"Disempowered by the lack of information"

Brought here by the twitter chat about SUN meetings and how the Leeds and York Trust does not listen or provide enough information.

I do not believe staff have bad intentions but the lack of information creates a them and us divide.

My story begins when my GP made the referral. My GP said it would be to see a psychiatrist at Malham House in 2 weeks. I consented to this referral and waited.

Later that day I received a call from someone at the Crisis team. This being my first encounter with mental health services, I had no idea what a Crisis team was. The name was alarming. I asked who they were and why they called. They said I consented to contact from them, and the SPA service felt I needed an urgent assessment and I should come to the CAU. I could not consent to a Crisis team referral because my GP never mentioned this.

I dutifully went to the Becklin Centre and spoke to 2 people for an hour. They let me go home but said I had to stay in Leeds. This was my first term in university, I felt awful, I saw my GP hoping for help, and I ended up being cut off from my family.

You may not lock people away in asylums anymore, but not giving me options of which services I use is just the same.

When my dad went for prostrate screening he was given a leaflet that explained each step in the process. I should have been told I was being referred to the SPA service who would then decide where I go. Consent needs to be informed, I was not given enough information in order to consent to that referral. Why are you not giving GP’s guidance on what to tell patients at referral?

Why don’t you have leaflets for patients who are referred? A leaflet should explain all the abbreviations. I was new to the mental health system and everyone spoke in abbreviations.

After the CAU nothing happened for two days then I received a call from ICS (another abbreviation no one bothered to explain.) They said they had to visit in the next 2 days. I explained it was almost the weekend wanted to go home. They said that I had to see them soon, and if I went home they would discharge me.

I stayed, they spoke to me for 30 min. That 30min cost to me, I missed my sisters 16th birthday, a weekend with my loving family, and unlimited time talking to my mum.

ICS said they would sent me to a CMHT..they didn’t say what this was, who I would see, or what CMHT it would be.

Overall this lack of information, has left me feeling vulnerable and powerless. I never knew what was happening or why I was being passed from department to department.

I also have diabetes and with my diabetes care staff explain everything helping me to understand why things are done, what is next, and what my options are. I feel empowered with my diabetes care.

I thought medicine was moving away from a paternalistic approach and moving towards giving patients more autonomy.

I feel powerless, like I am at the mercy of staff who are captors and prison guards. They know what happens, and I don’t. I don’t even get choices!