The Chair of the committee, Deputy Rice, is unable to be with us today. I do not think we have not received any other apologies. I advise members of the constitutional requirement that they must by physically present within the confines of the Leinster House complex in order to participate in 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 any member partaking via Microsoft Teams that, prior to making their contribution to the meeting, they confirm they are within the Leinster House complex.

The minutes of the committee's meeting on 14 January 2026 have been circulated to members. Are they agreed? Agreed.

Today, the committee will consider the issues relating to the treatment by the health service of people with eating disorders. In the first part of the meeting, we will hear from CARED Ireland and Bodywhys and, in the second part, we will hear from the HSE. To commence the meeting, I welcome our guests. I welcome, from CARED Ireland, Ms Paula Crotty, Ms Susan Brennan and Ms Sarah Ludden; and from Bodywhys, Ms. Harriet Parsons, CEO.

Members and witnesses are reminding of the long-standing parliamentary practice to the effect 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 may 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.

I now invite Ms Crotty to make her presentation.

Good morning. I am founder of CARED Ireland, a voluntary group representing parents and carers who have a loved one with an eating disorder. I am joined today by Susan Brennan and Sarah Ludden, who are lead members of the CARED Ireland team. On behalf of all at CARED Ireland, I thank the Joint Committee on Health for the opportunity to meet and discuss the issues relating to services for the treatment of eating disorders. CARED Ireland was formed over ten years ago by parents and carers walking this road alone. We now have over 170 members. Our role is simple. We support each other, we support families, and we advocate for services that actually work. Our experience is our expertise.

Eating disorders have the highest mortality rate of all mental health illnesses. They are complex, life-threatening medical conditions; they are not a choice. One in 20 people in Ireland will experience an eating disorder in their lifetime. A recent study by the Health Research Board, HRB, shows a 121% rise in hospital admissions for eating disorders among those under 18. Anorexia was the most common diagnosis for children in psychiatric hospitals, making up 91% of admissions. Mortality rates for those with anorexia are 11 to 12 times higher than for peers without the disorder. The suicide risk is 56 times higher. We do not hear about these deaths for a variety of reasons. Often, they are recorded as suicide or medical complications and so many parents are too traumatised to talk about them. We are here today because far too many families across Ireland cannot access timely, specialised treatment, and people are being harmed and dying as a result.

What are the core failings? Services exist on paper but lived experience tells us otherwise. The HSE eating disorder model of care was introduced in 2018. Eight years later, demand has increased significantly yet services remain incomplete, understaffed and inaccessible. While 11 teams are listed, they are not fully staffed and do not have the multidisciplinary expertise required to treat eating disorders safely. Some 14 counties have no eating disorder services at all. Where services do exist, families face long waiting lists, clinicians without specialised eating disorder training, and repeated retraumatisation. Early intervention is rhetoric, not reality. We hear daily from families at breaking point. Early intervention is crucial, yet community-based services capable of delivering it are simply not there.

There is also the transition from CAMHS to AMHS. When patients turn 18, this does not pause their eating disorder yet patients are routinely discharged from CAMHS due to age and placed on waitlists. Often, these services do not exist. Breaks in treatment cause regression, medical deterioration and prolonged illness. The lack of bed capacity is indefensible. There are only three adult HSE specialised eating disorder beds in Ireland - all in south Dublin. Patients admitted to general hospitals do not receive specialised eating disorder treatment. We met with the Minister of State, Deputy Butler, last week, who told us the good news of 19 more beds in the future.

However, other beds have been closed while needs are rising. More than 29% of CAMHS beds nationwide are not operational. In Linn Dara, nearly half the beds have been closed since May 2022. This is not a resource gap; it is a systems failure.

What is working and why is it not enough? We acknowledge positive steps made by the HSE and the Government, including the opening of Riverside House in Rathgar. However, access to date is restricted by catchment area. Centres like that must be expanded nationwide and must act as co-locating hubs that bridge inpatient, outpatient, CAMHS and AMHS care. Eating disorders devastate entire families psychologically, physically and financially. Delayed and fragmented treatment increases long-term dependence on the State and costs more, not less. Recovery is possible but only when treatment is timely, specialised and continuous.

CARED Ireland's clear, non-negotiable requests are: an immediate emergency plan for those with no access to services; full resourcing of all eating disorder teams; a mandatory transition pathway from CAMHS to AMHS; specialised adult eating disorder beds nationwide, not limited by postcode; specialist ED training for all teams; expansion of Riverside House into a national centre of excellence, regardless of catchment; comprehensive national data collection; discharge decisions based on clinical need, not age, funding or perceived treatment resistance; parents and carers to be recognised as part of a treatment plan; an immediate review of the 2018 model of care, as promised; and re-establishment of the Sub-Committee on Mental Health, with ED representation.

Eating disorders are a medical emergency. Families and their loved ones are suffering beyond anything anyone can comprehend unless they are living with this devastating illness. I ask members to please read the comments from our members in order to truly understand the desperation so many families feel. We are not asking for perfection. We are asking for services that exist, function and can save the lives of our precious loved ones.

I thank Ms Crotty. I mow invite Ms Parsons to make opening remarks on behalf of Bodywhys.

I thank the Chair and members of the committee for the opportunity to appear before them today and for recognising the value of lived experience of an illness that has the highest mortality rate of all psychiatric illnesses. Established in 1995 by parents, people with eating disorders and clinicians, Bodywhys emerged in response to a treatment system characterised by limited specialist knowledge and fragmented services. Bodywhys was founded to provide safe, specialist and experienced support in that gap. That remains our core purpose today, alongside prevention and education.

When I joined Bodywhys in 2005, it was not unusual to take a call where desperation for services had people considering moving house to be in a catchment area where there was some expertise. If someone had private health insurance, there were options; without it, access to specialist care was not guaranteed. St Vincent's University Hospital had three dedicated eating disorder beds for its catchment area. Beyond that, specialist provision was what many described as a postcode lottery. In that context, Bodywhys provided support. Our helpline opened in 1997, followed by online support groups, email support and in-person support groups across the country.

The national clinical programme for eating disorders was established in 2016. Its model of care was launched in 2018, with Bodywhys providing the support component of the programme. This was a plan to provide a national specialist eating disorder service. Alongside those developments, Bodywhys continued to respond to need. In 2014, we developed the PiLaR family support programme. Until the Covid period, when we took the programme online, I travelled weekly across the country delivering the programme to carers and reporting back the difficulties I was hearing about to the clinical programme.

In 2021, recognising that people's experiences of services remained mixed, we commissioned research to document both historical and current experiences of care. Our Reflections report captured themes of unclear pathways, delayed access and people reaching crisis point before receiving appropriate intervention. I have provided a copy of the report to the committee. Today, progress is evident. From five dedicated eating disorder clinicians in 2018, the situation today is that 110 posts have been recruited, with approximately 150 funded. In 2024, the last full year we have validated statistics for, our helpline responded to almost 1,300 calls. More than a third concerned people aged under 18, while almost a quarter concerned people aged over 36. Our email service handled almost 2,400 emails, the majority relating to children and adolescents. Hundreds more accessed our online and virtual support groups.

Evidence shows that supporting and involving families improves outcomes. Bodywhys has developed a comprehensive family support package, building on PiLaR, which offers skills training and weekly support groups for as long as people need them. We support all types of carers across all eating disorder diagnoses. Clinical programme clinicians have told us that when families are supported by us, it strengthens therapeutic relationships and improves outcomes. One mother described our support as "the only solid, regular, consistent platform for carers". In 2014, 73 carers attended the PiLaR programme. That number had increased to 752 in 2024.

Challenges remain, especially within adult services. The shortage of adult inpatient beds continues to cause difficulty. We are heartened that the Minister listened to us on this and has been working to provide what is needed. Day programmes in adult services are an essential step-down facility that can prevent deterioration and reduce the need for lengthy inpatient admissions. Transition from CAMHS to AMHS remains problematic, causing unnecessary stress and loss of continuity at a vulnerable time. People with co-occurring autism and eating disorders, including those with avoidant-restrictive food intake disorder, ARFID, can fall between services. Finally, the need for education across the wider health system remains critical. In 2024, Bodywhys delivered specialist training in therapeutic and communication skills to 1,908 healthcare professionals.

What helps is recurring, protected funding, continued investment in specialist services and support, and meaningful collaboration. Bodywhys exists to respond to need, provide safe, evidence-informed support, shaped by lived experience, and to act as a bridge between those affected by eating disorders and the services that treat them. I look forward to discussing these issues further with the committee.

I thank the witnesses for being here this morning and for their presentations. I will now take questions from members, starting with Senator Costello. Each member will have five minutes for questions and answers. I will be very strict on that as the meeting must finish by 10.45 a.m. In fact, it is four minutes per member.

The Leas-Chathaoirleach has used 30 seconds of my time.

My apologies.

I thank the witnesses for their attendance. I have engaged with constituents who are struggling with eating disorders. In one case, parents were trying to get a bed for their child in Linn Dara, which they managed to do. That child is doing well now but I felt the stress those parents experienced trying to secure that bed. It should be a much simpler process to get help when a child needs it.

Reference was made to the transition between CAMHS and AMHS. Should that be done in a different manner? In my experience, when people transition from child to adult services, it is very daunting for them. That certainly would be the case for people struggling with an eating disorder and all the associated emotion and stress. Do the witnesses think that transition could be done better to alleviate the upheaval and stress?

One of the really important developments is to have co-location of the specialist eating disorder CAMHS and the specialist adult service. At present, that is happening in two locations, namely, Riverside House, Dublin, and in Cork. When we have all those clinicians working together in the same building, a really functional, easy pathway can be built between the clinicians in CAMHS and those in AMHS.

It also means people attending AMHS will be used to going to the building and seeing the same people. That is important. It is hoped to do this in Galway as well.

It is about contact between the CAMHS clinicians and the AMHS clinicians before the young person turns 18. It is about being able to put in clear, consistent pathways so that no matter where someone is in the country, the things I have referred to are happening. Clear guidelines are being developed on this.

I wish to comment briefly on that. A service in St. Vincent’s Hospital has just been opened allowing CAMHS patients to transfer to AMHS. However, we are hearing every day from parents that the services are not available. Patients are being discharged from CAMHS at the age of 18. They are prevented from going to the children’s hospital from the age of 16. Once they turn 16, they do not go back to the child inpatient service and are turfed into an adult service. If when over 16 they need to be readmitted, they must go into adult services without eating disorder specialty care. Once they are discharged from the CAMHS programme at the age of 18, they are referred but there is no place to refer them to. Most places do not facilitate transfer from CAMHS to AMHS. The services are not available. Only six of the 11 teams in Ireland are under AMHS. Five are under CAMHS. There is only one link, which is in catchment area of St. Vincent's.

One of the policy asks is guaranteed access to specialist eating disorder treatment within weeks of diagnosis. How many weeks are we talking about?

The ideal would be that people would be seen within four weeks and that services would be provided after that. Sometimes, people are seen initially but then there is a long waiting time.

Sorry, but I must move on to the next speaker, namely, Deputy Clarke of Sinn Féin.

I thank our guests for attending. The word "indefensible" was used. I want to add the word "unjustifiable". There is a level of cruelty associated with announcing a plan and then not providing adequate funding to ensure it delivers for the people in absolute crisis and who need it desperately – first, to continue to live and, second, to reach their potential, but also to ensure they have quality of life, health-wise, for the remainder of their days. While recovery from an eating disorder is absolutely possible with correct and timely care and treatment, it can also be associated with lifelong health effects, and that needs to be acknowledged.

I am going to be very brief because the Chair will cut us off otherwise. Can CARED Ireland give the committee an example of how the failure to connect CAMHS, AMHS and eating disorder expertise affects people? What would a true no-wrong-door policy look like when it comes to eating disorders?

We currently have a member of our group whose daughter turned 18, meaning she was no longer eligible for admission to the children’s hospital and had to move into an adult hospital. CAMHS was not available while she was in hospital. The child was hugely distressed. It would be very valuable if the treating team from CAMHS continued to see the person in the hospital such that there would be some continuity of care. Once people move into the adult hospital, they are at a complete loss.

The care stops dead.

Yes.

There is no continuity at all.

Not while they are in hospital. That is because they are under a different team. There is no link-up. What does work is continuity – for example, if the community team comes in while the person is in hospital, if they meet the multidisciplinary team and so on.

Is Ms Brennan aware of any other health condition regarding which that kind of cut-off, that cliff edge, is evident?

No.

With regard to Bodywhys, I am really interested in where the day programmes fit into the treatment of eating disorders. It is clear there is a need for systemic change. If Ms Parsons were to pick two systemic changes that need to happen today as part of an emergency response, what would they be? Where would the programmes fit in?

The day programmes across all of the services are really valuable because they provide a step down. At the moment, we have inpatients and people attending the services, but people need the in-between part, which is support when they are not in hospital and are living their lives at home. That is the step-down. It can stop deterioration after discharge from inpatient care and bridges the gap. That is the first thing that is needed.

The expansion of the number of adult inpatient beds is crucial. As members will have heard from our statistics, our typical helpline caller is a woman over 36 who has had an eating disorder for over ten years and has been attending an AMHS.

Where does a woman over 36 living in an area not covered go today?

She would attend the AMHS. If she physically deteriorated to the point where she was at serious risk, she would get admitted to an acute hospital.

I thank our guests.

I thank the witnesses for being here. It sometimes annoys me a little when the issues are presented and we hear about the difficulties people have in accessing supports and services. In truth, it galls me because eating disorders are not new; they have been around for a long time. That we have not got a handle on this by now beggars belief.

I have a commentary rather than a question. In my first couple of weeks in this job, I encountered the case of a young lady in her 30s who was eating a morsel every 24 hours just to stay alive. Her mum, who happened to be a widow with eight children, cried in front of me, begging that the lady be taken into care. She was pleading because there was no support or she felt that there was no support. I came away from my meeting with her wondering where we, as a society or as a nation, are when it comes to providing support and help. Eventually, through pleading with the powers that be and with political intervention, which should not be necessary, the lady is doing well, I am happy to say. There are those who will not take the same route and those who would feel very intimidated having to do so, and this is where people could get lost. That is the difficulty I have with the system.

On the non-negotiable asks, the experts know where the deficits and difficulties are. All that is required is the putting in place of supports and ensuring the deficits and obstacles are managed. Then we would have an appropriate system. What the system is begging for is for the Department and HSE to put a plan in place to embrace the recommendations and ensure nobody gets left behind. I do not want us to be back here in a year's time discussing the same issue. If, on review, things remain the same in a year, shame on us and shame on the system that is letting people down. I am referring to the children, their parents and the adults who are all pleading for a better and more serviced system. If we do not attempt to achieve that, we will fail those who genuinely want to live and get well.

May I reply quickly on that?

Yes.

There was a plan put in place in 2018, the model of care. It has not even been fully implemented.

There we go.

With that, I will say my daughter was one of those who died from an eating disorder almost three years ago. She was one of 80 that is thought to die from an eating disorder every year. The facts are the Government and the HSE are, right now, leaving the population down. There are so many others out there who are devastated and the services are not there.

There are 14 counties in Ireland that have no services. If the Deputy had an eating disorder, not alone would he have no services to go to, but he would go to a general medical hospital or psychiatric hospital and there would be no eating disorder services to care for him there. That is the State.

Does Ms Parsons want to come in briefly?

A lot of progress has been made, from five clinicians in 2018 to 110 in post at the moment, but we are not there yet. In order for the services to get there, there needs to be that consistent funding and everybody working together to provide what is in the plan.

My sympathies to you, Paula.

I thank Ms Crotty for coming here today. I heard her contribution on "Morning Ireland" this morning. As a parent of an adult who has a serious illness, I understand where Ms Crotty's advocacy and tremendous work comes from. I just wanted to express my solidarity and my deepest sympathies on the loss of Jennifer. I myself have a 21-year-old daughter. I cannot imagine, but I know the feeling of helplessness when you have somebody with a serious illness and the services are not there. I just wanted to commend Ms Crotty and all of her 170 members on their tremendous advocacy, and similarly with Bodywhys as well.

The plan has been in place since 2018 - the model of care for treating eating disorders. Ms Crotty mentioned a mortality rate at 15%. In any other discipline, be it oncology, cardiology, orthopaedics or whatever, if you had a situation like that, it would be a national priority. Why has the HSE failed to resource the listed teams and failed to intervene properly in support of their families for these conditions?

We have been told in the past that it is due to our own funding. The HSE has said that to us. We need the funds to do it.

We have heard more recently that the issue in relation to setting up the teams - for instance, there is one, a child and adolescent mental health services, CAMHS, team, due to be set up in Limerick - is staffing. That is something that the HSE needs to look at. I know it is a problem across the board, but in this case, it is an issue with staffing. There are only 11 teams set up out of a promised 16, and we are now eight years down the line.

There are 14 counties with GPs who have nowhere to send their patients. The ideal situation would be somebody going into a GP practice and being told they will be referred and then get an appointment within the next two-to-three weeks, being wished the best of luck and being told to come back to the GP if they need anything. The GP should not be involved unless that patient is being discharged from the service. That is the case for cancer patients or diabetic patients who have a treatment plan. That should be that. Often, it takes a long time to get a person who is suffering with an eating disorder to come to the decision to look for help, but if they go to a GP and the GP says they are sorry because they have nowhere to send the person, that invalidates that person and can set back their road to recovery.

It strikes me that it is unlike other disciplines in medicine. I regularly hear campaigns highlighting issues in cardiology and all sorts of things, and that is great. In the space that Ms Ludden is in, is the college of psychiatry, for example, vocal enough? This seems to be reflective of the broader issues in CAMHS and adult mental health services, AMHS, which are completely under-resourced. Are the clinicians who work there - we will have the HSE in later and I hope to hold it to account on this - vocal enough? Do they accept this completely unacceptable and unjustifiable situation? Are they doing enough to advocate for this community?

There is always room for improvement. That is maybe something that the HSE can respond to, because Dr. Niazi is going to be in with the committee after us. I suppose we cannot comment. We do not visibly see a lot disgust at the system necessarily. There is room for improvement.

The national clinical programme for eating disorders, NCPED, with the services that it has, brings out its data every year. That data is very impressive but it is vital to realise that the statistics the programme is bringing out in terms of patients who are attending, the number of discharges and so on only refer to the patients who are attending those 11 eating disorder teams.

I have to go to the next speaker, Deputy Daly.

I will follow on from what the other members have said here. First, I thank the witnesses for coming here today. I was listening to "Morning Ireland", and I offer my condolences to Ms Crotty.

Notwithstanding that there is a plan and that things have improved, they are nowhere near where they should be. Is there any sense of urgency about this? That is my first question. I might ask the questions and then allow the witnesses to respond.

This transition from adolescence to adulthood - Deputy Clarke asked this question - is being seen by us in one subset of medicine. We are seeing it in people who have mental health illnesses, the people with anorexia whom the witnesses are speaking about, and also children who have other disabilities. There is this lack of handover, this lack of planning and leaving this gap. It is most especially a gap in this service where there is no service in the adult bracket, so you have an 18-year-old who is going out to no service.

The other issue is comorbidity and the ability of services to turn down referrals from GPs. We have been talking about CAMHS recently. They are the only services where a GP's referral is turned down without assessment. I cannot comprehend it. As Senator Clonan pointed out, for chronic sufferers living with anorexia nervosa, such as the 36-year-old woman Ms Parsons spoke about, the mortality rate is in the order of 20% from medical complications and suicide.

Finally, the Cinderella services of the health service are always governed by catchment areas. I do not understand it. It is not about the system serving the patient. It is the system serving the system.

I suppose those are my questions: the transition; the comorbidities; the catchment areas; and the sense of urgency.

I will allow Ms Parsons in first on this.

There is absolutely a sense of urgency. The HSE representatives will be able to speak to the committee on this better than me, but within the last year, the clinical programme has been educating the wider health service so that if there is not a specialist team, there are at least clinicians within the general teams who are trained. The programme put together training that had 300 clinicians at it last year to fill that gap. Ireland is a small enough country, which is why the hub-and-spoke model works quite well.

People falling between services is a huge issue and we hear about that all the time, especially in relation to avoidant-restrictive food intake disorder, ARFID, and people who have a diagnosis of autism. The GP refers but the service does not accept that, saying that the matter is not for it and is instead for another service, only for that other service to say the matter is not for it because it is an eating disorder. We hear of that a lot. There has been a huge increase in ARFID referrals and there is no clear pathway yet.

That is something that needs to be put in the new model of care, that is, to have a specific pathway for that so people who have that co-occurring neurodivergence that is causing difficulty in relation to the eating disorder can be treated in the appropriate service.

The reflection is that there would be a generalist. We know who these people are, not just people with anorexia but also other chronic illnesses, who require readmission after readmission. Why we do not have a generalist position in a hospital with a register of these people who have clear clinical pathways for admission when they need it is beyond my comprehension.

I am sorry the witnesses did not get a chance to come in, but the time has now run out.

The witness might briefly reply.

On the sense of urgency, there is no sense of urgency from the HSE in relation to trying to treat people. You also have situations where people have gone into general hospitals when they are medically unwell and the clinicians in those hospitals have no experience of eating disorders. I am talking about psychiatrists treating people. Parents have asked if they have any experience of eating disorders and the answer is "No."

I thank everyone for being here.

We touched on the catchment areas, and in my rural area of Cork North-West, there is a lady who has reached out to me many times. She is a grandmother and her grandchild is in treatment at an inpatient facility in Cork but it does not seem to be working as well as it could. They are trying to get her space but the only one they can get her is in Dublin. She is based down in Cork and Dublin is potentially the only option for her to essentially save her life. It is at a point where the grandmother and the family are very distraught.

How do the witnesses see this impacting the family as a whole? Sometimes, we focus in on just the person but for this person's family, they would have to move to Dublin to be closer to her as an inpatient to give her the treatment but as we all know, with the housing crisis it is impacting families massively as a whole. How do the witnesses see this through their lived experience? Have they come across families who have had to make those really tough decisions to save their loved one's life?

For anybody who has an eating disorder, the aim of the eating disorder within is to break every relationship around and it causes stress on everybody around them, especially if it is a younger child and if there are other siblings.

For us, Jennifer went to London for ten months, so we were back and forth. I have four other children and it was about trying to balance and give the same time to each one of them, which you just cannot do. For us to go back and forth every other week, my husband would go one week and I would go the next. It just tears families apart with the stress and the strain, let alone the financial costs of being able to do that, while trying to understand the eating disorder and trying to get the support. Many parents will say they do not get the support from teams. They do not get the understanding of what is actually going on and how they can support and help; they feel like they are on the outside. Many parents will say they feel blamed by the teams for their child's eating disorder.

It is disastrous and it should not be that. It is all wrong.

Families need support in a very particular way. They need the psycho-education and the space to be able to talk. They also need to be trained in caring skills and tools to be able to deal with the situations they are dealing with at home.

The person is maybe an hour in an appointment with the healthcare professional and then they are how many hours at home every week. It is the family who are dealing with that all the time. That is the work that we do. I remember one mum saying that CAMHS showed them what to do and Bodywhys showed them how to do it. It is really that kind of ongoing support.

You then also have a cohort of parents who are supporting those older adults with eating disorders. They are adults in their 40s who are living at home and often are not engaged in treatment and the parents are the only ones there 24-7. We have to be able to provide ongoing support for those people as well.

When you look at different aspects of health, for instance, with addiction, you have different types of programmes that include the family into the learning about the person's addiction, how recovery works and all that. I know Bodywhys does some of that but would the witnesses like to see more of that rolled out throughout Ireland to families, if that was possible? I know funding is always going to be the issue but is that something that could be achieved? Would the witnesses like to see a national campaign to involve families into the care of the person?

It is down to the medical teams to accept us as part of the medical team. As Ms Parsons said, they see them for an hour and then they are home for the other 23 hours and the other six days a week until they are back the following week. Parents in general, and I am not saying everybody, do not feel part of a treating team.

I thank everyone for coming in.

The witnesses said there are 14 counties without teams. Do the witnesses have the names of those counties to hand? Does Donegal have a team?

Donegal does not have a team.

Thank you, that is an answer.

The witnesses were saying the transition from CAMHS to AMHS is a big problem. What do they think we can do there to try to make that more positive? From what I am hearing from parents, once you hit 18 years of age, everything seems to cease. Then, you have to get onto the adult service and the parents are no longer involved then either. They are not told as much information as they should be to support the young person.

Is there something there that we could try to do to help ease the thing along in order that it goes from one straight down to the other without any problem? Do the witnesses have ideas that we could put to the health board to try to move this along? It seems to be a serious issue.

We are here to try to get the Government to provide the funding, which seems to be coming, but the HSE needs to do it now. An awful lot of people who get eating disorders get them in their teens. Once they turn 18, they are gone from CAMHS and they have nothing. We need services and supports where parents can go and where the loved one goes.

In many cases, we have seen in our parents' group that children are doing well in the services and are connecting well with their team but then they turn 18 and they are gone. They have nothing more after that. In respect of mental health, they are now looking to decrease the age from 18 to 16. If that goes through, it would mean that at the age of 16, those people would then be going into adult services.

I should tell Senator Boyle that last year, I spent an amazing three days with Donegal clinicians doing a training for them. While they are not an official specialist eating disorder team, they do have the expertise within their general team. That was the Donegal-Sligo team but it was clinicians from the Donegal team.

If somebody from Donegal came to me now, where would they be referred to? Is it Galway or Dublin?

It is Sligo. There is the Sligo eating disorder team, which has Donegal within its catchment area, but there also is expertise within the general teams in Donegal.

The witnesses also said there are only three HSE beds in Dublin for people with eating disorders.

There are three HSE beds in Ireland for adults.

That beggars belief.

That is 20-plus years old.

I cannot believe that statistic. In the whole of Ireland, we only have three beds to cover the whole country.

They are not for all of Ireland. There are only three beds in Ireland and they are only for the catchment area of St. Vincent's hospital.

Do the witnesses know how many people would be waiting to try to get into those beds at one time?

Unless you are in the catchment area, you cannot get into that bed.

If I have somebody in Donegal and I need to get them into that bed, there is no way they can get into it?

Correct. I was on the far side of the Liffey and I could not get my daughter into one of those beds.

The whole thing is a stark reading. It really is.

Regarding the Riverside House hub, we kind of need one of those in every health board area, being honest. Looking at it, the population is out there.

Can we not do something in schools to try to educate children on eating disorders?

We do that. We have a huge schools programme. We provide a teacher-led schools programme from second year to fifth year and we also do school workshops.

I heard Ms Crotty on "Morning Ireland" this morning. I pass on my sympathies as well. It is very difficult. I see that one of CARED Ireland's recommendations is to re-establish a sub-committee on mental health. Is that the sub-committee we had under the health committee in the previous term? It is.

Is Riverside House specific to the catchment area it is located in or is it a national facility?

It has a catchment area.

In other words, if someone from Cork needed the service of Riverside House, they would not get it.

Someone from the northside of Dublin would not get it.

That is terrible. CARED Ireland's recommendations make sense. What would CARED Ireland do immediately? Has it looked at international best practice? Has it looked at a particular region where the service is at the required standard and that we should be trying to emulate?

The honest answer is I have not looked at any place else. My daughter was in London in a designated eating disorder unit for 16 adult eating disorder patients. The service was contained there. It was obviously not based on catchment area and the patients had access to a step-down unit when they left hospital. Regarding the model of care, the service here should have been a very good and, according to the Minister of State, Deputy Mary Butler, it promises to be very good going forward. However, the problem is that it is a ten-year plan. We need something now for the patients and the families who are struggling now.

As part of that plan, there needs to be a short-term immediate plan. We would all very much support that.

CARED Ireland has done very good work in the area of education. I commend the group on it. How has CARED Ireland found its engagements with the HSE? I know the group has met the Minister of Health, Deputy Carroll MacNeill, but what is its relationship with the HSE like?

We met with Bernard Gloster on a couple of occasions. We have also met the national clinical programme for eating disorders, NCPED, on a few occasions. I would say our relationship is very good. We are very open and honest with the HSE. We believe, as parents, that we do not have a voice, that is, for parents from parents. We want that voice to be heard and, at the time, Bernard Gloster appreciated the fact that our voice needs to be heard. The facts and figures look very impressive but, from a parent's standpoint, we want this committee and the HSE to hear from us, as parents, how the services are working on the ground. We do not believe that is being heard properly.

I thank Ms Crotty for her answers.

I thank the witnesses for being here today. I can imagine that it has been a very lonely and frustrating journey for them. I also acknowledge the determination and resourcefulness they brought to their campaign for better services. I am also conscious that what CARED Ireland wants is clear action and not praise, which is what many of the advocacy groups that attend our committee want.

There was a clear acknowledgement in Sharing the Vision of the risks for young people involved in transitioning from CAMHS to adult services. We have covered this, but it is a key point. I worked in adult mental health services and I am very conscious of how an abrupt discontinuity of care comes with the risk of serious regression for the person. That is particularly the case with severe mental health difficulties. There was a clear commitment around seamless care in Sharing the Vision, but there seems to be a wide gulf between that commitment and the reality for people attending services. What is the emotional and practical burden like for families who have a member attending CAMHS and are reaching that cut-off? What is that like? It sounds as if it is like facing into an abyss with regard to continued support.

We hear from families in our group every day about the sense of hopelessness and that they do not know where to turn. When children turn 18, they are cut loose and put on a waiting list for AMHS. In reality, there should be a smooth transition process where somebody discharged from CAMHS can then walk in to the AMHS service the following Friday or Monday. There should not be this break. They should not have to go on a waiting list. That should not happen because of the distress and the setbacks this can cause. Some people are having to wait a year to get back into the service, so all of the good work that had been achieved prior to that within the CAMHS service is undone. People get on this wheel again and there are just backward steps.

Can any of the witness tell me about the experiences of people who have had to access treatment abroad? How are those services accessed? I know it is different for every person but, typically, what is the duration of time spent abroad by people receiving treatment? What are the costs involved?

My experience was a long time ago. Jennifer was a ward of court here at the time, so we did not pay for services over there. We paid for our trips back and forth, our accommodation and all of that. Truth be told, we only have one person in our group right now who has someone over there; other than that, I do not have any experience. With our submission, we have put in comments from parents as to how they feel the services are right now.

The latest costs we have for the HSE treatment abroad scheme are from 2024 and they were just shy of €5 million. That was for eating disorders alone. That €5 million could be spent here, with patients being treated here in their own communities and with the support of their families.

I know CARED Ireland spoke to the Minister of State, Deputy Butler, about the addition of 19 inpatient beds and there is potentially an announcement coming on that in April. Did the group get any more detail on the commitment, for example, about the geographic spread of those placements?

I have some detail on that. There will be 22 beds in total across three locations, namely, Dublin, the south-west region and the north-west region. There will be ten beds in Dublin, six in the south west and six in the north west. They will all have a national catchment area. The Minister of State has also announced that the beds in the Linn Dara unit are being reopened for adolescents.

We still have some time left. I will allow two minutes per member for more questions.

I thank the witnesses for the information they have provided to the committee already. With no national register of people diagnosed with eating disorders, how much faith can someone who is experiencing an eating disorder have that any future plans will be effective? How many of the 40% of referrals to CAMHS that were rejected last year relate to any eating disorder?

I do not know about the 40%, but the HSE officials present should be able to answer that question.

I would like to think so.

What was the Deputy's first question?

Without the lack of a national registry, how can we be confident that future plans and commitments-----

We need a national registry. We need that database and we need all of that data together. There was no data in 2018, so that is being built up.

In the middle, there was Covid as well.

We do not use Covid as an excuse six years on.

I am just saying the numbers rose. The model of care was launched in 2018, but there is now a completely different landscape, which is why we need a national registry. There are so many more referrals and so many more people with eating disorders.

In CARED Ireland's experience from the families it works with and supports, is there information coming to it about those 40% of CAMHS referrals rejected related to eating disorders?

I do not think we have those statistics. Going back to the number of people with eating disorders in the country, there are no national statistics. The only number we have, as Ms Crotty said, are gathered through the NCPED and those attending the teams. There are so many people in those 14 black spot areas, for instance, none of whom are recorded in the databases. We are asking whether a national survey can be done. For instance, GPs are the first port of call. A survey of all GPs could ask how many people they have on their records with eating disorders. Digitisation is coming down the line, which might gather some of that data but in the meantime, it is all circumspect. We do not really know many people suffer from an eating disorder.

To clarify, the figures provided are based on those accessing the eating disorder teams.

Correct.

No other data is included, recorded, reported or correlated.

Correct.

Following on from Deputy Clarke, I think the witnesses will agree there is a large, hidden group of people who have eating disorders who never present to anyone because it is a spectrum. They do not even present to their GPs. There may be suspicions within their family that there is an issue - overexercising and controlling their diets. Unfortunately, social media plays a huge role in that as well. Will the witnesses comment on that?

It is not just a question of this service, but also of children with complex medical needs who are under general paediatrics and then enter adulthood. Once they do, they end up with no one taking charge of their holistic care in a hospital setting. Unfortunately, we have gone down the silos, so everyone is super specialised, but sometimes people living with anorexia nervosa have significant medical issues and die from them, such as heart failure. It would be good to have a register of the known admissions and of designated general physicians in hospitals who co-ordinate their care. This would allow for the transition from paediatrics to general medical services. The same would happen in the mental health services from CAMHS to adult health services. What do the witnesses think about that?

If you look at our stats, there is a proportion of people who are not in any form of treatment, have not accessed their GP, are not engaged in any treatment and are just using our supports. There are lots of families whose person with an eating disorder is also not engaged in any treatment, so the families are just accessing supports for themselves. There is a hidden number of people.

They are the lucky ones because there is some self-awareness. As we know, the person living with this often has very little insight into their issue.

There is a proportion who go to their GP, who will say their bloods are fine and there is nothing he or she can do. That was my experience two months ago. There are also the patients brought into accident and emergency departments who are told they are not sick enough and they need to go home. That eating disorder voice says to these people that they are not sick enough, they have to get sicker and then they will be looked after. We have seen it in our groups. Some of these people are-----

Skeletal.

They are crying out to go into for support and help and they do not get it.

To get an admission, we are talking about a BMI of 14 - someone who is literally in danger of dying.

The other point that is important going forward is that, for those who die from an eating disorder, it be recorded as an eating disorder and not an associated complication.

I noted that in the presentation. I agree.

The result of doing nothing is a huge cost to families and the State. There is a mental, emotional, physical and economic cost to everybody concerned - families and the State - because of the knock-on effect. We know of people in their 30s and the physical effects of the eating disorder that started for them 20 years before are horrendous.

Do the witnesses have any thoughts on early identification of eating disorders in primary care, including GP practices, or school settings, for example? Are there missed opportunities for early intervention before eating disorders become entrenched and severe?

In fairness, I think Bodywhys's education programme, by going into schools, makes children them aware. I wonder sometimes if we should tell parents more. I am a nurse. My husband is a doctor. Did we see it coming from my daughter? The answer is "No". Even looking back, did I see it coming? I really did not. It is to continue as Bodywhys is doing, getting in there and talking to them.

Is more resourcing needed for that?

There is always more needed. We are a very small team and we do a huge amount of work across primary and post-primary schools and at third level.

If that could be expanded to what Bodywhys would like to be doing ideally, will Ms Parsons give us a sense of that in terms of funding or the scope of engagement in those settings?

We have a youth development manager and one youth development officer. That one person does school talks but she is confined to the catchment area of Leinster. For the rest of the country, it is very difficult for us to get into schools. We have created a programme on eating disorders and safe social media use, body image and thinking about yourself in the world that can be delivered by teachers in schools to try to meet that gap. It is unrealistic to think we will get into every secondary school. We will get in for one talk but what about all the other years? We have created an amazing programme that is done with lived experience of eating disorders and young people talking about social media use and body image. That was just developed in October. It has already been accessed by, I believe, up to 10,000 students.

To follow up on parents and families with everything going on and feeling not supported by the teams, I think the phrase was used that parents are sometimes even blamed by the teams, the very people there to support them. I just got a message from somebody watching who has this lived experience. She told me she was doubly traumatised - traumatised by the illness and then traumatised by the interactions with the team and the treatment. That feeds into the urgency. I hear emergency department consultants, for example, who are very vocal in championing their patients. They talk about overcrowding, etc. I do not get the sense - perhaps I am incorrect - that psychiatry is doing the same. Is that part of a broader stigmatisation because it is an illness associated with mental health? We need to create that urgency. That has to be at the political level.

I know from my daughter's friendship group and talking to my adult daughter that this is a live issue with lots of young women and girls. Is there an increase in the number of boys and young men impacted by this? What percentage of the membership is do with a male child?

In our membership, there is a smaller group of boys. In the big picture, though, there are more and more.

In the UK, the NHS has statistics. Of people diagnosed with eating disorders, one in four is male.

Is the college of psychiatry doing enough in terms of the power difference - the social contract between them and the group?

We wrote to the college of psychiatry asking them to speak out about the lack of services, which they did last year. Our own feeling is that you hear all this about cancer and that we need more and more and all of the services that are coming out but actually, they are not coming out. There is nobody. We are the only ones who are coming out and saying that it is not enough, we want more, it is not good enough, this is happening, that is happening and we need the services. When we have met with the HSE and we have met with the Minister of State, Deputy Butler, this is what we have been saying. That is why we want our voices to be heard. It is because we can say that because we are the ones who are struggling and suffering and we are hearing it from the parents who are struggling and suffering. We want our voice to be heard.

I think Deputy Roche wanted to come in.

I probably said as much as I wanted to say earlier.

My final comment we need to get to where we have a service in every county in Ireland. Geography should not be a barrier. It is outrageous that there are counties that do not have a support service, a counselling service or an eating disorder support. That is a fundamental failure in the system and it is failing people. When you fail people, it is an insult to suggest that we are managing. We are not.

You are not just failing the person who has an eating disorder, but are failing the whole family.

That is all I wanted to say.

I will give each group two minutes to make closing comments.

We are CARED Ireland. We are a voluntary group of parents and carers. We have no funding. We are providing workshops for our parents and carers and any for parents and carers who have a loved one with an eating disorder.

We are asking for more services. We will keep on fighting and shouting for more services, and demand that the people who are suffering with eating disorders and their families deserve to be heard.

The biggest problem right now is the fall for those patients who are coming from the child and adolescent mental health services, CAMHS, to the adult mental health services, AMHS, services.

I thank the committee members so much for having us today, for listening to the experience and for using that experience to guide their conversations with the HSE later on.

As I say, recurring consistent funding is what is needed. We have seen that the delay happened when that did not happen.

We provide support for both carers and people with eating disorders and are filling that gap between what services provide and people who are out there trying to cope on their own. We appreciate that it is a really complex issue. It is a really complex illness. It is insidious and very counter-intuitive. We hope to be able to continue to provide that valuable support for everybody.

I thank all our guests for their contributions and for the work they are doing. It is a voluntary service and they work in a voluntary way.

On the issues highlighted here, in her opening statement, Ms Crotty talked about the mortality rate, which is very high in this whole area. The other issue was in relation to the transfer from children's services to adult services and identifying that in 14 counties, we do not have any real service. In the statement she referred to, she talked about where we have come from in the last six or seven years. A huge number of additional people have been taken on but it is still far off what we really need. They have clearly set out what has been done, what needs to be done and how we go forward on this. I thank you very much.

Following on from meeting with the HSE today, the committee here obviously will make its own submissions to the Department of Health and to the HSE on this as well. Again, I thank them for all the work that they are doing and for the dedication and commitment that they give in highlighting this issue.

The meeting is suspended for a few minutes so that the HSE can join us.

To continue with the committee's consideration of the issues relating to the treatment by the health service of people with eating disorders, I welcome from the HSE: Ms Martina Queally, regional executive officer, HSE Dublin and South East; Dr. Michelle Clifford, consultant child and adolescent psychiatrist and the HSE national clinical lead for eating disorders; Dr. Amir Niazi, national clinical adviser and group lead for mental health; and Dr. Sinead Reynolds, integrated healthcare area manager, HSE Waterford and Wexford.

I now invite Ms Queally to make opening remarks on behalf of the HSE.

I thank the Chair and members of the committee for the invitation to meet to discuss matters relating to the treatment of eating disorders in the health service. The Chair has already introduced me and my colleagues. I welcome the opportunity to highlight the important improvements in HSE eating disorder services in recent years, as traditionally the treatment of eating disorders has been a challenging and stigmatised area within mental health services and acute hospital systems.

Eating disorders are serious and complex conditions associated with the highest mortality and morbidity of all our mental health disorders. The HSE recognises the significant health, social and economic impact on individuals, their families and society. For this reason, eating disorders were prioritised within the national clinical programmes, and a dedicated national clinical programme for eating disorders was established in 2016. In 2018, the programme published the model of care for eating disorder services, a landmark body of work that set out an approved national strategy to deliver high-quality, accessible and value-for-money eating disorder services in Ireland. This model of care was developed in partnership with Bodywhys and the College of Psychiatrists of Ireland. The partnership with Bodywhys has endured and strengthened and remains an effective collaboration with the clinical programme.

The national model of care made several key recommendations, including the development of a national network of specialist outpatient eating disorder teams, a stepped model of care based on clinical need, the development of a skilled workforce, and the ongoing evaluation of services. It is well recognised that the majority of people with eating disorders can recover with outpatient treatment, while a smaller proportion require a more intensive level of care. The HSE’s core focus has, therefore, been the development of regional specialist outpatient eating disorder teams across both child and adolescent mental health services, CAMHS, and adult services. These teams form the foundation of safe, high-quality care and enable more efficient and cost-effective use of day and inpatient services. Early intervention and consistent, evidence-based specialist care make a profound difference to patients' recovery.

Since the implementation of the model of care, the HSE has prioritised recurring investment, with €11.9 million allocated between 2016 and 2025, and over 110 specialist clinicians have been recruited. This has enabled the establishment of 11 consultant-led specialist teams, with a further three teams currently in recruitment. We have also committed a further €2.3 million in new funding, secured for two additional teams that will be developed this year in 2026. This brings the total investment to €14.2 million recurring funding. The HSE remains focused on ensuring this investment is used to develop and sustain specialist eating disorder services that can work effectively within our networks of mental health care and ensure access and early intervention.

As a result, increasing numbers of children, adolescents and adults are accessing assessment and treatment each year by our specialist eating disorder teams. In 2024, referral rates increased by 33%. Over half of assessments were for children and adolescents, while the adult assessments increased by over 50%. Of all referrals, 80% were seen within eight weeks and 90% of those starting treatment did so within four weeks of assessment. Almost 500 people were engaged with specialist eating disorder teams at the end of 2024, representing a 20% increase on the previous year.

Demand for service has grown beyond what was anticipated when the model of care was first published. Despite this increased demand, the HSE has delivered important developments, including the first adult eating disorder day programme, the delivery of evidence-based, intensive, multi-family therapy for adolescents with anorexia nervosa, national awards for service excellence and research outputs, and the development of a self-care eating disorder app.

Alongside outpatient services, there have been improvements in higher levels of care that are provided in acute hospital and inpatient services. Child and adolescent mental health services-approved centres have developed inpatient eating disorder programmes, with further capacity planned through the new children’s hospital. While eating disorders are now the most common reason for CAMHS inpatient admission, inpatient care is required for fewer than one in ten eating disorder CAMHS patients, with the majority treated in outpatient services.

We know challenges remain in relation to adult inpatient provision. A national report on adult eating disorder bed capacity has been submitted to the Minister and its recommendations will be considered as part of the forthcoming national mental health capital plan. Integrated care has also progressed, with the appointment of a dedicated consultant paediatrician and gastroenterologists aligned with eating disorder teams, the publication of national clinical guidelines and the development of collaborative pathways with acute hospitals across regions.

Developing a skilled workforce in the evidence-based care of eating disorders remains a core priority for the HSE. We do this through training in evidence-based treatments, national webinars and team development forums. Last year, over 300 clinicians attended national training in family-based therapy for anorexia nervosa, delivered for the first time by Irish clinicians.

The partnership with Bodywhys remains vital, particularly in supporting people with lived experience. An expert by experience group has been convened and lived experience will be central to the upcoming review of the model of care, which has commenced. Feedback to date from those attending our services has demonstrated high levels of satisfaction, encompassing family and carer involvement, staff expertise, therapeutic alliance and service access.

The HSE acknowledges the need to continue to focus on equity of access to outpatient services to develop much-needed adult inpatient beds. To that end, the review of the model of care for eating disorder services will take into account emerging best practice since 2018, growth in population at the most recent census of 2022 and demand for services-based on data.

The HSE welcomes the review of the model of care. We look forward to hearing the findings on emerging needs in relation to the new HSE regions and the implications for population-based resource planning. The HSE will continue to develop services in this area. We will also continue to work closely with the Minister of State, Deputy Butler, and the Department of Health in this regard.

The continued implementation and review of the model of care, alongside sustained investment, will ensure that people with eating disorders regardless of their age or location can access timely, appropriate and effective care. This is what individuals, families and carers rightly expect. It is what the HSE and the national clinical programme remain fully committed to delivering.

I thank Ms Queally for her comprehensive presentation. We will now hear from Members. The first speaker is Deputy Daly from Fianna Fáil and he has four minutes.

I thank the witnesses for coming in today. Given that I have just four minutes, I will ask a series of questions and the witnesses can answer comprehensively.

Why are the services so inadequate for an illness with such high morbidity and high mortality? I cannot imagine any other area of medicine not be driving advocacy in this area with such high morbidity and mortality, which is probably underestimated, with the figure for chronic sufferers at 20%. There are people who are dying probably from the complications of anorexia nervosa and eating disorders and who are not recorded as such.

The other issue that has come through from CARED Ireland and Bodywhys is this transition from adolescence to adulthood. This is not just specific to eating disorders. It is a recurring theme between CAMHS and adult mental health services, which is inexplicable because it does not require funding. It requires planning, co-ordination and communication.

I have a question concerning the reference to 80% of all accepted referrals. If a GP refers someone with an eating disorder, are the witnesses saying that 20% of those referrals are inadequate? Again, I ask because there is a recurring theme of rejected referrals. This is probably the only service where there are rejections of referrals from any services in the health service.

In terms of catchment areas, I still do not understand something. We have only three adult beds in the country, yet the only people who can access them are people in that catchment area, and this is a recurring theme. Especially in psychiatry and mental health services, the system seems to serve the system and not the client or patient. I would like the witnesses to comment on that because to me such a situation seems archaic.

Finally, there is the issue of co-morbidities and children suffering from other issues, perhaps neurodivergent and that, and their referrals not being accepted into the eating disorders programmes. My time is short and these are the main issues I wanted to raise.

Dr. Clifford will respond to the Deputy's questions on morbidity and mortality, and co-morbidities.

There have been huge improvements on the ground with the specialist eating disorder teams.

I know that.

On the mortality question, we absolutely recognise this, which is why we have prioritised the delivery of services and the training of our staff, not only within the eating disorder teams but also through training that has been offered out to community CAMHS teams and adult mental health services. We recognise the mortality and morbidity aspects, which is again why we have prioritised the services.

On the transition from CAMHS to adult services, we recognise that approximately 10% of those attending CAMHS eating disorder teams will require transition to an adult eating disorder team. It is the minority. We are absolutely recovery focused. For our staff working in CAMHS eating disorder teams, we have policies whereby we can refer young people from the age of 17.5 to adult eating disorder services. We have transition pathways where we can nominate a key worker who can draft a joint care plan.

The majority of young people will not require transition to an adult eating disorder team. Clinically, on the ground, I work in a CAMHS specialist eating disorder team. For the 70 open cases that I saw in the last year, just three young people required transfer to the adult eating disorder team, and all of them were successful and transitioned to the eating disorder team. This is what we want to be able to replicate across the country. We absolutely understand that it is such an apprehensive time for families, parents and young people as well.

The lived experience expressed by the advocate groups is not that experience. Is Dr. Clifford saying that it is only three people out of 70, a small minority, needed transfer and that the rest were completely cured?

Yes. That is my experience on the ground. Recovery is absolutely possible. The majority of young people, or 95%, will recover in outpatient care. That is for all people with eating disorders. Only 5% will require admission to hospital. It is one of the great myths around eating disorders that recovery is not possible and that people absolutely need to be admitted to hospital for treatment-----

I am not suggesting that.

-----and it is not the case.

I reference the gap expressed by the groups who came here this morning - from Bodywhys and CARED - with whom the HSE works closely.

Yes.

They say there is a gap in service between adolescence and adulthood. That is also our experience of other areas of CAMHS, so it is a recurring issue.

I acknowledge that is the experience of people in different parts of the country.

So it is geographical issue as well.

It is absolutely what we are striving to change. When we are delivering eating disorder services and teams, this is about a culture change across the whole system. We came from so little, not only in terms of the clinicians on the ground but also in terms of our training. This is a core focus for us and another core focus is early interventions so that we can prevent morbidity and mortality in the longer term.

The next speaker is Deputy Clarke.

I thank our guests. I thank the HSE for promptly providing responses to my parliamentary questions. It is always appreciated.

We have had the clinical programme in 2016 and the model of care in 2018. At any point during the intervening years, has that been fully staffed, fully operational and operating at capacity across the State? It is a "Yes" or "No" answer.

It takes time to build teams.

No. Has it at any point operated at full capacity?

It is almost at full capacity now.

No, that is not my question. Has it ever - "Yes" or "No"?

Deputy, with respect, you have to build a team.

So "No" is the answer.

No, it has been fully funded-----

But it has not been operating at capacity.

-----and the funding has been ring-fenced.

Has it been operating at capacity?

I would say that it is an incremental process-----

So "No" is the answer.

-----to build.

In her opening statement, Ms Queally stated that the HSE recognises the "health, social and economic impact" of eating disorders. How can she sit in front of this health committee and say that while a clinical programme has not been operating at full capacity?

We are building the teams.

All right, we will leave that alone.

We are building the capacity. We do recognise-----

In terms of referrals to community teams, particularly around the issue of CAMHS, since 2020 there has been a 200% increase in children waiting, and a 250% increase in children waiting over a year. What percentage of that increase relates to eating disorders?

I am going to go to the clinicians. Dr. Clifford will reply to the question about the percentage with eating disorders.

The model of care is an incredibly ambitious programme-----

I know but it has also been there since 2018.

-----which is what we need for eating disorders.

We have had a clinical programme since 2016. That is ten years ago.

Yes, and it was put in in 2018. We have been implementing it for the last eight years.

Okay. Let us go back to my question about the percentage increase and the number of those that refer to eating disorders.

Does the Deputy mean the increase in the demand that we have seen?

No, in terms of the waiting list for CAMHS. There has been a 200% increase in children waiting, over the last five years. There also has been a 250% increase in the number of children waiting over a year for a CAMHS appointment. What percentage of those relate to an eating disorder?

What I can say is that the Mental Health Commission's report in 2023 looked at all referrals to community CAMHS teams relating to query for an eating disorder-----

Does the HSE know?

Yes.

-----and the average waiting time was one month at that stage.

But does the HSE know?

The current wait list at the moment across the eating disorder teams, as at 1 December, with 88 people and there was almost-----

Have they all been offered an appointment?

I do not have the exact information on that-----

Dr. Clifford does not know.

-----but the 88 people include those, I believe, who have been offered an appointment-----

I know because my parliamentary question asked that.

-----and the referral has been accepted.

Dr. Clifford does not know if those 88 people have been offered an appointment.

It works very dynamically-----

The HSE does not know.

-----but we can certainly get that information.

The HSE does not know what percentage of children on CAMHS waiting lists are there for an eating disorder. Does Dr. Clifford know, of the 40% of CAMHS referrals that were rejected, how many relate to an eating disorder?

What I can say in relation to the CAMHS eating disorder teams is that nationally we have a 75% acceptance of referrals.

Half of those that are not accepted are redirected to mental health services.

Those are accepted referrals. My question is about the 40% of referrals that were not accepted by CAMHS. Is there any information regarding the level of eating disorders among those to whom these referrals relate?

I have information on referrals to the community specialist eating disorder teams.

That is massaging the figures, with the greatest of respect. It goes back to the 80% of accepted referrals. It tells the committee nothing about the unmet need that is there.

In relation to those who are diagnosed and assessed in community disorder teams, 15% do not have an eating disorder diagnosis. This highlights that we see people who are below the clinical threshold, and we are really highlighting early intervention.

I have one more question because I am not getting definitive answers. How many people deteriorated to the level whereby they needed emergency department admission or crisis care while waiting for specialist care in the past 12 months?

Those who have accessed care in 2024-----

Is it the case that this chronic lack of data means that, in effect, there is very little information on the need that presents in eating disorders and, more importantly, the unmet need?

In terms of our data systems, Deputy Clarke correctly-----

Do you have a data system?

In fairness, Ms Queally wants to provide the information. I ask Deputy Clarke to give her a chance to do so.

Our data systems are fragmented at the moment. This is acknowledged, and we are building better data systems. We have the Community Connect project, which Dr. Reynolds can speak about. I chair the national group on Community Connect.

I am out of time.

We also have regional groups. Community Connect will give us fuller information. We know that only some of our CAMHS teams have electronic data systems that capture the type of data Deputy Clarke is speaking about. That said, the clinical programmes do monitor the data on the written documents that are submitted every month from our teams to the clinical programme through the regional structures.

Let me finish on this question. Will the work being done on data correlation result in a fully functional registry of eating disorders?

We do not have a register of eating disorders in the country-----

Will it result in a register?

We will have much better differential data.

Will it result in a registry?

I do not know whether there are plans for a national registry of eating disorders. I do not think there are. When we have our electronic patient data systems we will have better patient data by region and by service.

How can you plan with fragmented data? You cannot do so.

I must go to the next member.

The witnesses are most welcome. From the testimonials we had earlier from Bodywhys and CARED Ireland, I picked up on a lot of language used in the context of the firefighting, in many ways, that some people have to do in order to get into the service. Expressions about there being no sense of urgency were used. Geography is a massive issue, and funding seems to be a fundamental obstacle. In some instances, words such as "disastrous" were used with regard to the scheme of things. A real plea made was to the effect that we need services. That goes without saying.

We speak about more investment and the need for greater improvements, particularly to the database, all the time. The one thing I would plead for is that once somebody with an eating disorder presents to a GP, they should, regardless of their age, be placed on a database and there should be follow through with them until they are in a good place, with their disorder managed, cured or otherwise. It galls me when I hear families say that when children reach the age of 16, they get lost in the system. Who is it that should pick up for these people?

I am conscious of time, but earlier I told a little story about a crisis meeting that I and my parliamentary assistant were invited to with a mother and daughter. The daughter, who is over the age of 30, wanted to die because of the lack of support and because of being rejected. That is the word that was used. They had been refused the support they were pleading for. I went home from the meeting and was disturbed by the fact that the system would be geared to allow this to happen. I was thinking, as most people would think, would it not be great if that person had a full assessment, including early intervention, and that there would be some belief about what she was presenting with. I thought it unusual that BMI is the tool of judgment as to whether someone is obese, anorexic or otherwise. I thought it was rather bizarre because the person was emotionally wrecked. Eventually, through political intervention, that young lady got support. The system is fundamentally wrong if somebody has to go to that extreme in to get help. It should not be this way. Is should be driven by need as opposed to political interference or lobbying.

I say this by way of stating that I hope it is now historical. I plead with the witnesses to have constant liaison or engagement with those organisations that earlier presented facts on their needs. We must try to get to a model that will fit. It is useless for somebody who lives in a county that does not have a support service to have to travel miles in order to get an intervention of help. There is a real deficit in that regard. I do not have a question, but my wish - and the wish of all of us here - is that there would be support services on a county-by-county basis. Perhaps the witnesses will make a final comment on that.

I agree with Deputy Roche. I understand the real trauma for individuals and their families in terms of eating disorders. We have spoken to families, and we understand the pain and suffering caused by this condition. Very importantly, we have had ring-fenced funding for eating disorders since the model of care was established. We have learned a lot over the years during which we have been implementing the model of care. We continue to learn, and we look at international best practice as well as our own experience domestically. We are reviewing the model of care and extending and developing it. The ring-fenced funding, the capital plan and our stepped model of care that Dr. Niazi will speak to are elements of building a proper evidence-based programme for people with eating disorders in order that our general mental health services, specialist services and child and adolescent services all act in concert. This is very important in order that we do not have gaps in transitions between child and adult services or between mainstream mental health services and specialist eating disorders teams. I will ask Dr. Niazi to speak on the model of care.

Very briefly, because I want to go onto the next speaker.

Four years ago we had only one functional team. We now have 11 functional teams, three teams in recruitment and two more teams will be approved this year. By the end of this year, we will have 16 teams using the model of care. Yes, transition is a problem. If we have a child team and no adult team, people get lost. Ideally, transition is smooth where we have a child and an adult team in the same area. The hope is that if we have 16 teams by the end of this year, transition will be addressed and we will have smooth transition from child to adult services. We will have 16 teams to take on all of these eating disorder patients. Community services are the main bulk of services comprising 95% of patients. Only 5% are in inpatient care. We have surplus beds for children. Beds were closed in Linn Dara, but we were still at 70% capacity and had surplus beds available. We will be getting more beds in the new children's hospital.

We have a clear plan for the adult beds. We could not convert the existing beds into eating disorder beds because of the increase in population, demand and all of that but we are building new units in the next three to five years in our capital plan. We will address that.

I thank the officials from the HSE who are here today. I also pay tribute to the powerful testimonies and work by the parents and advocates who spoke earlier. I seek clarity with regard to the beds. The State spent almost €5 million sending patients to the UK in 2024 and almost €1 million on private providers in this country in 2023. There has been a promise of 20 beds since 2018, and there are three beds there. We hear from the Minister that there will be 19 beds at some stage. When are they going to be delivered?

Since 2019, not a single child has gone to the UK for the treatment of eating disorders. We have treated everyone within Ireland, whether they went through the public sector at Linn Dara and our inpatient units or through the private sector at St. John of God Hospital or St. Patrick’s Mental Health Services.

To clarify, is Dr. Niazi saying that there are patients who went to the UK for treatment prior to 2019 and are still in the UK for treatment with an eating disorder? Is that why there is a 2024 bill?

No. I am talking about children. For adults, in 2025, only one new patient was signed under the treatment abroad scheme to go to the UK. We have a gap in our adult beds but we are using the private sector here - St. John of God Hospital and St. Patrick’s Mental Health Services - to fill that gap. The more we develop community services, the less the need for inpatient care will be. I can provide the Deputy with the data in that regard. Funding is paid for those patients who are attending services already or going privately to the UK, but once we have those beds built and increased capacity here, that number will go down further.

To be clear, the more outpatient services in place, which will be a good thing, the less inpatient need there will be in the future. How many beds does Dr. Niazi believe are needed? Obviously, there is going to be a capital review with mental health. Is it 19 beds? Is it more or less than that? What is the net number of beds as opposed to-----

If we look at the regional model from 2018, we thought we might need more beds because we did not have any. We have already revised our numbers because the need will decrease as we develop more community services. As it stands, we think we need 22 beds in three centres, namely Dublin, the south west and the north west. That is what we have in our capital plan. We are not going to wait ten years to deliver that. We have an ambitious target that by 2030, we will be bringing those beds on stream and they will start to be used.

Although the need is there and we do not have the beds, the number of patients going to the UK has gone down. That is because an eating disorder is not like an infection where people become very sick in a short period of time. If there is early intervention and we treat patients early, we can decrease the number of people who become so unwell that they need inpatient care. That is the ethos by which we are starting to provide services in the community. The number of people who become so unwell is down because we have treated them early in their illness.

Sure. With regard to children's beds, are there surplus beds? Are there empty beds at the moment? Is that with regard to CAMHS beds overall or a subset of that?

All I am saying is that we will have additional CAMHS beds when the new children's hospital opens. The current beds that we have are still not at full capacity. Last year, we used them at 70% capacity. More beds were available than were required for children.

The HSE is in the process of closing beds in St. Vincent's Hospital in my constituency in advance of the beds opening in the children's hospital. I am quite struck at the bravery of closing beds in advance of beds opening. Maybe the HSE has a firm date as to when those beds will open in the new children's hospital. Why are beds being closed at the moment?

First, the beds in Linn Dara were closed because of recruitment challenges we had in our nursing-----

They were closed not based on need but, rather, recruitment challenges.

It was because of recruitment. Even with less numbers, we were not at full capacity. We still had bed capacity. When the new children's hospital opens, it will open in two phases. In the first phase, we will have ten beds and we already have a budget for those. A further ten beds will open in the second phase. The overall number of beds in St. Vincent's University Hospital and elsewhere is part of the discussion about what we need. We will not need more beds for children when the new children’s hospital opens. Beds for adults are where we have a challenge and that is what we are working on with the plan.

It is shortsighted to close beds in advance of the new children's hospital opening. Approximately ten beds are being closed in St. Vincent's Hospital this year in Fairview. That is, in my book, wrong when I see that there is demand out there. I can talk to Dr. Niazi later about that.

I thank everyone for coming in. Is there a unit available in Donegal?

When the Senator says unit, is it-----

If my child, God forbid, had an eating disorder and I turned up at Letterkenny University Hospital, where would I be referred to after that? Would I have to go to Sligo?

Currently, we have an adult eating disorder team that covers Sligo, Leitrim and south Donegal. In terms of CAMHS, that is an outstanding area when it comes to delivering specialist eating disorder services. Young people continue to be referred through their usual care pathway, which is their community CAMHS teams, as they have always been seen even prior to the model of care. In Donegal, there are dedicated posts for eating disorder services. There is an advanced nurse practitioner and a dietician. Also, the clinicians on the community CAMHS services who currently treat eating disorders are incorporated within our eating disorder network. They access our training programmes and clinical supervision. The referral pathway is into the existing mental health services.

What I am hearing about, both at home and here today, is the transition from CAMHS to AMHS. Two people have been in contact with me in this regard. CAMHS worked but once they moved to AMHS, they fell between the cracks. The parents are no longer as involved as they were. They want to be involved but, under the new system, they are not. Is there anything we can do to try to create an easy flow straight through? I refer to individuals starting with CAMHS and the system just kind of guiding on through thereafter. There is a serious issue when these children reach 18.

One mother told me that she was involved daily and knew everything that was going on but once she moved to the other system, it was just like having to drag every word out. Everything was so hard. Is there anything that we can do to try to make that a nice steady flow straight through to keep the family involved? The family is supporting this child for the last couple of years. The witnesses before the committee, as well as the other witnesses in the first session, are right; this is a whole family thing. It is not just one person who is feeling this. There has to be a nice flow straight through from when children start to when they come out the other side. We need to try to put something in place for those people.

It is an apprehensive time for people when their young person turns 18 and they need to go adult services, particularly if they have been experiencing an eating disorder. For the smaller number of people who will need transition to adult services, we want to try to provide as smooth a pathway as possible. One of the strengths of the model of care for eating disorders is that we have focus a on delivering both CAMHS and adult services for eating disorders. Other jurisdictions, such as the UK, for example, have focused solely on delivering eating disorder services for those under 18. We have been clear that we need to focus on both CAMHS and adult eating disorder services. The transition is a key area. It is a critical time for disengagement and that is why we want to work with the national policy on the transitions from CAMHS services to adult services so that people can get the care they need. We want family and carer involvement with our community CAMHS services in preparation for the transition to adult services.

Within eating disorders, our core focus is family therapy. We have siblings involved. We have parents involved. We also involve them in the transitions into adult services as well. It is a key critical area. It is one that we are very mindful of, particularly within the HSE and national clinical programme for eating disorders. We are working on those transition programmes. Again, it is the minority of young people who will need the transition with eating order services from CAMHS. The majority will recover within our CAMHS eating disorder teams when they get that evidence-based treatment, and we are able to provide it in a timely way. That is going to help improve our clinical outcome measures. There is going to be a shorter duration of treatment within outpatient services. That improves our capacity and turnover. Our staff who are from our community eating disorder teams show high rates of that turnover and capacity. Most young people are within our services for one year or less. They are able to recover within that duration. We always strive to support a young person recovering before they turn 18 years old.

As Dr. Clifford said, we have an adult team in that area. We are in recruitment with our CAMHS team. Once we have the two teams, the transition will be smooth from CAMHS to adult. Ideally, we should be having them in one location where we have examples. Even if we do not have them in one location, that transition will be very smooth.

There seems to be a problem going from one to the other. I am out of time.

We will go to Deputy Quaide. We will come back to members again because we will have some time for them to ask further questions.

I thank the HSE for attending today. The executive comes in for a lot of criticism for service failings. Those service failings are particularly serious for people with eating disorders because there is such a level of risk of medical complications, extreme suffering and death involved. It is important that the HSE be accountable for that. However, I conscious that it relies on the Government, which decides its budgets. If we had full accountability, we would have the Minister of State with responsibility for mental health and the Minister for public expenditure here. What budget would the HSE need to fully realise the model of care for eating disorders? How far short is the HSE at present?

It is a complicated question because in all improvements we are looking at our people, processes and infrastructure. As Dr. Clifford described earlier, it is partly about having a specialist focus in areas like eating disorders but also building the capability within our general teams and strengthening the interface between GP, primary care and mental health services. When we talk about our people, that is important. On the question around our data, our systems are important. In our systems, we are talking about our IT systems and data systems that inform our planning and understanding. There are also things like capital developments and all the other infrastructure, such as equipment that people need.

I apologise for interrupting. Do the witnesses have any sense of how far short the HSE is in its budget for staffing and capital expenditure?

To get the existing model of care, which we have, it recommended 16 teams. We will have 16 teams. They might not be fully resourced teams. We will build the capacity. Our approach was to have something nationally available before we fully resource them rather than having a few fully resourced teams and no capacity in the rest of the country. Our approach was to have 16 teams.

We have a day programme that we started. We will build on that. On the CAMHS beds, I have already answered. On adult beds, that is where we have our capital plan. Eating disorders is a tertiary service. It is a specialised service. I do not see many countries in the world that have taken such a structured approach that we have taken in developing these services.

It is fair to say that the advocacy groups have also identified clear failings and shortfalls. That is a matter of fact. When concerns are raised about the lack of inpatient beds and when the response from the Minister or the HSE is to defensively point out that the vast majority of people do not require inpatient admission, there is a lack of basic validation in that response. We have seen here today that the advocates are very well informed on the different levels of need that exist. This kind of defensive response comes across as dismissive of legitimate very serious concerns and it is a source of real frustration. While the lack of inpatient beds will affect a smaller number of people, the impact on that cohort of people is potentially extreme and can be a matter of life and death. That is something to reflect on.

Deputy Sherlock asked for a timeframe on the 19 additional beds. I did not hear an answer to that. The witnesses may not have the answer. Is there any general sense of when those 19 beds might materialise?

This is a ten-year capital plan. We think we will be able to deliver it much sooner than that.

Is there any more detail on that?

I apologise if we appear in any way defensive; we are not. We fully acknowledge the seriousness of the topic we are addressing. My desire is that we would come across with compassion and care for the people who we are serving. If we come across in any way defensive, please accept my apologies. That is not our intention. Our intention is to work closely with families and to provide the best possible care.

An inpatient admission for a child, whether it is general CAMHS or eating disorder, is the last resort. That is not where we want a child to be. As Dr. Niazi said, we have capacity in our CAMHS beds at the moment. We will have more capacity coming on. Our fundamental objective is to make sure that we keep people highly functioning in their communities and families. Our absolute priority around any mental health services, including eating disorders, is to provide comprehensive support in our outpatient, day services and community. That is very fundamental to the model of care. We know we require inpatient treatment. The other important point is that we have some specialist posts like paediatricians and gastroenterologists, which are an important addition. There is the requirement for us to integrate with our general medical services, but also with our primary care teams.

Is there any general timeframe on the delivery of those additional beds? Are we talking about years?

We are progressing on the new units. They are at different stages of development. Some are at design phase. Others have gone through their design phase into a feasibility study and all of that. We are very hopeful that these beds will start coming on stream in the next three to five years.

To go back on one question to Dr. Clifford regarding children who are identified with this particular health issue, she said the vast majority recover before they go into adulthood. The big issue that is coming up consistently today is the transfer from children services to adult services. What is the percentage who do not recover under children services?

Eating disorders are incredibly complex conditions. We know we can get significant good recovery in up to 50%. Another 30% is significant clinical recovery. The natural history of illness is that 20% will go on to experience a more chronic eating disorder.

Do 20% go on to the adult services?

That is in terms of the research of people who develop an eating disorder. That can be after adulthood. A total of 95% of eating disorders will be developed before the age of 25. It is about 10%-----

The big issue that came up was that the transfer from one to the other seems to be quite complicated. Is there a clear policy to get over the roadblocks that are in the transfer over?

With the eating disorder teams, we are going to work with the national policy. My colleague might be able to talk around the national policy, particularly for the transitions from CAMHS to adult services. We are keen to work with it and lots of people to get full access of care across the age range.

I ask Dr. Reynolds to talk to national policy.

There are a couple of issues that have been raised this morning that we are aware of and know are problematic within the system and that we are working hard on at the moment that are strategic priorities for us.

That transition from CAMHS to adult mental health services, CAMHS to AMHS is one of them. We know from lived experience that is a challenging time for families. We also know that when children are trying to get into the services from GPs, as the Deputy raised, that is also a challenging time. Those transitions between services are most definitely challenging within the system at the moment.

The HSE has just published a clinical operational guideline for CAMH services before Christmas. That is a new version of our operating guidelines, and it focuses very specifically on those transitions because we know that is what we need to focus on. There is guidance in there about adult and child teams meeting and working together and smoothing that transition. This will mean actually meeting and making sure that when children need to move, and not everybody does, from children’s services to adult services, the clinicians meet, talk and plan that together. Also for children who are coming from GPs, we know that sometimes we have young people who get rejected by CAMH services as the Deputy raised earlier. That is a problem within the HSE. We have a lot of work going on on that under what we call a single point of access, SPOA. At the moment, if a GP refers to our disability or CAMH services, they sometimes get quite siloed responses. They get rejections from a number of services. That is not acceptable. The HSE does not want that to happen anymore, and we have a whole programme of work going on at the moment to ensure that if a CAMH service says a situation is not moderate to severe mental health, they not write back to the GP but instead ask what the child needs within the HSE family and how they can make sure the child accesses what they need. There should be fewer referrals going back to GPs saying it is not for us, because it is for the HSE. It is for the HSE family.

We have substantially increased the number of people dealing with this whole area over the past five years. Is there a clear five-year-plan with targets set out for this whole service, because there are gaps in the service in relation to beds and teams? Is there a five-year plan with clear targets set out at this stage, or is it a case that we are going from year to year, depending on what budget is then provided from central government to the HSE and the HSE to the services being provided? I am just wondering because I have not seen any evidence of a clear five-year plan.

Dr. Clifford might take that. We are working to the model of care that we have, and we work, obviously, to our operational plan every year, where we incrementally improve.

That is going from year to year. What I am asking is whether the HSE has a clear five-year target setting out how we plan and deliver on this. We have it in every other area. Whether it is maternity services or orthopaedics, we have a clear plan in each area. Is there a clear five-year plan here?

The plan that we have is for next year. It is our three-year plan in terms of developing another five teams. At that stage, we will have 16 teams on the ground, and then it will be time to evaluate the performance of those teams and then we will do a review of the model of care. We are already doing the evaluation because we have our yearly data from our teams and we have arranged for six of our longest standing teams to have an independent evaluation to ensure they are adhering to the really high-quality standards, which is essential. We want to be able to deliver the teams in an incremental manner, so that we are adhering to the really high quality standard of care. We will then review the model of care, and that will take into account the increase in demand, which we have experienced in eating disorders, the change in population, and the alignment with the HSE health regions. That is our plan and we expect that there may well be areas where we need to continue to develop eating disorder services. We will continue to develop across the STEM model of care, and each team will continue to develop its specialist service.

Representatives from Linn Dara said that some of the beds had been closed there. Is that a catchment area facility, or can any child or adolescent from the State be in there?

It is part of a national network of CAMHS community units. There is a national network so they can be referred.