JOINT COMMITTEE ON HEALTH AND CHILDREN díospóireacht -
Tuesday, 9 Mar 2010

BodyWhys.

Chairman

I welcome Ms Jacinta Hastings, chief executive officer, BodyWhys, and Professor Fiona McNicholas, child and adolescent psychiatrist. BodyWhys.

I draw the delegates' attention to the fact that while members of the committee have absolute privilege, the same privilege does not extend to witnesses appearing before it. I remind members of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside the House, or an official, by name or in such a way as to make him or her identifiable.

I apologise for the delays in today's proceedings.

Ms Jacinta Hastings

BodyWhys is the eating disorders association. I will set the context for our presentation. I will then hand over to Professor Fiona McNicholas to deal with the issue of eating disorders and its prevalence. When taking questions we can then deal with the policy and the services available.

BodyWhys is the national voluntary organisation providing support to people affected by eating disorders, predominantly anorexia and bulimia. The services we provide include: a national helpline; face-to-face support groups in Galway, Dublin and Carlow with an expansion process in train; online support groups, BodyWhysConnect, and a recently launched youth section, YouthConnect, for those under 18 years of age; information leaflets; and e-mail and text support. Similar to the other groups, schools are a big focus of our work, particularly in regard to psycho-education and prevention. All our work is delivered by trained volunteers. We advocate for improved services and the implementation of the recommendations in A Vision for Change.

It is estimated there are 200,000 people in Ireland with eating disorders according to information supplied by the Department of Health and Children in 2006. Eating disorders have the highest mortality rate of all mental illnesses — either from completed suicide or organ failure.

At today's meeting we are concentrating on children and adolescents and the service provision. I invite Professor McNicholas to take the committee through the issue and its prevalence.

Professor Fiona McNicholas

The group of eating disorders generally consist of anorexia nervosa where a young person starts dieting and begins to lose weight to the point of starvation with medical and psychological complications. It also includes bulimia nervosa where there may or may not be dieting. There is often associated binge eating and the compensatory mechanism of losing the weight involves either vomiting or taking various medications. Binge eating disorder is becoming increasingly common. The other condition, obesity, while notwithstanding it has serious medical complications, does not always have mental health complications and is not typically part of eating disorders, nor of feeding disorders of childhood. However, obesity and feeding disorders increase the risk of developing an eating disorder in later life.

Taking the group as a whole, anorexia and bulimia occur in about 1% to 2% of adolescents and young adults, most commonly females, but they also occur in boys and males, and possibly increasingly so. The broader group, those who have not lost sufficient weight to have been medically compromised, extends to 5% to 10% of the population, similar to the 200,000 to whom Ms Hastings referred. What is often forgotten is that half of eating disorders have the age of onset before the 16th birthday. It is a disorder within the child's health component and early intervention and prevention is most important.

Another aspect that is frequently forgotten is that the duration of illness is often chronic for the majority of cases. Almost half of them take more than six years to overcome their illness. It is clear there are personal and family complications, and medical, psychological and academic issues resulting in a huge cost to families and financial costs to the system not only in treatment but on account of lost opportunities.

In terms of treatment, prevention is very important. This is especially so when we consider on the flip side the epidemic in obesity which must be managed very carefully without over-emphasising all the negative stereotypes that go with being overweight because that drives people to an eating disorder. Prevention is important. When somebody has an eating disorder, the treatment should be available in the community, within either primary or secondary care with GPs, councillors, support organisations such as BodyWhys, and where there is an established eating disorder, within the community child psychiatry clinics. Only a small proportion of children and adolescents should be admitted into a hospital facility — typically where the medical complications are going to be severe.

Prognostic factors such as early intervention and treatment administered by those who understand eating disorders are associated with the best outcomes.

Deputy Dan Neville

I welcome BodyWhys whom I have known for many years and I am aware of the excellent work it does. We go back to the whole area of child and adolescent psychiatric services and we have flogged that horse strongly over many years. We are hopeful that something might develop in this area under the Minister of State at the Department of Health and Children, Deputy John Moloney, because he appears to have more interest than usual in this issue. He has made promises which we hope will be kept. The number of beds available for those who need hospitalised treatment is paltry. We do not have the multi-disciplinary teams in place to deal with a person with an eating disorder, given that it requires a multi-disciplinary approach rather than merely a psychiatric approach. We may have discussed this issue previously.

I recently attended a conference on psychotherapy. In most parts of Europe it is not controlled or regulated. That is a matter of great concern. The Minister said that regulation would be introduced under the Health and Social Care Professionals Act 2005 but that did not happen due to a disagreement among the groups. For the past two years they have agreed to a set of circumstances but the Minister of State proposes to regulate the other 12 professions before looking at the area of psychotherapy. There is evidence of damage being caused to vulnerable people because of that. There are some excellent psychotherapists and counsellors here and some of the organisations involved have very high standards but there is no central control. I am aware that BodyWhys has been concerned about that in the past. Perhaps the witnesses would deal with that issue. I am aware of the difficulties in regard to obtaining services for people with eating disorders. We meet many parents who are at the end of their tether to get assistance while they watch their child or young person literally dying before their eyes. They are crying out to have that young person saved and sometimes it does not happen. If the services outlined in A Vision for Change were in place, many people would be saved. That is a fact and we have known it for some time.

Deputy Jan O’Sullivan

I thank the delegation for its presentation. I have also heard BodyWhys on a number of occasions and I congratulate it on its work. However, it must get frustrated sometimes at the lack of response over the years. I share with Deputy Neville the hope that the Minister of State, Deputy Moloney, will be able to make progress in this area.

In regard to the short-term goal of having four dedicated beds in place and developing community teams and also the long-term goal in A Vision for Change of providing dedicated beds and teams in each of the HSE areas, has anyone given the representatives an indication of the timeframe for same? What progress has been made on the more short-term goal of having at least some dedicated beds, specifically for eating disorders? What is currently happening? My understanding is that, for example, Crumlin children's hospital would look after a number of people with eating disorders. In practical terms, are these young people either in paediatric hospitals or general hospitals when they need to be hospitalised?

Deputy Rory O’Hanlon

My first question concerns the relationship between Bodywhys and the Health Service Executive. I am aware the Health Service Executive gives some funding to the organisation but what is the level of co-operation, co-ordination and even integration of services? Is an integrated service provided by Bodywhys along with the Health Service Executive?

My second question concerns the immediate priorities of the organisation for development in the community. Mention was made already to the hospitals in the four health service regions but what are the organisation's priorities?

Deputy James Reilly

My apologies to Professor McNicholas and Ms Hastings for not being here earlier. I welcome the representatives and thank them for their presentation, which I read through quickly. I also watched some of the presentation in my office.

Given the lack of psychiatric and psychological support for teenagers in particular, and the lack of in-patient beds, what do the representatives see as being the bed requirement for each area? Also, the service available to general practitioners to refer patients is dysfunctional and disparate. It is difficult to find and access the right service because waiting times are so long. The witnesses may have covered some aspects of that but they might indicate the top three actions they would like to see happen, and what they consider would be the costings around that.

Ms Jacinta Hastings

I will take the questions about the child and adolescent mental health service development, and Professor McNicholas will deal with the questions on the children's hospital.

To refer back to the first Children and Adolescent Mental Health Service, CAMS, report published in 2009, it identified that eating disorders was the second highest issue of inpatient requirement, second only to depression. There is no question that it is a serious issue requiring a serious response.

On the child and adolescent mental health teams in place, at the end of 2009 there were 55 teams in place, which is welcome. However, many of the teams are not complete. The expectation of a staffing level of a team is 13, of which 11 are clinical. That is the multidisciplinary team that must be in place and it would include a consultant psychiatrist, a doctor in training, two psychiatric nurses, two clinical psychologists, two social workers, an occupational therapist, speech and language therapists, child care, administration staff and, in regard to eating disorders, a nutrition dietitian would be part of that team. It is a matter of concern that the teams are not in place in their entirety and that the teams themselves are not complete.

On Deputy Neville's question about treatment options, if the HSE needs to do so it can buy public bed space from some of the private providers if it is not available. St. John of God Hospital and St. Patrick's Hospital have bed space that can be bought, if necessary. In some cases it is done through the paediatric system, which Professor McNicholas will refer to, and in other cases personnel are sent outside the country for treatment. Last year, four people were sent outside the jurisdiction for treatment. We have not been able to establish whether they were adults, children or a mix. That is not an ideal position for the person or for the family. We would like to see the investment being put into the service here to ensure that course of action is not necessary.

Deputy O'Hanlon asked about the relationship between Bodywhys and the HSE. We receive a small amount of core funding from the HSE. Last year, Bodywhys got €300,000. That sum has been reduced this year with the cuts in expenditure. We have a good working relationship with the HSE. It recognises us as the national support organisation.

We do not provide therapy. Our role is specific and very much on the support element. The support structures we have in place are recognised and supported by the HSE. One of the recommendations in A Vision for Change is that the voluntary sector working in the area would be supported and encouraged regarding the work we do.

Also, one of the recommendations concerned health promotion initiatives and we have been working with the National Office of Suicide Prevention. We have been co-branding with it in respect of some of our initiatives on health promotion.

Deputy Neville also expressed concern about the lack of regulation in the area of counselling. It is a huge concern because it affects vulnerable people. We would like to make sure that anybody seeking treatment would do so in a regulated area. That is something we will work on to determine if it can be progressed along the agenda.

Professor Fiona McNicholas

In terms of what currently happens with children with eating disorders, we should remind ourselves that for most of them it is community based. They should not be in a hospital. They should not be out of school. They should be with their families. Once we bring them into hospital we are disempowering the parents from the ability to feed their child because the medical staff does it for them. Sometimes that is necessary when their weight drops so low that medical complications arise. I work in Crumlin hospital and many children come in to Crumlin with very low weights. They are on cardiac monitors because we are concerned they may have cardiac arrests, and they have many other medical complications. They need to be admitted.

The service we provide in Crumlin hospital is as good as we can offer but is not the best service for them. They are managed in different paediatric wards. Sometimes they are on one ward, the next person who comes in is on another and therefore we are constantly spending our time working with paediatrically trained nurses to try to create a milieu that will be acceptable for these children. We are spending more and more of our time duplicating that work.

Deputy O'Hanlon asked about the priorities in the interim. One of them would be to cluster some beds in Crumlin hospital which could become the interim eating disorder unit. We have been asking for that for the past ten years.

There is hope on the horizon. I am delighted to say that when the national paediatric hospital is set up we are reassured that there will be an eating disorder unit in that hospital for about six to eight children, with inpatient facilities. Our hope is that we would put together a proposal that examines developing not just an inpatient unit but a day hospital, a step-down facility, and intensive outpatient facilities for individuals close enough to Dublin to attend on a daily basis.

It must also provide some resource and consultation to community child psychiatry clinics throughout the country. As these disorders, anorexia in particular, are not as common, the prevalence is low in the community. We might only have about 0.5% of children coming to the child and adolescent mental health services, CAMHS, clinic and therefore the clinicians are not used to treating the condition and, understandably, they will lose expertise. For that reason, we do need to have training that comes from individuals who work regularly with this group of children to the local services.

In terms of interim priorities, one of them would be whether we could have resources that would allow us develop family treatment approaches to keep these children in the community but also to support both the parents and the individuals themselves. Running parallel to that would be ongoing training, which we do as clinicians on a regular basis and with Bodywhys also, where clinicians come and we try to provide treatment approaches in the community.

Chairman

Do the children present invariably at an advanced stage? Are parents picking up the problem early on or are there any advanced warning signs that a patient should be aware of in order to take action to ensure the condition does not progress more rapidly?

Professor Fiona McNicholas

One of the things we do through the Lucena Foundation is give talks. This evening I will give a talk on examination stress for parents. One of the talks I give is on eating disorders and the problem is getting them to recognise when there is a change in normal dieting. One quarter of adult women are currently on a diet and 40% of teenagers are currently dieting. That is probably an underestimate. Parents need to recognise when the normal adolescent diet is beginning to get out of control. That is when the child is losing far too much weight, there is far too much emphasis on their weight as being the only important aspect of self-esteem and they are withdrawing socially and also emotionally from the family. They are hiding food and pretending they have already eaten. These are warning signs but they are not always picked up. If the child has been a little overweight, his or her GP may be reassured by the fact that he or she has not reached a low enough weight but the child may have dropped 20% of his or her body weight and still be in the normal range. There are warning signs to which parents and primary care practitioners can be alerted and then they contact the services. In Crumlin hospital we typically see those who are medically compromised because they have come for a physical assessment, whereas otherwise we would recommend their GP refer them to community child psychiatry services.

Chairman

I thank the two delegates for their presentation. We have learned a good deal. It is a matter for the committee to consider the presentations we have heard, digest what we have been fed and ascertain what recommendations we can make to the Department of the Health and Children and to the HSE. I thank the delegates for assisting us.

As there is no further business to discuss, the meeting is adjourned until 3 p.m. on Tuesday, 23 March 2010 when we will meet representatives of Age Action Ireland, the IMO and the HSE on centralising medical card services.

The joint committee adjourned at 5.30 p.m. until 3 p.m. on Tuesday, 23 March 2010.