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My name is Mary O’Sullivan.
 

My daughter suffers from severe anorexia nervosa. We live in Kerry and my husband and I are extremely worried and feel that our daughter desperately needs specialised treatment. We were talking to our GP, but unfortunately she doesn’t know too much about this condition and about what eating disorder treatments are available in Ireland.

So I decided in September 2006 to take things into my own hands. I went to the internet and found the Bodywhys website.
First I rang Bodywhys – the national eating disorder association - themselves and asked for any information about treatment programmes for eating disorders in Ireland.
‘They don’t have any’, I was told. They have a helpline and some support groups, brochures and booklets about eating disorders, but what kind of treatment programmes are available in this country ‘they don’t know’.
I must say I was a bit surprised talking to someone of the national eating disorder organisation in Ireland and they don’t know what kind of programmes are available in this country.
Then I decided to ring the 3 specialised hospitals in Dublin listed on the Bodywhys website.
First I rang St. Vincent in Dublin. I was lucky to meet a nice girl and we had a long talk. She said that an eating disorder treatment us such doesn’t exist. But they would have 3 beds for eating disorder patients - public only.
2 nurses -one full time and 1 part time.
a social worker
a part time dietician
The consultant Dr. Darby has now retired. There is a locum for 6 months and then hopefully the new consultant will cover eating disorders only. Up to now the consultant there treated not just eating disorders but everything else also that was in the unit. I asked if they would have any information on the internet.
’Nothing on the Internet’, I was told. I asked if they would not consider putting up some info there so that prospective patients and their families could see what they have to offer and also see the type of programme that is there.
I asked about an info brochure as I wanted to let my daughter see the type of programme available, but she said that they have no brochure or literature available for the public. Their info booklet is for the consultant only to go over with the patient when she is admitted. They don’t want to give it out first in case patients would be afraid of what was in front of them( I wonder how much they believe themselves in their programme , if there is any ) .
However the girl offered to see if there was an old one available and she would also ask nurses if they had any info available. I have received nothing so far. She also said that there was no government funding and the first question I was asked was 'had I VHI'. She told me that St.Vincent’s and other psychiatric hospitals were amalgamating and patients moving to
St. Vincent
I then rang St. Patrick’s. First call I just got a recording, there was nobody there. Next time I rang I got Dr. Griffins secretary. She said she would send me out a Booklet which I now have.
Fees - 415 euros per day for a period of 4 weeks average.
After that there is 415 euros per day day-care for 2 weeks, 3 days a week then 2 days a week and so on.
When I asked how often Dr. Griffin saw the patients, I was told about every two or three days. For how long I asked, ‘ it depends ‘.
When I asked if there is a one to one therapy in place, I was told ‘it depends’.
The costs in St. Patrick’s are 20,000 euros for the full programme, which lasts aprox. 12 weeks.

I then rang John of Gods and once again first time I got a recording. I then rang again and got the staff nurse.
They are open 1 yr last August in fact they have not had an official opening.
They deal with adolescence 12 - 18 yrs. maybe go down to 11 yr old.
They have 3 Beds and the cost 901.-€ per day, only private. (I asked the stuff nurse what did the 1.-,€ cover she laughed and said she didn’t know). There are only private patients accepted( Bupa Ireland is not covering any eating disorders at all , the VHI only covers, if you are a member already and you have no medical record of eating disorder symptoms for the last 5 years ). I asked her what if you couldn’t afford that money ,she told me that you can pressurize your health board and they have patients through the health boards, but they are treated as private patients.( pressurizing a health board can be a very frustrating process over years. Only reply on a application form can take up to 3 months)
The average stay in John of Gods is about 3 1/2 to 5 months.
Consultant - David McNamara.
No info of programme on the Internet , and once again I asked why not and would they not consider it helpful to patients and their families.
I was told to get info, I have to go to my GP , when I replied my GP has no info either , I was told I have to go to my GP. When I said that is not good enough, I got very reluctantly a sketchy info:
The programme is along the lines of - weight issues, regain weight, therapy - groups, a dietician one period per week, 2 nurses as key workers with the emphasis on regaining weight.
There is a senior consultant and a junior consultant, a social worker.
All this info was so sketchy, that I even was not sure, if I was talking to someone of a specialised eating disorder hospital.
I asked what happens at the end of the few months of treatment, and I was told that patients are discharged back to their own area. I said what happens if as in this area in Kerry they weren’t able to do anything , what was the point of discharging someone back to the same situation where there is no help available . The staff nurse said maybe they would see my daughter in Dublin as an outpatient for a while and then call in the people my daughter would be dealing with in her own area and tell them what to do !!!!!!!!!
Sounds good doesn’t it.
And who can afford all those trips to Dublin!!!!!
If it was as simple as that all the people in all the areas of Ireland would now be able to handle eating disorders and yet they are NOT.
She told me that all this information is for adolescents only but 'upstairs' is a unit for the older patients. My daughter would be according to them an older patient .The staff nurse couldn’t tell me anything about this unit and when I asked her do they not have any consultations and transfer of opinions and findings etc between the two sections of their hospital, she said no, absolutely
none. I would have thought that sufferers from an eating disorder would have a lot in common no matter what age and that info could be gained if professionals worked together.
I was told then that they would not agree with units where there were only eating disorder patients as they would compete with each other. The units in John of Gods deal with all kinds of mental health problems.
All this information was so vague, that even now while I am writing this down I am aware of, that all this can be very misleading.
I got the feeling, the people to whom I have spoken over the phone had no interest whatsoever.
What can I say to my daughter?

I then rang St. Josephs – the 'Upstairs' of John of Gods.
1st call - Rang out, no answer.
2nd call - Rang out, no answer.
3rd call - Rang out, no answer.
4th call - Rang out, no answer.
5th call - Rang out, no answer.

So I got no info at all there, not even an answer to the phone. But I must say that was the best info of them all. It was clear to me I never would send my daughter into a hospital, where I couldn’t get through to anybody.

In all that’s around 12 Beds covering the country. I said this to the people I have spoken to and said doesn’t this really amount to having no treatment for the thousands of sufferers. They agreed. If you were a public patient there was only St. Vincent, so if you are a public patient there are only 3 beds for the whole country. The girl in St. Vincent told me that the time you spent on the waiting list depends on the severity of the patients in the hospital at the time you were waiting and those in front of you on the list. As a ‘severe’ case was put in front of you on the list you could be waiting a long time to get in.
It crossed my mind, that maybe my daughter has to die first to be finally admitted. What a bizarre thought for a mother! What a hopeless situation for my daughter, who needs help!

That would appear to be the sum of eating disorder treatments available in this country after 3 hours making desperate phone calls - not much is it?
I must say I am utterly confused , I don’t know what to do , I don’t know how to find help for my daughter.
If I wanted to find a hotel for example anywhere on this planet, I can get streams of information within half an hour, but to find out what kind of eating disorder treatments are available in Ireland and if they would suit my daughter and her needs I am knocking on closed doors.

I took things into my own hands in September 2006, because my daughter really needs help. But I almost regret it now, we are left with less hope than we had before.
There is no therapy available here in Kerry, but what really is there in Dublin?
No Bodywhys and nobody to whom I spoke of the 3 specialised hospitals could give me any clear information. Maybe there is an eating disorder treatment available in Ireland, which would help my daughter, but how can I find out?
I am extremely worried, how must then my daughter feel?
She needs help right now. How much worse does she has to get to be justified for a waiting list?
I begin to wonder, if all those consultants have children too.

I want to share this difficult experience with you all, who are going through the same trauma.
I am sorry that I have nothing really helpful to tell.
I only can hope and pray, that when you try to find help and support in this country you may find more understanding and respect for yourselves and for your suffering children!

My heart goes out to you all

Mary O’Sullivan

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