"Not what I expected from an NHS mental health service"

About: Sussex Partnership NHS Foundation Trust / Working age mental health care (community)

(as the patient),

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.

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Response from Andy Porter, Deputy Director of Social Inclusion, Sussex Partnership NHS Foundation Trust

I am very sorry that you have had such a negative experience of our services. I am the Deputy Director responsible for the PALS service and I am very disappointed that you did not find our service helpful.

We have already offered via Patient Opinion to speak to you in person and I would urge you to take up this opportunity so that we can move things on in a more positive way. You have raised a lot of separate issues but it is hard to respond to them without knowing more about the circumstances. I would be very happy to speak to you personally and you can phone me on 01903 845715.

With regards to the mental healthline we have just carried out a detailed review including an evaluation based on telephone interviews with people who have used the line - the responses were very positive - so again I am disappointed that this was not your experience too.

Please do contact me and we can discuss this further.

Andy Porter, Deputy Director Social Inclusion.

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Update posted by Abandonia (the patient)

As you will see from what I wrote, my experience of PALS was entirely negative. I did not find PALS to be at all impartial and in my case they didn't actually DO anything at all.

Additionally, when they asked me questions as part of equal opportunities monitoring they repeatedly refused to accept my sexuality, telling me that the only options were 'hetrosexual' and 'homosexual'. I found this incredibly offensive and narrow-minded - how on earth can this behaviour be condoned?

I do not have any faith in PALS whatsoever and do not see what you will do to acutally rectify the situation and make sure that I get access to suitable out-of-hours support for my needs, that is accessible to me as an autistic individual, or what you will to do make sure the people who treated me badly are disciplined.

The mere fact that you quote the review of the Mentalhealthline and the fact that the responses were positive makes me feel uncomfortable contacting you because I feel that quoting this here, in response to my experience, is a way of invalidating my experience which I find very upsetting. I'd be interested to know how many of the people who responded positively to the survey were autistic with associated learning difficulties and vulnerabilities.

Additionally, the police stated that they way the member of staff at the MentalHealth line treated me was potentially illegal as it was in breach of the Assisting Suicide act - yet because they don't record calls they are conveniently shielded from any possible investigation and prosecution. Where is the protection for the public? Also, they made notes about me and snooped in my records behind my back and with no prior warning which is unacceptable and unless anyone who said they were pleased with the service experienced this exact same betrayal, as nice as it is that they had a positive experience, it is not something that I can relate to or that in any way invalidates, mitigates or excuses the treatment to which I was subjected.

I really think that bringing up positive things about them here is inappropriate and I feel like it is an attempt to make me look bad or like it is just a "one off" and is more about the service and PALS trying to "save face" than any interest in helping me.

PALS had their chance to help me. I feel they let me down. Why is contacting you going to be any different? In my opinion, ultimately PALS are part of the NHS so are not impartial and are not, and never will be, on my side or on the side of any wronged patient.

Response from Andy Porter, Deputy Director of Social Inclusion, Sussex Partnership NHS Foundation Trust

Hello again,

We would like to help but because of the way Patient Opinion is set up we don’t know who you are and so we can’t respond to any of the specific detailed comments that you have made. This means that we can only make general comments about the services we provide in the hope that you or other readers will find this helpful. So please get in touch and then we can look into the concerns that you have raised.

You asked about why contacting me will be different. As a senior manager responsible for the PALS service I am keen to investigate any concerns about any bad practice that arise, and would approach it with an open mind. I can only reiterate my previous offer for you to contact me. You might want to get support from an independent advocacy service, MIND in Brighton and Hove will be able to give the contact for the area in Sussex you require 01273 666950. Or you might consider making a formal compliant by phoning our customer relations service on 01903 843026.

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