"Everyone Matters to Somebody!"

I am a concerned family member who sadly witnessed what I believe was poor care and treatment of my intellectually disabled and autistic brother who also suffers from a mental health condition. He was transferred to the emergency department at Fiona Stanley Hospital (FSH) in Perth from Alma Street Triage at Fremantle Hospital (FMH). I believe on transfer there seems to have been significant miscommunication of my brother's patient history from one hospital to another which I feel was the main cause of his poor medical care.

There seemed to be a complete lack of understanding of my brother's mental and intellectual capacity and how placing an Autistic person in a open cubicle, over loaded with visual-hearing stimuli and ever changing staff who appeared to have no to little mental health expertise led to a very stressful emotional and worsening physical state of my brother in the time he was receiving care in FSH ED Department. Sadly I also observed little compassion & empathy from staff, which I am not sure is more due to perhaps staff burn out - poor staffing and support? Perhaps worth FSH Executive to further investigate and ask the question - how empathetic are the caregivers at FSH ED?  

What I feel is that unfortunately the environment they were placing him in at FSH ED to treat his physical condition only aggravated his physical state due to the lack of acknowledgement of his intellectual and mental health condition. After arriving to ED to be by his beside  I was asked several times was my brother homeless-living on the streets? All I kept thinking was, why would they be asking me this? Because if the transfer between the two hospital departments would have been clear they would have read his medical records and would have read his personal details including that he has a home address. On transfer or at FSH they cut all his upper body clothing so then my brother spent 8 hrs trying to understand why he could not do up any of the buttons on his shirt to be able to feel more comfortable in hospital lying in bed for so many hours with differing people coming in and out of the room, as he felt very exposed personally and physically he felt cold. Throughout the 8 hour ordeal I witnessed three times where my brother was physically pinned down by up to 4-5 heavily set security guards which they called something else which I believe was completely unnecessary. It was a very traumatic experience for him and for myself to witness. My brother had a PICC (peripherally inserted central catheter) line in which was causing him a lot of distress, so he wanted it taken out. Unfortunately, because staff would not listen to him or myself, my brother tried several times to take it out himself hence the apparent need for 'security guard looking staff' to physically pin him down to the bed, so nursing staff would be able to re-secure and position the needle which was causing him a lot of pain and discomfort. It seemed they cared more for the PICC line remaining in his arm than for how the PICC line was making him feel.

What worries me throughout my experience with my brother in the 8 hours we were there - I think I interacted for less than 5 mins with a consultant and many nurses changed shifts throughout this time. But more concerning was there seemed to be no physical presence or minimal interaction with a qualified FSH Psychiatrist who perhaps may have better understood that to physically treat my brother effectively and efficiently, one needed to have a good understanding and acknowledgment of his mental health and personal condition particularly on how to best treat someone medically with autism. 

If a patient from a mental health facility is being transferred to another hospital then I would have thought it is in the best interest of the patient and treating team members that a qualified mental health medical practitioner be present and provide guidance or expertise on their medical management. Thankfully after 8 hrs my brother was discharged.

The following day I was required to go back to Fremantle Hospital and I asked the administration staff if they could check my next of kin details were all up to date e.g. phone number etc..  And on checking the secretary mentioned that all my next of kin details had actually been deleted and his father's details and my brother's address had all been de-activated. When I asked how and why this could have happened they mentioned now that they share the same system as FSH and that someone at FSH must have done it. 

If it wasn't for me asking to check my contact details on my brother's medical record - what may have happened if my brother had suffered a medical emergency and no details were on his record of having a next of kin or a home address?

I did not understand how all of my brother's personal details could have been deleted and deactivated? For some reason on presentation and during the time he was a patient at FSH someone had changed and edited his personal details and as you can appreciate this may have had significant implications for him in the future.

All I can deduce is that on appearance of my brother to FSH ED rather than having a thorough and clear communication on patient transfer from one hospital department to another that on presentation staff at FSH ED assumed he was a homeless person by his physical appearance and changed his personal record accordingly. Making assumptions on people rather than taking a good 10 minutes to have a clear and comprehensive patient hand-over and good communication with family members led to I believe poor medical management and the changing of his personal medical record which is dissatisfactory.  

I hope the feedback I have provided can help other people receiving care from FSH ED Dept that may suffer from a mental health condition or disabilities receive more optimal and compassionate care in the future. I understand that ED team members are working in a very stressful environment however, FSH may wish to look at improving communication in the transferring of patients from Fremantle triage to a general ED Department. It would be good if perhaps with mental health on the rise in the community that more ED staff have increased training and expertise in dealing with mental health patients and even better perhaps a supervising Psychiatrist be able to be more hands on in FSH Emergency Department when required. A question of whether it is currently inadequately staffed and under-resourced?

There just seemed to be a poor understanding of how to treat an Autistic adult with intellectual disabilities and a mental health condition which I appreciate is complex, but even if they had paid more attention to a family member who was sitting by the side of a loved one and asked for some advice on the best management of him may, have led to better care and a safer, more healing environment for all involved.  Is there a better way? I hope so...

In addition, what I would like caregivers to never lose sight of is that ''everyone matters to somebody''. Perhaps on arrival to FSH ED staff saw someone they thought on appearance was a homeless person, who had suffered an accidental overdose but, actually he is an intellectually disabled brother with Autism who has a mental health condition who was extremely frightened needing the compassionate care and understanding from doctors and nurses. People are not just physical conditions to manage, they are human beings who are loved and someone's brother, sister, mother, daughter, dad...

My brother needed to attend a hospital follow up appointment and to watch his mouth literally chatter in nervousness and fear worries me that the very distressing experience at FSH ED has now caused additional trauma to a person that already struggles emotionally, mentally and physically. 

I would be happy to speak with hospital decision makers in the hope to provide constructive feedback to better the care of mental health patients being transferred to FSH to essentially find better ways, better care forward of other patients with similar needs to my brother. 

As to treat a physical condition optimally there needs to be a real acknowledgement and understanding of peoples emotional and mental needs too. 

Kindest regards,

Concerned family member.