Stoptober, supporting lifestyle change and preventing detained patients from smoking

  

This month is “Stoptober”, the annual campaign encouraging smokers to stop smoking for 28 days during the month of October. It’s an opportunity I heartily recommend people take, if they wish: choosing to stop smoking for 28 days gives you an increased chance of stopping smoking for good, like I did, a decade or so ago. And that would be a good thing, for all sorts of reasons.

On 1st October, South London and Maudsley NHS Trust (SLaM) went “smoke free”. This means that, across its entire site, no-one – staff, patient, visitor – will be permitted to smoke. The ban covers all of its hospital sites, namely the Maudsley Hospital in Southwark, Lambeth Hospital, Bethlem Royal Hospital in Bromley and the Ladywell Unit at Lewisham Hospital. SLaM, whether on ward or – and this is new – outdoors. And here’s the issue I’m highlighting today: that includes a ban on detained patients who do not have leave smoking. People struggling to cope with a mental health crisis and sectioned will now have have no opportunity to go and have a cigarette designated outdoor areas in the grounds, the ‘garden’ of their temporary surrogate home.

I mention SLaM simply because they are one of the only NHS trusts to introduce a total ban and because I’ve chatted with them on twitter about their policy. It’s funny what I randomly stumble across on twitter.

I asked SLaM whether it would be requiring staff to be ‘smoke free’ 24 hours a day; or whether detained patients would be permitted to smoke outside of office hours; after all, if a policy is about health, and both staff and patients have the lungs, the same policy should apply.

“[S]upport[ing] people who smoke to make healthy lifestyle choces and have access to treatment for nicotene dependency” is something I encourage and does not depend on imposing a total ban. However, while staff were to be encouraged to stop smoking, patients were to be forced to do so. I asked whether, to help make wards healthier, would detained patients have access to exercise, healthy food, fresh air? Would harmful practices like forced medication be banned. No response.

Extending the ban on smoking on NHS premises is NHS policy. The National Institute for Health and Care Excellence (NICE) issued new guidelines last year, updating those from 2008 which banned smoking indoors. SLaM matron Mary Yates contributed to the development of NICE’s national smokefree guidelines which is perhaps why SLaM is one of the early adopters. But what of psychiataric detainees? Somehow, along the way, the rights of mental health patients to make choices about our own lives seem to have been bulldozed by the familiar patronising undertones that infect the whole of mental health services.

“But smoking is harmful! We have a duty to our patients! We must do everything we can to encourage and support patients to make healthy lifestyle choices!” I agree with all of that. However, smoking is not a medical or mental health emergency: it is a bad habit, an unhealthy habit, a poor lifestyle choice, one to be discouraged – and one where people need every opportunity and support to stop or cut down if they choose. Patients with mental health problems die decades before the general population from conditions such as lung cancer, heart disease and stroke. It’s a serious problem and one which needs to be addressed, urgently, diligently and intensely.

However, no one is sectioned for nicotine addiction. No one is in immediate danger of death from being a cigarette smoker. Being a smoker is not a medical emergency. The presenting problem is a mental health crisis. A mental health crisis is not the time to impose lifestyle changes. To seek to impose lifestyle changes at that time is, as Mark Brown put it, “awesome mission creep”.

What is the reason for extending the ban on smoking into the grounds of psychiatric hospitals? The indoors ban introduced a decade ago had clear aims, but what are the aims of the outdoor ban? SLaM says in its page on it’s new ‘smoke free’ policy that its aims are “[t]o create a healthier environment for everyone] and to “reduce … inequality”. Are those aims – vague as they seem – achieved by imposing temporary abstinence on psychiatric detainees? Is there evidence that enforced temporary abstinence provides sustained behaviour change?

For instance, do detainees prevented from smoking whilst on ward remain abstinent on discharge – or, say, 6 months post-discharge? We don’t know because, as the NICE guidelines acknowldge, there are huge gaps in the evidence. This is an evidence-free zone. It is a policy based on a toxic combination of public health moralising about smoking and paternalism about people with mental health problems.

And it is a dangerous policy too. Not only is there no evidence that enforced temporary abstinence improves health outcomes post-discharge, there is clear evidence that, in the short-term, bans are potentially dangerous for patients. This is because smoking impacts on the levels of medication patients require. Most inpatient stays are short-term – two to three weeks on average – and, for a short-term stay, stopping smoking suddenly can mean a dangerous rise in in the levels of medication in the bloodstream that will need to be monitored (which does not happen). And, on discharge, any levels of medication established during detention will be impacted on the (likely) resumption of smoking on release.

Smoking is just about the worst thing anyone can do to their body apart from, say, sticking their head into a giant mincer & pressing the on-button. I am a non-smoker and wish everyoe else was too. I wish smoking had never been invented. It breaks my heart when friends smoke (and makes me turn up my nose and back away from the smell); I want them to be around, not die prematurely early from smoking-related disease. That’s why I want all the help in the world made available to people with mental health problems who wish to stop smoking. But I don’t for one second think that unevidenced temporary enforced abstinence should be any part of the solution. There’s a difference between saying “Smoking is harmful” (which clearly it is, and has a disproportionately large impact on people with mental health problems) and saying “This new policy is the most best & effective way to reduce that harm” – which clearly it isn’t, because there’s no evidence base.

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Background information:

• Smokers on psychiatric wards – my blog from 2 years ago on this subject, including links to more background information
• NICE guidance recommending all hospitals become smoke free (2013)
• SLaM’s announcement that it will be “going smoke free (23 September) and details on its website about SmokeFree
• Stoptober  – The NHS programme to stop smoking for 28 days in October
• Guardian – There’s worse things than patients smoking outside hospitals – Former psychiatric inpatient & Poppy Shakespeare author Clare Allen (December 2013)
• Kings Fund – Clearing the Air – Debating smoke-free policies in psychiatric units (2006) – From when smoking was permitted indoors in many psychiatric units
• Royal College of Psychiatrists
  • Physical health in mental health report (2009)
  • Smoking and mental health leaflet

• Daily Mail – gruesome story about the contents of counterfeit cigarettes (human excrement, asbestos and dead flies apparently!) (HT @Nurse_w_glasses)
• Doctors Fear Asking Mentally Ill to Quit Smoking – But these big smokers are likely to benefit from treatment (HT Dr Jonathon Tomlinson @MelloJonny) (2009)
• Mental Health Foundation – Death of the smoking den – on the impact of the inpatient smoking ban (June 2009)
• Philip Morris USA list of cigarette ingredients (from chocolate to nailvarish remover)
• Wardipedia – Smoking on psychiatric wards
• Twitter discussion on banning mental health workers from smoking at work (November 2013)
• A Smoking Cessation Intervention for Severe Mental Ill Health Trial (SCIMITAR)  (ISRCTN79497236) – registered randomised controlled trial (2009)

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Storify stories

• A discussion with SLAM about their smoking ban imposed on detained patients (Tuesday 30th)
• SLAM’s lunchtime tweet chat on the topic of their smoking ban, including tweets by SLaM Matron Mary Yates, described as a smoking cessation expert who contributed to NICE guidance which recommends all hospitals become smoke free  (Tuesday 30th)
• Twitter chats with the lovely twitter people on banning detained patients from smoking
• Little chat with NHS psychiatrist and psychotherapist who goes by the twitter name of Herne The Hunter

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Blogosphere

• Smoking and psychiatric wards – By trainee psychiatrist Georgia Belam (30th September)

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Input from patients:

• Here I’ll put links to all the patient consultations I come across *taps fingers* *checks watch* *waits*

South London and Maudsley on film: humanity and humour

Looking at a newspaper story about the murder of drummer Lee Rigby earlier in the year, Lloyd, who has a diagnosis of paranoid schizophrenia, said that hearing about schizophrenics in the news made him feel worse. He worried that he didn’t know his own mind and wondered if he himself could turn into a murderer too, since that’s what he read in the papers. Dealing with the symptoms of psychosis can be difficult enough in itself. Having to deal with society’s perceptions that people with your diagnosis are violent and unpredictable adds another level of difficulty.

Earlier today, I attended an advance screening of Channel 4’s new series on the realities of modern mental health care at the South London and Maudsley (SLaM) mental health trust.  In the screening room in the basement of Channel 4′s headquarters in Horseferry Road, a select audience sat in red plush seats watching one of four programmes in the series on modern mental health care. The series is entitled Bedlam and the name choice has caused controversy. To an extent it can be argued that, when a respected NHS trust calls a television series after a medieval asylum, it dilutes the strength of the case against Thorpe Park’s “mental patient scary fun” horror maze Asylum. But what of the series itself?

The episode previewed profiled the work of Speedwell community mental health team (CMHT) in Deptford, south London, over the course of a year. The four-part series, which starts at 9pm this Thursday, also covers the Anxiety Disorders Residential Unit, Lambeth Triage (the front line for emergency cases) and the older adults unit (over 65s).

Without giving too much away, we followed patients Tamara, Lloyd and Rosemary, all of whom experience psychosis. We saw them trying to cope with periods of illness, voices, delusional beliefs about bed bugs and with children being taken into foster care.  We saw them using prescription drugs as well as speed and alcohol to help manage their troubling symptoms. We saw them at times chaotic and disturbed, and at other times funny and happy.

We saw social worker Jim Thurkle doing his best to hunt down and help patients, a third of whom refuse to engage with him. We saw Dr Tom Werner doing his best to confirm the stereotype of the psychiatrist in the bow tie. We saw the fine line between enabling someone to live the life they choose and intervening in the interests of their own health and safety.

Not once did we see someone who could be considered a danger to anyone else. Not once did any of the patients present as anywhere remotely near the stereotype of the paranoid schizophrenic mad axe murderer. What we saw was patients struggling to manage their lives in difficult circumstances, and the professionals who tried to help them.

It was particularly interesting to see the work of a CMHT  which, along with GPs, carry out the bulk of psychiatric care in this country. As the booklet handed out at the advance screening says:

“The lion’s share of SLaM’s work takes place in a community setting, looking after more than 35,000 people with mental health issues. SLaM treats 8,000 psychosis patients a year; 6,000 of whom are based and treated in the community. We touch on different treatments available and see intense and moving interaction with social workers and mental health teams.”

As Pete Beard, the producer of the episode, who answered questions after the screening, said:

“We wanted to reflect the realities of this challenging work, following the actual narratives of people walking a tightrope with their mental health as it happened and the teams who act as a safety net. I feel that these realities are rarely reflected accurately in the media and as a result it is important to demystify the work performed as community teams, especially taboo subjects such as being sectioned”.

It was profoundly moving to see someone taken away from their own home, against their will, and detained with no legal authority other than the personal opinions of a social worker and doctors. No police arrest, no court process, no judge, no jury. Just a simple form signed, and you have no choice about even the simplest things like what you eat, where you sleep or what shampoo you use to wash your hair. And, on a more intrusive level, you have no right to refuse medication.

This extended scene cannot help but make you reflect on the balance of power between the state and the individual, and on what society deems to be acceptable norms of behaviour. This is especially so when you’re dealing with someone you don’t really know, as can be the case when a mental health team is called out to consider sectioning someone. Britain has a proud tradition of eccentricity, but that is not tolerated if you are deemed to be mentally ill. Simply being a nuisance to others but in no way dangerous to yourself or others can, ultimately, mean three people decide on your behalf that your quality of life will be improved by a compulsory stay in a locked psychiatric ward.

The sectioning sequence made me think about the boundaries or free will and autonomy and to what extent people’s peculiarities are tolerated. I have been on the receiving end of such a process, and it changed my life irrevocably. As Dr Baggaley said, when he’s taken part in sectionings he does wonder whether this was what he trained for. Although he sees it as difficult, he does see it as necessary.

Dr Baggaley described the person in question as a “revolving door patient” who would face repeated hospitalisations, some under section (compulsion), for the rest of their life. And yet this is someone who will – under the current welfare benefits system – also face repeated Work Capability Assessments. It is hard to see the point of such assessments in this case particularly since, as Dr Sarah Wollaston MP wrote today, WCA’s are not geared towards helping people with mental health problems find and retain employment.

One of the things which struck me in this episode was the amount of humour. Despite their difficult circumstances and troubling symptoms, the patients followed could come across as affable, amenable and warm-hearted. Ripples of laughter would regularly rumble across the audience, and not just because viewers were looking for a little light relief in what was, after all, a serious topic. As with any other fly-on-the-wall documentary, the colourful charaters in this episode were full of humour. The seriousness of the subject matter made the flashes of levity even more welcome.

Overall, this preview episode was intimate, insightful and profound. It showed human beings in all our difficulties, complexities and ambiguities. It showed the realities of trying to combat the stigma around mental illness with humanity and humour. It showed that danger and fear are the least of the concerns of the CMHT.

On a final note, I will end with a criticism that was raised by audience members with personal experience of mental health services: namely that the episode was somewhat naive and unrealistic. Audience members had received far worse experiences of mental health care, or had been able to deliver a far worse service due to cutbacks. It was acknowledged by the film makers that Speedwell CMHT had a ring-fenced budget, so had not been under the same constraints and workload other CMHT’s they’d liaised with had.

It was also highlighted that a lot of the difficulties patients needed help with were practical, and that these needs were not being met. The patients were unable to deal with these matters themselves and therefore they were stuck in difficult circumstances. Examples were the bedbugs which did actually exist in Tamara’s flat. It was not a delusional belief (though its extent may have been) and dealing with that practical problem may have lessened her delusional symptoms. This and her use of amphetamines may also have been the way she managed the immense sorrow of losing her children. Lloyd appeared to be using alcohol to numb his pain.

With a series planned over two years and filmed over twelve months, much footage will have ended up on the cutting room floor. It’s a shame, however, that the close relationship between medical help and social support, and the parts played by talking therapies and thereapeutic activities, were overlooked completely in this preview episode.

Nor was the 9% reduction in inpatient beds in the past 2 years mentioned.  Nor were the terrible cuts to community mental health services mentioned.

On the other hand, as Madeliene Long, SLaM chair said:

“Despite it affecting so many people, mental illness is still poorly understood. The stigma and discrimination that people face can make their mental health even worse and can prevent them from seeking help. So it’s really important that we do everything we can to raise awareness, challenge stereotypes and promote the facts about mental health. I’m really pleased that we have been able to work with Channel 4 and The Garden Productions on such an ambitious project which sets out to do exactly that.”

As executive producer Amy Flanagan said,

“Many of these patients had lived long lives with no history of mental illness. It could happen to our parents, to us.”

And, if it does happen to us or someone we know, programmes such as these will mean it feels a little less alien and a little more a part of everyday life.

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Media coverage:

• Channel 4 – press release about Bedlam
  • Anxiety (Episode 1/4) – 9pm Thursday 31st October – “It’s a condition every one of us experiences from time to time, but imagine if one day you woke up and found your anxiety had spiralled completely out of control.”
  • Crisis (Episode 2/4) – 9pm Thursday 7th November – “At Lambeth Hospital in south London, the Trust has pioneered the use of short-stay emergency wards for patients in crisis. It’s effectively run like A&E but for those with mental illness.”
  • Psychosis (Episode 3/4) – 9pm Thursday 14th November – “In this episode we explore the world of the mentally ill who live in the community.”
  • Breakdown (Episode 4/4) – 9pm Thursday 21st November – “In the final episode of Bedlam, cameras gain access to a psychiatric ward for over 65s at the South London and Maudsley (SLaM).”

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South London & Maudsley NHS Trust:

• SLaM’s site on the TV series – Bedlam
• On twitter: @MaudsleyNHS
• Website: SLaM
• SLaM and C4 make groundbreaking documentary series on mental health (22nd August) (initial press release)
• Bedlam – Our new TV series (2nd October)
• Bedlam – The story behind the name of our C4 series ( 3rd October)
• Bedlam – Our new Channel 4 TV series SLaM e-news edition (14th October

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People involved:

• Dan Charlton – Head off communications & media at SLaM (twitter @Dan_Charlton1)
• Dr Tom Werner (twitter @TellDrTom) – psychiatrist & CBT therapist – website

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Blogosphere

• Can stigma be challenged by evoking stigmatising stereotypes? From the Maudsley to Bedlam (2nd October) – My initial blog, with links to lots of other matieral

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Related coverage:

• Guardian newspaper – People with mental illness need help to get back to work – but coercion is wrong (28th October) – By Dr Sarah Wollaston MP
• Guardian newspaper – Why mental health bed cuts make me ashamed to work for the NHS (October 2013) – By Dr Alex Langford (who also attended last night’s private screening)

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Madsplaining … as it was mansplained to me. On offering advice to people with mental health problems

The Yolkr – teach your granny a new way to suck eggs (or at least to suck yolks from whites)

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Madsplaining: Offering unsolicited advice to someone on how they should manage their mental health (especially by peers and mental health professionals)

On twitter (and no doubt on other social media platforms), we mental health folks share a lot of detail about our lives. We talk about our good and bad experiences of mental health treatment, medications, symptoms, cheese sandwiches, our lives in general. Sometimes, when someone’s sharing a problem they’re experiencing with managing their mental health, other tweeps – those with lived experience or mental health professionals (or both) – will chip in with helpful tips.  We can be a sharing, caring bunch.

“Oh, I tried X and it works wonders for me. Why not give it a go?” “I saw a documentary about this new thing the other day that I thought would help you with that thing you mentioned.” Sometimes this moves towards more generic helpful tips, along the lines of, “Have you tried a nice cup of tea / hot bath / going for a walk / phoning a friend?” Advice and tips on all sorts of things. It happens offline too.  It can be good advice. Generally it’s well-meant. But …  is it welcome? Well, maybe yes. And maybe no.

The thing is, if someone is managing a mental health (or physical) condition, especially if they’ve been doing so for a while, they’ve probably had a good old go at trying the various drugs, treatments, therapies, supplements and diets on offer. They may be working their way through them with their healthcare team. They may be researching in the library or online. They may have joined a self-help group or forum. They may even have tried any number of hocus pocus remedies that make it into the Daily Mail or documentaries. So, when someone tweets about their condition and you’re tempted to mention something off the top of your head, think: are they asking for advice?

If it’s an offline friend or family member you know well, do they see a doctor and take medication regularly for their condition? Do they have a self-management plan? If someone is managing a long-term condition, the likelihood is they’re keeping some sort of track of how they’re doing. “Are you sure you’re not doing too much and, you know, starting to go hypo?” “Isn’t it time to go to bed now?” “Did you forget to take your medication today? You seem a bit … you know.”

Such comments can be helpful: sometimes we can ignore our own self-management early warning signs and only pay attention when we hear it from someone we trust. If you know someone well enough, or if they’ve asked you to be part of their self-management team – an early warning ally, as it were – it may be appropriate to chip in. But otherwise?

Unsolicited advice to someone managing a long term health condition can be seen as patronising. It may feel like criticism. It can be viewed as a sign that the advice-giver does not respect the person’s ability to manage their own healthcare needs properly. It can be seen as a suggestion that the person does not know their own mind … which, in the context of managing a  mental health problem, puts the advice-giver in really dodgy territory. Really dodgy.

Why am I writing this post now? Because only today I was reminded of how quick I can be to offer unsolicited advice. To leap in with handy hints and tips about how they could make their life better … if only they’d do as I suggest.  Partly that comes from my work background; partly because, being fairly long in the tooth, I (think I) know a lot of stuff; and party because I have a caring nature & like to help. Once, in response to a tweet from veteran mental health writer and thought leader Mark Brown (twitter: @MarkOneinFour), I tweeted “helpful advice” about light boxes. Of course, he’d tried that back at the dawn of time. Luckily he let me off the hook graciously.  Earlier today, I spotted a tweet about a medication issue I had faced myself. I replied with several helpful practical tips … Or so I thought. Because then I remembered … no advice had been sought. And that’s when I coined the term “madsplaining“. Let me explain.

I first came across the term “mansplaining” (with an “n”) when tweeter Phil Dore (twitter @thus_spake_z) used it.  When I did an online search, this (from Urban Dictionary) was on the first page that came up:

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“Mansplaining: To explain in a patronizing manner, assuming total ignorance on the part of those listening. The mansplainer is often shocked and hurt when their mansplanation is not taken as absolute fact, criticized or even rejected altogether. Named for a behavior commonly exhibited by male newbies on internet forums frequented primarily by women. Often leads to a flounce. Either sex can be guilty of mansplaining.

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A lot of the terribly clever online debate passes right over my head, and that’s as far as my knowledge of “mansplaining” goes (though I understand it’s been used online in feminist discourse for several years).  As it happened, it fitted perfectly with an encounter I’d recently had with a trainee psychiatrist: he was very new to twitter, had dived into an ongoing conversation with a patronising explanation, and was then flumoxed when I pointed that out. The “flounce” went on for quite some time.

And so what do you think happened when I first tweeted the word madsplaining …? Yes, you guessed it: I got mansplained!

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So after “mansplaining”, do we have madsplaining? ie offering unsolicited advice to someone on how they should manage their mental health (My tweet)

I think that would be psychsplaining. mad folks being splained to. but i notice your rhetoric is from feminist & poc activism… – Erick Fabris (twitter: @exic)

Oh hi Erick, are you mansplaining to me what I mean when I say madsplaining …? (My tweet)

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Priceless. Well, thanks for asking, Erick, but I do mean just that: madsplaining. As other tweeps chipped in:

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This is perfect! madsplaining gets right on my tits! “Have you just tried….?” “Everyone worries…” Hahahahaha my new word! – Molly Teaser (twitter @mollteaser36)

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Always fascinated about how much they know about their advice and how little they know of me. It’s the assumption that just because their advice works on their own neurosis, it works for everyone else. – MH Extremist (twitter @wildwalkerwoman)

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“You mean: “Snap out of it” “cheer up!” It’s all in your mind” “What have you got to be depressed about?” YES. Can you imagine this: “Cancer? You don’t look like you have cancer. Pull yourself together, get over it.” Ect” – MScarlet Wilde (twitter @wilde)

 

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I draw a distinction between madsplaining and what I call “patienting“, which is when someone uses your status as a “mental patient” to try to shut you up. An example would be (as has happened to me several times on twitter) a mental health professional will say to me something along the lines of, “Think you’d better take your meds now, love”.  Perhaps that’s a topic for another blog.

And, finally, here’s a little interchange to bring a smile to your face:

Or will this all turn meta and become splainsplaining? – Phil 

I blame you entirely, Phil, for introducing me to the word “mansplaining” … which you can take any way you like ;-D (My tweet)

The concept of splainsplaining is kinda blowing my mind – Dr Sarah Knowles (twitter: @dr_know)

Don’t worry, I’ll splainsplainsplain it to you – Phil

*head explodes* – Sarah

 

Sometimes I love twitter. And sometimes I need to take my own advice.

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• My twitter conversation on Storify:
  • Madsplaining (a short one this time!)
  • Follow up – Sanesplaining and psychsplaining – my online research on the origins & use of these terms (another short one)
• What have you got to be so depressed about? – Men Will Pause blog by Scarlet Wilde (twitter: @wilde), written in response to the madsplaining twitter conversation
• Eric Fabris‘s website – Mr Fabris is a Canadian researcher, artist and writer. Amongst other things, he lectures at the Ryerson University School of Disability Studies.

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Let’s talk about poo! It’s tweet chat time …

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Here’s the transcript & fab wordcloud from the tweet chat on 1st August – patients & nurses all talking about poo!

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This Thursday 1st August at 8pm, We Nurses will be hosting a tweet chat about constipation problems, at my suggestion. Here’s my earlier blog on constipation induced by psychiatric medication, including 25 tips you can try for yourself. It is my most read blog piece ever. I guess that makes me some sort of Poo Queen. Hmm …

However, if it gets people talking about an important but often overlooked or covered up topic, that’s all to the good. Let’s break the taboo about poo and make a date in our diaries for this Thursday’s poo chat!

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Background reading:

• My blog on the topic:  Constipation: embarrassment, discomfort … and Poo Pride!
• From We Nurses:
  • link to the guide on the upcoming tweet chat: Talking about poo
  • Tweet chats made simple – handy guide to tweet chats if you’re a newbie
• NHS Choices: Constipation
• What is the Bristol stool form scale anyway …? A brief overview

The Bristol stool tart cake!

 

Additional information on constipation:

• BUPA: Constipation
• Cancer Research UK:
  • Symptoms of constipation
  • Causes of constipation
  • Assessing your constipation
• Patient UK:
  • Constipation in adults
  • Constipation in children
• Royal College of Nursing: Management of lower bowel dysfunction

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Constipation: embarrassment, discomfort … and Poo Pride!

Alternative Bristol stool form chart from rewarm.co.uk

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On Thursday 1st August at 8pm, the #PooPride tweet chat with We Nurses took place – woo hoo!

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Having been on twitter for a little over a year, I’ve seen lots of topics discussed. Bowel problems aren’t one of them. Which is odd, given the effect many psychiatric medications have on your digestive system. My hints on twitter about my debilitating bowel problems seemed to go unnoticed. However, since there are a lot of people taking psychiatric medications, and for long periods, there must be a lot of people out there with constipation and other bowel problems who are suffering in silence.

At Easter, Charlotte Walker (@BipolarBlogger) blogged about a weekend away and how medication and bowel problems had affected her. I recognised the juggling act and stress of taking medications and planning toilet breaks. Then, yesterday evening, I spotted a tweet by Charlotte about constipation, to which I responded. When Charlotte asked me if I had any recommendations, it turned out that, after years of managing my own bowel problems, I could come up with 20 off the top of my head! (See below.)

That started up a spontaneous tweet chat. (All the tweets are linked below.) Then, because the issue is much wider than our personal experiences, because people were suggesting medications and treatments to try, and because constipation can cause serious complications, I decided to see if we could have an organised tweet chat involving medical professionals too. Watch this space!

Here’s the tweet of Charlotte’s that caught my eye:

“Dear antipsychotics, love what you’re doing on the bipolar, great stuff. Just concerned my bowel may RUPTURE, ease off a bit there, maybe?”

Charlotte explained that she was experiencing antipsychotic-induced chronic constipation which had flared up into faecal impaction. Not fun. Not fun at all.

Problems with your digestive system – whether it’s too much movement, or too little, or both; whether it’s frequency, consistency or volume; or colour, smell, blood or mucus; or some other charming symptom – can be a blush-making topic. I know, because I’ve blushed those blushes.

The first time I plucked up courage to mention to a medical professional the bowel problems I was experiencing, I received a reaction I hadn’t anticipated: laughter. As a result, I didn’t raise the issue again till an Atos medical. Through bodily sobs and streaming tears caused by shame, I forced myself to describe my symptoms. This time, the reaction was disbelief: zero points. Laughter; then disbelief. After that, through trial and error, a keen  memory for toilet locations and a well-stocked handbag, I gradually found ways to manage my bowel problems myself.

That was no longer possible, however, when I was detained in hospital. The combination of enforced inactivity, a diet devoid of fibre and the side effects of psychiatric medications meant my bowels came to a halt. There was one fortnight when I passed just one motion. Thank goodness for stretchy trousers that could accommodate my massive and growing belly, taut as a drum, as I waddled round the ward in pain, unheeded and untreated except for senna.

Since then, through my own efforts and working with my GP and the specialists she’s referred me to, I’ve found a way to manage the problems. And I can talk to pretty much any health professionals without embarrassment now so I know that, if problems come up in future, I’ll be able to talk about them and, hopefully, get the help I need.

You know you’ve got constipation when your digestive system has slowed down so you pass motions less often than you want to or when your stools are hard and difficult to pass. You may also have indigestion. It’s uncomfortable. It’s embarrassing. It’s even potentially dangerous. It’s an important topic.

Normally, constipation is a short-term problem which responds well to lifestyle changes and, if necessary, treatment. However, if constipation is drug-induced and there isn’t an alternative, you may be looking at a multi-pronged approach in order to successfully keep on top of constipation. So, for those of us taking medication, it’s a topic of even more importance.

Below, as a starting point for discussion, as food for thought, are the twenty tips I came up with off the top of my head for Charlotte to try out, plus a few more I thought of later. They are things that have helped me personally (or people I know) to manage the impact of drug-induced constipation. They’re aimed at someone who’s otherwise physically healthy. They’re tips you could use as a springboard for discussion. They’re common sense, not rocket science. They’re not comprehensive. For medical advice, take a look at the NHS website or ask your medical practitioner. Maybe they’re worth a try. We’re all different, after all.

As Charlotte tweeted later that evening:

 “Goodness! What a lot of people have followed me since @Sectioned_ and I started talking about constipation! #goodtoshare”

And, as Phil Dore (@thus_spake_z) tweeted:

“Poo Pride! :D”

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My personal tips on dealing with drug-induced constipation:

1. Keep a poo diary

If you keep a record of the motions you pass, you may start to see a (monthly or other) pattern. Women in particular can find their bowel movements are affected by their monthly cycle. Maybe it’s not a relapse or a remission; it’s just your monthly cycle. If you get to know the effect (if any) that your monthly cycle has on your bowels, you’ll be better able to distinguish what works and what doesn’t for your constipation. And improving constipation involves trial and error.

What to include in the poo diary? Time of day you pass (each) motion, what you were doing at the time (eg had you just smoked a cigarette). You’ll need to keep a record of what you eat and and your fluid intake, to see what effect that has too.

Also, include your Bristol stool scale number. It classifies stools into 7 different types. The ideal is around around a 3 or 4. The official Bristol stool form chart is above.

Bear in mind when looking at the chart above that your poo may not be the same as the colour shown: stools vary in colour depending on what you’ve eaten. I’ve pooed red after beetroot juice and green after spinach. Taking an iron supplement can (I’m told) blacken stools (and harden them). If there’s blood or mucus in your poo though, that’s not a good sign. Mention it to your medical practitioner.

Such a detailed diary won’t be necessary forever, but it’s a useful tool to see where you are now, and to identify any patterns emerging. Try to keep one for at least 2 weeks (men) or two cycles (women).

2.Eat or drink something

Stimulating one end of the alimentary canal (the long tube that runs from your mouth to your bum) can stimulate the other. Therefore, when you want to poop, first eat or drink something. I find that, if it’s going to work, it does so within around half an hour. So if I need to leave the house by 10am, I’ll eat drink or something (however light) at 9am to give it a chance to work its magic.

3. Try a stool softener

An effect of some psychiatric medications is to reduce the fluid content of foods. A stool softener (or osmotic laxative) is a medication that draws water into the stools, making them softer and therefore easier to pass. Lactulose is the stool softener I’ve tried and it’s worked for me. Brilliantly. Movicol is another one, though I haven’t tried that.

A downside is its taste: exceptionally sweet. But hey, just clean your teeth afterwards. Especially as another side effect of some psychiatric medications is dry mouth, or rather reduced saliva – and hence reduced protection for the teeth.

4. Use a jug

If your problem is hard stools, it’s water that will soften them; so you’ll need to take in sufficient fluids during the day. To ensure I push through enough fluids, I fill a jug with water on rising and fill my glass from it throughout the day. That gives me a goal to work through during the day.

Don’t drown yourself in fluids late in the day and end up wetting the bed. And yes, I have done this too: the meds I take knock me out so I sleep like the dead and wake up in a puddle. The way round that is to spread my fluid intake throughout the day so it’s not gulped down in a rush towards bedtime.

5. Prunes

Fluids rock. As do prunes. Drinking prune juice helps me too. And it’s super yummy. As are prunes with custard. I’ll take any excuse to eat prunes.

Beware though: don’t take too many. Once, before I knew the laxative effect of prune juice, I drank a whole litre in one go. That’s how I know it works. Now, I just drink a glass.

6. “Doing a Paula”

If you’re just not going, your bowels may be sluggish. Your digestive transit time (the time it takes from something going in your mouth to it coming out the other end) may have been slowed – whether caused by medications, or enforced inactivity if on ward, or lack of motivation to get active (a side effect of some drugs). If you want to know your transit time, you can do the sweetcorn test (eat some sweetcorn and see how long it takes to spot it in your stool – transit time should be around 24 hours).

One way to get the bowels moving is high impact exercise, which can stimulate the bowel to open. If I’m indoors, I’ll fire up my trampet and bounce along for a song. Jogging works too. Just be sure you know those toilet locations or have a handy pack of tissues in your bum bag.

Incidentally, if you normally have healthy bowels but find yourself almost or actually involuntarily evacuating your bowels during a run (pooing yourself), that may not necessarily mean you have a bowel problem. It can happen to normal, healthy runners the world over. It’s an occasional downside of the pastime. After all, the phrase “Doing a Paula” derives from the reason Olympic athlete Paula Radcliffe had to retire from the Athens marathon. Don’t panic. Just plan ahead. And learn the technique that enables you to delay passing a motion.

7. Vitamin C

Heard of the vitamin C “bowel tolerance dose”? Taking over 1g vit C gives me the trots. Everyone’s dose is different. I know the trots aren’t ideal, but sometimes you just need to pass a motion.

Incidentally, if you’ve recently changed your diet to include a high dose vitamin C supplement and find your stools are loose, the vitamin C could be the problem. Don’t automatically assume you’ve caught a bug or got IBS (irritable bowel syndrome). Experiment with the dose till you find the one that works for you.

8. A bathroom step

Essential bathroom kit is a little step (about 8” high), so that, when you sit to poo, your knees are a little above your bum. Sitting in this position relaxes your lower body and places your bowel in the correct position to pass a motion easily. It reduces the need to strain (which risks causing haemorrhoids/piles). And, bonus, it also means you can rest your reading material on a flat surface!

They’re cheap as chips (mine cost £2). Once you’ve used one of these, you’ll never want to poop any other way. If you’re visiting, you can usually find something to stick  under your feet – eg a couple of thick books, a pack of loo rolls – so your knees are at the right height. Simples.

9. Try training/routine

This is a controversial point because some bowel specialists I’ve seen say it’s impossible to train the bowel and others say the opposite.

The idea is that, at the same time each day – eg half an hour after breakfast (when you’ve stimulated the bowel by drinking or eating something) – you go into the bathroom whether or not you want to pass a motion. A sort of potty training for adults. You sit on the toilet, hang out there for 5 minutes, then leave. If you pass a motion good; if not, no problem. Maybe next time.

10. Latex gloves

This comes from a little trick I recall my mother showed me as a child. To get newborn kittens to poop for the first few weeks, rub their little bottoms. It worked. Why wouldn’t it work for humans too?

The idea is to very gently circle the anus with a gloved finger to relax it and, hopefully, give it that little extra  nudge it needs to stimulate the passing of a motion. Use lubrication of some sort (eg vaseline).

11. Smoking

Seriously. There’s a reason people smoke after a meal! I nearly took it up  in hospital again because I was so blocked. (Also because only the smokers were allowed into the garden.) Before I became a non-smoker, smoking a cigarette was a guaranteed way to bring on what I believe the Girl Guides call the “daily clear out” (though I suspect they don’t get the little girls to smoke).

12. Coffee

Again, there’s a reason people drink coffee after a meal. If you don’t like the taste, think of it as medicine: it may not taste good but, if it does the job, that’s what matters.

13. Stimulant laxatives

Senna is a laxative that works by stimulating the muscles of the gut to push your poo towards the anus (a stimulant laxative). Maybe this is just what you need. Bear in mind though that that senna is aimed at relatively short term use because it can, over time, make your bowels lazy.

Personally, senna was not good for me. When the nurses offered me various medications on ward, I made the mistake of thinking that, because it is a natural product, it would be the best choice. Wrong.

In fact it’s what caused me to blow up like one of the sheep in Far From the Madding Crowd: I wanted someone to spike me in the guts to relieve me of the terrible pain. I felt like I was going to die. In one fortnight, I only passed one motion.  I didn’t know what was causing the problem. I thought I’d be even worse without the senna. Luckily I was able to speak to a hospital pharmacist for an hour, and he helped me to work out what the problem was and what would help. If in doubt, seek medical advice.

Bulk-forming laxatives such as Fybogel are a third type, which help stools retain fluids.

14. Fibre

It’s a key recommendation for the prevention and management of constipation to have sufficient dietary fibre. Most adults don’t eat enough, and constipation is your clue that that means you.  You can increase your fibre intake by eating more fruit, vegetables, wholegrain rice, wholewheat pasta, wholemeal bread, seeds, nuts and oats. Eating more fibre helps keep bowel movements regular by helping food pass through your digestive tract more easily. High fibre foods can also make you feel fuller for longer, in case you’re struggling with cravings (another side effect of psychiatric drugs which contributes towards weight gain).

If you decide to increase your fibre intake, however, do so gradually: a sudden increase may make you feel bloated, produce more flatulance and give you stomach cramps. Eek!

15. There may be no magic bullet

Bear in mind that, though the hard stools and slow transit may be caused by psychiatric drugs, they may not be fixed just with drugs. It may take a package of measures to bring constipation under control. But finding the right drug/combination can surely go a long way to helping.

And be prepared for the fact that you may end up taking more drugs to deal with side effects (like constipation) than the number of drugs you take for your primary psychiatric symptoms. That’s just the way it is. Just as every surgery causes scars, so every drug has side effects. It’s just a question of finding the side effects profile you’re prepared to live with.

16.Experiment

You could try each of these suggestions to see which ones work for you. Perhaps put them together into a morning routine, tweaking as you go to work out the right combination for you: we’re all different.  However, it’s hard to tell what’s working when you’re doing lots of different things at the same time. You could consider doing them all at the same time and then gradually cutting each one out, one by one, to see what works; or stopping everything then adding them back in one by one.

17.Input and output

Reducing food intake (a little) can help. I wouldn’t have got quite so bunged up if I hadn’t eaten quite so much! Obviously we all vary and some people are under-weight or need to follow a special diet. On the whole, however, many of us would benefit from cutting down a little on what we eat. And, the less you put in, the less there is to get stuck inside!

18.Wet food

If the problem is constipation & hard stools, eating “wetter food” (eg soups, stews, curries) can also help a little. If you live on crisps, you’re asking for trouble.

19.We can all learn

Even clued up healthy eaters who think they know a lot about diet and lifestyle may benefit from a food diary & having their diet tweaked by a dietician. I’ve learned new stuff from the professionals I’ve seen. Even if we’re doing everything we know 100% spot on, science might have moved on since then. There are lots of fad diets and food myths we might have fallen prone to without noticing, so reviewing a food diary or having a professional do so can lead to improvements – even small tweaks – being found. And, with constipation, it’s these little things that add up.

We might even learn that things we thought were healthy options were actually contributing to bowel problems. For instance, taking supplements is always good, right? Wrong. For instance, taking too much vitamin C can cause loose stools, whilst taking iron tablets can harden stools. Fibre is always a good thing, right? Wrong. For some, a high fibre diet can irritate the bowel and lead to bloating and frequent loose stools. What you may think is IBS may resolve entirely on a lower fibre diet. Exercise is always good for you, right? Wrong. For some, high impact exercise can lead to involuntary bowel evacuations (“Doing a Paula”). If so, stick to gentler exercise. Or practice bowel control techniques.

20.Try it

Even if you’ve tried something before, it may be worthwhile trying it again. Bowels can be contrary beasties. “I’ve tried everything already” may mean you miss out on doing something that now works.

21. Tummy massage

Another way to stimulate the bowels to start moving is with tummy massage. Use the heel of your hand to make a big circle in a clockwise direction (the direction the bowels go in). Alternatively, lie on a hard surface face down and roll around. Or lie on your back with your legs in the air and cycle, to get the tummy muscles moving. All very elegant!

22. A hot bath

As Sylvia Plath wrote in her novel The Bell Jar, “There must be quite a few things a hot bath won’t cure, but I don’t know many of them.” A hot bath is another great way to get the bowels moving.

23.Specialist help

Ask your GP for a referral to a specialist clinic. If at first they say there isn’t one (my otherwise excellent GP did), do your research so you know the right terminology to use when asking for the service. For instance, I’ve had referals to a community dietician; a colposcopy clinic; a continence clinic; a bowel education group; a colonoscopy consultant; and a hospital consultant for anatomical investigations.

24. A tricky balance

Once you start taking steps to actively treat constipation, you might push your bowels the other way. Oh joy! Your bowels become as unpredictable as climate change. You might swing back and forth between the two before getting it right. Ho hum. You’ll get there. And in the meantime, be prepared.

25. The pitfalls of syndromes

If, along your constipation journey, someone mentions IBS, be careful how you use the diagnosis. With family and friends it may provide a label that helpfully enables you to side-step that awkward conversation about symptoms. However, if you’re going for medical treatment and you mention IBS, you’ll most likely see the doctor’s eyes glaze over. In essence, a syndrome is the medical profession’s way of saying they don’t know what’s wrong with you. It’s saying you’ve got a collection of symptoms they don’t know how to treat. It is a label that says to a medical professional, “Nothing you do will make the patient better. Next!” Use with care.

If you have any tips for easing constipation that you’d like to share, please feel free to comment below. Happy pooing!

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• My Storify of tweets – Psychiatric medication and constipation
• My Storify of tweets – the original 20 tips to beat constipation
• My Storify of tweets – some thoughts on starting a tweet chat on constipation
• Charlotte Walker’s blog post – Five hundred miles: remission versus recovery
• NHS Choices – Constipation
• My blog – Hot baths and how I relax
• Resources page – Medication – including links to the Choice & Medication website (“Probably the world’s biggest, best & most comprehensive independent website for partients, carers & professionals about choice & mental health medication.”) and The eMC (“The electronic Medicines Compendium (eMC) contains up to date, easily accessible information about medicines licensed for use in the UK)
• The healthy eating website produced by United Biscuits, manufacturer of biscuits and snacks, including McVitie’s biscuits, Jaffa Cakes, Hula Hoops, McCoy’s, Skips and KP Nuts. Yup, they have a healthy eating website. I read it on the back of my crisp packet.

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