IF YOU ASKED me seven years ago what an eating disorder was, I would have said it is a short-term illness where somebody has difficulty eating food. How very wrong I was back then.
This is the reason I so desperately want our attitudes to change towards such a powerful complex controlling and ruthless illness.
An eating disorder (ED) begins slowly by encouraging an individual what they are doing to their body and mind is the right move, until eventually it takes away any control that person has towards their own behaviour, thoughts, feelings and lives.
How do I know this? Because I have unfortunately seen my own beautiful daughter go through this so many times as a child and continue to do so now as an adult.
No dedicated beds for children
My daughter has often said to me, “Your normal is my abnormal”. She went from being a confident, happy, sociable and outgoing young teenager, to restricting her food, isolating herself, self-doubt and exhaustion from constantly fighting the thoughts in her head.
When someone has an ED, they need support, and their family needs help, but in Ireland there is a huge lack of such knowledge and support.
We have such a small number of beds available here for ED for the almost 200,000 Irish people who will have an eating disorder at some point in their lives.
Children and adolescents who require treatment can be admitted to an approved centre but there are currently no dedicated beds for eating disorders across the HSE. There are improvements in the pipeline with eight beds planned in the new National Children’s Hospital but this is not due to come into operation until 2023.
Though adults can be referred to any of the HSE’s acute mental-health approved centres, there are only three dedicated beds located in St Vincent’s University Hospital which are ring-fenced for adults with eating disorders.
Specific in-patient units for EDs are needed so that there is reassurance for people with EDs and their families that there is hope for recovery.
Early intervention lacking
Equally, if there were more healthcare workers trained on how to manage EDs, then early intervention could take place. I’m not doubting any medical team I have dealt with, but many were not trained to deal with such a complex illness.
One of the main recommendations in the national clinical programme for eating disorders is to treat people before they become sick enough for admission to hospital. To do this, hubs and mini-hubs of specialist teams were to be set up across the country, but to date, they have only been set up in Dublin and Cork.
Lack of inpatient beds and specialist teams is the reason that my daughter had to travel to England three times over the past number of years to help get the care she needed.
On two of these occasions she was so close to death that she would have died without the care of the inpatient units there. This was a horrendous experience for us and all other families in this situation to go through.
I have tried tirelessly to get our Government to acknowledge the need for change and to help people with EDs. We need more services in each county, not just in Dublin and Cork.
Eating disorders have the highest mortality of all mental health conditions. We need our children to be listened to when they are crying out for help.
They need to have a professional team to reassure them that the behaviours they are experiencing are not their fault. This is not a choice somebody makes. It’s an illness like any other and needs to be treated in the right way.
Aftercare needed to prevent relapse
Relapsing is another issue as there is no specialised aftercare in many areas in Ireland, including in Kerry where we live. Families are expected to hold the whole situation together when not completely understanding it themselves.
Looking after your child becomes a 24/7 job to prevent them from over-exercising and self-harming. Reassuring them that death is not the right option. It is exhausting, frustrating and financially crippling.
I want our government and health system to listen to families as we are under tremendous stress. Having support, reassurance and the right treatment is vital and I won’t give up until this is in place.
My daughter has gone through another relapse but is in the wonderful care of University Hospital Kerry at present. I strongly believe she will get better, but what happens to her treatment after she is discharged is something I have yet again to fight for.
I set up a support group to help other families going through this difficult journey which can be very isolating. My message to people is you are not on your own and we will get through this together.
But, we need the HSE and the Government to stop ignoring us and understand how much we need things to change for a better and happier life for our kids. Not a life of misery and uncertainty which they don’t deserve.
Joyce Russell runs the Parent Action and Care Group in Kerry which is a support group for families caring for a child with an eating disorder. This piece has been published with full approval from Joyce’s daughter Daniella.
If you need to speak to someone, contact:
SILENT TREATMENT Investigation
Do you want to know if people with eating disorders are being failed by the public health system?
The Noteworthy team want to do an in-depth investigation into the progress of the national clinical programme for eating disorders and what is causing delays in its implementation.
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