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09 Aug 2022, by Jessica

42 ideas to improve life for people with severe mental illness

Jessica, a writer with schizoaffective disorder, shares some of her ideas for improving the lives of people with lived experience of psychosis and SMI based on her own experiences.

There’s a lot of talk about improving life for people with mental illness but not a lot of suggestions aside from better funding of mental health services and social care which would be the ideal. I’ve brainstormed to come up with some ideas based on my lived experience of living with psychosis of things that I feel could help improve the lives of people with SMI, in particular psychosis, based on my lived experience of schizoaffective disorder.

1) The Mental Health Academy

We should create courses for people with severe mental illness so they can become experts in their own illnesses. From side-effects of meds to the clinical names for conditions, we need to treat service users as though they have agency and can advocate for their own care where possible. We are the experts in our own illnesses!

2) Psychosis Audit

During psychosis people often see “signs” and hidden meaning in the world around them (delusions of reference). It would be helpful if the NHS did an audit of common signs in hospitals and removed these items where possible, including art which can be very triggering for people going through psychosis.

3) Social groups

People with severe mental illnesses such as schizophrenia are often isolated. Social groups aimed specifically at this group would help them better relate to their symptoms and give them a social network for support. General groups for mental health can make people with psychosis feel like they are “too ill to share” and risks making them feel marginalised – and i say this from previous experience of these mental health groups. From art therapy groups to stand-up comedy groups for mental health, more social groups could change lives of people with severe mental illness.

4) Advocacy packs

Advocacy packs for people with severe mental illness so they can become champions of mental illness knowledge. From leaflets to stickers, and even t-shirts, creating advocacy packs could help people spread information about mental illness to those in their life as well as the people they meet along the way. Helping us all become advocates for our own conditions.

5) A discount card for people on benefits

We have this capitalist idea embedded in our consciousness that companies should not do anything to support our most vulnerable. We offer discount cards for students and other groups but we should really offer discount cards for people on benefits and disability benefits who often need to stretch their benefits to cover their costs.

6) Review site for mental illness services and hospitals

We need more transparency when it comes to mental health services and feedback. An anonymous site where people could review mental health services and hospital stays would help give us this transparency that we need to work to improve services.

7) Feedback site for benefits

We need anonymous reviews of the benefits system so that we can call out bad behaviour by the DWP. So people can really have their voices heard and so newspapers can find real case studies of people’s experiences to include in articles to support the argument for a more compassionate system.

8) A union for benefits claimants

There should be a union for benefits and pension payments. We deserve to have our voices heard and be treated well. Chronically ill people should not be treated as “scroungers” and should have more access to information to help support them through appeals. Even just giving people a list of rules when they signed up to benefits would help improve the current system.

9) Tech use during psychosis

An advance directive about tech use based on individuals wishes should be in place. Using your phone during psychosis can be extremely embarrassing, from calling 999 to tell them about the conspiracy to posting on LinkedIn that you’ve been kidnapped by Extinction Rebellion. I would prefer that they just kept all technology away from me when I’m sectioned. I know this is different for each person, but I imagine this is an issue that’s very important to a lot of people with psychotic illnesses.

10) Transparent Treatment

There should be laws dictating that people are always told their diagnosis. I know from personal experience that this is not always the case. We are often an afterthought in our own care so they should legally be obliged to tell us our diagnosis.

11) Teach mental illness and neurodiversity in schools

When I first went through psychosis I didn’t really know what it was. My impression was built from films like A Beautiful Mind. We need to have better education in place so people stop relying on the often stigmatising narrative in TV and film for their mental health knowledge. We need people to be able to recognise psychotic symptoms, so they can get support. Teaching about mental health issues and neurodiverse conditions in schools could help change the narrative for the next generation.

12) Meal boxes for mental illness

Hello Fresh or similar should offer a meal box tailored to the ideal diet for someone with schizophrenia or depression and offer these boxes at reduced prices. Advice recommends things such as a high fish diet, but often this is too expensive and complex for people with psychosis to put into place. We need support to help us maintain a diet that helps reduce symptoms.

13) Hobby kits

A service delivering hobby kits for people too ill to work would help give people with severe mental illness purpose in their day. When you’re off work due to mental illness time can seem to go on forever and benefits don’t always stretch very far. This can leave us with little to do to pass the time.

14) Day hospitals

There should be places people can go to spend the day rather than sitting at home alone with their thoughts. Now the majority of people are cared for in the community, they end up isolated at home and rarely meet other people with SMI.

15) A buddy system

Early intervention services should provide a buddy or mentor with personal experience of the illness to help guide you through your own experiences. This could be life-changing for people with SMI to have someone who understands their experiences to give them support.

16) Adopt a brain

More and more GoFundMe campaigns are popping up for therapy. There should be a campaign where people can donate to sponsor someone through therapy whether it be DBT or art therapy – they could even get a cuddly toy brain to mark their support or paintings produced as part of the therapy.

17) Media guidelines

Mental health blogging is one thing, but blogging about your own experiences of mental illness is another. We need guidelines for mental illness bloggers for the best practice of negotiating this space and resources so they know where to direct people in crisis or who need support with benefits applications. There should be guidance on this from mental health charities so bloggers can adhere to best practice when replying to vulnerable people.

18) Vitamins for mental health

Studies show that vitamins such as folic acid (which happens to be low in my own bloods anyway) can help alleviate psychotic symptoms. This should be part of the  NHS treatment plan and available on prescription as well advised my mental health teams (mine have never mentioned the various vitamins that can support your mental health to me).

19) NHS awareness adverts

Recently there’s been a lot of NHS services raising awareness for depression and anxiety. But adverts for awareness of psychotic symptoms could dispel stigma and help save lives. Suicide rates for people with psychosis are sometimes as high as 10%. This is a hugely vulnerable group often completely left out of the mental health conversation. People need to know the signs so that they can get help for friends and family members.

20) More realistic attitudes

In the past, attitudes for the potential outcomes of people with psychotic disorders have been very pessimistic. However, these days optimism from mental health teams can actually go too far and harm people. I for example was encouraged to go back to work and relapsed within just two shifts and had to be hospitalised for a month. We need to manage expectations of what might be possible and avoid over-stretching people because services focus on work as the main recovery outcome.

21) No inspiration porn

No more inspiration porn from charities. show mental illness as it is, not the exceptional people who defy the norm. Who are these stories for anyway? Because they certainly don’t make me, a mentally ill person, feel better about the sorry state of my life. We need more everyday stories of people who are, like the majority, still unable to work and are just doing their best to battle their illness. These people ARE inspiring.

22) Greeting cards for severe mental illness

People hospitalised with severe mental illnesses often get fewer greetings cards than those in hospital for physical conditions. We should come up with a range of greeting cards people can give in these difficult situations to help give them the words to help support their friends and family.

23) Lived approval film rating

We need to do more to tackle inaccurate depictions of psychosis in film. We need a rating to reward accurate portrayals and a database that details accurate and inaccurate portrayals as well as specifically calling out film and TV portrayals that are inaccurate. We need to work to change the dialogue. There could also be a standards authority who ensured that all representations of mental illness and neurodiversity in film were accurate.

24) Clothing collaborations

When I went through psychosis I wanted to find Mad Pride clothing to help me better declare my identity but there was little to no stuff out there. We need more companies willing to sell mental health themed clothing aimed at raising awareness of severe mental illness.

25) Mental Illness Awareness Day

Rather than mental health awareness, we need a mental illness awareness day! The dialogue around mental health needs to raise awareness for people suffering with severe mental illnesses.

26) Sectioned with Care

When you are sectioned it can be a confusing and difficult time. We need care packages including basics like sanitary towels, toothpaste and shampoo for people who are sectioned. The NHS sometimes supply these things, but many people who are going through psychosis believe the staff are in a conspiracy against them and do not ask which can lead to difficult situations.

27) Information about your condition

We should receive leaflets about psychosis when we get diagnosed, or even a book that covers everything you need to know as well as recommended reading lists developed by people with lived experience.

28) World Book Night and similar campaigns

Charities such as world Book Night should work to tackle stigma by offering books like Nathan Filer’s This Book Will Change Your Mind About Mental Health. This would increase knowledge around mental illness and work to tackle stigma.

29) More responsibility resting on employers

Stress can be a trigger for severe mental illness. I know my job was a huge part of my fall into psychosis, but my employer should have not allowed this to happen. They should be legally obliged to implement processes such as a four day week to reduce stress and stop people working hours above and beyond what they are paid for. If they allow or encourage people to overwork they should be financially responsible for the negative outcomes.

30) Change employment tribunal guidelines.

Make employers responsible for stress management. At the moment, it is my understanding that there is a three month limit except in some circumstances for taking your employer to tribunal. People rarely recover from psychosis in three months so the current process is discriminatory for people with severe mental illness.

31) A charity based on lived experience

We need a charity run by people with severe mental illness. We need to help champion lived voices so they can be their own best advocates.

32) Student competitions

A film competition for students that let them explore topics such as mental health would help create a conversation around mental illness and help nurture a new generation of advocates.

33) Paid lived experience roles

The most important voices in the mental health conversation are people with lived experience. Bloggers should be offered paid writer in residence programs by charities to encourage a greater emphasis on the importance of lived experience and give people suffering with these conditions voices to relate to.

34) Early intervention services should last longer

Early intervention services should last for life. At the moment they are not provided to everyone going through psychosis and only last three years. It can feel very lonely when this support disappears and community mental health services are often not specialists in psychosis, meaning that you can feel you are not getting the support you need.

35) Texting your mental health team

Phone calls can be a big problem when you have severe mental illness.You should be able to text your mental health worker to arrange appointments. It is my understanding this is not always the case but would be helpful for many.

36) No bibles in mental health hospitals

In the first mental health hospital I was in, there was a bible in the bedside draw. I picked up and read the first few pages, thinking it was a sign that I must pray and ask God for forgiveness. I’m an atheist and unless someone asks for one, they should not provide bibles in mental health hospitals as people with psychosis are vulnerable to religious delusions.

37) A right to rights

When I was in hospital I googled my rights. I thought I was in a conspiracy at the time, but i was not listened to when i asserted several of these rights. We should be given access to these rights as standard when we are sectioned and staff should receive regular top up training to make sure they have implemented these rights for everyone.

38) The hidden stories

People say that violence during psychosis is not an “excuse”. I wouldn’t call it an excuse, but in many cases, it is an understandable reaction to what it happening to you if you are having persecutory delusions for examples. We need to have a compassionate narrative in the rare cases psychosis overlaps with violence. Although these stories are heartbreaking, we need to help people understand these experiences and why they happen.

39) Thirty top advocates

We need a list of top advocates by a charity featuring people who are changing the conversation around mental illness. This would help reward mental illness bloggers as well as giving people something to aim for with their advocacy and people to follow about their mental illness journeys.

40) More adverts for mental health awareness

The best creative minds in the country are just finding out innovating ways to make people buy more stuff. Pro bono campaigns for mental health charities should be more common. In particular when it comes to mental illness awareness. It’s not enough to just focus on mental health awareness!

41) Change the way we talk about psychosis

The easiest way to explain what psychosis feels like it isn’t saying it’s delusions and hallucinations, it’s saying that you REALLY ARE being followed. Your life REALLY IS a tv show. That’s how it feels. The Truman Show is the closest match to my psychotic experiences that I can find. We need to start explaining it so that people can understand better how it feels to go through these experiences.

42) Reduced cost university courses

There should be reduced cost university courses for disabled people so that they can study when their illness or condition allows. This could help them find new avenues for ways they could work and contribute to society alongside their conditions, for example, by research into their own conditions.

Jessica Oakwood is a journalist and an activist focusing on mental illness and neurodiversity. As well as writing for charities, you can also find her on Twitter @lifeinunreality and on my blog

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