redefining healing – Our Happy Notes

Mad Liberation: The Missing Piece of The Puzzle

Posted on May 19, 2023 by Millie :)

There are a lot of social movements now that are gaining awareness and support in new ways thanks to the global communication the internet has made possible. For example, feminism, Black Lives Matter, climate activism etc. And it’s very encouraging to see that more people are becoming aware of how these all link together too. There’s still a very very long way to go, that’s for sure, and in some ways the enormity can seem overwhelming. But there’s certainly movement happening in these movements, and a lot of passion. But what about mental health?

When we think of the mental health movement we think of mental health awareness. And for the vast majority of people what they come in contact with under ‘mental health awareness’ is hotline numbers, slogans telling people to reach out, self care tips, and really very repetitive, surface level approaches. The general public does not seem to be aware of the deep issues and abuses in psychiatry, how we view mental health, and how it really impacts all of our lives. In all the fighting for a better future, mad liberation is overlooked, underestimated, misunderstood, or ignored. And that’s damaging for all of us. We cannot be fighting for racial justice, trans rights, and human rights without mad liberation. And yet so few people seem to be aware of it – in fact many people seem scared to approach the topic, which just shows how deeply the stigma and ignorance runs. Maybe, just maybe, mad liberation is the missing piece in the social justice fight.

Take for example the language we use to describe other social movements – you are a climate activist, a civil rights activist, a human rights activist, but you are a mental health advocate. That’s not to say advocate is a bad word, it is absolutely not, and it’s a badge I’m proud to wear. But to call myself a mental health ‘activist’ sounds wrong. Why? Is it because advocacy feels more acceptable? Perhaps it connotes simply raising awareness within the status quo, continuing to adhere to systems already in place rather than radically opposing them and fighting for change. Maybe not, but I certainly think there’s something in the language.

Furthermore, why is it always mental health advocate, and rarely mental illness advocate, or madness advocate? For me that sums up the major narrative surrounding the mental health movement, because it focuses on the palatable part that challenges less assumptions and less people, that appeals to everyone. Everyone has mental health, so everyone should care about mental health! Yeah – that’s not wrong. But a lot of people are deemed mentally ill. A lot of people deal with the consequences of madness in this society their entire lives. And the narrative focusing on the easily digestible, easily implemented parts of mental health awareness leaves them behind yet again. It silences and harms them.

Psychiatry uses mental illness to uphold societal values. Always has. That’s why drapetomania was a proposed mental illness to explain why slaves wanted to escape slavery. That’s why being gay was classified as a mental illness until 1990, and being trans was classified a mental illness until 2019. And that is why one of the major diagnostic criteria for mental illness nowadays is disruption to a person’s ability to work – productivity and fitting into expectations of normality are societal values.

But people are very rarely encouraged to consider this. They are encouraged to be aware of the signs of common mental illness in the context of deriving from the expectations placed upon us, and recovery in the context of making people be productive citizens again. The common mental health awareness narrative traps us. It does not allow us to redefine healing, to discover the socioeconomic factors in wellbeing, to find community, or to change the pace at which we live. It does not allow us to think about the deeper questions of why, and how can this really be better.

But what would happen if we questioned? We would hear the voices of psychiatric survivors shouting about the abuse they have endured in the mental health system. We would discover how mental illness and criminalisation are deeply intertwined, and perhaps discover how to create true justice by supporting and liberating people in new ways. We would start to ask, what would happen if we didn’t sedate people into the same reality, but rather found ways to help people incorporate their own reality into their world? We would find new ways of sharing resources, kindness, connection, and changing the pace at which we live. We would find new language to define our human experience. We would free all of us to actually consider what happiness entails. Finally, we would find the link to all the other socioeconomic problems we are facing today, and in doing so find new solutions and progress towards all of them.

We need to be kind and we need to be supportive, but we don’t need to be afraid to really ask questions about mental health, its presentation, and the treatment of madness as it is. Mental health activism is needed. Mad liberation is needed. But a deep held belief that mad people need protecting – or being protected from – has too often tried to stifle the missing piece in social justice movements. Mad people deserve to be heard, believed, and treated with respect and dignity in social action spaces just like anyone else.

So I ask the question – is mad liberation the missing piece?

Maybe. I don’t know for sure. But I think it might be. I certainly think solidarity between oppressed, hurting, and caring people is necessary for progress. We won’t fix everything; we will get things wrong. But as long as we keep questioning, and keep learning, we can make a difference. It’s worth a try at the very least.

Advocacy, Managing Mental Health, Mental Health

Reframing Healing

Posted on March 13, 2023March 12, 2023 by Millie :)

We receive a lot of messages, consciously and subconsciously, about what healing is. I have my own opinions, some of which will be evident in this post, but I think one of the most important things to keep in mind is what does healing mean to you? There may be limitations to our ideas of a dream life, because we don’t live in a vacuum, but only you get to decide what your healing actually means and looks like. Unfortunately it’s something that is quite overlooked in a lot of mental health spaces, and we’re not often encouraged to really define it for ourselves. But that doesn’t mean we can’t.

Personally, an important part in redefining healing for myself has been understanding what I’ve been taught about healing. A lot of what I’ve learnt is to see ‘getting better’ as this hyper-individualistic thing. We’re told that ‘getting better’ is about becoming a productive member of society again, going back to work full time, having more output, and living up to the expectations placed on us. A lot of therapy is often about this idea – it’s about mitigating the factors that get in the way of productivity rather than fostering genuine happiness. The idea of compliance and non-compliance in the mental health system is a huge part of reinforcing this and getting in the way of anyone who needs to stop and question whether this striving for efficiency under societal norms is actually what they need.

We don’t live in a vacuum, so I think it’s only logical to suggest that we don’t heal in a vacuum either. And yes it is possible to have personal peace without those around you experiencing the same, but that’s not to say our healing is entirely individual. We are connected; we are even a part of nature. When bears hibernate or trees shed their leaves we don’t look at them and say they should be doing more, they should be doing better; we understand that they are in a season of their life. Yet we so often fail to extend this same understanding and grace to ourselves. We are a part of nature too, and so we are connected to those around us and every part of the world around us. It is only logical to think we should lean into this connection and these seasons to find peace. So I would say healing is community. Healing is working together. Not in order to fix or mend one broken individual, but to recognise what in our living, breathing system of life contributed to their pain in the first place, and to heal all of us. I’ve found that when I am held by a community, only then am I able to find my own inner peace.

We also seem to see healing as this end destination – we arrive at ‘healed’ and then we continue there as before… until maybe we need to be healed again. But I don’t see it like this. Healing is an ongoing, every day process for me. Just like I see myself as a continually ‘recovering’ alcoholic, I also see myself as a continually ‘healing’ person. Partly because there are new challenges to life every day; partly because I have chronic mental illness; and partly because I see healing in a larger sense too, one of societal healing. That can be hard to conceive sometimes, or to not get wrapped up in. But I see it as a source of hope rather than a drain of hope. A source of power. That healing, as an ongoing, everyday practice, also means trying to help others and be connected with their struggles. Trying to learn how we can all work together to do better, to build better infrastructure, to break the chains and patterns of the past, to move forwards.

So what does healing mean to you? Does healing mean connection? Does healing mean going back to the life you had before? Or is that just the easiest life to imagine? Does healing mean productivity, or does it mean inner happiness and peace? What do you need to see that realised? Is healing individual, or collective, or aided by the collective? Is healing a destination or a journey?

I’m not saying there’s one right way to redefine healing. It is personal in how it manifests in our lives, but the very fact that so many out there are healing and recovering shows that while it is personal, it is not individual. And I think the mental health system needs to recognise that too.

Sending all of my love and support to you today xxx

Glowing fluorescent blue triangles in a pattern

Advocacy, Mental Health, therapy

Issues with IAPT

Posted on February 24, 2023February 23, 2023 by Millie :)

Disclaimer: Before I dive into the issues with IAPT I just want to clarify that this blog is in no way intended to discredit anyone’s positive experience with IAPT or discourage anyone from using the service. IAPT could still be a piece in the puzzle of helping you find the right support. I am purely highlighting issues that some people face because everyone deserves to have a positive experience of mental health care – if the mental health system can’t adapt to different needs, then it needs to change. This post is about raising awareness of the gaps within that system, and the plaster solution that IAPT has become. Because we all deserve better – it could be you or any of your loved ones needing a more comprehensive, long term and personal care plan. And I would hope that the door was always wide open for you to receive the support you need.

With that said, let me give you an introduction to what IAPT is. IAPT stands for Improving Access to Psychological Therapies. If you are an adult and go to the doctor with a mental health concern, you are likely to be referred to this service as one of the first ports of call. It was rolled out in 2006 and there are now around 220 IAPT services in the UK. It offers patients a limited number (usually 6, up to 12) of sessions with a counsellor using CBT – Cognitive Behaviour Therapy. And it’s true that rolling out this service greatly reduced the 8-12 month waiting time for psychological therapy in 2005, which is great, but that doesn’t mean it provides a greater level of care.

So let’s look at the information I’ve just noted. CBT focuses on changing thought patterns and behaviours of individuals – which by definition is not suitable for anyone who’s mental health is being impacted by the situation they are in. It’s true that CBT skills can be incredibly useful in helping us cope with day to day life, giving us the tools to reframe our experience so it becomes bearable and our thoughts less consuming. But that doesn’t mean it’s perfect by any means, nor suitable for everyone. For example many autistic people have likened the approach of CBT to gaslighting; it just isn’t suitable for application with neurodiverse thought patterns in many. For many others too it simply doesn’t provide the all round support they need – the therapy sessions are not designed to hold space for the person, explore route causes that will continue to be present, or brainstorm ways to change the situation they are in. It can provide people with a quick fix to a singular problem, but lacks a long term approach.

However, it’s the only framework offered with IAPT, already excluding many from the help they need. Especially because if someone goes through with IAPT treatment they may be seen as already having support and having to face longer waiting times; likewise if they refuse to continue this raises the issue of non-compliance. Non-compliance is a complicated label used in the mental health system sometimes that essentially labels patients as unwilling to try and help themselves and makes it harder for them to access support, simply because the support they refused was not suitable or accessible to them. This is a systematic issue of not providing individualised care, but instead it is labelled as a personal fault and the burden is borne by the individual.

Even for the people CBT framework does suit, the IAPT programme offers such limited sessions that it’s arguable how much long term support and healing they actually offer. 6 sessions is simply not enough in my eyes. What about the people with more complex issues? The people that learn slower? The people that need time to build a secure relationship with a therapist before they feel confident to start working with them? They are all being left behind by the existing IAPT service.

None of this is surprising when we look at the roots of how the IAPT service came to be. In 2005 Lord Layard – an economist by trade addressing the economic costs incurred due to mental health crisis – and David Clark – a professor of psychology championing CBT – pitched their idea for IAPT to a board room full of government officials. They pitched it through the economic benefits that providing a cheap service that got people back to work could reap, easing the £12 billion cost of depression each year. Though I understand why so often proposals have to be pitched through an economic lens rather than a moral or social one, I do think it’s very sad. And I think in many ways shows why this system isn’t working. We’re approaching the issue of the mental health crisis wrong if we’re approaching it from a perspective of getting people back to work. Mental health doesn’t exist in a vacuum and is deeply intertwined with all aspects of society which we cannot simply ignore addressing when looking to help mental health. Furthermore, healing is not actually about productivity – this is considering healing through the eyes of someone else looking in on a life trying to define quantifiable proof of them getting better in a way that is palatable to society. Healing is internal and personal; our current mental health system does not recognise or allow space for this in our society.

Nonetheless IAPT was heralded as an astounding success in the mental health sector worldwide for its quick rollout and wide reach. But in 2010 Dr Micheal Scott – a clinical psychologist at the University of Manchester – began to question the success of IAPT when assessing its patients. He was hearing many stories of patients with bad experiences of the programme who found it useless, dropped out, or pretended to be better to make it end quicker. He decided he needed to look further at how the effectiveness of IAPT therapy was being assessed in order to discover if it was really as great as it was claimed to be.

The first thing of interest he discovered was that IAPT was responsible for collecting all the data on its own performance – there were no external reviews or assessments taking place. I think many of us will know that this is a bad scientific practice for collecting and understanding data – there should always be peer reviews. So he conducted an assessment to discover the true recovery rates.

He began by reviewing the cases of 65 people. I’ll admit that’s not a lot, but stick with me here. Scott used various procedures for a robust review including in-depth interviews, diagnostic assessments, and evaluating medical records. His results showed that no matter the condition, only 16% could be considered as recovering. This is woefully below the 46% reported by IAPT themselves – and with good reason. IAPT’s method of assessing recovery rates only included those that completed treatment with them and neglected to count the half of patients who dropped out of treatment. The fact that half of patients drop out of treatment at all is a huge indicator that the programme is failing anyway, but the correct way to conduct research would be to include them in the data. By omitting them IAPT are artificially increasing their recovery rate. I would also add here that even their self-proclaimed 46% could be much higher with proper individualised, socio-culturally aware treatment plans.

Scott’s admittedly small study isn’t the only one either. The University of Chester’s larger study found a 23% recovery rate, still much lower than IAPT’s claim. And that’s before even considering what IAPT deems recovery to mean. I’ve already explained that IAPT was built around the idea of getting people back to work, and so it’s unsurprising that the programme focuses on getting people back to what are viewed as functioning members of society rather than personally happy with their healing journey.

This is seen reflected in how IAPT reviews patients progress. At the start of the therapy questionnaires are conducted that rate how depressed or anxious you are, and then again at the end of the therapy. If at the end of the therapy you score lower you are considered to have improved. If you scored just above the clinical threshold for depression at the start of the therapy (let’s say the threshold is 10 and you scored 11) and by the end of the therapy you score just below (let’s say 9) then you are considered recovered by IAPT. But in reality you’ve only dropped 2 points and are likely still experiencing emotional complications in your life! They’re now just not considered inconvenient enough to others to be clinically notable, but that doesn’t mean they aren’t hugely significant to you. You might not feel ‘recovered’ at all. And the scale is really sensitive anyway – you can move around 5-7 points simply by sleeping and concentrating a little better.

Furthermore , IAPT doesn’t even conduct a control group meaning there’s no way to know if the 23% ‘recovering’ would have improved slightly without IAPT at all. In fact a recent meta-analysis (meaning examination of lots of data from different individual studies) showed that a total 23% of people suffering with depression spontaneously overcame their symptoms within three months without receiving any treatment. Which aligns with the 23% recovering from IAPT exactly, suggesting that the service is totally irrelevant. Yet it is often the only service offered to those struggling, many of whom will continue to struggle unsupported. Real lives are in the balance, and the system is trying to stick a plaster over the issue that doesn’t even work.

This doesn’t even begin to touch on the deep issues for workers within the IAPT services, who are struggling hugely themselves and being crushed under a culture of form filling and goal hitting heralded above actually providing support. An ex-IAPT lead said, in an interview with James Davies: “To hit the waiting list targets we’d offer people some minor intervention but it was not what they really needed – it was what we could offer to get higher results”. And there lies the problem in a nutshell – people are not being offered the help they so desperately need. And how could they in a system that values goals, productivity and economy above people’s lives? How could they in a system that is built on societal expectations, harm, and conformity? How could they in a system that isn’t working to face the deep intersectional issues of the day? How could they in a system that is underfunded and in desperate need of reform?

I recognise that criticising the mental health system is a complicated thing to do, because it’s where we hope to find help. But the reality is that it falls short. I do have hope it can improve; I have hope in our communities and our efforts to see better care. And I do know that despite a failing system people can recover – by their own standards – and live bright lives. But I know too it shouldn’t be so hard to get support, for anyone.

So here are some calls to action! What you can do to help:

Most of the information in this post comes from James Davies’ book ‘Sedated: How Modern Capitalism Created Our Mental Health Crisis’. I would recommend that everyone read this book to educate themselves further
Sign up to Mind’s newsletter to find out about their campaigns for better mental health care
Write to your MP about the failing mental health system and demand care that is individually tailored, socio-culturally aware, and focuses on personal healing not productivity
Share this post and have conversations with people in your life about the mental health system – all change starts with a conversation

Thank you so much for reading! Please let me know any thoughts or questions you have in the comments below. Sending so much love and support to you all today 🙂

Sources:

https://www.nice.org.uk/about/what-we-do/our-programmes/nice-advice/iapt#:~:text=What%20is%20IAPT%3F,with%20anxiety%20disorders%20and%20depression.

‘Sedated: How Modern Capitalism Created Our Mental Health Crisis’ by James Davies

https://www.madinamerica.com/2022/06/uk-iapt-abject-failure/#:~:text=We%20identified%20a%20series%20of,of%20misdiagnosis%20and%20inappropriate%20treatment.

Layard, Richard (2005), ‘Mental Health: britain’s biggest social problem?’, paper presented at No. 10 strategy unit seminar on mental health, 20 January 2005

https://www.mind.org.uk/information-support/drugs-and-treatments/talking-therapy-and-counselling/cognitive-behavioural-therapy-cbt/

Griffith, Steve, Steen and Scott (2013), ‘Improving access to psychological therapies (IAPT) programme: setting key performance indicators in a more robust context: A new perspective’

Whitford, H et al, (2012), ‘Estimating remission from untreated major depression: a systematic review and meta-analysis’