We may not have a cure, but at least we can ensure that people can walk down the street without being feared or mocked. Photo: Getty
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Schizophrenia is not a fatal illness, yet sufferers are still dying 20 years too soon

We have to go beyond the well-meaning commitment to “combat stigma” and be willing to share our time – that extra twenty years we currently have to ourselves – even when we are unable to measure what this will mean.

In the UK today, people with schizophrenia have the same life expectancy as the general population of 1930s Britain. Schizophrenia is not a fatal illness. It can be hard to treat and the severity of symptoms can vary enormously. It should not, however, kill you.

On the other hand, here are some things that can: heart disease; diabetes; respiratory disease. Schizophrenia sufferers are dying prematurely, not from the disease itself but from conditions that are treatable and often preventable. This is why today, at the start of Schizophrenia Awareness Week, Rethink are launching their +20 campaign, so called because sufferers of severe mental illness die, on average, 20 years earlier than the rest of the population. 

You may be assuming that the main cause of premature death in schizophrenia is suicide. It is not. Most of these deaths have physical causes, arising due to a mix of factors, such as failure to manage the side-effects of medication, unhealthy lifestyle and poor health monitoring. A fourth factor is “diagnostic overshadowing”, whereby a physical condition is overlooked or not taken seriously due to the patient’s mental state. As the sibling of a schizophrenia sufferer, this last one in particular resonates with me. I know that doctors have done this to my brother; I have done it to him myself.

In theory it should be easy to accept that suffering from severe mental illness does not make one immune to the same ailments which affect the rest of the population. In practice, however, this can seem “a bit much”. Mental illness can be so overwhelming and so all-consuming, it can be hard to believe there is space for anything else. Physical health then becomes subordinate to disease management. Anti-psychotic drugs are necessary, therefore the side-effects must be borne without complaint. Smoking is a comfort, therefore the normal rules of harm do not apply. These are just some of the assumptions that Rethink are seeking to challenge, in what is a drive not just to promote healthy lifestyles, but to show that physical health matters for everyone.  Schizophrenia sufferers do not merely have symptoms to manage but lives to live. And by that one doesn’t have to mean getting a job / a partner / whatever else passes for “normality” – it can simply mean living a life that is of value to you, with as much joy and as little pain as possible.

When I first heard the “20 years earlier” figure, I’ll admit that some small part of me felt relief. So it’s 55 rather than 75, or 66 rather than 86. How bad is that really, given how much pain and suffering the intervening years could contain? You can almost kid yourself it’s a mercy killing. A slow, painful death, borne of ignorance and neglect, can be repositioned – by the living – as what was meant to be. We can pretend it is a rational play-off between quality and quantity of life. It’s not that anyone has sat down and reviewed the pros and cons of all these needless deaths; no one has to. Collectively, as a society, we’re making all the little decisions which mean we never have to face the big one at all. Oh look! It’s just happened! How terrible! The drip-drip effect of not caring quite enough permits us to pretend the end result is out of our hands.

And yet however awful schizophrenia is – and when it is treatment resistant, with no periods of respite, it can be awful – so many other things are entirely within the control of the society surrounding the sufferer: whether you can walk down the street without being feared or mocked; whether anyone visits you when you are too afraid to leave the house; whether anyone cares that you are healthy and secure; whether you find places – any places at all – where there are people with whom you can talk and laugh. None of this can be achieved by some vague but well-meaning commitment to “combat stigma” on the part of non-sufferers. We have to be willing to share our time – that extra twenty years we currently have to ourselves – even when we are unable to measure what this will mean. Even if there is a point at which empathy fails, we have to push onwards.

I am frightened of the future, but I want to face it with my brother. I want him to grow old with me and to live through that extra twenty years – the twenty years I simply expect – with as little fear as possible. I don’t believe any human being loses the ability to be happy, or to feel the warmth that comes from others. Much as I’d like to picture old-aged us by some cosy fireside, exchanging fond reminiscences on 1980s TV, I know it’s unlikely to be that way. But it is possible to imagine life and hope, and for some to be denied this due to stigma is a disgrace.

Glosswitch is a feminist mother of three who works in publishing.

Photo: Getty
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The Prevent strategy needs a rethink, not a rebrand

A bad policy by any other name is still a bad policy.

Yesterday the Home Affairs Select Committee published its report on radicalization in the UK. While the focus of the coverage has been on its claim that social media companies like Facebook, Twitter and YouTube are “consciously failing” to combat the promotion of terrorism and extremism, it also reported on Prevent. The report rightly engages with criticism of Prevent, acknowledging how it has affected the Muslim community and calling for it to become more transparent:

“The concerns about Prevent amongst the communities most affected by it must be addressed. Otherwise it will continue to be viewed with suspicion by many, and by some as “toxic”… The government must be more transparent about what it is doing on the Prevent strategy, including by publicising its engagement activities, and providing updates on outcomes, through an easily accessible online portal.”

While this acknowledgement is good news, it is hard to see how real change will occur. As I have written previously, as Prevent has become more entrenched in British society, it has also become more secretive. For example, in August 2013, I lodged FOI requests to designated Prevent priority areas, asking for the most up-to-date Prevent funding information, including what projects received funding and details of any project engaging specifically with far-right extremism. I lodged almost identical requests between 2008 and 2009, all of which were successful. All but one of the 2013 requests were denied.

This denial is significant. Before the 2011 review, the Prevent strategy distributed money to help local authorities fight violent extremism and in doing so identified priority areas based solely on demographics. Any local authority with a Muslim population of at least five per cent was automatically given Prevent funding. The 2011 review pledged to end this. It further promised to expand Prevent to include far-right extremism and stop its use in community cohesion projects. Through these FOI requests I was trying to find out whether or not the 2011 pledges had been met. But with the blanket denial of information, I was left in the dark.

It is telling that the report’s concerns with Prevent are not new and have in fact been highlighted in several reports by the same Home Affairs Select Committee, as well as numerous reports by NGOs. But nothing has changed. In fact, the only change proposed by the report is to give Prevent a new name: Engage. But the problem was never the name. Prevent relies on the premise that terrorism and extremism are inherently connected with Islam, and until this is changed, it will continue to be at best counter-productive, and at worst, deeply discriminatory.

In his evidence to the committee, David Anderson, the independent ombudsman of terrorism legislation, has called for an independent review of the Prevent strategy. This would be a start. However, more is required. What is needed is a radical new approach to counter-terrorism and counter-extremism, one that targets all forms of extremism and that does not stigmatise or stereotype those affected.

Such an approach has been pioneered in the Danish town of Aarhus. Faced with increased numbers of youngsters leaving Aarhus for Syria, police officers made it clear that those who had travelled to Syria were welcome to come home, where they would receive help with going back to school, finding a place to live and whatever else was necessary for them to find their way back to Danish society.  Known as the ‘Aarhus model’, this approach focuses on inclusion, mentorship and non-criminalisation. It is the opposite of Prevent, which has from its very start framed British Muslims as a particularly deviant suspect community.

We need to change the narrative of counter-terrorism in the UK, but a narrative is not changed by a new title. Just as a rose by any other name would smell as sweet, a bad policy by any other name is still a bad policy. While the Home Affairs Select Committee concern about Prevent is welcomed, real action is needed. This will involve actually engaging with the Muslim community, listening to their concerns and not dismissing them as misunderstandings. It will require serious investigation of the damages caused by new Prevent statutory duty, something which the report does acknowledge as a concern.  Finally, real action on Prevent in particular, but extremism in general, will require developing a wide-ranging counter-extremism strategy that directly engages with far-right extremism. This has been notably absent from today’s report, even though far-right extremism is on the rise. After all, far-right extremists make up half of all counter-radicalization referrals in Yorkshire, and 30 per cent of the caseload in the east Midlands.

It will also require changing the way we think about those who are radicalized. The Aarhus model proves that such a change is possible. Radicalization is indeed a real problem, one imagines it will be even more so considering the country’s flagship counter-radicalization strategy remains problematic and ineffective. In the end, Prevent may be renamed a thousand times, but unless real effort is put in actually changing the strategy, it will remain toxic. 

Dr Maria Norris works at London School of Economics and Political Science. She tweets as @MariaWNorris.