I met in Dundalk who came along with her mother. She had been in the care of CAMHS for four years, was almost 18 and was just exiting. She told me she had 96 appointments over four years. She had been seen every fortnight for four years.

How untypical or typical – untypical I would imagine – would this be in the view of the witnesses?

Ms Hannah Ní Ghiolla Mhairtín

I would say this is very untypical. What that individual got sounds brilliant. I am aware that people joining our group are probably the people having the worst experiences, which is why they seek us out, but a large number of us are having very difficult experiences. There is also a high turnover of staff. Even people getting regular six-month appointments will be told by their psychiatrist that they are leaving and to be prepared for a long gap until the next appointment. We are speaking about a gap of nine to 12 months because it takes so long to fill the positions. The majority of our members are offered medication which requires a certain amount of review and appointments, perhaps every six months. Very few are offered therapeutic supports. I presume it is the children getting therapeutic supports who are seen more frequently.

A point which is slightly separate but which perhaps we have not mentioned is that while we always speak about the waiting list of 4,400 children, the number of medical refusals to CAMHS has jumped by 12% since 2020. A large number of children who are trying to get into the service are not on the waiting list. This probably includes some of our members, who have to be referred two to five times or go to an emergency department before they get into CAMHS. The waiting list does not cover the real number waiting.

Senator Seán Kyne

It is often said of the health services that there is the waiting list but once people get in the door the service is good.

The witnesses clearly have issues with staff changeover and with certain specialties not being available, so what I have said about the health services is not the case and not the view they have.

Ms Emer Deasy

It is not. Senator Kyne mentioned the changeover of staff. As Ms Ní Ghiolla Mhairtín said, if people are lucky enough to be getting an appointment every six months they will see the same doctor once. In six months' time, they will see somebody new. We must bear in mind that we are dealing with children who have psychological issues. They are potentially depressed, having poor thoughts about themselves and thinking negatively about themselves. Their case is discussed in front of them with a doctor who, in many cases, is a trainee rather than a consultant. Effectively, the children are almost used as guinea pigs for training. I appreciate that every doctor needs to be trained appropriately, but to do this in front of a child is not best practice. The parents should have a call in advance to go through the case file. There have been instances where parents have turned up to appointments and the record of the previous meeting or the things that were discussed are not accurately documented on the child's file. The conversations become very difficult. It is a very bad forum for a child who is already in a bad place to be sitting there listening to a discussion about themselves. It is never positive. Many of the discussions are about what is going wrong, what is happening and the child's behaviour. Even people who can get in and have regular appointments will never see the same psychiatrist. There is no opportunity for a child who is struggling with their mental health to build up a relationship or trust with the clinician looking after their care. This is a big problem.

Ms Grainne Morrison

With regard to what Senator Kyne said about the health services, he was speaking about general medicine and hospitals. They are regulated, and that is the difference.

Senator Seán Kyne

Last year, the Minister for Health said that additional funding and support from the Government turned into a 21% increase in the number of new patients being seen but that the problem was that demand for services rose by 33% during the same period. That funding resources and staffing have not kept pace with demand is clearly an issue from what the witnesses have said.

The issue of CAMHS versus disability services has to be fixed. It cannot be going from Billy to Jack. It is not fair on anybody. Rather than picking one of them, is the solution to say that CAMHS is in charge and it has to have funding for disability specialists? Is it the case that we need co-location of services and co-operation between disability services and CAMHS? How do the witnesses see this? What is the best approach?

Ms Hannah Ní Ghiolla Mhairtín

Our focus has always very much been on reforming CAMHS and ensuring that what is set out in the CAMHS operational guidelines, which is multidisciplinary mental health support, is delivered. CAMHS is the specialist mental health service. This is always our key message. Many children also access other services. A lot of thought needs to be put into how best to integrate services. We do not really have the answer for this, to be honest. Many of our members ask whether there is some way to merge the two services or to set up special mental health services for neurodivergent children which can look at treating the child holistically. All of these would have to be researched. In the short term, we very much at least want any type of gatekeeping in respect of autistic children to stop. The long-term measure would need further consideration.

Senator Seán Kyne

Would the witnesses be able to extrapolate and estimate the number of children with autism who are on the waiting list of 4,400? Are they included in it? I presume they cannot be included if CAMHS has no intention of taking them because they have been diagnosed with autism.

Ms Hannah Ní Ghiolla Mhairtín

Approximately 60% of the parents in our group-----

Ms Grainne Morrison

It is 59% to be precise.

Ms Hannah Ní Ghiolla Mhairtín

-----have children who are autistic. We have not broken it down by who is waiting and who is in the service. Some people with autistic children cannot get into the service but that is not the case across the board because many autistic children are in the service. There is a lack of consistency. It depends on each team as to whether it takes them on.

We would not have a breakdown of that figure.

Senator Seán Kyne

There is not a blanket refusal per se.

Ms Grainne Morrison

I suppose 85% of the people in our group would say that having a diagnosis of autism would have a negative impact. We will be told that that is not an autistic trait and it will go back to the CDNT, even though most people who are autistic will have a higher prevalence for OCD, PTSD and eating disorders, which are all very high. They are the mainstays of CAMHS anyway.

Ms Hannah Ní Ghiolla Mhairtín

To be clear, it is not a blanket refusal. Because we are the first national family representative group, we are able to identify these clear patterns. There are enough numbers there to identify a definite pattern. However, it depends on the position from team to team. We have people who say they were refused treatment but then the doctor changed and the new doctor accepted them. It is basically a lottery, which is not good enough.

Deputy Seán Kyne

I thank the witnesses for their testimony.

Sitting suspended at 11.06 a.m. and resumed at 11.15 a.m.

Senator Frances Black

I thank the witnesses for coming in and for the phenomenal work they are doing in this area. Work like this grows out of passion and need. The work they are doing is brilliant.

It is very disappointing, particularly for the group that is before us today, that the Bill to reform the Mental Health Act is not on the priority publication list. My concern is that the lack of movement on that reform Bill means it probably will not move at all, due to upcoming elections and so on. Could the committee write to the Department or the Minister on this issue? We have to do something to change that situation.

I wish to follow up on Deputy Gino Kenny's comments on assessments. I am shocked that private assessments start from €800 and go up to thousands of euro but when people try to attend CAMHS, the assessments are not even considered. That is concerning. Why are the assessments so expensive? All present have families, children or grandchildren. It is shocking that it would cost that amount of money for those in dire need of support, such as children who are in distress or suicidal, to get an assessment. What is the thinking of the witnesses on that issue? Why is it so expensive to get an assessment?

Ms Grainne Morrison

There are not enough professionals. Whether it is educational psychologists, occupational therapists, speech and language therapists or psychiatrists, they are just not there. The money is being pushed up for assessment. Years ago, it was possible to get a speech and language therapist for €50, and then interventions after that. All of those budgets are going up, however. It is the same with psychiatrists. A full assessment used to cost €600 but that price has gone up.

Senator Frances Black

It seems very unfair. I am shocked at the cost of an assessment.

I wish to touch on ADHD in particular. The report of the Mental Health Commission pointed to ADHD as the most frequent reason for children being referred to CAMHS. One often hears of children with ADHD being on waiting lists for lengthy periods as more urgent cases get seen first. What are the experiences of the members of the witnesses' organisation in that area?

Ms Emer Deasy

The experiences for parents of children with ADHD are exactly that, in terms of priority of access to mental health services. The urgent cases, such as a child with an eating disorder who may have a medical urgency, will be seen ahead of a child with ADHD. That is what is happening. Even when a child is accepted into CAMHS and the assessment is done, the child may be offered medication as a first course of action. Many parents do not wish to embark on that course. They are processing being given a diagnosis for their child and they may wish for the child to start on medication immediately. There is a significant amount of international research on the care of people with ADHD. Many other therapies can work very well in conjunction with medication. Medication is not the only show in town for an ADHD diagnosis. Other supports relating to behavioural issues, management of emotional regulation and all that can go a long way. No parent wants their child to be medicated first off. They may wish to consider other things. That is where parents are saying their child has a diagnosis but they are not sure they wish to medicate yet. In many cases, the child is discharged from CAMHS at that point.

They might then embark on a route where they are looking to get other therapies, at serious cost to themselves, as Ms Morrison outlined. They might then end up coming back to CAMHS. That is the experience that is out there.

Ms Hannah Ní Ghiolla Mhairtín

May I add to that briefly?

Senator Frances Black

Apologies; as I am attending the meeting remotely, I cannot see whether other people wish to come in. I do not mean to interrupt Ms Ní Ghiolla Mhairtín.

Ms Hannah Ní Ghiolla Mhairtín

ADHD Ireland has been doing a lot of work on this. It has been talking about waiting list initiatives that have been brought in. Money is being paid out for private assessments for some ADHD kids to get their diagnosis earlier in order to reduce the numbers of ADHD kids on the waiting list for CAMHS. The issue is they are getting a diagnosis but cannot get the supports once they have the diagnosis because there is not the capacity within CAMHS. It is a very short-term solution and does not offer support beyond the diagnosis.

Senator Frances Black

One often hears of over-reliance on medication in the context of the type of support received from CAMHS. Which supports would Families for Reform of CAMHS like to see provided as a matter of priority? If the witnesses had a magic wand, what would be the priority for them with regard to the over-reliance on medication?

Ms Emer Deasy

Certain psychology services would be useful, as would emotional support around counselling and behavioural therapies with emotional regulation. Many young children, whether they are neurodivergent or neurotypical, will experience that. A significant amount can be done in that regard in addition to medication. Medication is a game-changer for many children, as many of our members would attest, but one does not know how a drug will react in a child's system until one tries it. A parent could spend up to 12 months trying to get the drug right to suit his or her child. There is chopping and changing of drugs, in an uncontrolled manner in some cases, as we outlined. Parents are managing this at home and struggling to get any oversight from CAMHS in so doing. The parent of a child who has been put onto new medication may try to access support from CAMHS but be unable to get through. As the child does not have a caseworker, there is nobody dedicated to follow up on his or her transition between medications. Some parents in our group have had to wean children off very strong medication on their own. One parent outlined to us that she was looking up on the Internet how to wean her child off these really strong medications. It is dangerous.

Senator Frances Black

Do the other witnesses wish to come in on that point?

Ms Hannah Ní Ghiolla Mhairtín

An aspect which many of our members have been highlighting with us in recent days is proper eating disorder services. There is a significant gap in that area and there seems to be a lot of fragmentation. A member told us yesterday that her child with ADHD also has an eating disorder but she cannot get support for the eating disorder while she is getting support for ADHD even though they are both treated by CAMHS. It is about having appropriate services in place.

We are also seeking delivery on the commitment to out-of-hours services. At the moment, the only place for those seeking support outside nine to five is to go to an emergency department, which is obviously a very stressful place to bring one's child. That was committed to back in 2019 but has not been delivered on. In terms of delivering on the support that was committed to, we were promised a multi-disciplinary approach but, in reality, it is very much psychiatric-led. Although that aspect is extremely important, it would be good to also have the therapeutic supports offered by clinical psychologists, play therapists and occupational therapists. Far more could be done.

Senator Frances Black

Many members have asked questions on discrimination against autistic children, to which reference was made in the opening statement. Did the witnesses state that they have raised these concerns with the Department of Health but have not yet got a response?

Ms Hannah Ní Ghiolla Mhairtín

We raised it within our meeting. We specifically raised the new language which emerged around a primary diagnosis of autism and the fact the children were excluded from the pilot CAMHS hubs.

They took it away to consider and we have not heard back from that. We have since submitted parliamentary questions through TDs asking about discrimination against autistic children. They do not acknowledge any discrimination. We are trying to highlight today it is an issue and there is a patten across the country. We have members in every county, so it is not isolated to one or two counties.

Senator Frances Black

So Ms Ní Ghiolla Mhairtín does not really know the official policy position. What are her thoughts as to why autistic children are discriminated against?

Ms Hannah Ní Ghiolla Mhairtín

We were told when we met with the HSE and the Department of Health that many of the problems with waiting lists for CAMHS arose once autistic children were accepted into the service. We maybe cannot speak to this but we have a lot of members who are very concerned that denying autistic children access to CAMHS is a way of reducing the waiting lists. We do not know that for sure, but serious conditions are being turned away and children who need treatment are not getting it. We can only guess what is happening.

Senator Frances Black

I thank the witnesses for the phenomenal work they are doing. Their group will make a difference. Keep up the great work.

Deputy Colm Burke

I thank the witnesses for their presentation. It was mentioned there are three health areas with particular problems, namely CHOs 4, 6 and 8. What areas do they cover?

Ms Grainne Morrison

They cover Cork-Kerry, south Dublin-Wicklow and Longford-Westmeath.

Deputy Colm Burke

There are particular problems in those three areas, compared to others.

Ms Grainne Morrison

Yes, for the waiting lists.

Deputy Colm Burke

Ms Morrison referred to the fact people are going away privately and getting assessments and it is costing a lot of money. Has there been any engagement with the Minister, the Department and the HSE? We are using the treatment purchase fund for hip replacements and all sorts of things. Why can we not use it for something like this? Is it not a way to expedite it? We were talking about the increased costs. The HSE would invite people offering the service to tender for the work. They would have to tender at a fixed price and we could deal with a lot of the backlog if we got people on board who are prepared to offer the service.

Ms Emer Deasy

That absolutely could be a solution. The challenge would be once you have your diagnosis and need to access CAMHS, you are still back into that system of waiting to get seen in CAMHS.

Deputy Colm Burke

I accept what Ms Deasy says but let us take it a step further. What is the obstacle in CAMHS? Do they not have the staff to deal with it or-----

Ms Emer Deasy

It is twofold, in my experience. First, we have already outlined the lack of regulation around some private providers.

Deputy Colm Burke

The tender issue would resolve that problem.

Ms Emer Deasy

If that is resolved, the next issue is staffing in CAMHS. Many CAMHS units around the country are operating at way below the recommended staffing levels.

Deputy Colm Burke

On staffing levels being too low in CAMHS, there is a CAMHS team. Is it the case that, where there is not the full number of people in the team, the team does not function at all or is it-----

Ms Hannah Ní Ghiolla Mhairtín

The Mental Health Commission report highlighted that no CAMHS team is fully staffed and that many are operating at approximately 50% of the staffing levels. This is on the clinical side but also administratively, where there are approximately 50% of the recommended administration team there, which adds a great deal of additional stress to the clinical staff. That is something which should be addressed straightaway. There is an issue around recruiting psychiatrists in Ireland and we are very aware of that.

Deputy Colm Burke

We have a particular problem in the Cork-Kerry area, for instance, which has been there for quite some time.

Ms Hannah Ní Ghiolla Mhairtín

Yes.

Deputy Colm Burke

When Ms Ní Ghiolla Mhairtín's group met with CAMHS, did it suggest how it intends progressing this?

Ms Hannah Ní Ghiolla Mhairtín

No. Talking about the staffing shortages, many of the teams we work with in CAMHS are very open with us where they do not have the resources or capacity to provide the therapeutic supports or the extra help which is required. We very much support the College of Psychiatrists of Ireland which is saying that there is an urgent need to reform the mental health system to attract new staff in and to incentivise them to come into the system. That is because at the moment even private psychiatrists are so hard to access. Many people say to us when they hear we are trying to access CAMHS that they would remortgage their house, get a loan or do whatever they could to access a private psychiatrist in Ireland. Private psychiatrists have waiting lists of six to 12 months which is often too long when one is in an emergency situation.

Deputy Colm Burke

Absolutely, yes.

Ms Hannah Ní Ghiolla Mhairtín

I believe the Deputy's suggestion around the National Treatment Purchase Fund is one that we definitely did not bring up and it sounds very interesting, especially for our members who are looking for the specialist CAMHS intellectual disabilities, ID, service for their children with intellectual disabilities who do not have access to anything. They have asked whether some funding could be provided so they could cross the Border. If they cannot get the expertise in Ireland, could funding be provided where they could to go to Northern Ireland, or to wherever the expertise is, so that something is offered to them because their children are left with nothing at the moment?

Deputy Colm Burke

One of the problems we have with the HSE historically is that there has been a great reliance on independent agencies to provide services for people with intellectual disability and for people with physical disability and the HSE has not adjusted, as time has moved on, where it now has that role and is not implementing it. We have taken on over 40,000 additional people in the HSE in the past seven years. The same proportion has not been taken on in CAMHS. Have we any idea of the shortfall and of the kind of numbers we are talking about in real terms?

Ms Hannah Ní Ghiolla Mhairtín

We do not have specific numbers and we are running off the Mental Health Commission's report which just advised that it is at about 50% of the recommended levels. The most recent national mental health policy did not set out recommended staffing levels so we are working off the previous mental health policy which set out goals for how many staff and CAMHS teams there should be. It was recommending about 126 and we have 74 to 75 CAMHS teams. We are nowhere near the recommended levels.

Deputy Colm Burke

Can I come back to one of the statements in the presentation this morning regarding GPs and teachers advising not to disclose that the child has autism? What is the concern that once a child is diagnosed with autism they are not able to get access to CAMHS? Why is that used as a barrier for getting access?

Ms Grainne Morrison

As we were saying earlier on, a child with autism is seen as going to a disability team rather than to the CAMHS team and sometimes GPs are alluding to where it might be a metrics point with CAMHS that it can push the child over to a different service because it is another condition.

Deputy Colm Burke

In other words, one is moving them off the CAMHS waiting list onto a disability waiting list.

Ms Grainne Morrison

Yes.

Deputy Colm Burke

On the co-ordination of those two waiting lists, are our guest speakers saying that there is no co-ordination?

Ms Hannah Ní Ghiolla Mhairtín

There is no co-ordination and that is the issue we have at the moment. There is this change at the moment where we are hearing that CAMHS psychiatrists might provide in-reach into the children's disability network team rather than accepting autistic children into the mental health service. Many of our children, however, are waiting two to three years to get into the children's disability network team, first of all. Some children's disability network teams are not offering a service at the moment because they are at full capacity. To have this additional step, which has to be taken before they can be offered mental health services, which are separate to disability services and which are being sought at this time-----

Deputy Colm Burke

Is it not about co-ordination? Surely we should be able to co-ordinate services where someone is admitted to hospital and to a particular area but it is then found they have a totally different condition. There is the co-ordination then of the transfer over of the patient. The person may have been admitted as the result of a fall but suddenly finds they have a heart condition and there is a transfer over. Is Ms Ní Ghiolla Mhairtín saying the structure is not there for that transfer over?

Ms Hannah Ní Ghiolla Mhairtín

There is no transfer. One applies separately. As we mentioned, yesterday the Minister of State, Deputy Butler, announced the launch of a new screening panel so that when you go to your GP and are being referred on to a service, the panel will look to see which service would be best suited to your child. However, what we are not clear on is whether that means that all autistic children will just be sent to the children's disability network team, CDNT, or whether they will still get access to CAMHS? We are hoping that this does not mean that they are excluded from CAMHS and are sent to one or the other. Often, you need both services. Especially with our families, we are looking for mental health services. Our remit does not focus on children's disability networks, although it is all integrated.

Deputy Colm Burke

The whole historical issue with regard to mental health was that we literally parked the person in a facility and that was it. We have moved on from that but we have not replaced or provided the necessary support. The co-ordination of services is the one key area we are falling down on. Is that lack of co-ordination an easy exercise to resolve?

Ms Emer Deasy

I do not know if we are best placed to even answer that question. That is probably a question for the Ministers to discuss.

Ms Grainne Morrison

It is the silo system. It is the three: the primary care, CDNT, and CAMHS.

Deputy Colm Burke

Do our guest speakers believe that if the will was there to resolve it, that it could be resolved?

Ms Grainne Morrison

Absolutely.

Ms Hannah Ní Ghiolla Mhairtín

We are always calling for a cross-government approach to this. This is not going to work by each individual Minister or Department looking at it in isolation. It requires a cross-government approach and that is the only way in which it will be solved. I know that a new child well-being unit has been set up in the Department of the Taoiseach and we would love if it would consider taking on some of these issues also because they require that central approach.

Deputy Colm Burke

I thank our witnesses very much.

An Cathaoirleach

I now invite a non-member of the committee, Deputy Wynne, to speak. She is very welcome.

Deputy Violet-Anne Wynne

I thank the Chair very much for allowing me to come in. I thank the witnesses for coming in. I have met them before. I want to say thank you to them for the information they provided in their briefings to each of the members because it is excellent and so important. It can be daunting to come in here. I also thank them for the fact that this group is still going. It is a vital platform for families because sometimes issues come up in the Dáil Chamber but can get lost because other issues are coming through. Our guests' group is absolutely necessary to keep that pressure on political representatives who will carry it through to the Dáil Chamber.

There has been much discussion but I just want to touch on the private assessments. I have many constituents coming to me. I am trying to source them but, like that, the gaps in the wait for psychiatrists are a very real thing. For many, it depends on the complexities of their children's issues. Some are not able to get hold of a psychiatrist at all and some are told they must get a referral even though they are paying privately. That also becomes an issue.

On the private assessment, a number of people have come to me who have been able to get an appointment and have paid out a great amount of money but then there is no recognition of that assessment. Even with regard to supports, when it comes, for example, to the domiciliary care allowance, DCA, application, this assessment does not lead to making a successful application or anything like it. This is about the treatment of people with disabilities still not being a priority, or perhaps the policy not reflecting what the reality is. I know our guests have said this 100 times over.

The questions I have for our guests are around the psychiatrists, in particular, the EU directive that they have to move on every six months and not being part of the establishment of a relationship.

I understand that the EU directive is there to protect the psychiatrists themselves. My concern and that of families is how it disproportionately impacts the treatment that children receive. They do not get the opportunity to build a rapport. We have heard the real lived experience of the last meeting being recalled, written or read over and information not being correctly taken down. The witness mentioned the administrative gaps. This is something we have experienced quite a lot of in Clare. We need at least two and possibly three additional CAMHS teams in Clare. There was also an issue around accommodation. While there may be staffing issues in some areas, we had the added issue of there not being a big enough accommodation centre for clinical spaces. That had a severe impact on the service users and the staff. I know that many workers in Clare have left the service because of the strain their mental health was being put under, which seems completely hypocritical, I suppose.

My questions would also be around the gaps. I have mentioned about psychiatrists. This is something that comes up time and again for the witnesses. Is it becoming a more pressing issue now? I feel that it is in Clare, anyway. I would have had perhaps two to five people contact me last year. It is ramping up quite quickly as to those who are not able to get those supports.

It was mentioned that 35% of the organisation's members would like to make a complaint but are afraid to do so in case it affects the care provided. I fully understand. People do not want to be giving out to the people who are supposed to be providing the supports and services. I know a survey has been done. Are people relaying those issues about what their complaints are to the organisation?

I hank the Chair for allowing me to come in. My last question is around the exclusion issue. The witnesses have talked about those with a primary diagnosis. When it came to the pilot CAMHS hub teams, they have been excluded from there. It seems to be a consistent trend, notwithstanding that 85% of those members feel that the diagnosis negatively impacted the service and support. If they are going to be referred to the CDNTs and there is no psychiatrist there, they will not get the mental health supports. I feel this is defeating the purpose of recent announcement from the Minister of State, Deputy Butler. This is a huge concern and it has to be chased up directly with the Minister of State. I have not read the announcement in detail but I have heard that it seeks to point the children in the right direction. Obviously, the witnesses would not be happy with that. We want a commitment for the 49 recommendations. Will that be a sufficient step because that is what we will most likely hear in the Dáil Chamber?

Ms Grainne Morrison

When the measure was announced about the CAMHS hub teams, we thought it was great and it was going to be fantastic. However, when we read the detail of it, we saw that kids who are dyslexic or dyspraxic or have ASD were excluded from it. As we said before, 20% of the population is neurodivergent. I think the way it was worded was that kids with dyslexia, dyspraxia or mental health issues were best placed or best seen in primary care, and kids with ASD were best seen in the CNDTs. It would be nice to see what the Minister of State has for the new assessment. Then we can come back to the committee and see what way it goes.

The Deputy raised the issue of complaints. Some 74% of our members who have submitted complaints were not happy with how they were handled. Some 35% of our members would like to make a complaint but they are afraid of what would happen to the care of their children afterwards. If a person makes a complaint and it does not go well, the relationship with the consultant is gone. It is extremely hard to get a new consultant on board to look after the child or the family when that relationship has broken down. It is quite a big piece.

Ms Hannah Ní Ghiolla Mhairtín

It is worth mentioning that many of our members have been sharing their individual experiences with us. We have a large number of members who have said that once they have submitted a complaint, they are brought into a room with the people they complained about and there is no impartial mediator present. This is not the way to deal with a complaint because they are not supported. Hearing these experiences probably puts other people off from making a complaint, even if they feel they need to.

Deputy Violet-Anne Wynne

I want to make one last point, if I have the time. The NTPF was mentioned by the previous speaker as being something that could be explored to achieve assessments and therapies and so on. The Minister of State, Deputy Rabbitte, has been able to source €11.5 million. With this recent announcement for that purpose of assessment of needs for people with disabilities, would the €10 million allow for some to avail of the NTPF arrangements?

Ms Hannah Ní Ghiolla Mhairtín

The Deputy asked about the lack of psychiatrists and the impact it has on our group. This is brought up time and again. People are desperate. They cannot get into CAMHS. They have submitted three or four referrals. They might be on the waiting list or they might not even have got on to the waiting list so they are looking around. People are starting to suggest to each other different psychiatrists they have found abroad. This is growing.

Another issue is the turnover of psychiatrists within CAMHS. A person messaged me this morning to tell me how tired they were having to tell the story again and again. It is draining. There is also a lack of consistency. Another member told me that they were having a really hard time getting CAMHS to recognise that an ADHD assessment was required. They had already had one done privately where ADHD was diagnosed. This was not accepted and they were trying to get it re-assessed within CAMHS. The people in CAMHS were saying that it was likely the child was ASD or autistic and it was not for them to treat the child. Eventually, a new psychiatrist came in and decided an ADHD assessment should take place and that they would organise for the blood test to be done over the summer but that they were leaving CAMHS. When the mother rang to enquire, there had been no handover so there was no record or acknowledgement that an ADHD assessment was required and there had been no referral for the blood tests. Then a new doctor came in and took a different approach. This doctor was flabbergasted that the private assessment was never taken into account and was not on the file. The doctor organised the test straight away. It is so much the luck of the draw how families are treated when they are in CAMHS. The handover piece, where all information should be passed on, is not always done.

Ms Emer Deasy

I have one other point on the treatment fund that the Deputy mentioned. It would work if it was the case that a child could be diagnosed and their care managed by a psychiatrist in Europe. At the moment we have a system whereby if I have a prescription form a doctor in Spain, say, that does not cross the border. It seems ludicrous to me that I can see a doctor in Spain but if I have a script from that doctor, it will not work anywhere else. It is that European piece. Surely there should be a regulation across Europe that we, as parents, can trust and that the Irish State can stand over and we can take it from there. If there is availability of psychiatric services in other countries and a prescription is what is needed, it seems ludicrous that something like a prescription cannot travel.

Senator Martin Conway

The engagement during the course of the morning has been an eye-opener, not that we really needed it. The facts and statistics from the witnesses' survey last August are quite frightening. What we have heard about people being referred and having to go private and being referred in again and being told it may not necessarily be appropriate very much reflects an example I have from County Clare where a young person went from pillar to post to try to get a proper diagnosis and proper interventions and this cost the family a fortune. I do not know how other colleagues feel but I think the situation in Clare is worse than anywhere else in the country. Are the witnesses familiar from the work they do with how bad and how difficult it is and how people in the mid-west feel they are completely isolated and completely left behind? I engaged a lot with various parents and it is soul destroying to see how long people are waiting for any kind of intervention in Clare.

For these young people it is the formative years of their lives. We try to achieve something in politics and I just think this is an unholy mess.

The witnesses spoke about the 49 recommendations that would make a difference if they were implemented. I am sure they absolutely would. As Deputy Shortall said in her contribution the three key recommendations would be a start. Is there an example anywhere in the world where the witnesses have seen this done right? Is there any international experience on the ground that is actually working where the witnesses would say if we had this in Ireland, it would be a good model? I believe we are the worst in Europe but surely there is an example somewhere we should aspire to be like and try to implement that particular service.

It is shocking there is no regulation. Everything is regulated. Nursing homes and hospitals are regulated by HIQA and so on. That CAMHS is not regulated is a disgrace as far as I am concerned.

Ms Hannah Ní Ghiolla Mhairtín

I will start and then hand over to Ms Morrison. The Senator made the point about how poorly Ireland is doing. I do not know if the committee is aware that the European Commission released its Eurobarometer report back in October. This showed that Ireland has the highest level of difficulty in accessing mental health supports, with 44% of Irish citizens having trouble accessing mental health treatment compared with the European average of 25%. It is shocking and it is widespread. The 2017 report from UNICEF showed that Ireland ranked fourth highest for suicide in the EU and OECD region, and highest for girls dying by suicide in Europe. There have to be a lot of other areas doing it better, possibly because they have had the funding and the resources plugged in, which just has not been done here over the past decade. Perhaps Ms Morrison will come in on any best practice.

Senator Martin Conway

With regard to the work Families for Reform of CAMHS has done and the very useful survey, are there any takeaways from that for County Clare in particular? I am aware it is very specific but it will be very useful from my point of view. My experience has been very negative.

Ms Hannah Ní Ghiolla Mhairtín

We ran a few surveys and we have members in every county in the country. Quite a few members are from Clare. We have not broken down our statistics by county but we are planning on running another survey, probably in the next month, in which we will get more detail. We will probably get down to county level. Many of our members have started joining up to have their own private chats with other people within their county. We are looking at it more widely and more nationally at the moment. We will definitely share any information once we hold the next survey.

Ms Emer Deasy

I will just to add to that. I do not believe that any area has been a standout as gold standard or best in class. That is definitely the case. There is no one area that can be pointed to where everything should mirror what is being done in that location. That has not been our experience or that of our members.

Ms Grainne Morrison

The best CHO, in the context of us talking about the Mental Health Commission, is privately run by St. John of God, which is the Lucena CAMHS.

Senator Martin Conway

Obviously the work being done by the witnesses is extremely valuable. Where does the group get its funding from? Is it getting any State funding or is it all just contributions from members and supporters?

Ms Grainne Morrison

We are just mammies for families. That is all it is.

Ms Hannah Ní Ghiolla Mhairtín

We have not set up the group that way. People have recommended that we set ourselves up as a registered charity but we actually really want to avoid as much bureaucracy as possible and just try to put our time and energy into the advocacy work. We have just set up ourselves. A few of us have put in a few bob for accessing SurveyMonkey for our surveys and setting up a website but we are not looking for funding. That is not what we are looking for at the moment. We are looking for reform.

Senator Martin Conway

And looking for results. That is great. I thank the witnesses. Well done on the very important work you do. I will support the proposals from Deputy Cullinane and others to engage with the HSE following on from today's engagement.

An Cathaoirleach

That is accepted. A number of recommendations have come out of the meeting for the committee to follow up.

I also have an input to make. We have been talking about the service, and it is clearly broken. Having worked in the services, I am also conscious that staff are working in extremely difficult circumstances. It would be remiss of the committee were it not to thank all those people who are working within that difficult service day in and day out. The figures provided by our witnesses clearly highlight the fact that the service is broken. I have put this to senior staff within the mental health services, CAMHS and so on. There has not been a backlash to the effect that it is not broken in this area. It is clear that where we do not have key personnel, psychologists or leads for the various services in place, the system is broken and only partial service will be provided. Where a child is obliged to wait two years for an assessment and another two years to get the necessary services or support, then it is clear that the system is broken. We can look to regulations coming from Europe, but if those regulations relate to a system that is broken, it adds to the difficulties. It is stupid that we are trying to implement regulations in respect of services that are clearly not up to scratch.

I am conscious that there are families with more than one child who needs access to services. There is a physical and mental impact on those families. It is not uncommon for Members of the Houses to have families come to them and state that they went to psychologists and so on to get private assessments in respect of one child and that another child - and possibly another again - showed signs as well. That is a huge burden on the families involved. If people have wealth, they can get private assessments. If they are poor, however, they cannot go down that route. Automatically, there is a situation whereby people are going down different routes for services for their children.

We have not mentioned the courts. Members are conscious that many families end up going before the courts. This is another matter we need to talk about. We all accept that people do this out of desperation. Once they have got an assessment, people feel that supports should follow. That does not happen, however. Perhaps the witnesses could talk to us about those families in the context of the group's advocacy work. Has it worked for the families who have gone down that route? Are they still in that situation or does it help families to go down that route? What would be the witnesses' recommendation for families whose children have been waiting for years to get those services?

Ms Grainne Morrison

I will bring the Chairman back to one point about clinicians in CAMHS. Many of us have met the most excellent clinicians who have been a guiding light for us but who then, unfortunately, have to leave the service because they are burnt out or tired.

As for the courts, there are families who go to the courts and through the courts but that is a harrowing task as well. If one has a child going through a mental health crisis, or is in need of medication which is gold standard for ADHD, or who is autistic and cannot get a service, or a child with an eating disorder, OCD, anxiety or depression then the family is already dealing with that and has the heightened level of taking on a case against the HSE, which is no mean feat. It is astronomical. They are very brave people doing this.

An Cathaoirleach

They are doing it out of desperation.

Ms Grainne Morrison

Absolutely.

An Cathaoirleach

If we ask the Minister, the HSE and the Mental Health Commission about it when they are in at the committee they all accept that it is not the ideal and that families should not have to go there to get support and assessment in relation to needs. If the system is broken and they have no other alternative, however, that is what people have to do.

Ms Hannah Ní Ghiolla Mhairtín

Members of our group are taking their own court cases. Our group has a committee that has discussed what path we want to take.

At the moment we are keen to look for the prospective route to see if we can bring in reform, rather than looking back retrospectively at what some of our children may have gone through. We want the reform to come about for children coming into the service so children do not have a repeat of what we have gone through. A lot of us have young children. They are going to be in the service for another eight years or whatever. We want the reforms to come about. At the moment we are very much taking an advocacy route. We have not ruled out other possible routes but we are going to see how far we can go with this route.

An Cathaoirleach

I am conscious that we have not touched on the inpatient CAMHS beds. There is a situation where we have services and we have the facilities but we do not have the staff to facilitate those. Am I right to say that the target is 130? Is there any update on those figures?

Ms Hannah Ní Ghiolla Mhairtín

I do not think we have any particular update. We are probably more aware of the personal experiences. We have members telling us they bring their child to the emergency department and they are begging for their child to be admitted. Their child needs help and they just cannot get their child admitted. We had one member who was told that the only way her child could be admitted was if she refused to take her child home, in which case Tusla gets involved and the parent is given out to for refusing to take their child home. They cannot get support by going home. Parents are being forced into this extreme decision-making. They do not want to leave their child but if they take their child home they are not getting help. They are being told they will be referred over to CAMHS. We have parents going into the emergency department with their children in very urgent situations. A lot of the time they are given an urgent appointment and are seen within, let us say, two weeks. We have other parents who are discharged and are told they will get an urgent appointment but months later they still have not got one. They are desperate. There is nowhere for them to turn to. They have to go back to the emergency department. We have heard of hospitals refusing to discharge patients until an actual appointment date has been given by CAMHS because they are aware that this can happen. The acknowledgement that the supports are not in place is very widespread.

An Cathaoirleach

I have had situations where people with suicidal ideation turn up at the emergency department and are eventually released and told they will have an appointment in 12 months. Would that be unusual?

Ms Emer Deasy

No.

An Cathaoirleach

I know of another case where the child was coming up to the age of 18 and the family felt they were being put on the long finger and being put off. It was suggested that they might go to a private charity. Would that be unusual coming up to that age?

Ms Grainne Morrison

The transfer from CAMHS to adult mental health services is a bit rocky as well. There is a standard operating procedure that it should be a clear transfer over but a lot of our families are finding that they are being let down again. Either CAMHS has not sent over files or adult mental health services have not taken them on. Children who are on ADHD medication, which eight times of out ten they will need for the rest of their lives, are going periods of time without having any medication.

An Cathaoirleach

As politicians, it is not uncommon that we would come across cases where families have brought a loved one to the emergency department, they have been released and then there has been a suicide. There is a tsunami of that across the State, as we know, but we do not have the figures until a year or two down the road. We hear those stories quite often about the families who have tried to get help and how we have failed as a society in relation to this. Would that be common for your members?

Ms Grainne Morrison

We only started our group - Hannah started it - in May. We have 827 people in our group and that is only since May. There are a lot more families. People do not disclose that they have mental health issues in Ireland. As my husband always says to me, people throw in this rhetoric that it is okay not to be okay but if you are a child in Ireland, it is not okay not to be okay.

An Cathaoirleach

I am concentrating on the issues with the emergency departments again. I know of a case of a family where the child, a young adult, was self-harming, suicidal and walking around naked, was showing all the symptoms and it was clearly a breakdown, and there were no supports. They were being released. The family at one stage said they could not take the person back. The option was a homeless facility, which the person would not have survived. The family took the person outside the jurisdiction and got them sectioned. In Ireland there was a pendulum swing. In the past, women could be sectioned if they looked for a divorce. Now it is almost impossible where someone is clearly in need of being sectioned for their own safety. In some cases they are self-harming but also threatening others. It is almost impossible in Ireland. Would that be one of the reforms our guests think we need to look at as a society in respect of the Mental Health Act, or is it outside the scope of the group?

Ms Hannah Ní Ghiolla Mhairtín

I would say that is one we have not really discussed as a group. People definitely want more inpatient options. It is primarily around the issue of suicidal ideation. You are discharged out to CAMHS and told to lock up your knives and medication. Families are then left looking after their children. There are various levels of urgency as to how quickly they are going to be seen. A woman contacted me last week to say her 12 year-old daughter expressed suicidal ideation in school. The principal got in touch and they referred her to CAMHS. CAMHS said that because she is only thinking of it, she cannot be added to the urgent list. They are only dealing with kids who have already attempted it. That is shocking, that there is nothing preventative in place. It is a reactive service at the moment. It is down to them not having enough resources and staffing. We understand why that is, but it is not good enough. It is not safe for children. We do think there needs to be more inpatient services and quicker access to CAMHS for cases that are urgent but the person might not have actually tried to commit suicide yet.

An Cathaoirleach

Going back to the issue of key personnel being missing on those teams, I have put this question to various officials and the Minister. How do you recruit for a post where someone will have a workload of hundreds of cases or even a thousand cases? It is impossible to get someone to take on that workload without additional supports.

Ms Emer Deasy

Like any business, you start from the ground up. You put in place the pillars that will support the next level coming in. You have to start from the ground up and put the money into it. Also from a recruitment perspective, the length of time it is taking to recruit clinical staff is crazy. It can take up to 18 months or two years to recruit into the service. Those kinds of changes would help.

Ms Grainne Morrison

Accessing more university places for allied professionals, including speech and language therapists, occupational therapists and psychiatrists, would be a help. We are not heads of the HSE or policymakers.

Ms Hannah Ní Ghiolla Mhairtín

We referred earlier to the College of Psychiatrists of Ireland. It is very much saying we now need to be recruiting the child psychiatrists of the future. It is not going to happen by chance. Those psychiatrists are only going to come in if the service is reformed and the supports are there for them. The level of burnout among staff working in CAMHS is extremely high. They are trying to fill the gaps of a failing system. They cannot individually do that. They need the supports. Some of the other issues they have raised are promotion opportunities and ways to keep them retained. We would be calling for the support of the reforms they are calling for. We might not be experts in that area ourselves. We were warned that by speaking out against CAMHS, we could have a negative impact and might put more people off coming into CAMHS. At the same time, the issues with CAMHS have been in place for at least a decade and nothing has happened. We need to speak out about CAMHS but also advocate for our families and for staff members because we are all being failed.

An Cathaoirleach

Yes. If we stay silent on an issue, how are people to know there is a problem there?

Last of all, the group's survey says one in nine people accesses services through a TD. That is an indication the system does not work because TDs are not the way for people to get medical supports or assessments. It is wrong the system relies on TDs and that needs to change as well. It should happen through people's GPs or through medical services and not through a politician who knows absolutely nothing, or very little, about the system.

We will go back to Deputy Shortall now.

Deputy Róisín Shortall

I have a few more issues to raise if the witnesses do not mind. It has been a long morning and they are probably keen to call it a day. On the last point about being warned about not giving out about CAMHS and the effect that might have on recruitment, that kind of secrecy is an old ploy to keep people quiet and also underlines the need for outside regulation by the Mental Health Commission. As the Chair said, if everybody keeps quiet about it nothing gets done. Was it the HSE that warned the group, as a matter of interest? It would be shocking if it was.

I wish to go back to the issue of private assessments that was raised and also mentioned by the Chair. This is part of a piece we are seeing right across the health and social care system where what was creeping privatisation and outsourcing is now galloping privatisation. The point was made that people are forced to get private assessments and it is the same with children's disability network teams forcing people out to private assessment. People must pay for that and the vast majority of parents cannot afford it, which means a huge number of people are left behind. It is then essentially a privatised service rather than the public service we should have, and should especially have in place for children. The other impact of that kind of outsourcing is that for therapists themselves, it is an easier and more lucrative career choice to work in the private sector. That militates against recruiting people to the public sector. I am concerned we are reaching a tipping point with this and we see it right across the board. The NTPF and all of that is about outsourcing, so there is a major problem from that point of view. There is the high cost, but we should always remember the large number of people who are completely failed and left behind by this tendency.

I have two specific questions. The witnesses have catalogued all the major shortcomings of CAMHS. When people are refused access to services are there are shockingly long waiting lists, what is the complaints procedure in place for CAMHS? Where can people go to raise this? It was mentioned that people are frightened off about making complaints, but what is the complaints procedure officially?

My second question is on the point made about the need to access other services when children are refused in CAMHS. The witnesses talked about the need to access speech and language therapy or occupational therapy, but what about the need to access other mental health services, especially in circumstances where parents do not want to go down the road of medication? Are there any options there or what options are there for parents who want their children to have access to talk therapies rather than medication?

Ms Grainne Morrison

The complaints procedure in CAMHS is on the Your Service Your Say model. You send a complaint to CAMHS or to Your Service Your Say and they have a look at it. It is the usual timeframe whereby they get back within seven days and then the complaint is brought to CAMHS. You are brought into a room in CAMHS with the clinicians you have made a complaint about. It is not great.

The majority of our family members, I think 74%, have had a really bad experience and then there are about 35% who will not complain because they are afraid of that bad experience or afraid of the repercussions. I think the Ombudsman for Children did a survey in 2023 and it said only 11% of the staff in the complaint listened to the complaint, so it is multifaceted.

Ms Hannah Ní Ghiolla Mhairtín

We were talking to members recently and many of the people who go down the complaints process are the people who are already within CAMHS, but there seems very little option to complain or get a second opinion if a person is just refused access to the service. We have a member who looked into that recently because the decision on being accepted into the service is made by the consultant psychiatrist, so it is made by one person. I have never heard of anyone doing it, but one can ask for another consultant psychiatrist to look at the issue, but it is dependent on that consultant psychiatrist accepting and they already have too much on their plates. We have never heard of anyone having any success going down that route.

Deputy Róisín Shortall

Okay.

Ms Hannah Ní Ghiolla Mhairtín

The Deputy asked about other mental health services. Many of our members have found Jigsaw excellent. There is Bodywhys for eating disorders. They are definitely filling a gap that is not being filled by CAMHS. There are services out there. Jigsaw takes children from 13 years onwards, so for younger children there is a bit of a gap, but anyone we have heard from who has gone down that route has said those services are very good. Often though, a child cannot be in CAMHS at the same time, so it means parents are sometimes taking the decision to take their child off medication to go into these other services and if the issues are too serious those services often will not take them and will say it must be CAMHS that looks at them.

Deputy Róisín Shortall

My final question is on the recommendation that was made for out-of-hours services running seven days a week. That was a recommendation from the 2019 HSE service plan. We know there are not alternative options for people other than, in the main, going to EDs, which are totally inappropriate. Has there been any extension at all of hours or days of working within CAMHS?

Ms Hannah Ní Ghiolla Mhairtín

No. I think that at the moment as part of the pilot the CAMHS hubs might be offering beyond service hours, but most of our children are not within the CAMHS hub. It is only a pilot within a certain number of small areas. The rest of our children are dependent on the 9 a.m. to 5 p.m. service. It is so soon after Christmas. A lot of our members needed support over Christmas, which is always a bad time for mental health. CAMHS offices were closed for two or three weeks, so we had a lot of members ending up in accident and emergency over Christmas because they could not get help elsewhere. Similarly, if there is a bank holiday or it just happens to be the day your consultant is on annual leave you cannot access any help and if you go into accident and emergency you will usually just be discharged to CAMHS, so you are kind of doing a circular loop, but when you are in that crisis, accident and emergency is often the only option.

Deputy Róisín Shortall

I thank the witnesses very much.

Deputy Bernard J. Durkan

Something came to my attention there. For the patients who have had to access private treatment, it was not without financial pain as well as rest of the anxiety and stress that goes with it. Many of those people got themselves into an awful lot of debt as a result of being forced to go that route in order to address the issue they saw with their child at that particular time and they saw no other way to do so. I am not at all opposed to the purchase of treatment in the event of that treatment being available in whatever sector, be it public, private or whatever, but let us have it. Whether it be physical pain or financial pain, we need to be alert to the fact there is a means of resolving the problem.

As another point in general with the purchase of treatment, I have dealt with quite a number of patients in recent times who had to get treatment, such as cataract treatment, in a hurry. They had to get treatment in a hurry because they were going blind. They could not see the door before them. They could not drive or do anything. To an elderly person who may be living alone, that is quite a problem.

The problem arises afterwards. They get the emergency treatment and they go to the bank and get a loan, based on their pension or whatever the case may be. The treatment is 100% successful and, incidentally, it is readily available in this country in all areas without exception but the system will not pay for it even though it is built in, because they did not get approval beforehand. If you look at the situation with your family's health, and there is something coming down that track that is becoming inevitably worse and you or your child are becoming more and more vulnerable, there is a need to get onto it now and not next year, and to not file a report and to avoid dealing with the issue. I support the parents who have tried to resolve those problems, albeit at a high financial cost. That cost does not go away and has an ongoing effect on the well-being of that family over a long time.

An Cathaoirleach

We talked about the financial costs but there are other costs on relationships, for example. We all know, unfortunately, that if you have a child who has issues it puts huge pressure on families. I mentioned that, in some families, there is more than one child in that situation. We did not mention An Garda Síochána. That is another service called on which is totally unsuitable for a child, young adult or older adult with mental health issues. That should be a last resort. Families rely on that and they are the ones who probably have their own stories to tell about the challenges they face trying to access services.

We mentioned a few things this morning, including the questions from September. If the witness speaks to the clerk afterwards we will follow up on that. We also spoke about the mental heath Bill not being a priority, as was mentioned by a number of members. The witness spoke about new initiatives and asked what they were. We can follow up on that with the Minister. Also mentioned was the lack of a director of mental health services, which I think was put to Bernard Gloster when he was before the committee.

The lack of joined-up thinking was mentioned. Some members suggested that we have a follow-up meeting with the Minister and whoever else is relevant. We will discuss that at our next private meeting. I assure the witnesses we want to move this situation on. We are conscious that the subcommittee on mental health of this committee has already had several meetings on the matter. We have had people in to the committee. If there is a general conclusion from today's meeting, it is that there are huge challenges in the system and that families are suffering. We are failing children and young adults as a society and as an Oireachtas.

I thank the witnesses for coming in and sharing their views and information with the committee. I thank Families for Reform of CAMHS for its engagement with the committee on this important matter. The committee will meet in private session at 4 p.m. on Tuesday, 23 January.

The joint committee adjourned at 12.24 p.m. sine die.