In this part of the series I'll talk about what can be expected at the hospital and inpatient units (from a carer's perspective), and some things I wish I would have known in the beginning.
This was my situation, and I really hope yours is better.
While my daughter was on the waitlist for an inpatient unit in CAMHS, she became too unwell and needed to go to A&E at the children's hospital.
In hospitals, your child could spend at least a day in triage, depending how busy the hospital is, before they get a bed. They may be put on fluids, may get an ECG, and have blood pressure and heart rate checked.
If they need to be admitted, they may need to be transferred to a different hospital that has available beds.
You could be in for a while, whether your child is admitted or not, so bring a bag of snacks, water, any medications you might need, and a phone charger and/or powerbank.
In triage, they decided to admit my daughter, and once she was settled in her room we were told she'd probably be home within a few days. This was the beginning of our nearly month-long journey in the first children's hospital. I was not expecting her stay to be this long, and had to keep taking time off work. She was in a high dependency unit, so someone needed to stay with her 24/7.
Her dad and I took turns spending every other night with her, and in the meanwhile spent what felt like a fortune on parking, petrol, and tolls.
What I was not aware of at the time is that we could have asked for a Special (also called an HCA or a Health Care Assistant).
This is not something we were offered and it was her first hospital admission, so I did not know it was something we could ask for. The Special is someone who is assigned to your child, and stays with them when you cannot. So we could have spent more nights at home, or more time going outside of the hospital for some fresh air had we known better.
While family and parental support and presence is crucial, please do not be afraid to ask for a Special, every parent needs a break.
During her hospital stay, she needed an NG (nasogastric tube) to support her nutritionally. This is a tube that goes through the nose, down the throat, and into the stomach to feed someone who is struggling to eat orally.
The process of watching an NG tube being inserted in your child is traumatising, to be honest, so please be prepared for it. If they experience any serious discomfort, don't be afraid to talk to the staff. My daughter needed the size of the tube adjusted.
After her stay in the children's hospital, her time on the waitlist came up for a CAMHS inpatient unit. This is what we had been waiting for..."she'd spend a few weeks there and come home and be fine."
But I was naive, and that's not the way recovery works. She spent three months in the inpatient unit.
Be prepared for a flexible timeline. Progress in recovery can take weeks or months, and it is unpredictable. I learned it was better to not expect anything and just go with the flow. Live day by day, hour by hour, minute by minute.
In the inpatient units, they have an on-site school that coordinated with her own school, so she would not get too far behind in her education.
She also finally received family based therapy, which involved myself meeting with a therapist, her meeting with a therapist, and then us both meeting with the therapist together. She also did occupational therapy, which occurs in a more relaxed way, such as doing art or baking.
As parents, we received meal coaching, and participated in multi-family therapy, which was really helpful. I talked about meal coaching in the first part of the blog, so won't go over it again, but it was one of the best tools.
Multi-family therapy (MFT) was where family members of the Eating Disorder patients in the inpatient unit all came once a week to learn different skills, and to do bonding and empathy exercises. We would work together with our loved one, and also be separated into different groups. There was a siblings day as well, which was helpful, because siblings are also very much affected by this.
There were set visiting hours, so we did not have to drive there everyday. During her time in the inpatient unit, we did notice small but steady improvements.
When her discharge date approached, she was not fully weight restored, but nearly there. Her eating had declined prior to her being discharged. I had seen all the steps she had made, so I was really hopeful she would do well at home. Her dad told them, "If she is discharged now, she will be back in hospital in a week." Unfortunately, that is exactly what happened.
We trusted the professionals, but looking back, I think we should have pushed for her to stay longer. I really think a few more weeks would have made a huge difference in her recovery, and possibly would have avoided re-hospitalisation.
As parents, we know are children best. I am not a confrontational person, but I learned through this whole process that I really needed to advocate for her and her care. If you don't think your child is ready for discharge, have a very frank but respectful discussion with the facility.
Upon discharge, she did not eat for an entire week, and did not even have time for an appointment with CAMHS. There was no therapist or transitional service lined up for her return home. We brought her back to A&E. This time, she was admitted to a different children's hospital than before. We truly thought since she had only been discharged from the inpatient unit for one week, that she would go straight back. In our minds, they had a duty of care. But that's not what happened.
Since it was a different hospital, we were told we were no longer in the catchment area for that inpatient facility, and she could not go back. Despite the fact that she was medically stable within the first few weeks of her admission to children's hospital, she remained there for three months as no inpatient facility would accept her.
We tried to get her into a private inpatient facility, but our insurance was denied because of a pre-existing condition. If your insurance is denied, do not give up. VHI has a much more flexible policy in regards to pre-existing conditions, so do not be afraid to change insurance if necessary.
With that being said, my daughter was partially reliant on the NG (nasogastric) tube at the time, so despite the fact that we now had different insurance, she still was not accepted to a private facility.
Most of the staff at the children's hospital were brilliant and were doing the best with what they had, but an acute hospital isn't an appropriate long-term place for a child with a mental illness.
At this hospital, we were finally given information about Specials, and we no longer had to spend the night in the hospital, so we mostly spent time there during the day or after work.
One thing though, to mention about Specials, is that it is generally someone different everyday. With so many different staff, shift changes, etc, we did find some issues with supervision and medications. Do not be afraid to speak to the hospital staff if you are concerned.
We also found staff had many different levels of experience, and many were not trained in Eating Disorders. Several times things were said that were triggering and set back her recovery. Another reason why it is better to be in an inpatient facility with specifically trained staff, than a general hospital. Most mean no harm, and simply don't know what they are saying is detrimental to recovery.
I hope this does not come off as condescending. She really grew to love some of the staff there, and some were absolutely brilliant. I will always appreciate the nurses who took the extra time to talk to her and work with her. The ones who actually tried to help her eat. The volunteer therapy dog, and the volunteers who played games and did crafts with her.
But in an acute hospital, she had no schooling, no specialised staff to support her during meals, and no therapeutic support. We were encouraged to be there most of the time. Her dad and I were both trying to maintain full-time jobs, which was extremely difficult. In the past year I ended up taking probably close to five months off work; a mix of certfied and unpaid leave, neither of which was sustainable.
Some days I was away from home from 9am to 10pm. I am a single parent, and my oldest daughter, who was 17 at the time, was often alone. I was at a stalemate where she wouldn't go to her dad's house, and her dad would not come to my house. This left me in a very frustrating situation where I felt I had to choose between my two daughters.
Looking back, one thing I would have done would be to balance things better in the beginning. Make sure to set aside time for your other children as well. Don't let them feel forgotten. Scale back time at the hospital if and when you can. Do fun things together with your other children whenever you get the opportunity. It is a hard situation and I was spread very thin, but a bit more balance would have really helped.
As my daughter started to eat better orally on her own, she was discharged home after spending two or three months in the children's hospital.
She had several check-ins with the hospital, and a few with CAMHS. One thing I have found frequently in her recovery, is that it is very difficult to get her to go to CAMHS appointments. There were several times when I just couldn't get her there, so the two clinical nurses and psychiatrist were brilliant, and came to our house.
While I know CAMHS is different in each location, our local CAMHS community team has brilliant staff, they are just underresourced.
Less than two weeks later, my daugher was once again in A&E at the children's hospital. This time, she had given up hope and was fully reliant on the NG tube. This stay was for four months.
We were again faced with the situation of no public or private inpatient unit accepting her, because of catchment, it not being "clinically appropriate," according to the HSE, or because of her reliance on the NG tube.
At this stage we found absolutley no help for this problem. CAMHS and the children's hospital referred her to various inpatient units multiple times on an emergency basis, and all referrals were denied.
In order to seek help, we filed a complaint with the HSE, with the inpatient unit, and the Ombudsman for Children. We also emailed all of our local TDs letting them know about the situation and asking for help.
Do not be afraid to go through these processes if you are in the same situation. I wish we would have done it sooner, to be honest. My daughter deserved the appropriate treatment for her illness, and she was not getting it.
Despite all of these efforts, it amounted to nothing, and my daughter was still stuck in a children's hospital with a mental health disorder left untreated.
At this stage I turned to the media. It was my last resort after months of getting nowhere through the normal complaint routes. Do not be afraid to go to the media to highlight these issues if necessary. About a week after the article was published in The Journal, my daughter got a place in an inpatient unit that previously denied her.
The reason (I believe) that the inpatient units do not accept patients on an NG tube is because if the inpatient facility cannot provide NG feeding when needed, the child will need to be transferred back to A&E. So in the meantime, while the child is stuck in the children's hospital on an NG tube, they are receiving zero therapeutic supports.
The zero therapeutic supports means they are not recovering, and cannot break a reliance on the NG tube, because they are not getting the necessary mental health support.
My point in saying all of this, is that I really hope to god you never find yourself in this situation of complete helplessness. You are your child's best, and sometimes only, advocate. Speak up when you need to, if you feel your child is not getting the appropriate mental health support that they need.
When my daughter finally was transferred to the second inpatient unit, we made it clear that we wanted her to receive therapeutic supports, and that we wanted her to have home visits as soon as possible so she could start preparing the transition home, after being instituionalised for nearly a year.
The transfer to the inpatient unit is exactly what was needed to kickstart her recovery. Because she was still breaking her reliance on the NG tube, she was transferred back and forth to an adult A&E three times from the inpatient facility. She was angry and frustrated, and we were terrified and tired. We just wanted her to come home where she belonged.
At this stage I wondered why she had spent a total of 7 months in a children's hospital, if she could have been receiving support in a psychiatric facility, and been transported to A&E if necessary. She at least would have been getting some therapeutic support, instead of none.
We had some family based therapy while she was in this inpatient unit, with her, her dad, and myself altogether with the team. We also had a refresher meal coaching session, which we were well able to do at that stage. She was able to do activities again, like school and baking.
After about 2 months inpatient, with most of it being home visits, she was finally discharged home.
She spent 13 months altogether in two different children's hospitals, two different inpatient units, and one adult hospital.
The month she was discharged, I took a few weeks off work unpaid, to help her get settled back into home, and life in the "real world."
In the meantime, I applied for Carer's Benefit so I could be home more to help with her recovery. This benefit allows me to still work two days per week, and supplements my income with a weekly payment.
It has been such a relief to be home more. The past few years have taken a huge toll on my mental health and my physical wellbeing. I need this time to help myself recover, and to help my daughter recover. Our whole family needs time to heal.
She has been home for about four months now, but has not gone back to school yet as she's still recovering. I think she has missed about 16 months of school, plus or minus, because of this illness.
I am really sorry to share this horrible story, and I am happy to say that this is not everybody's journey.
But I will say one of the only ways I found to cope during this time of constant driving, constant appointments, constant worrying, constant work absence, constant stress, and constant unpredictability, was to learn to not expect anything, and to expect the unexpected.
Some days I literally had to take things minute by minute to survive. This meant learning to let go of stability and predictability, and learning to go with whatever each day brought me.
I hit rock bottom at one stage, and did not think I could cope with it anymore. It was too hard. But she needed me, and I knew I needed to pick myself back up instead letting myself go down further into a rut. By learning to be strong I have had to get rid of fear, find my voice, speak up for myself and for her, and life has been a lot easier because of it.
Now, for the things I really wish someone had told me that I had no clue about. If no HSE facility will treat your child, you have the right to ask the HSE to fund your loved one in a private facility. This was never offered to my daughter, despite the fact no public psychiatric facility would treat her. I am telling you, so you know to ask if you need to.
There is also a Treatment Abroad Scheme. Because we were finding it so difficult to find anywhere in Ireland to treat my daughter, we could have applied for this scheme to have her treated abroad. Many other parents have had to apply for this and have their child treated in the UK, because the care here simply isn't sufficient, or sometimes even available.
I found myself in a situation where I had taken a huge financial hit. The cost of private therapy, hospital parking, petrol, tolls, and unpaid leave from work all added up. I was bleeding money. So I learned I could apply for the Domicillary Care Allowance, which was a huge help.
When she turned 16, she could apply for Disability Allowance in her own right. Recovery can be long and expensive, so I strongly encourage you to apply for whatever you qualify for.
A big part of the recovery process, which I will talk about in the next blog, involves her getting to know herself again, and the Disability Allowance can go a long way in helping her do that.
I am so happy to finally have her home. So next steps, and next posts... recovery.
Recap:
The biggest lesson I took from this situation is that I am my child's own best advocate. You know your child best. I am not saying be argumentative with doctors, nurses, and staff. Most of them are doing their best in a difficult job with limited resources. Always be kind and understand their situation too, but at the end of the day, you know what your child needs and it is okay to ask for it.
Also remember to take care of yourself. Rest, eat well, get outside for a walk if you can. Go out with freinds, family, and loved ones. Go to therapy or get help if you need it. It's 100% an airplane in distress situation- you need to put your oxygen mask on first to be able to help someone else.
I am really hoping this post shows the importance of early intervention. One of the main goals of the Mind EveryBody campaign is to ask for earlier interventions, including shorter CAMHS waitlists, earlier availability of therapy, and early supports and education for parents. If this entire experience could have been avoided by early interventions, I would take it in a heartbeat.