My eating disorder journey update, and the struggle for vital services I and others face to get the healthcare we deserve

A Blog Article by Amanda 

Hi everyone, sorry I haven’t written in a long time I’ve lost my writing “mojo” and haven’t known what to really say lately. But given that its Eating Disorders Awareness Week 2019 I said I’d post one, plus I don’t think I’ve given an update since before my last inpatient admission.

As a lot of you know, I spent July to October as and inpatient at Lois Bridges Eating Disorder unit. I also did their outpatient programme from October to December. This was my second admission as an inpatient. It was extremely difficult and I struggled a lot. It was however a completely different admission to my previous one. When I was admitted I kept telling the professionals there that “I was a failure, I was back to square one etc.” they assured me that nobody is ever back to square one, to which I didn’t believe. I soon learned (they were right) I wasn’t back to square one, I already had a trusting relationship with the staff so I didn’t need to start from scratch like last time, this really helped me in relation to group therapy, as I was familiar with the envoirnment and how the programme was run which is vital for me as I don’t respond well to change and new situations. Before my admission my psychiatrist was keen to get me to try another treatment facility but I stuck my heals in as I know myself better than her and I knew what was best for me. I am an extremely stubborn person and sometimes that pays off if I use it in the right way.

Like my last admission to inpatient I had to fight the HSE for funding as I didn’t have health insurance. It is absolutely soul destroying fighting for your right to healthcare because the eating disorder voice constantly tells you that “you are worthless and don’t deserve care” “you aren’t ‘sick enough’” and at the times the HSE actually enable that voice in your head. The funding application process took 6 months to be granted, although I am extremely grateful I received it as I know not everyone does, it should not take 6 months. Its unfair and your health is deteriorating every day, my eating disorder behaviours where out of control, I won’t go into any more detail about them as I am aware information like that can be triggering for people.

Eating disorders are the most fatal of all mental illness. Imagine having cancer and them letting you get sicker, for the cancer to spread before they will offer you treatment. This is basically how eating disorders are treated in Ireland in the public sector HSE from my experience. There are 3 public beds in the entire island of Ireland, with over 200,000 people who suffer from an eating disorder, it’s disgraceful. There is of course treatment if you have health insurance, like St. Patrick’s hospital, and St John of God’s and of course Lois Bridges. Lois Bridges is the only Residential unit in Ireland for the treatment of eating disorders. I am so grateful it exists because I wouldn’t cope in the clinical envoirnment of a hospital, so Lois Bridges is perfect for me.

As part of my funding package I was given 6 dietetic sessions as an outpatient to continue with the consultant dietitian, I have spaced them out so they last longer and I have two sessions left at present. I am worried about when they finish as I am not sure I will be funded any further to see my dietitian and I can’t afford to see her privately myself. My own community mental health team don’t have access to a dietitian and given that it’s a VITAL part of my recovery I worry what is going to happen.

Having to space the sessions out so they will last me longer isn’t helpful because I have too far of a gap between sessions, given the strength of my eating disorder its strongly recommended I have intense support and have weekly dietetic sessions. The care for eating disorders in Ireland is shocking, I find the HSE don’t want to fund your treatment for private inpatient services unless you put in a hard fight, yet when you finish they don’t want to help you stay well by providing vital interventions, as a result I have fallen backwards a bit. Would it not make sense for our health service to provide services to help people stay well, thus saving them money in the long run when you don’t have to keep returning to hospital? It’s a no brainer in my opinion.

I have heard recently from two different people who have had their funding to see a private dietitian pulled, one of which has been critically ill. It makes me so sad given that the HSE are about to spend 450K to find out why the National Children’s Hospital cost has doubled, and for what? they are still going to pay for it regardless, they are spending money on a report to see why they are spending money !! you actually couldn’t make it up!! (eye roll) yet they wont use money to help people who really need it to potentially save their lives and not just in relation to eating disorders.

I think when people leave treatment there is a perception that you are “fixed” but this couldn’t be further from the truth. I am so far from being fixed. Eating disorders are so sneaky and they can creep back up very quickly. I personally believe that inpatient treatment should be (needs based) and not a set number of weeks, all treatment programs are 12 weeks, this is not because this is all a person needs, but this is because someone in an insurance company at some stage put a number on what they would cover and came up with the magic number of 12. Before I even left treatment professionals knew I wasn’t ready, I knew I wasn’t ready. I felt like I was only coming to terms with being there and getting my around things before it was time to leave again, it feels like the rug is being pulled from under you, like your armbands have been taken away before you have learned to swim. And so often people start to sink and the cycle continues, especially the fact that you have had 24/7 support, you return home to 1 hour of therapy a week.

The care I have received from Lois Bridges has been truly amazing. I can’t thank them enough for the dedication they have showed to me. They went above and beyond and I know I can be a pain in the arse at times, but they fight so hard for me and others who have walked through those doors. If it wasn’t for my therapist and the multidisciplinary team at Lois Bridges I most likely wouldn’t be alive today. They never give up on someone with an eating disorder, and they constantly remind people that recovery is possible.

The HSE currently have a five year plan to roll out a clinical programme specifically for eating disorder treatment. It was launched last year and its aim is to grow services in Ireland, develop day hospitals, community services, more inpatient beds etc. I am following this development, and I am glad that finally things will start to change in relation to the treatment of eating disorders in the future.

You will find information about this here

I know this blog post doesn’t seem very upbeat but it’s the reality of what is my current situation and the situation for a lot of people who suffer from an eating disorder. It was also thrown together, I nearly wasn’t going to do it. So apologies for the quality.

If you feel you may have an eating disorder or someone you know, please contact Bodywhys Ireland for support.

Big hugs to anyone out there who is battling this horrible illness, please fight for your right to the healthcare you so deserve. Wishing you all recovery!

Amanda xxx

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