"Lack of care"

I was admitted to IPU2 recently. 

What I think has been done well

I am greatly appreciative that the specialists here have been able to diagnose my condition.

What I think has not been done well

I am very distressed that, in my opinion, several staff clearly don't believe my symptoms are real. I think that if they were educated to understand FND they wouldn't be making disrespectful remarks. It makes me frustrated and angry when it seems my symptoms are not taken seriously. This is not going to help in my recovery.

In addition to the shock of my diagnosis, I have (and still am) been traumatised by, in my opinion, my treatment by some staff on the mental health ward. Below are some examples of the way I have been treated:

- I feel I have been callously told that I am faking it when I enter a trance-like state and fall over.

- Being denied a wheelchair to get around the ward (without, I feel, being given an explanation). Being denied any physical assistance, seemingly because of OH&S protocols. Therefore having, in my opinion, to crawl like a baby to get anywhere, for fear of falling.

- When my partner complained, I understand that the nurses said they have witnessed me lowering myself to the ground. Saying I do not fall. However, my partner has taken photos of my knee which was bleeding and grazed from all the falls.

- Having a dissociative event (tremors) on the floor where I believe nurses walked past or stood by and watched and did nothing.

- I have many carpet burns and grazes on my arms and legs from falling many times a day. I'm scared to walk for fear of falling and injuring myself. I feel alone. I feel like I am not believed. I feel scared. I feel like no-one cares.

- On one occasion I fell with a bang and needed assistance. Nobody came out of the nurses' station to see if I was ok, I believe as they were in hand-over. The ward was quiet and I believe they must have heard me fall. I knocked on the door for assistance. I understand that someone said they don't care and someone else said it wasn't their problem, their shift was over. 

This is just a shortlist.

My partner has already raised a complaint by phone to the senior clinician about what we feel is the general lack of understanding and empathy of staff. My partner was deeply concerned for my wellbeing and safety. In my opinion, the response they got was not satisfactory. My partner felt that they were not taken seriously and, at the end of the discussion, I understand the senior clinician told my partner to look up the term ‘folie a deux’ (madness for two). Once my partner had researched this term, they were shocked to learn that the senior clinician was, in my opinion, clearly insinuating that I was delusional and was projecting that delusion onto my partner.

My story was emailed to 'feedback at Eastern Health' - no response received

My story was uploaded to the online feedback form the next day - no response received

Some days later and there appears to be minimal staff on the ward due to public holidays.  I am constantly falling down and bumping into walls because I can't control my body.  I believe staff have either been told not to assist or don't want to assist.  It appears there is only one doctor for the whole unit.  My body is sore and I have some wounds because I fall down so often every day.  Based on my experience, apparently, patients don't need care, compassion and understanding when there are public holidays. 

What I think you can do to improve

In my opinion, this matter needs to be escalated to all concerned staff who I feel have displayed totally unacceptable behaviour towards me. I think staff need to display compassion and empathy. I believe they need to look after my well-being and safety as both a patient and a human being. Treatment is not just about medication. I feel they need a good understanding of the diagnosis in order to avoid apparent misinformed assumptions.