What do I expect? Better than this – the NHS complaints system

You may have heard about some of my experiences with the mental health act already. I wrote about it when I was sectioned in 2018 for 5 months after losing a friend to addiction. What most people didn’t know at the time is that that was the 7th time I had lost someone to addiction, after battling an addiction myself.

This was the first time I was sectioned, although I’d had multiple informal admissions as a teenager. My impression of the Mental Health Act was that it served a purpose, and that it was there to hold people when they weren’t safe. And that’s what it did do for me at the time – in some ways.

However, my story didn’t end there, and neither did my experiences with the Mental Health Act, in some ways, it was just the beginning…

The next time I was sectioned was September 2019. I had just visited Amsterdam after being sober for a while, and I had forgotten how much I loved the escape of being high. What followed was me relapsing with my addiction. I was assaulted. And I fell apart. I was placed on a section 2. I was diagnosed with paranoid schizophrenia and discharged within a month.

In 2020 I was sectioned 4 times. All under my local trust, who is supposedly one of the best.

In January 2020 I was placed under a section 2 then sent to an acute female only ward. Within 10 minutes of arriving I was called to see the consultant. He said to me that people with my condition don’t experience “real” psychosis, and that the voices I hear are “pseudo hallucinations”. I questioned him, mentioned my recent paranoid schizophrenia diagnosis, and he said that because it was a different trust, it wasn’t on the notes. I was reminded like a stab in the neck that my diagnosis was “EUPD” and that we don’t need hospital treatment, we need therapy to correct our emotional responses. At this point I wrote a letter to the staff, handed it to them and asked them to log this as a formal complaint… they assured me they would, but I haven’t heard since about any of my concerns.

Soon after this experience, my primary diagnosis changed to schizoaffective disorder, and the focus of my treatment went from therapy and responsibility to medication and cannabis use. 2020, for a lot of us – was rough. My stays in hospital were usually about a week long. I stop taking my meds, I go in, they give me meds, I sleep for a couple days and I go home.

Throughout all of this, my brother has been in inpatient care (except about 2/3 weeks) since August 2018, where he still is at the time of writing this. I know he’s had a horrible experience, so I asked him if I could write a bit about his time in CAMHS inpatient wards, acute wards, PICU’s and tier 4 placements.

“Being sectioned is misused because they can force you to do things that aren’t to do with your mental health, such as taking devices off you at certain times to encourage sleep. They basically say they can do anything to you in the name of treatment for your mental health but taking away an iPad at 11pm isn’t is it?”

“Even though staff are trained to restrain, they don’t use their training. I was once sat on and straddled in order to do a blood test. They don’t restrain informal people like that”

“It makes me feel like I have no rights, like I am in prison, like I am not human, like I’m not worth anything, like I cannot make my own choices as an adult, like the nurses are my parents when they are just nurses”

Complaints system

I made my first complaint to my local trust on 27/5/2020, in regards to my brother’s care. He has a diagnosis of EUPD amongst other things but this diagnosis has led to him being told time and time again that the voices he hears aren’t real. This is one of the core issues. I sent it via email to the CQC, our MP, and the complaints department. I received an email within 2 hours from the complaints department saying “we take your concerns seriously” and that (because of Covid) “this may impact on our ability to provide you with a response to your concerns within our normal timescales”.

The next day I received a call from a clinical director of inpatient services, who asked me more about my concerns, I told him about how my brother is unsafe and the staff are holding him under section 3, using restraint and IM on a daily basis (at that point), and dismissing his experiences as not real. I then received a letter via email on 6/6/2020 explaining that 3 consultants people agree that my brother has EUPD, I was told that there is no evidence that people with EUPD experience less subjective distress and they were sorry that my brother felt his voices weren’t recognised and that they’d discuss with the director of nursing re training (still haven’t heard anything to this day about that). They apologised that my brother was able to self-harm, and that the consultant would ‘reflect’ on their attitudes.

I sent an email on 16th September to ask for the final response, however no one replied and to this day we haven’t heard what the final outcome of that complaint was.

I then sent another formal complaint on 30/11/2020, again regarding my brother’s care. This time he was physically attacked by a member of staff, and made to wear a dirty anti-ligature dress on a female only PICU as a Trans man. I was told again that my concerns would be taken seriously and they’d respond as soon as they can. I also wrote about this experience on twitter, and even the CEO of the trust DM’d me on Twitter. I spoke to executive management who said they had to undertake an investigation with a deadline of 23rd Dec 2020. She called me in March 2021 to apologise that I hadn’t received a report yet and that I should get it soon. As of writing this I still haven’t had a formal response.

Finally, I complained about my own care in January 2021. This was because I went to A&E in distress, needing help. The exact words I got were “what do you expect”. I got sent home. I then relapsed with my addiction and experienced a trauma. Returning to A&E I begged for help, and was told that because I wasn’t sectionable and I had drugs in my system, that there’s nothing they can do. I also haven’t heard anything back from this complaint.

Summary

My impression of the Mental Health Act now is that it’s something mental health professionals can use to have power over people, depending on whether they believe that person deserves it, or is sober enough, or has lost enough capacity that they qualify as “psychotic”. Otherwise you’re a PD who needs to take responsibility. And, like my brother, if you are a ‘PD’ and they use the mental health act, you realise that it’s not about care or treatment, it’s about compliance and being quiet.

We are complex people living complex lives – don’t minimise us to a disorder.


The Mental Health Act White Paper

The Mental Health Act 1983 is a piece of legislation in England and Wales setting out when and how people can be detained (“held under section” or “sectioned”) and hospitalised for mental health treatment, even if it is against their wishes.

In 2017, an independent review of the Mental Health Act was announced, intending to address concerns about the rising number of detentions and disproportionate number of people from racialised communities being detained under the Act. It concluded in 2018 and you can read the report here.

In January 2021 the government released a White Paper on the Mental Health Act, setting out their proposals for future legislation based on recommendations made in the review. It is now open to a public, online consultation until the 21st April. You can read NSUN’s initial response here. After the consultation closes, final policy decisions will be made and a revised Bill will be released, “when Parliamentary time allows”.

The consultation is in the form of a long survey, and it is worth noting that you do not need to answer all of the questions. Depending on how much you know about the Act, it might be helpful to read more about the Act before you respond – for example, you can read Rethink Mental Illness’ resource on the Mental Health Act or their page on responding to the consultation here.

You can also watch NSUN’s Q&A webinar on the Mental Health Act White Paper.

Nikki’s blog talks about an imbalance of power, as well as the experience of trying to complain about your treatment under the Mental Health Act, something not examined in a huge amount of detail by the Mental Health Act White Paper. You can find their response to some of the proposals on complaints made in the Review in “Part 3: The government’s response to the Independent Review of the Mental Health Act” within the White Paper.

You can share your thoughts and experiences directly with the online consultation, or you can email us (by the 16th April) so we can include your views in our response, which we will publish.