Joint Sub-Committee on Mental Health debate -
Tuesday, 17 May 2022

Eating Disorders: Bodywhys

Chairman

Today we are meeting with Bodywhys to discuss eating disorders. We are joined by Ms Jacinta Hastings, CEO; Ms Harriet Parsons, training and development manager; and Ms Kathy Downes, support services manager, who are all very welcome to our meeting this morning.

All witnesses and members are reminded of the long-standing parliamentary practice that they should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable, or otherwise engage in speech that might be regarded as damaging to the good name of the person or entity.

Therefore, if statements are potentially defamatory regarding an identifiable person or entity, I will direct that the remarks be discontinued. It is imperative that any such direction be complied with.

I call Ms Hastings to make her opening statement.

Ms Jacinta Hastings

Dia is Muire daoibh, a chairde. I thank the Chair for inviting us here today. I am CEO of Bodywhys and I am joined by my colleagues, Ms Harriet Parsons, training and development manager and Ms Kathy Downes, support services manager.

As the committee may be aware, Bodywhys, founded in 1995, is the national voluntary organisation providing support services to people affected by eating disorders, including family and friends.

Our vision is that people affected by eating disorders will have their needs met through the provision of appropriate, integrated, quality services being delivered by a range of statutory, private and voluntary services.

Our mission is to provide support to people affected by eating disorders; promote information, education, training and awareness among the wider community; and advocate for rights and healthcare needs of people with eating disorders.

Eating disorders - anorexia nervosa, bulimia nervosa, binge eating disorder, avoidant-restrictive food intake disorder, ARFID, and related issues - are a group of recognised mental health conditions that have the highest mortality rate of all mental illnesses.

The Department of Health estimates that up to 180,000 people in Ireland are affected by eating disorders with up to 1,800 new cases occurring each year. The average age of onset is 15. There is no one cause of an eating disorder developing as the causes are a mixture of biology, psychology and social factors causing psychological and physical complications, and some of these are life threatening.

For anorexia nervosa, the peak incidence of onset is 14 to 18 years and for bulimia nervosa, it is 14 to 22 years. Binge eating disorder most commonly presents in the late teens or early 20s. However, with early assessment and evidence-based treatment, people can and do recover from eating disorders.

Since the onset of the pandemic in 2020, the number of eating disorder presentations and the severity of those presentations have increased substantially. The full scope of the adverse impact of the pandemic on people with eating disorders is not yet known. Treatment adaptations and safety issues, a sense of confinement from being at home, along with decreased protective factors against eating disorders, exacerbated barriers to care, and increased eating disorder risk and symptoms, are some of the challenges that have been identified to date.

Bodywhys services also have experienced a significant increase across all support services, which my colleague, Ms Downes, will expand upon. Bodywhys offers a range of services to support people with eating disorders, including a helpline; an email service; online support groups, BodywhysConnect and YouthConnect; a free online psycho-social programme, SeeMySelf, addressing self-esteem; and body image and media literacy. The Bodywhys peer led resilience, PiLaR, programme is a free four-week education and skills programme for family members supporting a person with an eating disorder and we have recently introduced the new Maudsley skills-based training for families. My colleague, Ms Parsons, will elaborate on these services.

The Bodywhys website, www.bodywhys.ie, provides a wide variety of information on eating disorders, treatment options and support services and is regularly reviewed to incorporate the most up-to-date information and resources, including, for example, Eating Disorders – a Treatment Guide; a resource for parents/families; GP booklets developed in association with the Irish College of General Practitioners; pharmacist guide in association with the Irish Pharmacy Union; and a resource for dentists in conjunction with the Irish Dental Association.

A common feature of an eating disorder is low self-esteem and negative body image. Research in Ireland indicates that body image is a widespread issue for young people, body image and related concerns are on the rise in both males and females and, worryingly, rates of eating disorders are rising in pre-teens. It is important that teachers in schools are aware that such issues can occur in schoolchildren and that they are equipped to deal with any such issues which may arise. Bodywhys has developed school-based interventions to promote positive body image, self-esteem and media literacy as well as on-site workshops for the entire school population - students, teachers and parents.

The policy document entitled A Vision for Change: Report of the Expert Group on Mental Health Policy of 2006 made specific recommendations to address the issue of eating disorders. Ireland’s current national mental health policy, Sharing the Vision: A Mental Health Policy for Everyone, aims to enhance the provision of mental health services and supports across a broad continuum, from mental health promotion, prevention and early intervention to acute and specialist mental health service delivery, during the period 2020 to 2030. The recommendations in the 2006 policy on eating disorders were carried over to the subsequent policy, Sharing the Vision: A Mental Health Policy for Everyone. The recently-launched Sharing the Vision Implementation Plan 2022 to 2024, the first of three planned implementation plans, outlines a programme of work for the next three years to progress the 100 policy recommendations. Its delivery will be driven by a focus on outcomes and a shared commitment to work in partnership with staff, service users and families and all relevant stakeholders to meet the needs of those who require mental health services. In relation to eating disorders, the recommendation in the implementation plan reads: "Continued phased implementation and evaluation of existing national clinical programmes in mental health – including... Eating Disorders." We can see, from these policies and implementation plans, that there has been some progress in actions on eating disorders services, albeit somewhat slow progress.

Eating disorder patients are seen across a range of services, from GP and primary care to referral on to specialist service either in the public or private sector. In the public sector, in January 2018 the HSE launched the National Clinical Programme for Eating Disorders, NCP-ED. The NCP-ED aims to provide timely, high-quality services and care in Ireland at all stages of eating disorders. This includes evidence-based treatment, dedicated eating disorder treatment teams and a stepped model of care for children and adolescents, and adults and families. This, in effect, is a national strategy for the treatment of eating disorders in Ireland. The plan is to roll it out on a phased basis across the country. In the private sector, there are individual practitioners as well as private inpatient and outpatient services, for example, in St. Patrick's Hospital; St. John of God Hospital; Lois Bridges, the national eating disorder recovery centre; and the Eating Disorder Centre Cork. Bodywhys endeavours to foster partnerships and collaborative approaches with all services, relevant agencies, organisations and other stakeholders.

Finally, Bodywhys would like to thank the Sub-Committee on Mental Health for its support of people with eating disorders. We would also like to acknowledge the Minister of State, Deputy Butler, for her continued interest in, and support of, eating disorders. As outlined earlier, the increase in the presentation of eating disorders as a consequence of the pandemic has made it a critical issue for patients requiring an urgent response. We ask for the support of the committee in the following key proposed areas relating to eating disorders which form the focus of our contribution today. The feedback from families and those with eating disorders is that they experience differences in areas with and without eating disorder teams. Where eating disorder teams are in place, there is a positive outcome for the patient. Areas with no teams in place contribute to an inequity of access, further compromising the health of those who require treatment. The increase in the presentation of eating disorders has inevitably led to an increase in waiting times in areas with eating disorder teams. All of this highlights the need for funding for full team recruitment as per the model of care, and the need for the model of care to be reviewed and updated to take account of increased demand. Funding should be provided on a bi-annual basis, rather than an annual basis, to allow for advance planning of services and supports. The development of a national eating disorder registry would provide factual data, allowing for the future-proofing of services. We urge the committee to ensure that eating disorders remain a priority within its discussions on mental health.

Chairman

I thank Ms Hastings. I ask Senator Conway to come in, if he has any questions.

Senator Martin Conway

I do not have any questions at the moment. Apologies for being late.

Chairman

I call on Deputy Ward.

Deputy Mark Ward

I thank the representatives of Bodywhys for attending. It is great to meet them in person instead of virtually, for a change.

I am Sinn Féin's spokesperson on mental health. Eating disorders are one of the biggest issues about which people regularly contact me. It is usually mothers or fathers of young adults who are looking to get their children into an inpatient eating disorder service. Can Ms Hastings confirm that there are only three inpatient public beds available in Ireland, which are in St. Vincent's Hospital, for people with eating disorders?

Ms Jacinta Hastings

Traditionally, the inpatient bed capacity has predominantly been in the private sector. As to the public sector, for quite some time, as we have seen in the policy, the need to expand the bed capacity, which comprises three beds in St. Vincent's Hospital, has been identified. Each of the three community healthcare organisations, CHOs, has identified the need to increase bed capacity in the public sector, which would bring capacity up to 26 beds in the public sector. We would still have the private sector beds, which are occasionally utilised by the HSE when someone cannot access a public bed.

Deputy Mark Ward

Does Ms Hastings know when the bed capacity is likely to increase from three to 26 beds?

Ms Jacinta Hastings

We do not have a timeline at the moment. As we said, one of our asks is that there be a review of the model of care. There is an urgency as regards the implementation of the recommendations, which identify the absolute urgency for critical care by increasing not only the teams but the bed capacity.

Deputy Mark Ward

Some people who have contacted my office have said that, for example, the response from the HSE is that, at present, adults who have an eating disorder diagnosis and require public inpatient care can be referred to any HSE-approved acute inpatient mental health centre.

Parents and young adults who get in touch with me about their experiences of going into acute mental health facilities that do not have a specialist multidisciplinary eating disorder team, which is needed, have said they are not good experiences. They are brought in when their body mass index, BMI, is at 11 or 12. They are at a critical stage and their BMI increases while they are there. They feel they do not get the adequate specialist care they need. There is no supervision around their food intake.

There are people going into eating disorder services who are basically begging staff to make sure they eat correctly and they feel they are not getting the care they need. What happens is that they are released from the acute mental health service back into the community, which is the environment in which the eating disorder first occurred. They find themselves going back to having an eating disorder and returning to an acute mental health ward, and the cycle continues. Parents and young adults who have been in touch with me have said that this has happened to them countless times and that it is a vicious cycle. I know Ms Hastings said that there is private capacity available, but people find it very difficult to be referred to the private units and if they are referred, there is a waiting list to get into them.

Ms Hastings answered my question but I will ask it again. Does she think the provision of three public beds in the State is adequate? Why is the Government prioritising community hubs and community care over inpatient care as part of its model of care? Can the two models be followed in parallel? I would like to see the community services being resourced at the same time as the inpatient public services.

Ms Jacinta Hastings

I will ask my colleague, Ms Harriet Parsons, to take those questions. She has just come from an emergency dental appointment.

Deputy Mark Ward

That will lead me on to my next questions around dental services, but I will wait to ask them.

Ms Harriet Parsons

The reason the focus has been on the community eating disorder services is that evidence shows it is better for people to be treated within the community and within their family and lives. When an inpatient admission is needed it is usually because, physically, the person is very unwell with, as the Deputy said, a BMI of 11 or 12. That is why a person with a BMI of 11 or 12 would often go into a general hospital and avail of nasogastric, NG, feeding. When they are at a safer place physically and there is less risk, they would then be discharged. The reason the focus has been on community teams is that the majority of people can be treated within the community and that is also better for them.

When we talk about the three beds, they are for adults. There has been development around dedicated inpatient beds for adolescents. One of the lacks identified was the ability to have NG feeding within a mental health facility where there is an eating disorder team. The Linn Dara team and the Merlin Park team in Galway have the facility for NG feeding within their eating disorder specialist team so there has been improvement on that front for adolescents.

When somebody is admitted to hospital, he or she does not come out of it well. He or she comes out stable enough to begin the process of getting better. When you are talking about recovery from an eating disorder, you are talking about that happening within the person's life. The person needs to be going to school, going to college, working and having social interactions, his or her social life and his or her normal life. The person needs to figure out how he or she can start living without his or her eating disorder. This is why it is so important to have the proper specialist services within the community and for people's families to be supported. I am sure the Deputy has heard families say when they go to an appointment, "You are with them for an hour a week but we are with them 24-7, seven days a week". This is why a big part of our work is supporting families.

In some ways, the pandemic has enabled us to do that. We took our services online. We took the PiLaR programme online so instead of driving around the country, I was able to provide that programme online. It also meant that we developed a family support package that supports families after the programme and onwards as long as they need it. We have a bimonthly family support group, the New Maudsley carer skills workshop and following that, we have a regular Maudsley workshop once a month. Parents are availing of those services who came into the PiLaR programme even before we took it online. We are supporting families the whole way through because people cannot stay in hospital for four or five years. They have to live their lives and so they need that support within their lives. This is why the resources so far have mainly been going into the community eating disorder specialist services.

Deputy Mark Ward

The reason I mention young adults is many of them who have been in touch or whose parents have been in touch with my office were children who availed of eating disorder services. They find that the there is no comparison between services for adolescents and services for young adults. Linn Dara is on my doorstep and, therefore, I am aware of the services it provides. It has its problems relating to its geographic location. Not everybody who enters Linn Dara will get the service when they go back to Dundalk, for example. A lot of people do recover. That is the other side of it. I do not want to say that people do not recover but some people do not and when they become young adults, they find that there is a lack of services and the inpatient services they are able to avail of are not the same. These young adults and their parents feel very frightened in that space, which is why I raised the issue.

Ms Harriet Parsons

When they transfer from CAMHS to adult services, it is a frightening experience for them. There are a couple of things within the model of care that seek to address that. It involves consistency of transfer of CAMHS to AMHS so that process is done in the same way. One of the HSE training programmes comes from the Maudsley Hospital in London. It is called the first episode and rapid early intervention service for young people with an eating disorder, FREED. The FREED programme deals with people aged 15 to 24. It is a pathway that allows people under 18 to come into a service and be followed through until they are in their 20s. In this model of care, the stepped care approach that is mapped out is trying to address the problems referred to by the Deputy.

If somebody becomes unwell in the community, goes into services, becomes more unwell and has to go into inpatient services, that person is followed in and followed out. In the model of care, this approach tries to follow the person out of inpatient in order that somebody consistently follows the person in and out and not that problem of somebody being discharged into-----

Deputy Mark Ward

On paper, that model of care is absolutely brilliant. It really works. The problem is that in reality, from the experience I am hearing from people, that is not what is happening. That is down to the lack of resources. How many parents and families are supported through the PiLaR programme?

Ms Harriet Parsons

In 2021, I had 1,537 people through the PiLaR programme which was an increase of 125% on 2020. So far in 2022, I have done three programmes through which I have had 500 people come through.

Deputy Mark Ward

Brilliant. Well done to Ms Parsons. Dentists were mentioned. I wanted to ask the question to Bodywhys' representatives because I am out of the dentist. A dietician was in touch with me during the week. I saw in Bodywhys' opening statement that its website had information on dental resources in conjunction with the Irish Dental Association. The dietician got in touch with me because, in the past fortnight, he has had two clients aged 29 and 45 who both reported significant challenges with their dental healthcare. Both individuals reported having had several teeth fall out and physical dental caries in their teeth. One of the women reported recurring dental abscesses. Both are struggling to eat, probably because years of induced vomiting has very much damaged their teeth. The dietician who got in touch with me said that both of these women would struggle financially to access the proper dental treatment. They do not have a medical card. Are there any supports for people with eating disorders in order to avail of dental treatment?

Ms Jacinta Hastings

The question is very appropriate from the point of view that this is why we developed the documentation and information pack with the Irish Dental Association. Dentists are very often the first people who pick up the problem. Unfortunately, there is no provision in the model of care to deal with somebody who does not have a medical card. It would still be under dental oral healthcare. Unless the person has a medical card, I am not familiar with any provision that would support the person.

Deputy Mark Ward

Would such a provision, if made, be beneficial to people in that situation?

Ms Jacinta Hastings

Yes. Absolutely. It is an outcome of an eating disorder that we certainly could advocate to have addressed.

Ms Kathy Downes

We certainly hear that coming through our services in terms of people's need for dental work as part of their recovery process.

Deputy Mark Ward

It is probably because Bodywhys' representatives are in this line of work all the time that it would be common enough for them to hear that. When I read that and got in touch with the dietician, I was not aware that was as prominent as it was. Provision should made for that. There is sometimes confusion as to how Bodywhys is funded. Will Ms Hastings clarify how it is funded? Is Bodywhys voluntary? Does it get funding? What way does it work?

Ms Jacinta Hastings

Bodywhys is covered under section 39 of Health Act 2004 which makes provision for health and social care support external to the HSE provision. We enter into a service-level agreement with the HSE on an annual basis. We provide our services to the HSE as part of that agreement. We enter into and negotiate that agreement on an annual basis. The reporting requirements the HSE has are a quantum of service and performance and financial monitoring. Does Deputy Ward want to know what the funding is?

Deputy Mark Ward

If Ms Hastings want to disclose it.

Ms Jacinta Hastings

It is no problem. It is a matter of public record. We get approximately €420,000 per year. We worked out that it works out at just over €40 per person for the number of people we support.

Deputy Mark Ward

I thank the witnesses.

Deputy Neasa Hourigan

I welcome the witnesses to the meeting. We have all been looking forward to this session of the subcommittee. It is an area we have been very aware of during Covid. We have been concerned that conditions may have been exacerbated for some people because of isolation and the fact we were all under pressure. It has been on the agenda for a while. Is it possible at the outset for the witnesses to give us a sense of the national picture in terms of services? Are there areas of the country that Bodywhys is particularly worried about, where there is a dearth of services? I know services have gone online. Obviously, people can pick up a phone and ask for services. I am aware, because we have heard from addiction services and other mental health services, that community healthcare organisations, CHOs, operate differently and sometimes channel funding in different directions. Are there particular areas the witnesses feel are badly served or about which they have concerns?

Ms Kathy Downes

On the Bodywhys services, we are based in Dublin but we are a national organisation. Our services provide support to people throughout the country. I cannot speak to individual treatment services. I think that is what the Deputy was referring to.

Deputy Neasa Hourigan

I am assuming that where there is a dearth of HSE services, Bodywhys might find it is more under pressure or is getting more calls. Is there no particular area Bodywhys feels is underserved?

Ms Kathy Downes

There is not that I know of. I agree with the Deputy's sense that there are certainly different parts of the country that are better served than others. I am not sure which they are.

Deputy Neasa Hourigan

Before we move away from that issue, do the witnesses feel we have enough or the right type of psychological support in terms of staff expertise in the State? For example, an issue that has come up in this subcommittee previously is that of psychological experts, such as psychologists and the area of counselling in particular. Does Bodywhys find there are enough staff available? Are we training the right people in the right area?

Ms Kathy Downes

I might refer to my colleague, Ms Parsons, who can speak about the model care.

Ms Harriet Parsons

The Deputy mentioned treatment services and referred to counselling. I would say psychotherapy, because it is an unregulated field for private practitioners. We are conscious of the distinctions that are made between counselling and psychotherapy, that are mainly based on years of education etc. On the treatment services, looking at the model of care, we can see the HSE has looked internationally and at the National Institute for Health and Care Excellence, NICE, guidelines in respect of evidence-based treatments within a publicly funded specialist eating disorders service. They are the treatment approaches that are best used and serve the community best. The HSE has chosen the treatment approaches that are within those guidelines. For adults, the treatment is enhanced cognitive behaviour therapy, CBT-E, and for adolescents and children, it is family-based therapy, FBT. They are the first-line treatments that are offered.

I think it was around ten years ago that the HSE embarked on training clinicians within the health service to be able to deliver those treatments within the specialist teams. There are different disciplines within the specialist teams. For example, there could be a clinical nurse or a social worker who is trained in CBT-E and will be delivering it. People are employed under a certain discipline and they are trained in the competency of the treatment approach.

One of the problems arising is in terms of staff turnover and being able to ensure that, nationally, the people who have been trained in these specific treatment approaches remain in the service to deliver what they have been trained to do. That is one of the things that makes progress slow. People move around and change job and it can be difficult sometimes to ensure that the team that one is recruiting has the expertise and has been trained in the approaches that they need to use in order to be considered a specialist team.

What we see is that where the specialist teams have been and are being set up the people within those areas are seen quicker, assessed quicker, and treated and discharged quicker. Therefore, it works. That is what we know. Where we have them, it works really well. What we are seeing in the other areas is not that there is nothing but that there is not the full team in place. In an area where there is considered no specialist team there might be one person or two people on that team who have had that specialist training and when they get a referral of a person with an eating disorder, they will be the clinicians chosen within that team to deliver the treatment to that person.

In terms of whether there is enough training, within the clinical programme they need the training funding to ensure that as they recruit more teams that the people who come in can be trained in the specialist eating disorder approaches and just in knowledge about eating disorders. A big part of the work that I do is training. I am the training and development manager. Every year since I took on that role, there has been more and more training that I have been delivering to allied health professionals such as, in Mullingar General Hospital, the nurses, gastroenterologists and the dietitians who would not see people with eating disorders that often but who, when they do, need to feel that they know what they are doing. They need to know how to speak with that person. It is difficult working with a person with an eating disorder. There are many subtleties about it. What I am finding on the ground is that more and more people from many different areas that one might not think are coming forward and saying that they need more training in eating disorders because with Covid they are seeing people with eating disorders far more often. I suppose I am able to do that. It is part of my role. It is supporting the work of the HSE. Then, within the HSE, they need to know that their budget for training will be consistent so that they can ensure that the specialist teams in place are trained properly. Does that answer Deputy Hourigan's question?

Deputy Neasa Hourigan

It does. I am conscious I am asking Ms Parsons to give answers about a body that she is not directly involved in. For my own understanding, how long does it take to train?

Ms Harriet Parsons

For what?

Deputy Neasa Hourigan

For example, if one were to train for family based training, FBT.

Ms Harriet Parsons

I am not exactly sure, to be honest, because it is often done on the ground. They would have weekend training. They would go over to London sometimes and do training there in the Maudsley. Sometimes they would bring people over to do the training so I do not know.

Ms Kathy Downes

There would be ongoing supervision. There would be fluidity, maybe, over a year and a half or two years, I would think.

Ms Harriet Parsons

Definitely.

Deputy Neasa Hourigan

It struck me when reading Ms Hastings's opening statement today how incredibly challenging is it to be working with a cohort that starts at the ages of 13, 14 and 15 years and ends in the mid-20s because that is such a formative age and a person changes in classification legally. In terms of their own work, how often do they work with Tusla or what is the communication there?

Ms Kathy Downes

We do not tend to have a very strong working relationship with Tusla. Does the Deputy mean in terms of child protection?

Deputy Neasa Hourigan

Yes.

Ms Kathy Downes

We obviously have a child protection policy in place. We do not tend to need to call it into action very often.

Deputy Neasa Hourigan

There is no kind of active outreach from Tusla with Bodywhys.

Ms Harriet Parsons

I have done training with Tusla twice this year, and I regularly do training for foster carers around eating disorders and how to manage them if they are fostering a child. I do a lot of training in care homes, because the staff there are basically the parents so they need to know how to support a young person in their care. In terms of child protection, it does not really come up in our services much.

Deputy Neasa Hourigan

That is fair enough; I was just asking the question. The numbers provided in the opening statement are huge, with some 180,000 people affected. I wish to return to the issue of the male cohort. What kind of services are available to them or are there particular challenges that a boy or a man faces in seeking help for an eating disorder, because I think we still categorise it as affecting women and girls more often?

Ms Kathy Downes

Absolutely. Based on our services and the figures from our statistics in the past couple of years, in terms of people contacting us who are male or are concerned about a young or an adult male, it would be about one in ten. In 2019, it was about two in ten; the number rose slightly. Anecdotally, however, it feels much larger than that in terms of parental contact.

Deputy Neasa Hourigan

Is that a growing cohort? I am not necessarily talking about Ireland but, internationally, does the research suggest that more men are affected?

Ms Kathy Downes

Yes, I think so. With eating disorders, it is also very hard to distinguish between what is growing from what is now being recognised and understood and, therefore, allows men to come forward and speak about it a bit more.

Deputy Neasa Hourigan

That was going to be the basis of my next question. In Ms Downes's estimation and with her expertise, what would make it easier for men or boys to speak up about eating disorders?

Ms Kathy Downes

The more men who speak up and talk about it publicly seems to allow other young or adult males to come forward. We are endeavouring to set up a male-only online support group that will launch at the end of June. We also have men who attend our online groups, but that would be a place where men who are thinking whether they have an eating disorder could feel a bit safer.

Deputy Neasa Hourigan

I have no idea if this is a right question to ask, but is there a qualitative difference between men or boys who present with this issue? Is it more about being in the gym? Are the issues the same for both genders when they experience eating disorders or is there a difference?

Ms Kathy Downes

Sometimes there can be a difference but with all eating disorders, they are the same but different.

Deputy Neasa Hourigan

They are incredibly personal.

Ms Kathy Downes

According to our statistics, a lot of young boys are presenting with anorexia nervosa. It is less related to the gym or exercising. It is around restrictive anorexia nervosa, so it is similar.

Deputy Neasa Hourigan

I want to stay on the subject of young people to some extent. It may be unfair, but I have formed the impression that schools are somewhat wary of getting into the space of counselling or referring people for mental health treatment of any type because, quite rightly, many teachers feel that is not their area of expertise. In terms of services in schools and their interaction with Bodywhys' kind of service, what would Ms Downes like to see from schools in terms of flagging children they have concerns about or talking about this issue more in schools? How can schools bridge that gap between accessing services provided by Bodywhys or the HSE and what they are seeing on the ground?

Ms Jacinta Hastings

From a school's perspective, the Deputy is quite right, sometimes there is a slight cautionary note if there is an issue, in particular an eating disorder issue. The process would be the school would flag it with the parents first and, if necessary, the psychological services are called in. From our perspective going into schools as an external agency we work very closely with the school before we go in to make sure about any sensitivities or concerns they have. We have developed quite a lot of materials. Our colleague is our youth development officer. We are cautious about going into schools and not teaching too much about the issue or the behaviours. What you would be looking at for the schools is to give them confidence about bringing in an external agency, organising a workshop of about one and a half hour's duration and allowing that space to explore the potential contributory or underlying factors such as body image, low self-esteem, media literacy or maybe peer pressure. They are the areas that we look at. There is a subtlety in bringing eating disorders into the school space to ensure that the outcomes are safe for the students. We have developed for primary schools the Happy to be Me programme which is teacher-delivered with the children. It is looking at diversity. In the secondary school we have the #MoreThanASelfie which again is looking at social media and the influence of social media and also the one-and-a-half hour workshop that would be appropriate for the student body, the teacher-student body or even the full school, including parents.

Senator Martin Conway

Following on from Deputy Hourigan's line of questioning on the male and female breakdown, I would like Bodywhys's views on its interaction with people with physical disabilities. Does it find that there is maybe more of a tendency towards eating disorders with people with physical disabilities who may not necessarily have been active in sport?

Ms Kathy Downes

I do not particularly have figures on that from our services. Thinking about the services it is not something that is particularly there, but in terms of numbers it is not higher or lower than other cohorts. I am thinking about different issues that might have stronger links with eating disorders, such as perhaps autism which might be an issue we might see a bit more than physical disability in terms of a link with an eating disorder.

Senator Martin Conway

I was going to come then to the likes of autism and so on. Does Bodywhys find there is a higher level of presentations from people with autism?

Ms Kathy Downes

We certainly do; from the services point of view we certainly would be thinking about providing more nuanced directed services towards people with autism or else family and friends who are supporting somebody with autism and eating disorders.

Senator Martin Conway

How difficult is it to put programmes in place for people with autism who have eating disorders?

Ms Jacinta Hastings

We are working at the moment with AsIAm, the autism organisation. Autism is their first focus of AsIAm. We are working together to co-produce the response both by way of them learning from us in regard to the eating disorder component and then they are helping us to understand the autism and eating disorder aspect. As Ms Downes said there are subtleties there that we have to learn. We have to make sure that our responses are appropriate. We are going to the experts in autism to make sure that we have the most appropriate response.

Senator Martin Conway: That is very impressive and welcome. In regard to families of people with eating disorders, are there peer support groups specifically for families? I can imagine how traumatic it would be.

Ms Kathy Downes

We do. Ms Parsons will outline the PiLaR supports and the post-PiLaR supports.

Outside of that, we have services such as our helpline and email support service. Half of the 45% to 50% of those who use that service, which last year would have been approximately 7,000 people, would be families and individuals who are looking to support somebody with an eating disorder. We also have support groups.

Senator Martin Conway

The one thing we are gleaning from our engagement with various addiction services and so on is that perhaps the support for families is not necessarily where it should be. As a result, it is good to hear Ms Hastings say that. If she were to point to somewhere internationally she believes has got it as right as possible, are there lessons we can glean from such a country, if there is such a country? What is international best practice?

Ms Jacinta Hastings

From our own organisation as a national support service, we would work very closely with similar organisations, for example, Beat in the UK. The Butterfly Foundation in Australia would be a very good model of good practice and, again, we work very closely with it. We share documentation and we have actually modelled some of its good practice here. It has given us permission to reproduce some of its documentation. The Butterfly Foundation would possibly be the one and also the National Eating Disorders Association in the US. We all work very closely together internationally. If there are any lessons to be learned from each other, there is sharing and co-production, which is very welcome.

Senator Martin Conway

I thank Bodywhys very much for the great work it does and I thank the witnesses for appearing before the committee. The engagement today will inform us in terms of the report we compile and the recommendations we present to the Government.

Chairman

I thank Senator Conway. Our next speaker is Deputy Gino Kenny.

Deputy Gino Kenny

I welcome our guests. This is a very important subject. It is good that we are having a conversation on this issue. When we speak about eating disorders, of which there is a full spectrum, we cannot do so if we do not talk about the society in which we live. There is a massive amount of pressure, particularly on young people, to look a certain way. That manifests in all sorts of ways. Twenty years' ago, television and radio were obviously prevalent, but there was also the prevalence of what I would call glamour and glossy magazines, especially those relating to how women should look. That kind of stuff is very insidious with regard to how young women should look. That trickles down into certain manifestations, in particular in respect of eating disorders. Obviously, social media brings them to a different platform and many young people will use that. That will have much influence on what they see and hear. That influence can really distort somebody's image of themselves via body shaming and the amount of pressure that is put on young people to look a certain way. This stuff is sometimes peddled by major companies and big multinationals for the glamour industry. That kind of unconscientious marketing has a terrible effect on young people. That cannot be overstated.

In such circumstances, young people are presenting with eating disorders, of which, as I said, there is a full spectrum. Over the past two and a half years with Covid, there has been an acceleration of this. There are a number of factors as to why that happened.

My first question relates to public and private health services. Generally, from my understanding, the vast majority of inpatient beds for eating disorders are in the private sector. Am I correct?

Ms Jacinta Hastings

Yes.

Deputy Gino Kenny

Where would a young person under the age of 18 who has an eating disorder be directed in an inpatient situation?

Ms Jacinta Hastings

I thank the Deputy for his questions. If it okay with him, I will give a quick response on social media and then ask my colleague, Ms Parsons, to answer the question on child and adolescent beds for eating disorders. Social media is a very valid and valuable space, particularly for young people. It is something they engage with continuously. However, we also recognise that it is potentially a space that could have messages that may not be appropriate. Bodywhys engaged with a lot of the social media companies, including Facebook, which is now Meta, Instagram and TikTok, and we have been doing that regularly over the past few years. We wanted to work with them in identifying inappropriate material, particularly material that would not be age-appropriate, such as the advertising of images of emaciated people and dietary products. The companies have put in safety provisions, particularly around age-appropriateness. We have also worked with some of their staff on identifying things we would have concerns about around eating disorders, body image and media literacy, which we mentioned earlier. That is an ongoing process and is one we have welcomed. We also worked with our colleagues in the UK, Beat, because these are international platforms so you want the safety reach to go as far as possible.

Ms Harriet Parsons

A person under 18 who has been assessed to need an inpatient bed, or is very unwell and it is obvious they need an inpatient bed, will most likely go to one of the children's hospitals, such as those in Crumlin, Temple Street, Tallaght, Cork University Hospital or University Hospital Galway. It depends on where they are in the country. If they are physically very unwell that is where they will go and they will then be stabilised and discharged into an inpatient CAMHS bed, in Linn Dara, Merlin Park, Éist Linn in Cork or St. Joseph's in north Dublin. Every situation is different. As a result, it is difficult to say what way it will happen at the moment. One of the things that is important to get right in the development of services is consistency in order that I could say to the Deputy definitively what would happen. At the moment, I cannot say for sure, unless the Deputy wants to name a specific area.

Deputy Gino Kenny

Where would an adult in that situation be directed? A number of facilities have been mentioned already. In general, however, where would an adult with an eating disorder go?

Ms Harriet Parsons

They would go to the general hospital in their area. Is the Deputy asking about when they are physically unwell?

Deputy Gino Kenny

Yes.

Ms Harriet Parsons

They would present themselves to the accident and emergency department and be admitted to a general hospital.

That is why it is so important that within the general hospitals there is education and training. For example, the training I have been doing in partnership, but also the medical emergency guidelines, which are known as the MaRSiPAN guidelines, although that name will be changing on Thursday. They are for the management of really sick patients with anorexia. When somebody who is really sick goes into a general hospital, they are the guidelines that need to be followed in terms of ensuring a person gets the proper treatment and care. There are junior MaRSiPAN guidelines for the children's hospital. For example, in Crumlin, the nurses in accident and emergency would have a copy of the junior MaRSiPAN guidelines. If they have a new nurse, they will take the time to go through them to make sure they know what they are. They are very important. Members will have seen during Eating Disorder Awareness Week that the HSE held a full-day webinar on the guidelines, involving a gastroenterologist from Beaumont and psychiatrists from hospitals all around the country to talk about how they implement the MaRSiPAN guidelines within the hospital setting.

Deputy Gino Kenny

Is there a situation where someone who goes to accident and emergency in order to access inpatient care would have to be sectioned? Has Ms Parsons ever heard of that situation?

Ms Harriet Parsons

Yes. Ms Hastings might wish to answer that.

Ms Jacinta Hastings

For somebody to be an involuntary patient, it is often a decision which is taken by a consultant. From a Bodywhys perspective, we would have no involvement in a medical decision. That is usually taken from a consultant's perspective, and it would be under the Mental Health Act.

Deputy Gino Kenny

It obviously has happened.

Ms Jacinta Hastings

It has happened. There have been some cases in the past where an application was made to the courts in order to perhaps make somebody a ward of court because the person was probably so physically and mentally compromised. We made a submission around all of this in regard to the Mental Health Act, which I know is under review at the moment. It would have been very much around capacity, capacity to consent and advance directives. These are elements that would be welcome in the change to the Act.

Deputy Gino Kenny

What happens in a situation where somebody completely refuses to eat? Is there a provision currently where somebody can be force-fed, for want of a better term? Are there situations whereby that can happen in a medical environment?

Ms Harriet Parsons

Absolutely, that happens. When somebody has a very low body mass index, BMI, who is essentially starving and cannot think straight, he or she feels very defensive about going into hospital, and can refuse. Inasmuch as possible, the consultant or the team will not force-feed, if they can in any way avoid it, but if it is a question of life or death, they have to intervene. In that case, they will nasogastrically feed a patient. That is where we get into a situation with somebody where the High Court becomes involved and where the person will be made a ward of court. That can often be done with the consent of parents if they cannot get their adult child or adolescent to eat. There is nothing they can do, so they need somebody to step in and say, "Okay, we are going to save them". It is far from an ideal situation and everybody recognises that. Nobody wants to be in a situation where somebody is force-fed because it is not conducive to recovery.

It is also not conducive to having somebody trust the doctors around them. It is only done when there is no other option.

Deputy Gino Kenny

I am guessing that it is quite a rare event that somebody who has an eating disorder goes so far down the road where he or she refuses all fluids and food.

Ms Harriet Parsons

The majority of people can be treated within the community and do not get to that point.

Deputy Gino Kenny

I have a question on Covid and eating disorders. We all have an idea why this has happened. Somebody who manifests an eating disorder sometimes does so because of control and because they have lost control due to something in their lives like a traumatic event. That manifests via someone refusing food, having low self-esteem and everything that goes with it. It is a highly complex issue. Why has there been an acceleration in eating disorders in the last two years, particularly for our young people?

Ms Kathy Downes

We see that acceleration from our services perspective. If I look at the 2019 figures we might have had 4,100 people who would have been supported by us and in 2021 that would have been 9,000 so it has nearly doubled. Within those figures I am leaving out the pillar support, which doubled as well. I would think that Covid-19 and the ensuing restrictions were like a perfect storm for eating disorders, and particularly so when one thinks of children and adolescents. The inability to go to school, the sense of not being able to be with peers, and the focus that there might have been around food, including baking, were all factors. There was a sense, which we saw reflected in our services, that people in lockdown almost needed to become their best selves when they came out. We saw in the first wave that there was an increase in the services that we thought might relax but it did not do so. It kept going and, therefore, some of our highest figures are from 2021 around the time of the third wave of Covid from Christmas to April and May of that year when the figures were very high. Perhaps Ms Parsons wants to add to that and discuss her sense of Covid.

Ms Harriet Parsons

Social media was mentioned. One of the things that happened during Covid was that we were all locked down and we did not have anyone to bounce off so that we would know what everybody else was doing. Everybody was presenting their best selves online on their social media. At the same time as that, all the normal routines fell away so people started to instate boundaries and routines and that, coupled with the questions about what everyone else was doing, made people feel they should be doing the same things they saw online. That was the perfect environment for an eating disorder. You had people who might have had a vulnerability towards being anxious, perfectionist and high-achieving and suddenly there were no standards to which they could measure themselves so of course they measured themselves against the highest possible standards. This meant they started running marathons around their estates and saying they could only eat during such and such times. We saw that loads of people tipped into an eating disorder. All those things together brought about a perfect storm.

Ms Jacinta Hastings

Another tipping point was the cyberattack on the HSE, which then meant that a lot of appointments had to be cancelled or moved online. There were all sorts of factors that one could never have anticipated between Covid and the cyberattack. It was just the perfect storm during that particular period.

Deputy Gino Kenny

I thank the witnesses.

Chairman

Our next speaker is Senator Annie Hoey but she is not online. I invite Deputy Ward.

Deputy Mark Ward

In our earlier discussion, I was not trying to elicit how much funding Bodywhys is getting but I thank the witnesses for sharing that. I was looking for the information in the context of 180,000 people in Ireland who are affected by eating disorders, and up to 1,800 new cases occurring in Ireland each year. Bodywhys currently receives €420,000 in funding from the State. I want to compare this to the €460,000 the State and the Department of Health give to sponsor "Operation Transformation". I was very critical of that at the time. Basically, I felt it was public money that could have been spent better. I felt that people were being doubly taxed in that they were paying the licence fee and the Department of Health was also funding "Operation Transformation" to the tune of €460,000. The Minister of State, Deputy Mary Butler, has said that it costs, on average, €500,000 for an eating disorder hub. I am not sure if those figures are correct but that is the figure I received in reply to a parliamentary question. I am aware Bodywhys was quite critical of "Operation Transformation". Will the witnesses expand on that a little bit?

Ms Jacinta Hastings

The statement we made at the time in January, at the start of the programme, was reflecting some of the concerns that we heard in our services. The reflection was very much around the context and the pressure that people felt. We put out the statement at the time. I note that Deputy Ward was also very critical of it.

Ms Harriet Parsons

We had never said anything about it before. It was probably due to the increase in the numbers of people contacting us. A lot of people were contacting us telling us of the effect and the pressure they feel, and all of the different ways it filters down into their lives. There was also a bit of commentary around it at the time. We felt that the people who use our services needed to have their voices represented. They needed to feel that somebody was part of that conversation who was representing them. This is why we felt the need to put out the statement. The feedback we received from service users was positive. They felt that the things we said were what they would want to have said about how they felt, and how they feel around that time of year. That is why we did it.

Deputy Mark Ward

I am aware that Bodywhys was critical from the perspective of the people who use its services. I was coming from the perspective of the public money being used. I understand these are two different things, but when I heard that Bodywhys was receiving €420,000 and that "Operation Transformation" was receiving €460,000, I believe that this money could have been spent a lot better.

Ms Kathy Downes

Sometimes when we think of eating disorders we think quite quickly of anorexia nervosa. Some 30% of people who use our services have a binge eating disorder. We have heard back from the services with regard to "Operation Transformation" of the sense of people being told to go on a diet and that they would get better if they go on a diet. As we know, eating disorders are far more complex than that. We felt that we needed to respond to that in some way.

Deputy Mark Ward

I wish to follow up on a point made by Deputy Kenny around social media and how people are portrayed including photoshopping and filters giving someone an unrealistic image. If I take a photograph with my camera it automatically puts on a filter unless I take it off. I am someone who would say "Let us not go there". I like to get that reinforcement, as everybody does, and I can take it or leave it, but not everyone can. They see this as a reality of what is out there.

Is enough being done and can we do more to challenge the wrong images being put out there? They are not reality, basically.

Ms Jacinta Hastings

There is the new digital and media Bill that came in around ensuring safety with media. An area we would be very concerned about and engaged in, which I mentioned to Deputy Gino Kenny, is the particular platforms that target young people. I am aware mobile phones are a different platform but we wanted to engage in the platforms we felt already had a presence and already had activity that could be addressed. Facebook, or Meta as it is now, TikTok and Instagram were open to engagement because they wanted to ensure the safety of their users. It was very much around trying to limit targeted imagery and also limit targeting of advertising.

Deputy Mark Ward

Let us say the Department of Health has its brochures, Internet campaigns and whatever it might be. Should there be a disclosure then if the Department, or a Government organisation, is using filters to make people look better? Should there be a disclosure to say that is being used?

Ms Jacinta Hastings

Some time back we engaged with the Advertising Standards Authority for Ireland, ASAI, to try to bring in that there would be an identifier if filters had been used. Unfortunately, it has not happened and I suppose everybody has a filter on their phone now so it would be very difficult, probably, to manage that. If it is going to be a public campaign then there should be some sort of an identifier just to say these images have been in some way modified so people realise they are.

Ms Kathy Downes

I am thinking there that some of work we might do is around empowering young people to speak out and say they do not like that or they do not have to do that and give them a little bit of resilience. I think it was a year and a half ago we set up our body image website to provide education around social media and understanding about what was going up online. That is beginning to come into the public consciousness a little with bit young people.

Deputy Mark Ward

Exactly. I think the first time I heard it was when I had a meeting with SpunOut and the young people involved were telling me this. I said it was a really good idea. It might be something we can look into.

I have one more quick question if that is okay with the Chair. The issue of ARFID was touched on earlier with, I think, Senator Conway. It relates especially to children with autism and I noted some of the factors including sensory factors, a lack of interest in food and also the fear of consequences such as the fear of choking that some children with autism may have. What services are there at the moment and is enough being done? That is my last question. I welcome the Bodywhys collaboration with AsIAm. It is a good piece of work that was mentioned earlier.

Ms Harriet Parsons

We see it coming up in our services more and more. On the support services and also through the PiLaR programme, I am getting more and more parents saying there is a possible diagnosis of autism or there is autism. What I hear around that is sometimes there can be confusion that happens, whether the autism part is going to be the part that is addressed or whether it is the eating disorder part. That can be problematic for people. On thinking about ARFID and about services and treatment it is considered an eating disorder like the other eating disorders, so the pathway is the same. The GP will refer the person for an assessment and then based on that assessment the person will be offered services. If he or she is assessed as needing treatment, a care plan or whatever, he or she will do things like family-based treatment and the same types of treatment.

Deputy Mark Ward

Does that pathway involve the child going through the CAMHS system or what would happen then?

Ms Harriet Parsons

Yes.

Deputy Mark Ward

We get reports all the time in relation to parents contacting us where their children have autism. It would not all be related to ARFID or eating disorders but just to mental health. They feel their child is not getting the service from the CAMHS because he or she has autism. Would our guests have found that to be an issue that has come up before?

Ms Harriet Parsons

I am not 100% sure on how it is dealt with.

Deputy Mark Ward

Okay.

Ms Harriet Parsons

Anecdotally, I have heard of that pathway for autism going into the CAMHS.

I have heard that CAMHS would be overwhelmed if everybody with autism went into it. My colleague, Ms Downes, might have a better understanding of this matter.

Ms Kathy Downes

It might depend on the CAMHS service. I mean in terms of what it might accept in terms of mental health issues and perhaps autism may or may not come in under that umbrella. Avoidant and-or restrictive food intake disorder, ARFID, is relatively new as a diagnosis so it is probably experiencing the same issues that other eating disorders might have experienced ten or 20 years ago where it might be so recognised at a GP level. Therefore, in order to have psycho education and understanding then it is very important for us to provide same.

Deputy Mark Ward

A public awareness campaign would be helpful.

Ms Kathy Downes

Yes.

Chairman

I thank the organisation for the phenomenal work that it does. Was Bodywhys founded due to people realising that help and information were needed to tackle eating disorders? Who founded Bodywhys and how many years has it been in existence?

Ms Jacinta Hastings

Bodywhys was founded in 1995. It was started by two families who happened to find themselves in the same situation so both had a teenager who had been hospitalised and diagnosed with anorexia. The families sought information to educate and equip themselves as much as possible but soon realised that there was nothing available here. They went to the UK to see how a relatively new organisation called Beat Eating Disorders was run and came back here to set up Bodywhys. The two families were very involved at the start and still very much support the organisation.

Chairman

People often assume that any very thin person must have an eating disorder. I work with family members who have a loved one in addiction so I know that people often get confused and assume that an alcoholic is somebody who falls around the street and drinks out of wine bottles. As the witnesses have said, eating disorders are complex. Am I correct that somebody may have an eating disorder that nobody knows about and he or she is just obsessed with food? Can a person be able to eat but his or her obsesses about food, which takes over his or her whole life or, conversely, there may no obsession with food? I do not know. What is the thought process for somebody who has an eating disorder?

Ms Harriet Parsons

An eating disorder affects every aspect of how a person functions. When a person has an eating disorder his or her behaviours around food become disordered. These can be things like not eating to restricting food, binging or purging which could be over-exercising or vomiting. Any one of those behaviours can be particular to a person. There is a whole array of compulsive eating behaviours. There is also a psychological so the person’s thinking becomes distorted. So he or she has very distorted thinking, which drives his or her behaviours. Next, there is the physical part. I mean because the person is not eating properly so he or she is affected physically. Last, there is the emotional part and that is key. Very simply, a person uses disordered eating behaviours as a way to manage and cope with feelings. So in that way one can say that an eating disorder is a destructive coping mechanism but it is something that a person does because it makes him or her feel better so it functions for him or her.

The Chairman is right that an eating disorder is not just an emaciated person who restricts food. An eating disorder can be anyone of any size who engages in disordered eating behaviours for a reason. We all engage in disordered eating behaviours but when a person has an eating disorder those disordered eating behaviours are compulsive. That means that the person cannot not do them and he or she feels that he or she must do them like an alcoholic. So an alcoholic feels that he or she must drink and likewise a person with an eating disorder, say binging, so he or she feels he or she must binge.

Something inside the person is making him or her do it, and the person has no choice about it. The person almost is not doing it himself or herself because there is something inside the person making him or her do it. An eating disorder is very like an addiction because people get totally preoccupied by it. It progresses, so it gets worse. It has many negative consequences, in the same way that an addiction does.

However, where it differs is in terms of recovery. When one talks about addiction, one talks about the disease model of addiction, so once an alcoholic, always a recovering alcoholic. That person will never be able to drink again. It is different with an eating disorder. Full recovery is possible. It is where the person gets to a point in his or her life where his or her eating behaviours do not function in the same way for him or her, where he or she can feel sad and be sad and it is not that the person has to go for a run or where the person can be angry and it does not feel like he or she is going to have a panic attack. That is how one understands it.

Chairman

It is a type of emotional regulation and working with that emotional regulation.

Ms Harriet Parsons

Yes.

Chairman

As Ms Parsons says, it is quite complex so there are different levels. There is binge eating, anorexia, bulimarexia and many different pieces of it. Can the witnesses talk me through the process when somebody comes to them? Would it mostly be a family member bringing somebody or would somebody present by himself or herself because the person knows he or she has a problem and needs help?

Ms Kathy Downes

To follow up on Ms Parsons's description of an eating order as a coping mechanism, a lot of the time the person finds it very difficult in the beginning to think that he or she might want or need treatment. Largely, what one might see is family and friends noticing something is up, feeling quite upset and concerned, perhaps needing to talk to the person, adult or child, and the person who is in the eating disorder at that time finding himself or herself in a place of feeling in denial or not wanting to acknowledge it. Many young people who engage with our services would find themselves completely shocked that anybody would think they had an eating disorder, even though they might be quite unwell at that stage. We also have people who come to us after a long period of living with an eating disorder, sometimes 15 or 20 years, and they might be at their first acknowledgement and realise that they need to get support and help and that now is the time to do so. People really differ. However, in the early stages one sees that the person might be in a more complicated or mixed-feeling place regarding the person's recovery.

Chairman

When they come to you, is there an assessment process? How does that work? If somebody comes to you, do you have a team of counsellors?

Ms Kathy Downes

No, we do not offer treatment. We offer supports to people within treatment or outside treatment. We also offer support to people who are experiencing disordered eating or maybe questioning something within themselves, but not necessarily diagnosed with an eating disorder per se.

Chairman

Could you say a little more about the SeeMySelf programme?

Ms Kathy Downes

Our SeeMySelf programme was created by SilverCloud Health, probably in 2014. It is an online programme for young persons aged between 16 years and 23 years. It is less specifically orientated towards eating disorders and is more about body image, negative body image, self worth and self esteem. The young people engage over an eight-week period. All the programmes are online. They have a journal. It is very cognitive behavioural therapy-based. They have lots of exercises and lots of things in which they actively engage. Once weekly they have a mentor or supporter who emails them, goes through the material, asks how they are getting on and talks them through things.

Chairman

I want to get my head around how Bodywhys works. Does it have groups around the country and does it have volunteers who work the groups?

Ms Kathy Downes

Yes. At present, we have approximately 50 volunteers. In 2019, we probably had 22 or 23 volunteers, but Covid-19 has increased demand and it also has given us more volunteers.

Many people have come forward. We have a national helpline manned by volunteers. We had a face-to-face group in Dublin before the Covid pandemic. That has not come back yet. We are thinking through how to make that a safe space once again. We have an online teen group that runs once a week. We also have an online adult group. These are to provide support for people with eating disorders. The adult group also runs once a week. As I mentioned earlier, we are going to start up a men’s online support group in June. In September, we are going to start a student online support group because we have begun to recognise that students have quite specific needs arising from going off to college. We also have an email-based support service, for which there is great demand. It is more than just sending emails back and forth; it is almost like a listening ear in an email. Those are our services.

Chairman

I have written down a couple of things that came to mind. There have been reports in the online newspaper, The Journal, about people with eating disorders having to fund their own treatment. I want to ask the representatives from Bodywhys about this. I am talking about the likes of Lois Bridges, that is, private treatment centres. Some people do not have health insurance. One young woman mentioned in The Journal had to crowdfund to pay for her treatment at one of the private eating disorder centres. Do the witnesses know if there are many people in that situation?

Ms Jacinta Hastings

I thank the Chair for the question. We were not aware of any such situation until that particular one, which we are now aware of, was reported. The process of accessing an inpatient facility begins with the need being assessed by the consultant psychiatrist and the team. Once an assessment has been made, if it is deemed necessary for the person to receive inpatient treatment rather than treatment in the community and if that treatment is not available in a public facility, the options include attending a private provider. As the Chair mentioned, access to such facilities is reliant on private health insurance but, in some cases and if deemed necessary, the consultant can make a case to the HSE to support the person to enter the facility. The consultant makes that assessment.

Chairman

Who would that consultant be? Would it be somebody who solely works in the area of eating disorders?

Ms Jacinta Hastings

It would be the consultant psychiatrist on the team. The consultant psychiatrist would be the team lead.

Chairman

I would like the witnesses to expand on Bodywhys' submission on the review of the Mental Health Act 2001, which was mentioned earlier. Will they give us a little bit more detail on that submission?

Ms Jacinta Hastings

On the submission we made in respect of the Mental Health Act, I will first say that we welcome the review of the Act. It is long overdue. There were a number of recommendations we wanted to support. One of these was submitted by the Psychological Society of Ireland, PSI, and related to the importance of increasing the number of psychological services. The PSI has been very vocal about its concerns about the lack of psychologists and about psychologists in training not being paid and so on. We support that recommendation completely.

From an eating disorder perspective, we want capacity and consent to be considered. This comes back to what we were discussing earlier. I believe it was Deputy Gino Kenny who asked about people having to be made a ward of court. We just wanted to ensure the Act was appropriate to this situation in which people could find themselves. It is very distressing for somebody who might be very ill physically and cognitively. As Ms Parsons said, the family is often pleading for intervention and the clinicians are trying to do the best for their patient. It is a very difficult situation for everybody if there has to be a court process to make a person a ward of court in order to intervene.

What we were looking at in the Act was to make that process as streamlined as possible to ensure there would be no impact on the patient. It is probably looking at trying to review the ward of courtship, as it applies to people with eating disorders. It is quite a complex legal process.

Chairman

Would Ms Hastings have recommendations as to how that review might go?

Ms Jacinta Hastings

We made our submission and one of the things we advocated for in the submission was for advance directives to be considered also so that, particularly in an adult situation, their requirements would be considered in the recommendations. It is something that has been considered for quite a long time, but an advance directive would certainly help everybody if it was on the patient's file.

Chairman

Does Deputy Ward have any more questions?

Deputy Mark Ward

No.

Chairman

I thank the Bodywhys representatives very much for their presentations today. We greatly appreciate that they have come in, especially at such short notice, as we did not give them much time. This is an area we are very concerned about and we want to learn more about it. The numbers they have given us today of approximately 9,000 in 2021, which does not include the families, the peers and all the people around that, are quite phenomenal when you think about it. I thank them also for the great work they are doing.

The joint committee adjourned at 12.37 p.m. until 11 a.m. on Tuesday, 31 May 2022.