Growing up is tough enough for any young person approaching puberty. But for Aimee Challenor the challenges she faced as a 10-year-old were much harder: “It struck me when I was about 10 or 11 that I was a girl. I couldn’t put my finger on it but something wasn’t right. I was in year 6 and I left my parents a letter on their bed before I went to school one morning. When we talked about it later they were very supportive, but no one knew what trans was. So I went back into the closet.”
During the next six years Challenor, now 19, felt anxious, isolated, lonely and depressed. “I spent my time at secondary school feeling pressured by society to be somebody that I was not. I wasn’t able to be myself; there was always that nagging feeling at the back of my head, so I didn’t take opportunities and grab them. I didn’t reach my potential and my education suffered as a result.”
It wasn’t until her school graduation prom that she decided to come out as trans: “It was then that articles about trans started to appear and I discovered that there was a word for it. I found the trans guide published by the Tavistock and Portman NHS foundation trust and decided to come out at my prom – it was the day before I was due to leave school.”
Her mum helped her with her dress and one of her school’s teachers did her makeup on the night: “Some of the staff were very supportive, but they were not in the school leadership team. Generally, I didn’t get any support from my school – it wasn’t up to speed on the Equality Act and they wouldn’t let me wear a dress to the prom because they thought it was unnecessary attention seeking; they said it made the school look stupid. But I dug my heels in. I was incredibly nervous on the night, but it felt so positive – for me it reinforced what was right.”
Challenor is in the process of transitioning from male to female but feels “in limbo” as she waits to continue adult gender identity services: “I’ve been out now for three years and publicly present as female, but I wish I could have come out younger and not have had to wait until I completed puberty.”
Today Challenor speaks on LGBTIQ (lesbian, gay, bisexual, transgender, intersex and questioning) issues for the Green Party in England and Wales and also contributed to charity Stonewall’s Vision for Change report, published in April, which spells out what still needs to be done to deliver equality for the UK’s trans community. Challenor says: “I speak to schools about trans issues and I am the first openly trans person to work for a political party. I think trans [people] need to show that you can be trans and reach your potential.”
Sarah never planned to take antidepressants for 14 years. Three years after she began taking them, when she was 21, she went to her GP and asked to stop: 20mg of Seroxat a day had helped her live with anxiety and panic attacks, but she began to feel uncomfortable about being on medication all the time. Her doctor advised her to taper down her medication carefully.
At once, “I was a mess,” she says. “I thought I was losing my mind. My appetite completely went. I lost the best part of two stone. I was anxious constantly. My mouth was dry. It was difficult to sit and be calm.” She became withdrawn, refusing to see friends, and remembers asking her mother to get her a couple of boxes of paracetamol, thinking, “I’m going to have to take all these tablets, because I can’t live like this.”
Sarah’s doctor encouraged her to go back up to 20mg. “Within a week, I was much better. I feel anger when I look back. That wasn’t me relapsing, that was withdrawal. But I was so unwell, I didn’t stop to think, ‘I’ve never had this before.’ I truly thought it was me. Now the only reason I am on the drug is because I am dependent upon it. And that is not good enough.”
Prescriptions of SSRIs (selective serotonin reuptake inhibitors), the most common type of antidepressant, have doubled in the past decade. There are now more than 70m prescriptions dispensed in the UK in a year, the “greatest rise” of any drug in the last year, according to NHS research. But while the side-effects of starting and then withdrawing from these drugs are reasonably well known (the patient information leaflet accompanying the SSRI Seroxat is six pages long), there is very little research into the long-term effects of using antidepressants.
Last year, an all-party parliamentary group began hearing evidence as to whether there is a link between a measurable rise in mental health disability claims – 103% between 1995 and 2014 – and that in antidepressant prescriptions. (Claims for other conditions fell by 35% in the same period.) “We need to have a serious rethink about current levels of prescribing, because it may well be that the drugs are in fact contributing to the disability burden,” Dr Joanna Moncrieff, a consultant psychiatrist and senior lecturer at University College London, told the committee.
Reports both anecdotal and clinical have included side-effects such as constant pain, an altered sense of smell, taste or hearing, visual problems, burning hands and feet; food or drug intolerances and akathisia (the medical term for a deep inner restlessness). When a patient begins tapering down their dosage, these effects are generally ascribed to the drug leaving their system; if it is long after withdrawal is supposed to be over, however, patients are often disbelieved (according to the drug companies, withdrawal should take just two weeks for most people, though they acknowledge that for some it can be months).
Professor David Healy, director of the department of psychological medicine at Cardiff University and author of 22 books on psychopharmacology, believes that antidepressants are overprescribed. “If you go into your average doctor – if you’ve been off the drug for half a year or more – and you complain [of a range of symptoms] and say, ‘I think it’s caused by this pill I was on’, he or she would say, ‘It’s been out of your body for months. You’re neurotic, you’re depressed. All we need to do is put you on another pill.’”
GPs, Healy says, are “relying on your word, and if it’s a choice between believing what you say and relying on what drug companies say to them, they [tend to] believe the drug companies”. Healy, who has been a consultant for, and expert witness against, most of the major pharmaceutical companies, has long argued that long-term side-effects are routinely ignored or misunderstood.
But many experts believe these drugs do more good than harm. “Most of the people I see who have moderate to severe depression benefit from them,” says Daniel Smith, a professor of psychiatry and researcher into bipolar disorder at the University of Glasgow. For some, medication can be no less than “transformative. It can get them through a really critical period of their life.”
However, when it comes to long-term impact, especially after a person stops taking SSRIs,Smith says it can be hard to work out which symptoms relate to the drug use and which to the underlying conditions. “There’s obviously an issue of cause and effect. How can we be certain the SSRI caused it? Depression affects libido and sexual interest. How much [of the reported effects] is depression and/or anxiety symptoms coming back?”
By 2003, worldwide sales of Seroxat, manufactured by GlaxoSmithKline, were worth £2.7bn. Photograph: Alamy
SSRIs have beenaround for more than 40 years, but grew in popularity in the late 1980s and 90s after pharmaceutical companyEli Lilly launched fluoxetine, otherwise known as Prozac. Time magazine put the drug on its cover twice, asking, “Is Freud finished?” and describing SSRIs as “mental health’s greatest success story”. In 2001, a landmark report on a clinical trial into paroxetine (sold as Seroxat in North America and Paxil in the UK), called Study 329, concluded that it demonstrated “remarkable efficacy and safety”. Study 329 led directly to a massive increase in prescriptions: by 2003, worldwide sales of Seroxat (manufactured by GlaxoSmithKline) were worth £2.7bn.
But concerns were raised about the study –the US food and drug administration (FDA) officer who reviewed the data disagreed with the findings, calling it a failed trial – and in 2015 the British Medical Journal published a re-evaluation. Seven authors went through as many of the thousands of individual case reports as they could, and found not only that “the efficacy of paroxetine… was not statistically or clinically different from placebo”, but that “there were clinically significant increases in harms, including suicidal ideation and behaviour”. The original study reported 265 adverse reactions; the BMJ found 481. The re-evaluation also found that psychiatric responses were grouped together with “dizziness” and “headaches”, rather than given their own category. In 2003, the UK banned the use of Seroxat by anyone under 18; and in 2004 the FDA required a “black box warning” on all antidepressants, its strictest level of patient warning.
“Patient safety is our number one priority,” a GlaxoSmithKline (GSK) spokesperson tells me. “We believe we acted responsibly in researching paroxetine, monitoring its safety once it was approved and updating its labelling as new information became available.”
It’s more reliably predictable that they’re going to get rid of sexual function than get rid of depression
Many SSRI users report blunted emotions, even long after they have ceased taking pills, and an impact on sexual function. “They should be called anti-sex drugs rather than antidepressant drugs,” says Jon Jureidini, a child psychiatrist of 30 years’ standing, a professor of psychiatry and paediatrics at the University of Adelaide and co-author of the BMJ study, “It’s more reliably predictable that they’re going to get rid of sexual function than it is that they’re going to get rid of depression.” Again, some people find this persists long after they cease taking the drug. One person I spoke to, Kevin, had taken Prozac for six months when he was 18; now 38, he hasn’t had an erection since.
Last September, Healy and colleagues published a further examination of the data gathered for Study 329. This data followed the trial participants for six months after they started taking paroxetine (the “continuation phase”) and while they were tapered off it. GSK, which in 2004 published a clinical study report, had argued that “the long-term safety profile of paroxetine in adolescents appears similar to that reported following short-term dosing”. Healy and co, however, concluded that the “continuation phase did not offer support for longer-term efficacy”. More alarmingly, they found that the taper phase, when patients were being taken off the drugs, was the riskiest of all, showing a “higher proportion of severe adverse events per week of exposure”. This, they said, opens up the risk of a “prescribing cascade”, whereby drug side-effects are thought to be symptoms, so are treated with further drugs, causing further side-effects and further prescriptions – thus increasing the risk of long-term prescription drug-dependency.
In October, the British Medical Association published its response to a two-year fact-finding exercise into long-term use of psychoactive drugs. It noted that while benzodiazepines, z-drugs, opioid and antidepressants are “a key therapeutic tool”, that their use can “often lead to a patient becoming dependent or suffering withdrawal symptoms… the evidence and insight presented to us by many charity and support groups… shows us that the ‘lived experience’ of patients using these medications is too often associated with devastating health and social harms”; it was therefore, the report concluded, a “significant public health issue”.
The BMA made three key recommendations: first, and most urgently, that the UK government establish a 24-hour helpline for prescribed drug dependence; second, that it establish well-resourced specialist support units; and third, that there should be clear guidance on prescription, tapering and withdrawal management (they found the current approach to antidepressants, in particular, to be inconsistent: too many patients were suffering “significant harm”). There are also increasingly urgent calls for studies into long-term effects that are not funded by drug companies, because, Moncrieff says: “We don’t have very much data. This research is really important, but hasn’t been done. It’s a massive blind spot. It’s extraordinary – or maybe, given the pressures and interests at work, not extraordinary at all – that it hasn’t been filled.”
In March this year, members of the BMA, along with MPs and researchers from Roehampton University, went to parliament to lobby Public Health England, armed with research estimating that there are 770,000 long-term users of antidepressants in England alone, at a cost of £44m to the NHS per year (a figure that does not account for the cost of GP appointments, or the impact of side-effects, withdrawal effects and disability payments).
“I think you have to adopt a very conservative approach,” says psychiatrist Jon Jureidini. “These are brain-altering drugs, and our overall experience with brain-altering drugs of all kinds is that they tend to have a detrimental effect on some proportion of people who take them long term. All we know about the benefits is from short-term symptom-reduction studies. The careful prescriber needs to say, ‘Well, in balancing the likely benefits and harms, I need to be very cautious about how much benefit I’m expecting, and I need to be very generous about the possibility that the harms might be more than they appear to be.’”
Quite a few long-term users, such as those I spoke to below (and who wished to be anonymous), would agree.
‘Tapering off is the hardest thing I’ve ever done’:Sarah, 32; has taken Seroxat for 14 years
I was prescribed Seroxat when I was 18, the year I started university. I grew up with a disabled sister, so things at home were very stressful, and I had a history of anxiety and panic attacks. I had counselling, but the problems persisted, so I went back to the GP. I don’t remember everything that was said, but there was no conversation about side-effects.
Within the first two weeks of starting Seroxat, I remember I was sitting in the front room watching TV when out of nowhere I had this intense feeling of heat, like an electric shock. It started in my hands, went all the way up my arms and through to my head.
The GP said it was probably just my body getting used to the drug. And after a few weeks the weird sensations did ease off. I had a fabulous time at university. I still had panic attacks, and there were certain situations I would avoid – as I still do – so it wasn’t a wonder drug, but there were no major problems.
But in 2006 I tried to come off it. There were a couple of Panorama documentaries about the side-effects and I was starting to become concerned. The GP said, “That’s fine, but do it gradually, over three weeks.”
I thought I was losing my mind. I was going to work, but it was difficult to get through the day. My mouth was so dry
I immediately became incredibly unwell. I thought I was losing my mind. I was going to work, but it was difficult to get through the day. My mouth was so dry, I was constantly drinking water. I had bizarre thoughts – not hallucinations – that were frightening or distressing. I had a strong sense of detachment from reality.
Eventually, the doctor said, “Look, you coming off is obviously not working: we need to get you back to 20mg.” Within a week I was much better.
A few years later, when I realised my mental health was getting worse, even though I was on the medication, I started to do some research, reading case studies about withdrawal. I find it so offensive when a GP says, “This is who you are.” I didn’t have these symptoms 10 years ago. I didn’t have this sense of detachment. I saw various psychiatrists. They just kept saying, “The drug is safe, you need to be on it.” A couple of others told me the reason I was having these problems was because I wasn’t taking enough. Another said, “If you were diabetic, you’d take insulin and you wouldn’t have an issue. Why are you so bothered about taking this drug?”
I’ve been on it since I was 18, so I don’t know who I am without it, as an adult. Who knows? I might have all kinds of problems, but I need to know I’ve tried. Tapering off is the hardest thing I’ve ever done. It’s taken me three years just to get from 20mg to 5mg. I’m no longer with my partner – we were together for six years. I believe Seroxat has played a part: it affected my moods, it made my anxiety worse and, by necessity, I’ve had to be selfish, really. I don’t want to say all my problems are to do with Seroxat, because they’re not. But I do believe that it has caused me harm.
‘I don’t have much of an interest in interacting romantically or physically with the opposite sex’: Jake, 24; took SSRIs for eight years
I had been dealing with symptoms of OCD and anxiety for a lot of my childhood. It’s in my family, affecting two siblings and one parent. I was prescribed Zoloft when I was 12; I took a variety of SSRIs, Zoloft to Prozac to Lexapro, and then two others, for eight years.
Did they help? You know, I can’t really tell you, because I got through school. I got high marks, I had a lot of friends. So, in that sense, they must have helped. That’s the thing: for people with major depression, it’s easy to say, this has a measurable effect. But I kept taking them just because that’s what I’ve always done.
I went to university right out of school. I did very poorly. I had a bit of a breakdown, isolating myself, not sleeping. I was still on medication. I came home and enrolled at a community college. That was my worst period – I was very depressed. And I started to think, “I’ve been on these medications a long time. I’m not doing well – why not get off them?” I don’t recommend this at all to anyone, but I stopped going to a psychiatrist and took myself off.
Prozac. Photograph: Getty Images
For months I had trouble sleeping. I was jittery. I had brain zaps. My anxiety was pretty ramped up. I would feel numbness in my extremities – generally my arms. My psychiatrist told me these were just normal withdrawal symptoms, and they’d be gone in four to six weeks: “Anything you feel beyond that is your anxiety and depression returning.” Basically, if you still feel anything beyond this window that the medical community has established, it’s all in your head.
Eventually I went back to school full-time, and I remember doing OK, feeling somewhat better.
I’ve now been drug-free for four years. What’s lasted are the sexual side-effects. They were definitely worse in withdrawal than they had been on the drug, even though I didn’t really realise or understand it at the time, primarily because I started to take SSRIs at 12. While my brother took the same medicine over the same period and had a normal sexual life, I had a lack of sexual interest. I had erections, and I have regularly masturbated my entire life. But I don’t have much of an interest in interacting romantically or physically with the opposite sex.
I didn’t even start thinking about sex until a couple of years ago. It’s almost like I woke up one day and thought, “OK!” I started getting these windows – days or weeks – when normal sexual feelings would appear. But they’re new to me and I don’t know what to do about them. And because I don’t know what to do, I get anxious, and the anxiety kills any feeling – and then I’m anxious because I’ve lost all my feeling.
Online, I’ve come across a big asexual community. Some also took antidepressants; I think there are a lot of people like me out there. I’d like to think that if I keep going to counselling and sleeping and eating properly, I can rectify these things.
In the end, it’s about pros and cons. If you’re lying in bed and can’t get up, is it better to function? If it was up to me, I’d say that, barring extreme circumstances, nobody under 18 should be prescribed these things. Your brain develops around them. Drug companies should be thinking of the long-term effect on people who can’t even consent.
‘If I missed a dose, I’d get shocks down the side of my body’:Chris, 43; has been taking Seroxat for 26 years
I was originally prescribed Seroxat for mild anxiety about my GCSEs. It was 1991, about the time GlaxoSmithKline released Seroxat. I was one of the first people to be given it.
I was prescribed 20mg, the basic dose, to start with. It helped me: I got through school, I went to uni, I went to work. But I had side-effects from the off: profuse sweating, low libido. I’m quite a placid person, but I became aggressive. I never suffered, in the beginning, with the suicidal thoughts that people talk about now, but what I did notice was that if I missed a dose – especially after eight years of taking it – I’d get shocks down the side of my body. I’d be nauseous, my limbs would become weak. I’d be in a constant state of confusion and was very impatient. I couldn’t communicate well with people. I said this to the doctor, and he said, “We’ll up the dose to 40mg.” That was 1998.
I tried to go back to 20mg, but my words became slurry, so the doctor put me back up to 60mg
The 10 years after that weren’t too bad. I managed to work, as a sales rep, for 18-20 years. But by 2012, by which time I was up to 60mg, I had tried on numerous occasions to withdraw. I tried to go back to 20mg, but my words became slurry, so the doctor put me back up to 60mg.
By the time I was 38, even that wasn’t enough. I tried to take my life. The doctor wouldn’t prescribe a higher dose. I couldn’t do my job, I couldn’t concentrate, I couldn’t drive. A psychiatrist once said to me that coming off Seroxat is harder than quitting heroin. That really hit home.
I have now been unable to work for four years. I’m still seeing a psychiatrist. I’ve also been diagnosed with fibromyalgia: constant tiredness, aches in the neck, and in the lower back and lower limbs. I’m 43 and still live with my mum and dad.
I also have no libido. Since the age of 30, I have had no feelings in that regard whatsoever. I have had relationships, but they’ve all failed. I haven’t been in a relationship for 10 years, which is a long time to go without sex, but I just don’t get the urge.
I don’t really have emotions, to tell you the truth. The drug takes your emotions away. I’m sort of existing, not living.
And when the drugs do work…
‘I wanted to be able to feel good when good things were happening, bad when bad things were happening’
BySimon Hattenstone
I suppose I was a depression snob. A purist. Why should I take antidepressants? Yes, there was something rubbish about crying all the time, not functioning, being unable to answer simple questions because of the fug in my head. But, hey, at least I was true to myself.
My depression went back to my late teens. I didn’t like to think of myself as depressive, because depressives were losers. And I didn’t think I fitted the bill: I was pretty funny and able, and I could get girlfriends. I guess most depressives don’t think they fit the bill.
It might have been genetic. My dad had paralysing depression, and so did his father. As a young boy, I’d spent three years off school with encephalitis – an inflammation of the brain that is often fatal. Survivors are often left with depression.
I remember as a teenager being on holiday in Greece with friends. The weather was gorgeous, and I thought, “Why can’t it piss down, because then at least I’d have a reason to feel this way?”
That is what I always craved – objectivity. To be able to feel good when good things were happening, to feel bad when bad things were happening. I hated the fact that my feelings rarely correlated to what was going on in my outer world.
In my 20s, I got by. I held down a good job, fell in love, had kids, made friends, had a pretty good life. But things came to a head when my best friend killed herself. I’d find myself weaving in between traffic wondering what the impact would be like. I took a period off work and gratefully accepted my Prozac prescription.
Things had changed since I first rejected them. Prozac looked cool (lovely green-and-white pills) and rock bands wrote great songs about it (even if REM’s Shiny Happy People was supposed to be dystopic). After telling people I was off work with depression, I ended up feeling like a priest at confessional. It turned out that virtually everybody I knew was a depressive and pilling their way out of it; now it was “our secret”.
I would try to come off the pills and felt rubbish again – not more rubbish than before, but the same. So I returned
Initially, Prozac made me feel sick. And then magically, after a couple of weeks, I felt lighter, as if something had been lifted. I could hear questions properly, answer logically, enjoy a sunny day.
My partner said I was transformed. Occasionally, I would try to come off the pills and felt rubbish again – not more rubbish than I had before, but the same. So I returned, and after a while, I thought, “What’s the point of even thinking about coming off the pills if they make life work for me?”
There are times now when I wonder if I weep and fret and withdraw too much, and whether I’m becoming immune to the Prozac. But on balance I think not, because life is still so much better than it was.
If Prozac was no longer working for me, would I stop taking it? Probably. Would I stop taking antidepressants full stop? I doubt it. I’d simply look for another super pill.
• Are you a long-term user of antidepressants? Tell us about your experiences
If you are affected by the issues raised in this piece, contact the Samaritans here.
Poppy Jaman, chief executive of the not-for-profit Mental Health First Aid England (MHFAE), believes Theresa May meant business when she pledged in January to make mental health a priority. Despite ministers being accused of breaking their promises after £800m in cash earmarked for mental health was last month redirected to offsetting wider NHS budget problems, Jaman argues that the government will come good.
“I think this government has already set a precedent for change, with two consecutive prime ministers making commitments to improve the outlook for those with mental health issues and attending to the prevention agenda,” says Jaman, referring to NHS England’s Mental Health Taskforce national strategy published in 2016. “I think it’s massively a great step that the current PM has made a public commitment to mental health.”
MHFAE runs training courses in how to identify the warning signs of mental ill health in others and help steer them towards appropriate support. Jaman has headed the social enterprise for almost 10 years, since it evolved from a government initiative within the Department of Health. She says she’s “feeling confident” the Conservatives recognise the significant toll mental health problems can take on individuals and wider society. By way of illustration she points to the imminent roll-out for secondary school staff of a government-funded schools training course delivered by MHFAE to address mental health issues among young people. The goal is to have “mental health first aiders” in place who can help to identify pupils with mental health challenges, ideally before they reach a crisis point. The programme aims to train staff in more than 1,000 schools by 2020.
Evidence over the past decade from MHFAE’s training to more than 150,000 individuals – such as NHS staff, charity workers and employees at large corporations including Unilever and WH Smith – shows it can contribute to the broader “public health prevention” and wellbeing agenda, says Jaman, by “giving people the tools” to recognise signs of mental difficulty.
The jobcentre service needs staff who understand mental health so people get the right support
The mental heath first aid approach is ostensibly an adjunct to standard first aid and Jaman has been campaigning to put the two on a par. This includes supporting a push to amend regulations around first aid within the Health and Work Act, so that all organisations are required to have mental health first aiders in place, and an obligation to deliver mental as well as physical first aid. An early day motion last year calling for such a transformation was backed by about 500 MPs, including Norman Lamb and Frank Field. Implementing it would be “a big leap for equality” and parity of esteem between mental and physical health, Jaman argues.
“I truly believe that making this legislative change would have a big positive impact because it would shift the dial on how employers have to think about the mental and physical health needs of their workforce.”
A third-generation British Bangladeshi, Jaman, 40, says her early grassroots professional work, coupled with having experience of depression as a young woman, helped her to develop an understanding of the challenges facing people with mental health problems, especially among diverse groups. And having grown up in a deprived ward in Portsmouth and left school at 16 (she later got an MBA), she says she is cognisant of how poverty and racial inequalities affect mental wellbeing and access to care. “There is a plethora of data on health outcomes, job outcomes and opportunities for the black and minority ethnic community and when you overlay that with the prevalence of mental ill health and outcomes, the odds are stacked against them.”
Prince William and Lady Gaga discuss mental health for Heads Together – video
So it’s no surprise that Jaman does not underestimate the significant impact of current government policies such as sanctions and fitness-for-work tests for people living with mental health problems. One area in which she is anxious to see improvements is help for people who are unemployed, many of whom have a mental health diagnosis.
She refers to a recent public call by an alliance of mental health professional organisations including the British Psychological Society for a suspension of the government’s sanctions programme because of its negative impact on mental wellbeing and for statutory support for creating psychologically healthy workplaces.
The same group also recommended increased mental health awareness training for jobcentre staff, which Jaman agrees is necessary. “It [the jobcentre] service needs people who understand mental health so that people are getting the right support,” she says. Asked how this is conceivable in a jobseekers system that advocates have repeatedly argued is hostile to mentally vulnerable people, she responds that change needs to come from “the leadership” at the Department for Work and Pensions. “I think there is a wave of change coming around this,” she insists.
When it comes to nudging the government in the right direction, Jaman is clearly a pragmatist. It is important to challenge government policies “where we don’t think things are right”, she argues, but ultimately, “for me it’s about ‘let’s work with whoever we need to work with’.”
‘The most disconcerting side-effects were disturbed sleep and night sweats, waking up literally wrung out, with no discernible pattern to either,” says Kirsty Wark. She sounds as measured, informed and professional as is her norm when presenting Newsnight but Wark is talking about something much more personal than current affairs: her menopause.
Wark is fronting a documentary that will air on BBC1 on Thursday: The Menopause and Me. Her involvement in the programme comes from her own sudden and unexpected experience. She had a “medical menopause” at the age of 47, after a hysterectomy and after coming off hormone replacement therapy(HRT) because of fears over its reported link to breast cancer.
“Suddenly, I had no oestrogen and the disturbed sleep and night sweats started. By the time I started making the documentary, nothing much had changed for me in 12 years and I just coped with it, as so many others do.”
But, aside from the obvious physical battle she had to endure, what Wark also struggled with was the apparent silence surrounding the menopause. In many households it is still not discussed and, in those that do broach the subject, it is often talked about in hushed tones as “the change”.
“It’s not so long ago that the hormonal changes that came with menopause were regarded as madness – the madwomen in the attic,” says Wark. “Mythology has a lot to answer for.”
Just 50 years ago, menopausal women tended to suffer alone, mortified by hot flushes and bewildered by hormonal mood swings. There was also a general acceptance that they should retire into the shadows in case it bothered anyone else. The very idea that work colleagues might know or show empathy was anathema.
It has, however, long been the subject of comedy, featuring in episodes of Father Ted and Absolutely Fabulous, as well as in routines by Les Dawson. Jennifer Saunders – who had a cancer-induced menopause – is both funny and uplifting in the Wark documentary. “There’s a moment when you realise everything’s changed,” she says. “Your metabolism, energy levels, skin, hair … so I just had a large glass of champagne and got on with it.”
This 2001 episode of Absolutely Fabulous is called Menopause – the subject crops up frequently on comedy programmes. Photograph: Brian Ritchie/BBC
Not until relatively recently has it started to be something that is not ignored or giggled at, or both – and this is partly owing to the willingness of celebrities such as Wark and others to speak openly about it.
In a recent interview with People magazine, Gillian Anderson talked about a sense of life falling apart when she experienced perimenopause, the hormonal transition prior to menopause. “All of a sudden, I felt like I could handle nothing. I felt completely overwhelmed,” Anderson said. “When I talked to the specialist, she said she often gets phone calls from female CEOs screaming, ‘I need help now! I’m losing my mind!’ I felt like somebody else had taken over my brain.”
She credits Angelina Jolie with helping change the stigma when she spoke openly about her menopause after having her breast and ovaries removed because of being genetically at risk of breast and ovarian cancer. “Perimenopause and menopause should be treated as the rites of passage that they are,” Anderson told People. “If not celebrated, then at least accepted and acknowledged and honoured.”
Cynthia Nixon, famous for her role in Sex and the City, has also been open, although she had a completely different experience from Anderson, telling the Telegraph that she and her wife are going through the menopause together. Nixon wasn’t upset, revealing: “There has been no sadness for me, because once you hit 50, you’re done.” She cites the advantages of passing childbearing age and experiencing it together. “Although I have a six-year-old, the freedom that comes from no longer being fertile is huge.”
Those differing experiences also highlight a potential problem in being more open about menopause, since symptoms can vary wildly. We have gone from a culture where it was rarely mentioned to, in some cases, one where women suffering badly ask for special consideration in the workplace. This leads to inevitable scepticism not just from men, but from other women who simply don’t suffer to the same extent and feel their colleagues should just put up with it.
Wark’s response to this is to suggest we should all be a bit kinder in the workplace if colleagues aren’t feeling well – which is possibly the best approach.
Wark’s programme is also for partners, husbands, family, friends and employers, to help give them an understanding of what women go through when they enter the menopause. Every angle is explored, with many women and one husband talking about loss of libido, weight gain, hair loss, joint pain and the almost unspeakable vaginal atrophy.
It’s also useful as a reminder that times change – everyone recognises the classic image of menopausal women as witch-like harridans exhibiting seriously odd behaviour – and that the modern menopausal women is more likely to be leading a busy and satisfying life.
Many confident, articulate women are now talking and writing about the menopause, with India Knight and Christa D’Souza producing highly entertaining books, and Miranda Sawyer writing on the subject with such penetrating honesty and empathy that you wonder if she has been poking about in your own mind.
Gillian Anderson spoke of a sense of her life falling apart following her perimenopause in an interview with People magazine. Photograph: Anthony Harvey/Getty Images
Many women live a third of their lives post-menopausal, often at the peak of their careers and still with big plans. Medical advances are also making a huge difference to women’s experiences – and how they are seen to be dealing with it by those around them.
Wark admits she was surprised by how much she learned during the making of the programme, particularly from Dr Heather Currie, chair of the British Menopause Society and consultant obstetrician and gynaecologist at Dumfries and Galloway Royal Infirmary in Scotland. Currie also runs the Menopause Matters website.
“Discovering Heather was on HRT was an absolute eye-opener for me,” says Wark. “The US study that prompted me to come off HRT has been considerably revised and HRT only increases the risk of breast cancer if you are already predisposed. I’m back on a small dose of HRT and think I’m starting to see my sleep improve.”
Currie says a new paper by Professor Robert D Langer demonstrates that errors in the study led to 15 years of unnecessary suffering for women who stopped HRT. “There’s a better understanding of risk,” she says. “For most women who commence HRT under the age of 60, or within 10 years of the menopause, it provides more benefits than risks, including symptom control, as well as improved urogenital, bone and cardiovascular health.”
She adds: “The study didn’t show any statistically significant increased risk of breast cancer or heart disease in women using HRT, yet the highly publicised conclusions emphasised these risks. It’s hard to come back from such panic-inducing headlines but I think we are getting there, with more women talking to their GPs about the consequences of menopause and treatment options.”
WHI Study errors led to 15 years of unnecessary suffering for women who stopped HRT.
Carol Smillie, another famous face who has previously spoken openly about incontinence and periods, thinks women should not be afraid to talk with GPs, friends and family about the menopause. “We live in a far more tolerant society than our parents did,” she says. “Look how far we have come with issues like gender and disability; menopause is more openly discussed and therefore better understood now.”
It is a sentiment echoed in India Knight’s book, where she writes: “There’s a whole third of life to go. That’s not an ending – it’s a thrilling new beginning. And as you approach the years ahead, you do so at the height of your powers. You know more than you’ve ever known. You are the wisest you’ve ever been.”
THE FACTS
The menopause is when a woman stops having periods and cannot get pregnant naturally. It usually occurs between 45 and 55, as oestrogen levels decline. The average age in the UK is 51.
Common symptoms include hot flushes – sudden body temperature changes that produce heat and sweating – night sweats, irregular periods, decreased libido, vaginal dryness and mood swings.
Treatments include HRT and gabapentin, which have received mixed reviews in treating hot flushes and can have significant side-effects.
The most significant recent development is the clinical trial of a new drug carried out by Dr Julia Prague and colleagues at Imperial College London that promises the development of an effective way of reducing hot flushes. The drug is currently undergoing further trials and if these are successful it could make a considerable difference to women’s lives.
Alternative remedies include bio identicals and evening primrose oil.
Being a girl or woman with autism is hard: it’s only in the past two to three years that many professionals have begun to recognise that the condition is not limited to boys and men. But what’s harder is to be a mother with autism – and harder than that, is to be a mother with autism, of children with autism.
Experts say that there is a hidden pool of mothers who have grown up with undiagnosed autism. These women often only recognise their own condition when researching their children’s symptoms.
About a fifth of people with autism are thought to have been diagnosed as adults, although no national figures for adult diagnosis are available. Women with autism are most likely to remain undiagnosed: a survey by the National Autistic Society found that twice as many women were undiagnosed compared with men (10% against 5%).
Even once diagnosed, mothers with autism often hide their condition from the outside world, terrified their children will be removed from them if social workers misinterpret their autistic traits as indicating potential harm to the child.
“Their own autism, often undiagnosed, means they put professionals’ backs up and can be accused of causing or fabricating their children’s condition,” said Dr Judith Gould, the lead consultant and former director of the Lorna Wing Centre for Autism who developed the first and only female-specific diagnostic tests, and who trains doctors in how to recognise late-adult female diagnosis.
Laura James
Married with four children aged 19 to 26 – two of whom are neurodiverse and two neurotypical – Laura James has written Odd Girl Out, the first memoir by a British woman with autism to be published by a mainstream UK publisher. She was diagnosed last year.
“I mothered my children in a very different way to a neurotypical mother. For a start, I never told them off about anything. It just doesn’t seem logical to me. If they’re doing something you don’t like, it’s because you have a preconceived idea of how children should be, behave or look. That’s illogical. If, on the other hand, they are doing something dangerous, then it’s much more effective to sit down and discuss it with them.
If they’re in trouble, I’ll do everything practical I can to help them. It would be illogical to punish them
“The consequence of this approach is that I’ve got one child who has always had straight As and is now heading for a first at university – and I have another child who has never passed an exam and doesn’t care. I’m equally proud of them both because I want my children to be content, happy and in a place of safety. To me, academic success isn’t a logical step towards that goal. I love my children desperately and would do anything for them, but I do think I don’t understand that fieriness that comes about when people talk about parenting. I simply don’t feel that sense of passion that neurotypical parents seem to feel.
“It could be because of this lack of passion that I have a different relationship with my children than most parents do: they like to hang out with me and message me just as much as they do their friends, and there’s nothing they would not tell me because they know I would never, ever get angry with them. If they’re in trouble, I’ll do everything practical I can to help them, which means it would be illogical to get angry, upset or punish them.”
Nicola
Nicola, 39, was diagnosed at 34 after stumbling across information on autism and women when researching her son’s symptoms. Her son, Andrew, was diagnosed at two and Nicola received her diagnosis six months later. It took four years, however, to get last year’s diagnosis for her daughter, Marion, now eight (the names of her children have been changed).
“My children are happy and doing well at school. What other measure can there be that I’m a good mother? But because of my autism, I live in fear. Society thinks that autistic mothers are, first and foremost, a safeguarding issue. I’m terrified that social services will take them away from me.
My son loves his squeezes and hugs, and I give them to him even though I find it almost intolerable to do so
“I’m not worried about whether I’m a good mother or not. I know I am. I also know that my autism helps me be a good mother: autistic people get obsessions, and my obsession is making sure I’m doing everything I can to give my children everything they need, to love them, fight for them, and get them to adulthood healthy and happy.
“When my husband and I decided to start trying for children, I knew that I didn’t have any idea how to be a mother: my own childhood had been very unhappy. So I did loads of research. That’s how I discovered that children need cuddles and affection, and even though I don’t do touching – my idea of heaven is to live in a parallel non-touching world to everyone else – I make sure my kids get all the physical affection they need. My son loves his squeezes and hugs, and I give them to him even though I find it almost intolerable.
“Being autistic has meant my autistic children have grown up without the usual pressures and stresses that neurotypical parents can unknowingly subject their children to. My parents tried to force me to be ‘normal’ and to conform. They tried to force me to socialise, eat normally, behave normally. It was terrible: I grew up in fear and trauma.
“Before I knew that my children or I were autistic, it was natural to me to give them an autistic-friendly upbringing when they showed signs that was what they wanted. I didn’t think there was anything strange in it at all. And thank God I did: it means my children have never been stressed at home because of their autism.
“I’m not sure I would have been such a good mother to non-autistic children. I find it completely normal that my daughter plays by arranging her rubbers and then looking up more rubbers on the computer. It’s how I play, and I can do that with her for hours. But when my stepson wants to do imaginary play with his dinosaurs, I’m completely at sea.”
Melanie Mahjenta
‘My autism was ultimately a good thing’ … Melanie Mahjenta with Rosie as a baby.
Melanie Mahjenta was accused of a rare form of child abuse – fabricated or induced illness (FII) – by paediatricians and social services in 2015 during her fight to get her three-year-old daughter, Rosie, diagnosed with autism.
“Rosie was incorrectly diagnosed as not being autistic in 2013, despite the results from a clinical assessment which found she was on the spectrum,” says Melanie. “I believe the team rejected the assessment results because they had a basic lack of understanding about the different manifestations of autism, particularly in females. They refused me a second opinion, which is unlawful, and accused me of fabricating Rosie’s symptoms.
Part of being autistic is being unable to cope with injustice
“The team also failed to recognise that I was on the autistic spectrum, although I told them that I believed I was. They should have been able to recognise my behaviour – which I understand can be challenging – as typical of an autistic parent. Instead, in 2014, they held a safeguarding meeting to discuss whether I was exaggerating Rosie’s symptoms. This single area of concern led directly to a referral to children’s services and to Rosie being made a child in need, a decision that was taken without any formal review.
“When Rosie was made a child in need, my friends and family told me to stop fighting for her diagnosis. But I couldn’t stop: part of being autistic is being unable to cope with injustice.
“I understand that my autism makes me a difficult person to deal with: I don’t know when to back off when I know I’m right. Maybe I can’t always look people in the eye, so perhaps I come over as being shifty. Autistic people do hyper-focus, but they mistook my obsession as a sign I was unstable.
“But although those traits are hard for people to deal with, my autism was ultimately a good thing. Perhaps a neurotypical person would have thought the doctor knew best and backed off. Or they would have stopped fighting because they feared losing their child. But I fought on and because of that, not only has Rosie finally been diagnosed with autism, opening the doors for more support, but the ombudsman found in my favour on all my points, and even awarded us damages.”
Carly Jones
Carly Jones.
Carly Jones, 35, is a divorced parent of three daughters: Chloe, 18, Honey, 14, and Cherish, nine. “Chloe is neurotypical. Honey was diagnosed in 2008 at six with Asperger’s, and Cherish was diagnosed two years later with autism, at two years old. I was diagnosed four years after Cherish. It was 2014 and I was 32.
“Not knowing what was ‘wrong’ with me until I was 32 was catastrophic for my life in many ways. Not knowing I was autistic meant I didn’t cope at school and left with no GCSEs. I got pregnant at 15, suffered abuse, got into controlling relationships, and mistook users and bad people for real friends.
“But part of me is glad that I didn’t know I was autistic until I had already had children. I don’t know that I would have been brave enough to have had them, had I known I was autistic. I might well have been too cautious to think I could be a good mother.
I only admit that I’m autistic to better support my daughters and jump hurdles on their behalf
“There is so much judgment against autistic mothers that I consider myself genuinely lucky never to have been subjected to the interrogation of the social service professionals. It’s a constant cause of terror for autistic mothers. I only admit that I’m autistic to better support my daughters and jump those hurdles on their behalf. I’ve done it because what happens when my daughters grow up if they decide to become parents? What hurdles and preventions and heartbreak will they face if autistic mothers do not stand up today and tell people how we can be an utter success for our families?
“The level of care an autistic girl needs to be able to socialise is vast. Because I’m autistic, I understand and will spend the necessary hours helping them, before they go out socially, to work out everything that could possibly happen when they’re out and how they could react. We then work out a contingency plan for if something happens that we have not predicted. A neurotypical mother might not understand this, with the result that their children go out unprepared, or don’t go out at all.
“Because I’ve been the subject of it myself, I also know how common it is for autistic people to be horribly abused. I’ve had to find a way of helping my daughters to be mindful of their vulnerability without them seeing it as a deficit or negative, or becoming cynical. I also know, from my own experience, that autistic people often don’t tell you about the abuse they’ve suffered, because they assume everyone knows what they do. I’ve had to always remember to press my daughters to tell me everything about their days that could be important in keeping them safe and happy.”
• Amelia Hill will be in conversation with Laura James, who will answer questions about what it means to be a mother with autism at a Facebook Live event at 1pm on 19 April. Watch the live stream at https://www. facebook.com/theguardian
Gareth Parry has spent almost three decades supporting people with disabilities and mental health issues find work, but a recent mental health crisis of his own has given him a personal insight into the remit of the organisation he leads.
Parry has only ever worked for Remploy, starting as a trainee administrator and becoming chief executive a year ago. Problems in his personal life two years ago triggered depression. At the time, he was overseeing a government contract for workplace mental health support. “I knew a lot [professionally] about mental ill health, but I didn’t recognise it,” he says. “Suddenly I was on the other side. It reinforced the importance of organisations like Remploy; work gave me routine, structure, focus, when everything else in my life was in chaos.”
Parry became chief executive in May 2016, several months after disclosing his condition (“all credit to the board”), which he manages with antidepressants, cognitive behaviour therapy-style self-help and maintaining a reasonable work-life balance. Living with depression, he says, “has made me a better person to run an organisation like Remploy”.
Remploy is a big provider of welfare-to-work services, running £50m worth of contracts for national and local government, and for a range of employers from retailers and supermarkets to construction firms and facilities management companies in Great Britain. About 95% of its contracts are with government or other public bodies and agencies, such as the Care Quality Commission, the BBC and GCHQ, and for local authorities. Its government contracts include providing mental health support to employees and people in work who are referred to Remploy or who self-refer through the access to work programme; disability employment support through the work choice scheme; and running part of the much-criticised work programme for the long-term unemployed. It helps disadvantaged people to start, keep or return to employment, supporting 130,000 people into work over the past decade.
These 130,000 are just a proportion of the total who have accessed Remploy in some way. Some are helped to keep jobs when going through mental health issues, or supported in less direct ways, through internships, walk-in advice in high street branches, applications for work or training, online access for help with CVs or letters, and phone support.
For the workplace mental health support scheme, of 7,000 people helped by Remploy over the past five years, 92% still had their jobs six months later. In addition, supported internships have helped people with learning disabilities. “For a good supported internship scheme, let’s say a cohort of 10 people, it’s reasonable that six of the 10 will end up in work,” Parry says. He adds: “There is a challenge around what happens about the four who did not get work, but the point is you’ve got six into work.”
According to government figures, in mid-2016 in the UK, 49% of disabled people aged 16–64 were in work, compared with 81% of non-disabled people. The disability employment gap – the difference between the employment rates of disabled and non-disabled people – therefore stood at 32 percentage points.
Of Remploy’s own staff of 750, just under one-third are disabled. So how can you get more disabled people into work when government policy and cuts seem to undermine that end? Parry fudges the question somewhat. “Regime and government administrations change and evolve and have different types of impact,” he says. “Our role is regardless of that to get disabled people who want to work, into work.”
What does he make of a damning report published by the Equality and Human Rights Commission on Monday, showing that progress towards real equality for disabled people over the past 20 years is insufficient and “littered with missed opportunities and failures”, including a lack of equal opportunities in education and employment?
“I realise that we still have a long way to go to achieve true equality of opportunity for disabled people in our communities,” he says.
“Achieving real social inclusion has to be the goal and while having structures and regulation in place to support and protect people with disabilities and health conditions is important, societal change is vital. We must recognise, harness and nurture people’s abilities rather than see only a disability. I am heartened by the attitude of employers large and small that we work with and among whom this recognition is evident and increasing. Genuinely putting ability first not only makes sense in working towards a more equal society, but it makes good business sense, which in turn will increase employment opportunities for disabled people.”
Remploy has changed a lot in its 72 years of existence. Launched by the postwar government in 1945 to employ disabled second world war veterans in sheltered factories producing everything from furniture to shoes, the last factories closed in 2013, as the government and many campaigners regarded mainstream employment as preferable to segregated or sheltered employment. While some welcomed the move, others felt the closures abandoned disadvantaged people.
In April 2015, Remploy was outsourced to a joint venture between US-born international outsourcing giant Maximus – which has come under fire as the provider of the Department for Work and Pensions’ controversial “fit for work” tests – and Remploy’s employees, who have a 30% stake in the business.
But Parry denies that being owned by Maximus undermines Remploy’s status as a champion of disabled people. “I can understand why people would see it that way, but we have a strong social conscience, the employee ownership keeps us focused on that, the profits don’t go overseas to America, they go back into the [Remploy] business.
“We have to be commercially successful and sustainable – so we want to make a profit because that will ensure we continue to exist for another 70 years and impact positively on the lives of disabled people,” he says.
While Remploy is financially secure – it declared £2m profits in 2015 – it is having to seek more business outside the public sector. “The business will reshape because our core market – welfare to work – is resizing and reshaping,” says Parry. This autumn sees the government’s work programme and work choice scheme replaced by a single work and health programme – Remploy may get the contract in Wales – but there are fears that such reforms decimate the welfare to work sector. Austerity, says Parry, “speeds up the need to diversify”. Hence Remploy does more “commercial work” like supported employment schemes with big retailers, although 95% of its business is still with the public sector.
Parry wants more supported internships for learning disabled people (the employment rate for learning disabled people is 5.8%). No longer state-owned, he says Remploy is not apolitical, but “constructively critical”: “We think government could do a lot more for supported internships for people with learning disabilities.” He wants young people with an education care and health plan (for additional support to those with special educational needs) to get “automatic entitlement” to supported internships.
For now, Parry wants to challenge the negative language used to describe people with higher support needs as “unemployable” or “hardest to help”. “The welfare-to-work market needs to develop a much more aspirational language … it’s not about lecturing people to get a job.” Raising aspirations, he says, is the responsibility of business leaders. Parry’s own experience of depression underlined to him the importance of senior staff advocating for and demystifying mental ill-health. “You get sports stars and personalities talking about it, but not many business leaders. There’s still a taboo we need to break.”
CV
Age: 50.
Lives: Leamington Spa, Warwickshire.
Family: Separated, three children (14, 12 and 10).
Education: Mosslands comprehensive, Wirral, Merseyside; University of Hertfordshire: social sciences degree.
Career: May 2016-present: chief executive, Remploy; 2013-May 2016: director of strategy, Remploy; 1988-2013: various roles at Remploy, including factory manager, HR manager, head of learning; 1988-90: administrator, Remploy
Public life: 2015-present: board member of Remploy’s employee ownership association.
Interests: Cycling, music and spending time with the children.
We must recognise, harness and nurture people’s abilities rather than see only a disability
