"The mental fight"

Our child has been in Perth Children’s Hospital (PCH) for many months undergoing treatment for anorexia nervosa. They have spent months in the medical ward for being medically unstable and months on the mental health ward for being mentally unstable. I cannot understand when this brand new state of the art hospital was designed with no consideration to have a wing dedicated solely to eating disorders. Eating disorders are both medical and mental at the very same time.

There is a large team of clinicians within PCH working collaboratively to try and combat the epidemic of disordered eating, however, whilst a patient is admitted the disjointed system between medical and mental makes the process fail in so many areas. Patients are often suicidal when medically unstable (also when stable) and will self-harm as a way of coping but there is very little or no mental input on the medical ward. The patient has the ability to abscond which is putting their life at risk, a life which should be safe in a hospital setting. Also very little or no meal support, especially if the patient is unable to attend the day program.

My child was admitted to the medical ward again, their weight had dropped quite rapidly with the refusal of nutrition and they were extremely mentally unwell wanting nothing but to die. I was petrified with my child being back in hospital as they had endured numerous ‘holds’ in the past which has no doubt assisted in their poor mental state.

My child was admitted to the orthopaedics ward because there were no beds available on the medical ward and commenced with the NG feed.

The next night my child was transferred to the medical ward where they spent the next 5 nights with no mental support. They absconded twice with the second time me returning to the room to find my child being held by security, something I wanted to be avoided at all costs. I was really upset as this was exactly what I thought might happen and I had expressed my concerns.

Once medically stable it was up to the mental health ward - a discharge from one ward (at 7 pm which is already a stressful time of the day) and a re-admittance again - through all the admittance paperwork again and the need for a medical assessment which had to be that evening. I sat there until 10 pm and still no doctor, I practically begged that the doctor waits until morning to do the medical, stressing my child out even more, that night wasn't going to achieve anything.

Things declined very quickly on the mental health ward with refusal to get out of bed, refusal of nutrition, curled up in an extremely depressive state, a lot of self-harm. I expressed my concerns regarding the lack of nutrition and a medical confirmed that my child needed a continuous feed; they had only 600 ml of nutrition or water in the prior 48 hours.

Medical was say 9.30am, hours went by with still no nutrition running only to be told that the mental health ward has a policy which does not allow/accept continuous feeds to be run, a discharge and re-admittance to the medical ward needed to happen. However, there were no beds available in the medical ward. Needless to say, I was furious about the need to be transferred once again to a ward which has no mental support. My child still wanted nothing more than to die. No-one knew what was going to happen, we waited under great stress to be told at 6 pm there was a bed available down on the medical ward.

This move finally saw the nutrition get connected straight away and thankfully my child had a nurse by their side. This gave me the confidence to know that I could leave the hospital and restore ready for the next day. A nurse stayed by my child’s side day and night which thankfully kept their distress levels low and self-harm to zero, also no attempt to abscond. After 4 days of re-feeding, a meal plan was devised with the dieticians and put into play. A plan was also in place for me to gradually be absent for some meal times as this had not happened in the past 10 months. Yesterday was the first time my child had had 3 meals (actual food) since May of last year, it was extremely tough. It was a major achievement but obviously not in my child’s mind. My child had two other nutrition drinks that day with a nurse also which they had not done since May of last year. This could not have happened if it weren't for a positive encouraging support person/nurse sitting with my child. I relayed my thanks to the nurse manager on more than one occasion. This is something I/my husband and I have been craving from the hospital system since our child was diagnosed last April. Some support on the ward and around meal times.

We have been getting told all of this week, every day, that a transfer back up to the mental health ward was going to take place but no beds are available.

My life every single minute of every single day (like millions of other support people/carers) revolves around my child’s illness, it is a relentless mental illness and tries to drag you down with it.

Today I felt confident that I was in a position to break away and attend an eating disorders workshop which was being hosted in Floreat to hopefully gain some necessary skills to help with my child’s recovery. I dropped their lunch off at the hospital with a note for the nurses that today might be extra stressful as I was not going to be there for the whole day, plus the meal plan that was consumed the day prior would more than likely be playing on my child’s mind. I just wanted them to be aware of this and deal with it accordingly.

I felt inspired by what I had listened to in the presentations today and nervous at the same time arriving back at the hospital to see how my child’s day had gone. I was disappointed to find that they had been discharged and moved to the mental health ward, which we had been waiting for every day this week whilst I was there, done at a time that I could not be with my child for support.

I went up to the ward to be told that a room was not yet ready for my child to move into and was directed to a room at the back of the ward. I was so disappointed and angry to walk in and find my child in this room on their own in a distressed state. It had been over two hours since my child had been delivered from the other ward. It was over an hour past when their anti-anxiety medication was due and their afternoon nutrition. Admittedly the nursing staff asked my child to be out in the common area to join in crafts but their anti-social behaviour has become a part of my child’s illness and adds to their anxiety.

A new admission meant more paperwork, another medical, extreme stress......and so on the cycle goes.

My husband and I work extremely hard to learn about eating disorders and are dedicated to our child in beating this life-threatening illness which we know has a higher success rate if caught and treated in the early adolescent years. We acknowledge that it is a whole multidisciplinary team approach and want nothing more than this.

We understand and appreciate that clinicians are working tirelessly in their specialised areas but this is not enough. The hospital management, the two separate wards, the clinicians all need to come together on this. It is so frustrating that patients are bounced between wards when eating disorders are a chronic mental illness with often another comorbid diagnosis. There is nothing else out there for children under 16 so this needs to work the best way possible to give every chance of recovery before hitting the adult setting. Why days and months on a medical ward and then days and months on a mental health ward with broken up inconsistent treatment? Could there not be a more intensive one-on-one inpatient program for those young people displaying a more complex case?

I have written to hospital management and have also expressed my concerns to both the medical ward, the mental health ward and the Eating Disorder team yet I find myself still continually frustrated by the system and hospital policies. I know I am not alone in thinking this way.

So far this extended stay at PCH has seen us go from emergency to orthopedics, to medical, to mental health, back to medical and today back to mental health, how can this be any good for a person’s mental state.

Thumbs up to all of the individuals involved, thumbs down to the system.

Frustrated mum