Mental health strategy for England: where do you stand?

The government announced last month that it is developing a 10-year mental health strategy. A call for evidence has been made, closing 10th July, inviting responses from anybody who wishes to contribute. They are expecting responses from services, organisations, professionals - but also people who have used services, who might use services, and other members of the public.

Should we get our hopes up?

This has the potential to be quite an exciting turning point for action on mental health in the UK. Most of our major mental health charities and organisations have, while celebrating the announcement, brought attention to how overdue this is - and with good reason - but nevertheless, the framing of the strategy encourages us that this does not seem to be intended as yet another sticking plaster.

The focus on transforming our mental health service from one that “responds late and through diagnosis, to one that responds earlier [and] more proportionately” is, from our experiences and observations, definitely the right place to start. Complex post-traumatic stress disorder - which results from long-term, interpersonal trauma, and has distinct and more pervasive symptoms from post-traumatic stress from single events - has only been a recognised diagnosis since 2022, and still isn't in many clinicians’ minds. This being the most common type of trauma we encounter in our community, we see all the time how inappropriate diagnoses, or no diagnosis at all, can bar people from the right or any support, no matter how great the need. Some of us are alright with the “disorder” label, others of us find it pathologising - we all deserve help.

The recognition of the need for cross-government working to navigate the impact of adverse circumstances (such as homelessness or domestic abuse) or overlooked identities (such as being young or racialised) on mental health presentations is of course close to our hearts as well. Trauma survivors know better than anyone else that mental health doesn't exist in a vacuum. Too many of us have been made to believe that we are beyond help because our mental health presentation is being judged without regard for our circumstances, have fallen needlessly into dire socio-economic straits because services haven't been able to respond to social and health care needs in tandem, and/or have been so badly retraumatised by all of the above that we end up needing further help to heal from the help we did or didn't get. The cost to our economy and society of compromising the potential of so many people with so much to give, let alone the human cost, is a disgrace, and needs urgent attention.

But what counts as 'evidence'?

It's great to see the assurance given that people with lived experience of mental health struggles will be at the heart of the research. Looking at the questions being asked, though, we wondered how many people like us might feel able to respond to the 'call for evidence'.

Almost every question asks the respondent to provide examples of “effective” and/or “innovative” practice, with some asking for which approaches have the “strongest evidence” of working well.

But what if the only examples you have are those of your own experience - and maybe that of the people around you?

What if the only “evidence” you have that something works (for some) is that you yourself are still alive?

What if you don’t think you’ve ever had the treatment you would want to have, but think you know what you would like it to look like, based on what hasn’t worked before: is that still ‘evidence’?

A sharp reminder

The response when we brought some of the questions from the call for evidence into our core group session this month was fascinating. Within just a few minutes, someone spoke up and said they didn’t think we should be responding at all - because they and others felt that as ‘service users’ they are constantly asked for their opinions on services, yet nothing ever changes. And in the meantime, the very act of thinking about what they would like to see happening forces them to be keenly aware of the wide gap between the help they can access and the help they really need, or gives them a sense of hopeful anticipation that is then most often squashed.

Many felt they wanted to ask the government questions, rather than giving answers. And the questions are strongly, passionately worded.

• At what cost has further research been commissioned - and how is that justified considering how much evidence we already have?

• Why are we separating asking what’s right for the NHS, from asking what’s right for people?

• Why does the UK spend so much more on the military and defence than it does on healthcare?

The final ones are quite heartbreaking.

• Why do you keep asking the same tired questions when you never do anything?

• Why don’t you consider us as fully human as you consider yourselves?

Of course, consultation fatigue is nothing new to us. But this response certainly reminded us that it isn’t enough to tell people they are welcome to share their knowledge and experiences. Especially when people have been let down again and again, you need to acknowledge that they are doing you a favour, not the other way around; and you need to give them some tangible assurance that they will be heard this time.

A word of encouragement

Nevertheless, we hope this won’t become a missed opportunity for individuals with strong feelings on our mental health services to come forward. As frustrating as it is, ultimately we are the ones who will suffer if we give up on being heard.

And for what it is worth, we believe there is reason for optimism. The research is being chaired by Professor Peter Fonagy, who is also chairing the government’s independent review into prevalence and support for mental health conditions, ADHD and autism. His interim report on that review showed encouraging insight - and incisive questioning of some of what we don't know and why we don't know it, as well as what we do. There are several worrying absences in the report - not least of which the fact that the word “trauma” only appears once in its 85 pages - but the thought process it reveals is encouraging.

So if you feel you might have something to offer, please do consider responding to the call. A recent report from a study conducted by the McPin Foundation found that subjective experiences are valued globally within the mental health field, and should be seen as central to research - to give just one example of centralised work that is happening to dismantle hierarchies of truth. The body of published, academic evidence showing that our personal evidence is important, is becoming harder and harder to ignore.

• If your experience is the only experience you have, that is still valid.

• If the language of the questions alienates you, say that in your answer.

• If they aren’t asking the question you want to answer, put what you want to write in any old box.

• If the idea of taking time on this without any certainty of it doing any good irks you, set yourself a timer and hit send once you’ve done what you can justify to yourself.

• Or if, like some of our folks, you really have given up on trying to be heard… Write that. And write why. That in itself is vital information.

If you want a starting point, the Centre for Mental Health’s round-up of the questions and the answers they are planning to submit is a great place to get some ideas for the sorts of topics those engaging thoroughly in the research around those questions are bringing up. Do you want to add your support to something they are saying? Have they missed something that is really important to you?

A very RATty response

Here are some of the things that we and our participants wanted to address.

Come down to our level

One overriding theme was that those making the decisions need to see what is happening on the ground.

Widespread privatisation, equality law breaches, and services that have their hands tied from offering support until someone’s mental health struggles have physical consequences, were all cited as areas where it is clear that policy and procedure is currently not adequately built around first hand awareness.

Many also thought wistfully back to a time when one could go into a GP surgery without an appointment, wait until everyone who arrived before had been seen, and then have however much time with the GP was needed. Whether or not such a method would still work today, 15-minute limits on mental health-related appointments were clearly not thought up by anyone who has had to conduct or attend one!

The value of having one person across all services with whom to communicate about one’s care was also referenced as something that, at a distance, doesn’t seem to stand up against what it would cost; but on the ground, many believed would actually save both a lot of time (and therefore money), and a lot of suffering.

Outside of spending, we strongly support the idea of introducing a mental health policy test - so that any policy made has to be measured against the impact it is likely to have on the nation’s mental health.

Trust us

Many of us knew what the most appropriate diagnoses for us were years before those diagnoses were actually made. A pretty high proportion of us were given incorrect diagnoses in the meantime (or still have them), or didn’t have vital comorbidities, social or cultural contexts considered alongside them - and as a result received inappropriate treatment, jumped through endless administrative hoops, and became badly worn down by calling into a void.

With less focus on diagnosis, as already stated as an ambition for the strategy, this will hopefully ease. But it won’t end the need for healthcare services to trust us to know what we need a lot of the time. Doing so could cut waiting times for services that people aren’t invested in, give us a feeling of self-efficacy that enables us to take greater responsibility for our wellbeing, and lead to more holistic approaches to mental health.

Strong support was also expressed, as will be no surprise to those who know us well, for improved resourcing of peer support - so, trusting us to help, as well as to know what help we need. This included peer advocates, who could support with knowledge of the various systems that are so often such a challenge for us to engage with (the law, benefits, housing, healthcare rights, etc), and speak for or support people to speak for us in situations where we know what we need to say, but are too dysregulated to do so.

The importance of resourcing independent grassroots peer support projects and organisations, not purely centralised offers where the structure and scope of the role is designed by non-peers, was also stressed.

Look after your staff

So many of us have experienced really challenging relationships with people employed to support us within the mental health system in one role or another - whether through direct conflict or through an apparent lack of care or energy for the job. None of us saw this as the fault of anyone who works in the mental health system.

Especially at the less well-paid end of the scale, ridiculously long hours are so often combined with a total lack of clinical supervision, reflective practice, or continued professional development that supports staff to manage the huge emotional toll of working constantly with people who are in high-stakes states of mind. The PATHWAY Study in which we were involved the other year found that many mental health professionals are repeatedly told by their managers to “be more trauma-informed” without being given any training or indication of what this actually means.

This isn’t just a risk to the mental health of the people receiving treatment: it’s a significant risk to those giving it as well. Professionals and those they support need to be able to empower each other, not wear each other down.

Call trauma by its name

The example of telling people to “be more trauma-informed” brings us onto one of our most significant messages for those preparing the strategy. For too long, trauma has not been acknowledged for what it is.

Post-traumatic stress is a mental health concern in and of itself, as well as often being a precursor to others, or developing alongside and after others. It has distinct symptoms, distinct ways of presenting itself (though of course no two survivors present precisely the same way), and those experiencing it have distinct needs from the range of other conditions for which it is most often mistaken, or that are sometimes co-present with it.

‘Trauma-informed’ so often seems to be interpreted as ‘being a nice person’. It really isn’t as simple as that. If professionals everywhere could be trained thoroughly to recognise when someone’s circumstances could be playing a part in their mental health presentation; to validate that person that their nervous system responses to the world around them aren’t inherently flawed, and that their emotions are a sign of a healthy survival instinct; and if services could be designed around the awareness that people need to feel safe enough within whatever treatment is offered to them for it to be effective; well, that would be a good start. But if we aren’t naming trauma as often as we are encountering it in the circumstances that worsen people’s mental health chances, in the memories and perceptions that block people from seeking or accessing treatment, and in the symptoms we see or stories we hear, we will keep misdiagnosing, retraumatising, and on a broader scale, overlook the breadth of the mental health risks posed by the injustices and adversities of the world in which we live.

Invest in the arts!

Of course we’re biased - but there’s more than enough evidence out there now for the extent of the benefits that the arts bring to our mental health, whether watching or participating. The last several years have seen quite a surge in published evidence from thorough, wide-ranging studies - but to many of us whose lives have been saved by a play, or a dance class, or a song or a sculpture or poem, it has been blindingly obvious for a long time.

Is that you? Well, don’t keep it to yourself. Whether or not you happen to be surrounded by people who also get it, the base of types of ‘evidence’ that people who make decisions actually listen to for the value of the arts in mental health is strong now. So add your voice to the call for evidence: let’s see if we can make this the research that finally ends the idea that the arts are a “nice to have”, and recognises them as core to our mental health with sustained resources, broad and ready availability, and the same level of trust as other interventions.

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