Joint Committee on Health debate - 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.

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.

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

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.

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?

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.

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.

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

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.

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.