"Not what I expected from an NHS mental health service"
About: Sussex Partnership NHS Foundation Trust / Working age mental health care (community) Sussex Partnership NHS Foundation Trust Working age mental health care (community) BN13 3EP
Posted by Abandonia (as ),
Am autistic with mild learning difficulties and multiple non-psychosis mental health issues.
Frequently feel distressed and have been suicidal a lot. There used to be excellent out of hours service for mental health called the Duty Team who you could call on a mobile number.
About 2 years ago this was scrapped and replaced with the Sussex Mentalhealth line. I feel they are abysmal. Unlike the duty team, they have no powers to refer you to a psychiatrist if you need urgent help or even contact your care co-ordinator. In my experience, they have been useless. They seem to be essentially an extension of the Samaritans but in my opinion, a lot worse!
When I phoned them about work difficulties, in my view the person immediately proceeded to say that disabled people didn't deserve to have good jobs (regardless of experience and qualifications) and if we expect to have anything more than a minimum-wage job then we were being naive and deserved to be mistreated at work. I felt they also condoned the bullying and mistreatment I had experienced at work.
Essentially, I felt they were prejudiced against disabled people and I felt they were suggesting that everything was my fault for being disabled and that if I wanted to commit suicide, that was my problem.
Needless to say I was extremely distressed and this is not what I expected from an NHS mental health service.
I tried calling other services (as I was trying to "reach out" which is surely what you're supposed to do when you're suicidal????) like the out of hours GP service and NHS direct but the way the person spoke to me implied that they also felt that if I wanted to commit suicide then to go ahead with it.
I feel that no-one was interested in helping me. I tried calling the Senior Nurse Practitioner who is the person who admits people who are severely mentally ill as I knew I needed to be admitted, but in my opinion they were also useless and said they were too busy to help and put the phone down.
On a later occasion, this person asked me "are you in crisis?". I explained that due to autism and learning difficulties I can't understand abstract concepts so please could they explain what "in crisis" meant. They ignored me and said to call back when I was "in crisis". Well how can I when I don't know what it means????
I was told to go to A&E but due to my sensory hypersensitivities because of my autism, there is no way I could cope at A&E and they make no provision for this. Going to A&E would be far to distressing for me and even though A&E staff have admitted that they know this is a problem, I don’t know of anyone having done anything about it. I thought of trying to go anyway and getting my bf to support me but was put off by something I read.
I've tried calling social services out of hours line too when I've been suicidal but they just bounce me back to mental health and in my view the people I’ve spoken to have been very mean.
So I still have no out-of-hours support despite the fact that I'm no less disabled out of hours then I am during office hours! I am too afraid to even try to call any of the relevant out of hours numbers as I'm scared they'll just bully me again.
The default way of treating people with autism and mental health issues in our area seems to be to treat us like a nuisance and I feel I’ve been bullied. Seriously, I feel that's all that out of hours services do. It's disgusting but I don’t feel anything changes, no-one seems to do anything about it.
And in my view PALS is a waste of public money. I called them about the bullying and A&E issues. Well, firstly I had to speak to 2 different branches of PALS. One supported the MentalHealth line, even though there was no evidence (as they don't record calls) and they only spoke to the Manager of the MentalHealth line who wasn't even present in the office during the call!
The person I spoke to at PALS then said that I had to phone the Manager of the MentalHealthline to discuss the issues even though I'd made clear I was too terrified to contact them after what I felt was bullying and wanted nothing to do with them. PALS refused to help even though their website specifically says they will liaise and advocate on your behalf! This person also said that I would have to make a complaint (which I didn't know how to do due to learning difficulties) and they then said that was my problem and they couldn't help me - but the PALS website specifically says they DO help people with the complaints process.
The only people who helped were the police and they confirmed that if someone from a helpline did behave in a way that is likely to drive a suicidal person to be more likely to commit suicide or harm themselves that is illegal under the Assisting Suicide act but there was nothing I could do as the MentalHealth line don't record calls so I had no protection or proof of the way they had dealt with me.
As for the other PAL service who were supposed to be speaking to A&E about how to make it accessible for autistic individuals, they never called me back. I chased them up about a month after my first call and they said they'd get back to me but months later they haven't and I doubt they will.
In my experience, I feel that being autistic and mentally ill has meant that I have experienced bullying from mental health services. I feel that there is no way for us to protect ourselves. And I feel the PALS staff I have spoken to have been biased and useless and have refused to do the things their service is supposed to do. In my opinion, they're an extension of what I feel to be the bad treatment of vulnerable autistic and mentally ill adults in this area.