Tag Archives: talking

The altruistic organ donor: ‘I was talking to my kidney’

Almost 5,000 people are on the waiting list for a kidney transplant, but the number of living kidney donors in the UK fell to an eight-year low in 2017.

Carl Pinder is one member of a reasonably exclusive club after he decided to donate a kidney altruistically to a stranger.

“I was thinking: well, why not?” he remembers. “And I was trying to come up with reasons why not. And even up to the day I was thinking, why not? I never saw it as a serious operation, although everyone seemed to think it was. All I’ve got is three little scars.”

The donation on 15 February 2016 by Pinder, who was 58 at the time, started a process that changed two strangers’ lives. His organ went to Barbara Hallam, 68. Barbara’s daughter, who had wanted to donate to her mother but was not a match, gave her kidney to a four-year-old girl in Scotland. And all because Pinder thought: why not?

But even though he wears his sacrifice lightly and says he would do it again, the number of altruistic donations is down by more than one-fifth from a high of 110 in 2014 to 87 last year.

Figures released this week by the NHS show an overall decline in living kidney donation, with 990 donors in 2017 – the fewest in eight years.

Last year, 261 people died waiting for a kidney transplant, many of whom could have been saved through increased living kidney donation.

What is especially important about altruistic donations is that they can start chains of transplants. In Pinder and Hallam’s case, the chain had two links, but they can be up to three links long.

Hallam, from Sheffield, had spent four years on dialysis. After finding that neither of her daughters were compatible, doctors told them there was another option, donor-pair pooling, where they could be matched with another donor-recipient pair – if one could be found. “My daughter was quite keen to give her kidney to a stranger, so that I could get on to the altruistic list quicker and find a more compatible match,” she says.

The operation – keyhole surgery performed under general anaesthetic – takes about two or three hours and leaves a few small scars. It involves a hospital stay of several days and at least a month off work, but Pinder, who discharged himself early, makes light of it. “I won’t pretend it wasn’t sore; it was,” he says. “[But] two days later, I walked down to the village shop, which is about a mile away. Two weeks later, I was out gently jogging.”

Paul Gibbs, a transplant surgeon at Portsmouth Hospitals NHS trust and trustee of the Give A Kidney charity, says altruistic donors are similar to Pinder: they are typically over 55, have had a good life and are looking for a way to give back. “There’s just this group of people that feel they’ve got a spare part they don’t need and someone is in need of it,” Gibbs says. “They see it as a complete no-brainer.”

Candidates face a battery of tests to see whether they are suitable, not least psychologically. “It’s really just to ensure that they have understanding of what they are doing, understand their motivation and just to check that they’ve got the mental strength and social support to deal with not only the success, but also the failure,” says Gibbs.

There is no guarantee that an altruistic donor will ever hear from their recipient. But Pinder and Hallam agreed to eventually meet. “It was weird,” he says, recalling. “I was sat next to her talking to my kidney, as it were. I don’t quite know how to describe, it was sort of surreal, almost. But it was good.”

Hallam says she was nervous to meet Pinder, but his nonchalance and lack of fuss put her totally at ease. “I’ve not seen him again,” she says. “But we do keep in touch every so many months and find out how each other’s going on. I want to make sure that he knows that his kidney is absolutely top notch.”

Martin Adams: ‘Men are terrible at talking about our health, aren’t we?’

When you are a professional darts player called ‘Wolfie’, a former three‑times world champion still grounded enough to enjoy playing for free in the local leagues, it is obvious why a pub will open just for you before 10 o’clock on a Friday morning. Murky sunlight seeps into The Bell in Deeping St James, not far from Peterborough, as Martin ‘Wolfie’ Adams discusses a silent killer.

“A lot of people call it the silent killer because there are not necessarily any symptoms,” Adams says of prostate cancer, which took hold of him in the spring of 2016. “I didn’t have any symptoms and I know lots of people that have never had any symptoms – or it’s been minor stuff they’ve brushed aside.”

Even when there are early warnings, men still succumb. “Yeah,” Adams says, “men are terrible at talking about our health, aren’t we? It’s one of those things we’ve got to learn to do. You can’t leave it to the women chattering in the corner. You’ve got to talk amongst yourselves.”

Even the landlord has stopped hoovering, and pulled up a chair at the bar, so he can listen in at a discreet distance. Wintry light catches the chunky sovereign rings on Adams’s fingers as his voice resounds around the hushed pub. “Some of my friends found it quite difficult to talk to me. I used to drink in here with a guy and when it came out in the public domain that I’d got prostate cancer I was chatting to him down the rugby club. He went: ‘You didn’t know I had it, did you? I had the operation a few years ago and you never knew, did you?’ I said: ‘No, because you never bloody told me.’ Us blokes just don’t talk about it. We should do.”


You can bet your life if you’ve got eight blokes in the pub one of them could have prostate cancer and not know it

I have been sent some stark statistics by Macmillan Cancer Support, the charity which helps so many people when they face the suddenly brutal prospect of death. Men are 14% more likely to be stricken with cancer than women; and 37% more likely to die than female cancer patients. They are also much less likely to ask for help.

“One in eight men will be diagnosed with prostate cancer,” Adams says. “And if you’re black it’s one in four. Unbelievable. It shouldn’t just be down to charitable organisations – the government should be doing more. They should stop wasting money elsewhere and channel it into cancer research. But our government does some bloody silly things.”

The 61-year-old Adams will lead a Macmillan campaign “aimed at working men. Blokes on the building site. You come in the pub but, instead of talking about football, talk about your health. You can bet your life if you’ve got eight blokes in here one of them could have prostate cancer and not know it.”

How did Adams discover he had cancer? “Purely by chance. I was giving up smoking and I was going on the Champix tablets. My GP is very good and said: ‘If you want to do that we’ll do a full set of blood tests first. So he did the blood tests and then I had a phone call: ‘We’ve booked you an appointment with oncology in Peterborough.’”

Adams shakes his head at the memory of the blood tests, MRI scans and biopsies that consumed him. “I remember the consultant showed me the MRI and said: ‘My interpretation is there are cancer cells just there and unfortunately that’s the most difficult part of the prostate to reach for biopsies. So we want you to do it again.’ They found cancer on the second lot of biopsies. You then go through a full-body bone scan to make sure it’s not gone in the bones. That was all clear. So I had 20 radiotherapy sessions over four weeks.”

Adams could not be sure if the cancer would be destroyed but he says: “I never thought about death. I had a lot of good friends who said you’ve got to remain positive. I got through the radiotherapy and then you wait eight weeks – and that is the longest eight weeks of your life.

“That last week drags and drags. You’ve got to have your PSA [prostate specific antigen] blood test first and mine was 0.01, virtually untraceable. I said: ‘Is that an all‑clear?’ The consultant said: ‘It’s as good an all-clear as we can give.’ They would never give you 100% because, unfortunately, cancer has a habit of coming back. It’s not something you dwell on. You just carry on.

“But with all the hormone treatment during radiotherapy you get emotional. You cry for no reason. Leigh [his partner] would say: ‘What are you crying for?’ I would say: ‘I don’t know.’ [Adams laughs.] Straight after radiotherapy I did the British Classic on a Saturday, the British Open on the Sunday. Played all right in the Classic but the following day I couldn’t hit a thing.”

Adams twirls his big Wolfman ring and cackles. “It got into the public domain because I chatted with Bob French – the local sports editor. We were talking about an upcoming event and I said: ‘Experience tells me I’ll be good one day and rubbish the next.’ He went: ‘Why?’ I said: ‘I’ve been struggling and the prostate cancer isn’t helping.’ He said: ‘Pardon?’ I went: ‘Oops. It’s out there now.’ The support I’ve had from people is incredible. I go to Tesco on a Monday morning and they’re all asking: ‘How’s your health?’ My checks are every six months and the next one is in May – which will be the two-year mark.”

Martin Adams at The Bell pub in Deeping St James, Lincolnshire. ‘I got through the radiotherapy and then you wait eight weeks – and that is the longest eight weeks of your life’.


Martin Adams at The Bell pub in Deeping St James, Lincolnshire. ‘I got through the radiotherapy and then you wait eight weeks – and that is the longest eight weeks of your life’. Photograph: John Robertson/Guardian

Has cancer changed him? “Yeah, it made me value the simple things in life. My gardening got brilliant. It’s very peaceful in the garden, tinkering away, and this time of year is great because I just put my tomato seeds in. My tomatoes and marrows are brilliant.”

Adams has slipped to 27th in the BDO rankings since his cancer treatment began. Last month he lost narrowly, 3-2, in the first round against the organisation’s No 1 player Mark McGeeney. It was his 25th successive appearance in the BDO’s landmark tournament at Lakeside and he is proud not to have left to play on the much richer and far more popular PDC circuit – where his old rival Phil Taylor reached the final this year in his last match before retiring.


Has it changed me? It’s made me value the simple things in life. My gardening got brilliant

“Money isn’t everything,” Adams says, looking bemused by the hugely successful PDC world championships at Alexandra Palace which precedes the less overblown BDO version. “I’ve got no desire to go to Ally Pally. Most people are there just for the drink and the party and I find that strange. A ticket is £30 or £40. Imagine if you said to someone coming into the pub: ‘I’m going to charge you £30 to come in and you can get as drunk as you like, sing as much as you like and I’m going to overcharge you on the beer.’ Would they come in? No. Why they do it at Ally Pally is beyond my belief. Lakeside is true darts supporters. If somebody tries a sing‑song people shut them up. We have a fantastic atmosphere at Lakeside. It’s proper darts.”

The best players today are all on the PDC circuit but Adams shrugs when asked if Taylor and Michael van Gerwen are the greatest he has faced. “They’re great on their day and when they’re hitting it they’re unbeatable. But for me the greatest player of all time is Eric Bristow [who won five world titles compared to Taylor’s 16]. Eric got to two world finals with dartitis [the equivalent of the yips in golf]. He didn’t win either but that shows his true grit.”

Adams is less glowing towards Taylor, whom he played against so often before they ended up in the rival BDO and PDC camps. It is hard to imagine Taylor emulating Adams by playing in the local leagues for free. “Not really, no,” Adams agrees. “I’m not sure he’s got any mates, to be honest. He’s a great dart player, Phil, but he’s not someone I’d ring up and say ‘Do you fancy a beer?’, because he’d only want to talk about darts. That would bore me.”

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He talks cheerfully about hoping to play county darts until he is 75 but Adams is more intent on raising awareness of cancer. Rightly praising the tests for cervical cancer in women, he laments the absence of screening for prostate cancer in men. “There’s a drive within Prostate Cancer UK to have a screening process implemented. That will happen.”

In the meantime, the Wolfman will keep fighting cancer. He opens his phone and shows me a photograph of his black van which has been painted with a huge Man of Men silver badge and the Prostate Cancer UK website. Adams planned to pay for the paintwork himself. “I went to see the people who will do it and I asked the young man for a quote. He said: ‘I had a word with the boss. He really likes it. Provided we can take some photos of the van with you, you can have it free.’”

Adams laughs when I say I can imagine him driving around in his Man of Men black van, blasting out his walk-on darts music, Hungry Like A Wolf. “I’ll always be hungry like a wolf. You’ve got to enjoy life, haven’t you? I think my van is going to be noticed. It’s definitely going to spread awareness about prostate cancer.”

Macmillan Cancer Support works with the construction, electrical and home improvement sectors to support men with cancer – www.macmillan.org.uk/saytheword

Martin Adams: ‘Men are terrible at talking about our health, aren’t we?’

When you are a professional darts player called ‘Wolfie’, a former three-time world champion still grounded enough to enjoy playing for free in the local leagues, it is obvious why a pub will open just for you before 10 o’clock on a Friday morning. Murky sunlight seeps into The Bell in Deeping St James, not far from Peterborough, as Martin ‘Wolfie’ Adams discusses a silent killer.

“A lot of people call it the silent killer because there are not necessarily any symptoms,” Adams says of prostate cancer, which took hold of him in the spring of 2016. “I didn’t have any symptoms and I know lots of people that have never had any symptoms – or it’s been minor stuff they’ve brushed aside.”

Even when there are early warnings, men still succumb. “Yeah,” Adams says, “men are terrible at talking about our health, aren’t we? It’s one of those things we’ve got to learn to do. You can’t leave it to the women chattering in the corner. You’ve got to talk amongst yourselves.”

Even the landlord has stopped hoovering, and pulled up a chair at the bar, so he can listen in at a discreet distance. Wintry light catches the chunky sovereign rings on Adams’s fingers as his voice resounds around the hushed pub. “Some of my friends found it quite difficult to talk to me. I used to drink in here with a guy and when it came out in the public domain that I’d got prostate cancer I was chatting to him down the rugby club. He went: ‘You didn’t know I had it, did you? I had the operation a few years ago and you never knew, did you?’ I said: ‘No, because you never bloody told me.’ Us blokes just don’t talk about it. We should do.”


You can bet your life if you’ve got eight blokes in the pub one of them could have prostate cancer and not know it

I have been sent some stark statistics by Macmillan Cancer Support, the charity which helps so many people when they face the suddenly brutal prospect of death. Men are 14% more likely to be stricken with cancer than women; and 37% more likely to die than female cancer patients. They are also much less likely to ask for help.

“One in eight men will be diagnosed with prostate cancer,” Adams says. “And if you’re black it’s one in four. Unbelievable. It shouldn’t just be down to charitable organisations – the government should be doing more. They should stop wasting money elsewhere and channel it into cancer research. But our government does some bloody silly things.”

The 61-year-old Adams will lead a Macmillan campaign “aimed at working men. Blokes on the building site. You come in the pub but, instead of talking about football, talk about your health. You can bet your life if you’ve got eight blokes in here one of them could have prostate cancer and not know it.”

How did Adams discover he had cancer? “Purely by chance. I was giving up smoking and I was going on the Champix tablets. My GP is very good and said: ‘If you want to do that we’ll do a full set of blood tests first. So he did the blood tests and then I had a phone call: ‘We’ve booked you an appointment with oncology in Peterborough.’”

Adams shakes his head at the memory of the blood tests, MRI scans and biopsies that consumed him. “I remember the consultant showed me the MRI and said: ‘My interpretation is there are cancer cells just there and unfortunately that’s the most difficult part of the prostate to reach for biopsies. So we want you to do it again.’ They found cancer on the second lot of biopsies. You then go through a full-body bone scan to make sure it’s not gone in the bones. That was all clear. So I had 20 radiotherapy sessions over four weeks.”

Adams could not be sure if the cancer would be destroyed but he says: “I never thought about death. I had a lot of good friends who said you’ve got to remain positive. I got through the radiotherapy and then you wait eight weeks – and that is the longest eight weeks of your life.

“That last week drags and drags. You’ve got to have your PSA [prostate specific antigen] blood test first and mine was 0.01, virtually untraceable. I said: ‘Is that an all-clear?’ The consultant said: ‘It’s as good an all-clear as we can give.’ They would never give you 100% because, unfortunately, cancer has a habit of coming back. It’s not something you dwell on. You just carry on.

“But with all the hormone treatment during radiotherapy you get emotional. You cry for no reason. Leigh [his partner] would say: ‘What are you crying for?’ I would say: ‘I don’t know.’ [Adams laughs]. Straight after radiotherapy I did the British Classic on a Saturday, the British Open on the Sunday. Played all right in the Classic but the following day I couldn’t hit a thing.”

Adams twirls his big Wolfman ring and cackles. “It got into the public domain because I chatted with Bob French – the local sports editor. We were talking about an upcoming event and I said: ‘Experience tells me I’ll be good one day and rubbish the next.’ He went: ‘Why?’ I said: ‘I’ve been struggling and the prostate cancer isn’t helping.’ He said: ‘Pardon?’ I went: ‘Oops. It’s out there now.’ The support I’ve had from people is incredible. I go to Tesco on a Monday morning and they’re all asking: ‘How’s your health?’ My checks are every six months and the next one is in May – which will be the two-year mark.”

Martin Adams at The Bell pub in Deeping St James, Lincolnshire. ‘I got through the radiotherapy and then you wait eight weeks – and that is the longest eight weeks of your life’.


Martin Adams at The Bell pub in Deeping St James, Lincolnshire. ‘I got through the radiotherapy and then you wait eight weeks – and that is the longest eight weeks of your life’. Photograph: John Robertson/Guardian

Has cancer changed him? “Yeah, it made me value the simple things in life. My gardening got brilliant. It’s very peaceful in the garden, tinkering away, and this time of year is great because I just put my tomato seeds in. My tomatoes and marrows are brilliant.”

Adams has slipped to 27th in the BDO rankings since his cancer treatment began. Last month he lost narrowly, 3-2, in the first round of the BDO World Championships to the organisation’s No1 player Mark McGeeney. It was his 25th successive appearance in the BDO’s landmark tournament at Lakeside and he is proud not to have left to play on the much richer and far more popular PDC circuit – where his old rival Phil Taylor reached the final this year in his last match before retiring.


Has it changed me? It’s made me value the simple things in life. My gardening got brilliant

“Money isn’t everything,” Adams says, looking bemused by the hugely successful PDC world championships at Alexandra Palace which precedes the less overblown BDO version. “I’ve got no desire to go to Ally Pally. Most people are there just for the drink and the party and I find that strange. A ticket is £30 or £40. Imagine if you said to someone coming into the pub: ‘I’m going to charge you £30 to come in and you can get as drunk as you like, sing as much as you like and I’m going to overcharge you on the beer.’ Would they come in? No. Why they do it at Ally Pally is beyond my belief. Lakeside is true darts supporters. If somebody tries a sing-song people shut them up. We have a fantastic atmosphere at Lakeside. It’s proper darts.”

The best players today are all on the PDC circuit but Adams shrugs when asked if Taylor and Michael van Gerwen are the greatest he has faced? “They’re great on their day and when they’re hitting it they’re unbeatable. But for me the greatest player of all time is Eric Bristow [who won five world titles compared to Taylor’s 16]. Eric got to two world finals with dartitis [the equivalent of the yips in golf]. He didn’t win either but that shows his true grit.”

Adams is less glowing towards Taylor, whom he played against so often before they ended up in the rival BDO and PDC camps. It’s hard to imagine Taylor emulating Adams by playing in the local leagues for free. “Not really, no,” Adams agrees. “I’m not sure he’s got any mates to be honest. He’s a great dart player, Phil, but he’s not someone I’d ring up and say: ‘Do you fancy a beer?’ because he’d only want to talk about darts. That would bore me.”

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He talks cheerfully about hoping to play county darts until he is 75 but Adams is more intent on raising awareness of cancer. Rightly praising the tests for cervical cancer in women, he laments the absence of screening for prostate cancer in men. “There’s a drive within Prostate Cancer UK to have a screening process implemented. That will happen.”

In the meantime, the Wolfman will keep fighting cancer. He opens his phone and shows me a photograph of his black van which has been painted with a huge Man of Men silver badge and the Prostate Cancer UK website. Adams planned to pay for the paintwork himself. “I went to see the people who will do it and I asked the young man for a quote. He said. ‘I had a word with the boss. He really likes it. Provided we can take some photos of the van with you, you can have it free.’”

Adams laughs when I say I can imagine him driving around in his Man of Men black van, blasting out his walk-on darts music, Hungry Like A Wolf. “I’ll always be hungry like a wolf. You’ve got to enjoy life, haven’t you? I think my van is going to be noticed. It’s definitely going to spread awareness about prostate cancer.”

Macmillan Cancer Support work with the construction, electrical and home improvement sectors to support men with cancer www.macmillan.org.uk/saytheword

Jacqui Dyer: Talking about race and mental health is everyone’s business | Hélène Mulholland

For Jacqui Dyer, trying to talk about the issue of race and inequality in mental health services is sometimes like “pulling teeth”. Yet the over-representation of black people in inpatient mental health services is part of the country’s “dirty secret” that needs to be addressed once and for all.

“Wherever there is exclusion or detention in this society, that’s where you find over-representation of black people,” says Dyer, who argues that the notion of the black person as “big, black and dangerous” still prevails within institutional service settings.

Dyer, 51, has just been appointed to the advisory panel for the government’s Mental Health Act, which aims to investigate, among other things, why a disproportionate number of black, Asian and minority ethnic people are detained under the act. It is too early to say what the review will achieve, but Dyer is clear that detention cannot be seen in isolation from the systemic inequalities in mental health.


Even when black adults do manage to access talking therapies, we don’t have the same outcomes

Last month’s race disparity audit showed that common mental disorders such as anxiety and depression were most prevalent among black women, while black men were more than 10 times as likely to have experienced a psychotic disorder within the past year as white men. Yet the audit also showed that black adults in the general population were the least likely to report being in receipt of any treatment – medication, counselling or therapy, and the most likely to have been detained under the Mental Health Act.

Dyer suggests the rate of detentions is linked to not enough people having access to early intervention services. The audit has made it that bit easier to press home the need to do more. “It’s what we’ve always known, but having that data has helped us to have those conversations a bit more easily when people have traditionally tried to avoid that.”

Dyer was also vice-chair of the independent Mental Health Taskforce, set up in 2015 to produce the Department of Health’s Five Year Forward View for Mental Health for the NHS in England. Published last year, it laid out a series of recommendations to transform mental health services, including 24/7 support for people in crisis and “tackling unwarranted variations in care”.

But the race disparity audit suggests little has changed. Dyer says that black voices are rarely heard at the decision-making table, where more are needed, locally as well as nationally. It is why she is passionate about the Black Thrive scheme in Lambeth, south London. It is a community-led initiative to create a more positive story around mental health in the African-Caribbean community and ensure services are more responsive and culturally sensitive to its needs. Black Thrive came out of the 2014 Black Health and Wellbeing Commission she co-chaired as a local Labour councillor in response to the death of local resident Sean Rigg, who died after being restrained by police officers during a schizophrenic episode.

The commission found that 70% of the borough’s residents in secure psychiatric settings were of African or Caribbean descent, despite making up just 26% of Lambeth’s population

The commission made 40 recommendations to improve services, health and wellbeing for the borough’s black population, and Dyer decided to drum up some funding to carry the work forward. Discussions with the community on the “dirty stuff that nobody wants to talk about,” ensued, such as the way the impact of racism on people’s mental health is often overlooked.

“Even when we do access talking therapies, the data shows we’re not having the same outcomes,” says Dyer. “How can we have the same outcomes when we’re not having the same experiences?” Dyer knows all too well how hard it can be to get the right services, having had bouts of depression and severe anxiety since childhood and caring for her three siblings with severe mental illness for the past three decades, one of whom died a few years ago.

Black Thrive seeks to empower the African Caribbean community in Lambeth to understand their own mental health needs and what early intervention services are available, as well as the way the mental health system works. People are also supported to use their voices to shape and influence the commissioning of local services. Dyer, a trained counsellor whose previous jobs included commissioning mental health services and outreach work, says: “You have to be systematic about it. What I’m looking for is the voice of the lived expert experience of our community, because the black voice is rarely at the decision-making table. And that’s what Black Thrive does. It ensures the black voice is heard.”

Dyer knows firsthand how tough it can be to speak up, not least as a black woman whose “animated” personality can be misconstrued in the context of “an inbuilt fear of blackness”. But she does it anyway, time and again. “The number of times people have not wanted to include me in decision-making because they find it uncomfortable to have a black voice with a different experience … When there’s a bit of grit there, people feel uncomfortable,” she says. ”

Austerity makes her worry about the prospect of success. Part of her NHS England role is to ensure equality issues are considered in the implementation of the recommendations of the Five Year Forward View. A tall order, surely, at a time of mental health budget pressures? Dyer is concerned about whether the funding is there, but points out that the over-representation of black people in mental health services has been ignored for far too long. “Isn’t this precisely the time to dig seriously deep for money, because the impact of austerity is creating even more mental illness as people struggle to survive?”

Ultimately, Dyer says, addressing mental health inequalities is “everyone’s business”. How will we know it’s been achieved? “When people access services much earlier, services give the black community a better deal, and we don’t have deaths in custody,” she says. Curriculum vitae

Age: 51.

Family: Single

Lives: Lambeth, London

Education: Deighton High School, Huddersfield; Huddersfield Technical College – University Access Course; Goldsmiths University (BA Hons social policy and public administration); NHSE Institute for Innovation & Improvement – Aspiring Directors Programme; Brunel University (MA social work); Preparing to Teach in the Lifelong Learning Sector (PTTLS), Level 4.

Career: 2016-present: independent health and social care consultant, NHS England; 2015–2016: vice chair, NHS England mental health taskforce; 2014-present: Elected as a Lambeth Labour councillor and vice chair, overview and scrutiny committee, London Borough of Lambeth; 2012-present: member, lived expert by experience, Time To Change Senior Management Group; 2012-2015: member, DH Ministerial Mental Health Advisory Group; 2011–2012: volunteer family support worker, HomeStart Lambeth; 2003-2007: senior mental health manager, Enfield primary care trust; 2000-2003: assertive outreach worker, Lewisham Family Health Isis; 1994 -2000: Team leader, Addaction Maya Residential Rehabilitation.

Public life: Chair, Black Thrive; Mental Health Foundation Trustee; advisory panel member, Mental Health Act Review2016-present: co-chair, Thrive London steering group; March 2013-May 2014: Chair, Myatts Field North Residents Association & PFI Monitoring Board.

Interests: Reading, travelling, films, weight training, aerobics, most music genres, community empowerment.

Talking about feelings does not make you a snowflake | Deborah Orr

Prince Harry spoke over the weekend about the emotional cost of suppressing his grief over his mother’s death when he was 12 years old. Prince William followed up by saying that his work as an air ambulance pilot made him aware of the large number of people, mainly men, who attempt suicide. The two of them, along with the Duchess of Cambridge, have launched an awareness campaign that aims to highlight the dearth of good mental health provision in Britain.

For some, all this means is that – disappointingly – the royals have joined the “snowflake generation” of young people who are simply too sensitive to little things like “feelings”. For others, including myself, their Heads Together initiative is admirable, not least because in itself it calls attention to the ludicrously basic level at which the building of “awareness” needs to begin.

Imagine how weird it would be if this trio were sticking their necks out to raise awareness of physical health, pointing out that you don’t just carry on, yelling that it’s only a flesh wound if you’ve made a gash in your hand. Clean it, at the very least. Put on a plaster. If it won’t stop bleeding, see a doctor. These are things everyone is nowadays expected to know. Yet, not so long ago, humans had no understanding at all of the implications of leaving a physical wound untreated.

We’re not far beyond that point with “mental health”. For a start, this is a huge, catch-all term. In Harry’s case, normal emotional distress was left untreated, and festered into something more serious. And yet … expressing his distress? Having it addressed? That, in some people’s eyes, would have made Harry a snowflake. This dangerous attitude is particularly fostered in men and boys. It’s not masculine to show your emotions – though they tend to show in other ways, in anger, aggression, self-harm or depression. I daresay that in at least some of the cases to which William refers, men bottled up their distress until it became overwhelming.

Very often a “mental health problem” starts out as mere emotional distress, a natural, healthy part of life. It’s when that distress isn’t sensibly addressed that it can grow into something that can be labelled a problem. Simply being aware of one’s emotions is the first step towards regulating them. Telling a whole generation that they’re “snowflakes” for having such awareness is actually an awful thing to do.

Which is not to say that every manifestation of emotional distress should be indulged or validated. That, I think, is what makes people talk of “emotional incontinence”. There’s a tendency among some to start believing that if a view or opinion upsets them then it is wrong. On the contrary, that’s usually a sign that the distressed person has difficulty handling conflict. What’s really going on with the “snowflake generation” is that people are becoming more aware of their feelings and needs, but don’t have the knowledge or experience to understand what those reactions are telling them about themselves.

In January this year, Theresa May announced that schoolchildren will be given greater access to NHS mental health workers. She has also praised Prince Harry for helping to “smash the stigma” around mental health and reassuring people that they are “not alone”. (She’s also called a snap general election, of course, which isn’t going to help anyone’s mental health.)

But this too is evidence of the crudity of our thinking. What is actually needed is far more sophisticated emotional awareness, so that people can recognise and manage their own emotions and, just as importantly, interactions with others who may have unhealthy or abusive emotional agendas themselves.

The good news is that all this is not actually as difficult or complex as it may appear. Emotional awareness could easily be taught in schools. It should be seen as just as necessary as PE. Already people are doing amazing and cost-effective work that can have a huge impact in helping people understand and care for themselves and those around them. Last week, for instance, I took part in a conflict workshop run by youth charity Leap. Around 20 adults who had never met before became fairly emotionally intimate with each other over just a couple of hours.


Emotional awareness should be taught in schools, and seen as just as necessary as PE

Some declared they’d achieved insights that they were going to apply within their marriages. Someone who’d worked for years with the most troubled young people announced she was “blown away”. Yet the room was full of people who didn’t even know that conflict was a problem in their lives.

And that’s the thing. People soldier on, unaware they have a problem. Worse, that problem becomes familiar; it feels safe, even comfortable, because it’s what they know. It’s why people make the same mistakes again and again, abusing others or allowing themselves to be abused without even knowing this behaviour isn’t “normal”.

There’s a tendency to see the “snowflake generation” as narcissistic, demanding constant attention and validation, wrapped up in their own needs and unaware of those of others, refusing to take responsibility for their choices or mistakes, playing the victim. Yet these critics are themselves being typically narcissistic in denying that the youngsters they berate have any right to their own feelings and perceptions, let alone might need or deserve some help in untangling them.

If anything, I believe, this generation is suffering because generations before it were as narcissistic as any that ever lived. If you think that’s far-fetched, take a look at Donald Trump, elected King of the Baby Boomers.

Talking of kings, there’s not a lot that’s more narcissistic than the concept of monarchy. When the youth of that institution say there’s a problem, then you really, really know there is. And that it’s a big one.

Talking about death is a part of my work – I worry I say the wrong thing

I am a NHS hospital consultant and work in a healthcare team that specialises in the care of adults with cystic fibrosis (CF). This is a genetic condition that affects various organs, but primarily the lungs. It results in recurrent and severe chest infections that ultimately cause the lungs to fail. There have been considerable advancements in new therapies that we are hopeful will change the natural history of the disease. Nevertheless, it remains a life-shortening illness and coping with the death of young adults brings many challenges to the team that I work in.

Patients move to our CF centre when they are 18 years old. The doctor-patient relationship is a dichotomous and delicate balance of professional distance and empathy. But it does not fully guard against emotion when we see those we look after approach death. Over the years we develop bonds with our patients and their families and witness many life events. We share in their laughter and tears. Occasionally I am the focus, a patient recently said to me: “You’ve lost weight … you need to look after yourself better.” That made me chuckle.


Clinical care satisfies the needs of today, but research brings the hope for tomorrow

Patients strive to lead normal lives and I am frequently in awe of their achievements. Some of their journeys are truly Homeric in stature. But years of infections and damage to the lungs take their toll. The hope of a better tomorrow is a powerful support but the reality of declining health can dismantle the scaffold. Broaching these end-of-life conversations is often difficult as the words uttered can confirm patients’ fears.

It is so important to choose those words carefully as they can linger in the family’s memory. I remember one young 22-year-old woman who was not responding to treatment in hospital; her death was imminent. It was important for her to have some sort of control. I asked her: “You are in the driving seat now, what would you like us to do with your treatment?” She wanted to stop it, and I did. Some months after her death her mum called into the hospital and said: “Thank you for putting my daughter in the driving seat”. I’ve cherished those words.

Many patients now have young families of their own and the death of a parent is a traumatic experience. We arrange for our patients to engage with a specially trained counsellor to express their thoughts in words and pictures. A personalised memory book is produced, which includes advice for the future without them.

I’ll always remember the young girl, after losing a parent, who put her thoughts down in a letter. It was a remarkable achievement for one so young. She said the book helped her and reminded her of the parent she had lost. The presence and tactility of a book is tangible. A father whose son died wrote to me: “It is impossible to balance the awfulness of our heartbreak with the comfort that this book provides, but what is paramount is that it provides amazing comfort to us all.” Their letters are the most powerful I have ever read.

In the liminal transition from life to death a peace descends in the half light. I reflect on what I could have done differently. Should I have changed the treatment plan? Could I have phrased things a little better? Some parents have lost all their children to this disease and they have been made to endure grief that is simply unendurable. So when I go home at night my family are hugged that little bit tighter, as nobody is immune to loss. Death casts light on my own mortality and the impermanence of life comes sharply into focus.

In the following days and weeks we redouble our efforts. Clinical care satisfies the needs of today, but research brings the hope for tomorrow. It is so important to be part of that hope. I walk into the hospital ward to hear new stories and guide as best I can. It is an enormous privilege to do what I do.

If you would like to write a blogpost for Views from the NHS frontline, read our guidelines and get in touch by emailing sarah.johnson@theguardian.com.

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Talking about mental illness is no substitute for offering real help | Rachel Kelly

Last week, the Duke and Duchess of Cambridge and Prince Harry joined other notable names, including the rapper Professor Green and the former Labour spin doctor Alastair Campbell, to record short films about modern approaches to mental illness. They all stressed that it was good to talk, or, in the terminology beloved of the mental health world, to “start the conversation”.

I agree – and salute their efforts. Talking and being listened to are therapeutic and are known to be what doctors call a “protective factor” when it comes to good mental health. They make us better able to deal with stress; talking also helps reduce stigma, which otherwise leads to discrimination and social isolation.

I know from first-hand experience the power of stigma. When I had my first major depressive episode nearly 20 years ago, I was a reporter at the Times. I was briefly hospitalised and ill for six months. But when I went back to work, I told no one in the newsroom that I had suffered depression. I didn’t just fear what my colleagues would think – I didn’t want to acknowledge the illness to myself.

Several years later, I suffered a second serious episode. Depression is experienced in different ways, but my illness was born of being an anxious striver who became overwhelmed by the stress of trying to do too much. Chronic insomnia, nausea, a palpitating heart and a terrifying sense that I was falling and had to hold on to something all featured as symptoms. I felt suicidal, not because I didn’t like my life but because of the physical pain of the illness.

It was only after this second episode, which lasted for 18 months or so, that I decided to talk openly about being unwell. I also resolved to discover the evidence-based strategies that would make a third episode less likely.

Fast forward 20 years, and, while we may have “started the conversation”, in many professional worlds stigma is still thriving. In workshops I run – alongside mental health charities – I often start by asking the audience to stand up. Invited to stay standing if they or their family have suffered any kind of mental illness, most stay standing. But when they are invited to stay standing if they’ve been able to talk openly about their experience of mental illness, most sit down.

This is common when I talk to groups at professional service firms: lawyers, accountants and bankers. Despite valiant initiatives such as the City Mental Health Alliance and the Bank of England’s mental health network, many workers feel it may damage their careers to admit mental ill health. They stay stumm, however much royals tell them it’s good to talk.

Part of the reason, I think, is to do with our assumption that a privileged life must entail privileged health. Depression, however, has no respect for background or profession.

For all the great work of celebrities, there’s also a sense in the room that the life of a famous person does not reflect the life of someone working long hours in an office. It’s almost as if the gods of screen or sport are expected to be a bit mentally unstable, given the vicissitudes of their professional life, even if such thinking is misguided. But someone with a steady, well-paid job? Why should they be depressed? Equally, we may think it more likely for those suffering from real social deprivation to experience mental illness. But someone who has his own business? Or a successful doctor or plumber?

So what’s to be done to destigmatise mental health issues?

First, employers need to do more to make it acceptable to be mentally unwell in the workplace. When the royals released the largest ever survey of attitudes towards mental illness last week, just 2% of the 5,000 surveyed said they had spoken to human resources at work. And all this despite almost 12m working days being lost to work-related stress, anxiety and depression in 2015-16.

Probably the most powerful change will be when more senior staff take the initiative and talk about their own struggles. A junior employee is never going to admit to problems if they feel their boss wouldn’t do the same. Meanwhile, employees need safe, non-judgmental platforms to discuss their feelings on a regular basis. Often, people with mental health problems find it harder to stay in work and progress in their career.

Freddie Flintoff (left) and Stephen Manderson (aka Professor Green)


Freddie Flintoff (left) and Stephen Manderson (aka Professor Green) are among the stars talking about their mental health battles in the Heads Together films. Photograph: Heads Together/PA

The second key change must be in the NHS. Last Friday, its chief executive, Simon Stevens, said that mental health will now be a priority. Talking therapies for anxiety and depression will be given to 200,000 more patients each year by 2020, and NHS England is committing £1.4bn in funding to expand treatment.

Welcome news, though we’ve heard promising announcements before. But we have decades of neglect and underinvestment to rectify. Last November, an analysis by the King’s Fund thinktank showed that 40% of mental health trusts had a fall in income in 2015-16. This was despite the government’s commitment to parity of esteem for mental health now enshrined in the NHS constitution, and despite assurances from NHS England that almost 90% of plans submitted by clinical commissioning groups last year included mental health funding increases.

I routinely talk to people who have had to wait months for cognitive behavioural therapy, the therapy of choice in the NHS, or an appointment with a psychiatrist. And Professor Sir Simon Wessely, president of the Royal College of Psychiatrists, warned last week that a lack of specialists means that mental health patients are not being treated by people trained to deal with their condition.

Another problem is representation. There are still precious few mental health experts on the boards that run the health service, including the boards of NHS England and Monitor (the health service regulator), or the Wellcome Trust.

I would also love to see the NHS adopt a more holistic approach to good mental health. My own experience is that we all need a toolbox of strategies, nutrition being one of them. Yet NHS doctors have almost no nutritional training.

As the royals said, simple conversations can change the direction of an entire life. But even more important is having access to proper services and getting proper care. And many don’t. So let us see the extent to which words translate into action.

Given the scale of change we need, I worry that too much talk may be seen as an excuse for not enough action. In fact, in a strange way, it will only be when the prime minister and the heir to the throne no longer need to publicise the problem that we will have defeated the stigma.

Rachel Kelly’s books include Black Rainbow, her account of her struggle with clinical depression. She is an ambassador for Sane and Rethink Mental Illness

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Royals launch campaign to get Britons talking about mental health

Prince Harry and the Duke and Duchess of Cambridge have enlisted a rapper, a Royal Marine and a Labour spin doctor to try to push stigma about discussing mental health beyond what they believe is a “tipping point” and into public acceptability.

The royals are trying to use their high profile to convince the public that “shattering stigma on mental health starts with simple conversations”. The rapper Stephen Manderson, known as Professor Green, and the comedian Ruby Wax have joined other public figures and individuals who have suffered mental illness to make short films for their mental health campaign, Heads Together, and talk openly about their experiences of depression, anxiety and suicidal thoughts.

“Attitudes to mental health are at a tipping point,” the royals said in a joint statement. “We hope these films show people how simple conversations can change the direction of an entire life.”

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Alastair Campbell and Fiona Millar discuss mental health

In the clips Alastair Campbell, Tony Blair’s former director of communications in Downing Street, discusses his depression and breakdowns with his wife, Fiona Millar, including recalling how he got so low he punched himself in the face repeatedly. In another encounter the former England cricket captain Andrew Flintoff told Manderson: “The hardest thing for me initially was talking. I’m not a big talker. I’m from the north of England. I’m from a working-class family. We don’t talk about our feelings.”

“It was no different for me growing up in a council estate in east London,” replied the rapper. “It is just not something you spoke about.”

The royals also released the largest ever survey of public attitudes to mental health, conducted by YouGov, which found almost half the population had a conversation about mental health in the last three months. Women are more likely to talk about the issue than men and young adults are almost twice as likely to discuss it than people aged over 65.

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Freddie Flintoff and Professor Green

However, very few of the 5,000 surveyed – just 3% – said they had approached someone from a local support organisation, and a similar amount, 2%, spoke to someone in the human resources department at work about the issue, despite almost 12m working days being lost to work-related stress, anxiety and depression in 2015-16.

Heads Together is a coalition of eight mental health charities, including Mind and the Campaign Against Living Miserably (Calm), organised from Kensington Palace. Prince Harry is championing the issue after fellow servicemen suffered post-traumatic stress disorder and following his time volunteering in the army’s personnel recovery units. Prince William is understood to have been motivated after attending several suicides as an air ambulance pilot, and the Duchess of Cambridge is said to be interested in how mental health affects family life.

By campaigning for people to help each other by talking more, the royals hope to avoid a more politicised issue: claims that funding for NHS mental health services is being effectively cut. Last November an analysis by the King’s Fund thinktank showed 40% of mental health trusts saw their income fall in 2015-16. This was despite the government’s commitment to parity of esteem for mental health and assurances from NHS England that almost 90 per cent of plans submitted by clinical commissioning groups (CCGs) last year included mental health funding increases.

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Ruby Wax and producer Ed Bye

Heads Together will be the London Marathon’s lead charity this year, and the former England footballer Rio Ferdinand and the comedian Stephen Fry have also recorded testimonies set to be released next month.

People from other professions have also contributed. Phil Eaglesham, a Royal Marine who completed tours of Afghanistan and Iraq, is filmed talking with his wife, Julie, about how his struggle with a debilitating illness resulted in him trying to take his own life, although he told no one.

“I was ashamed,” he said. “There’s a stigma around mental health and how that was perceived and at that point I felt I was weak.”

When he finally did speak out, “things improved and I got help”.

“There is no way out without talking,” he said.

The TV journalist and newscaster Mark Austin discusses with his daughter Maddy how he handled her anorexia.

“I couldn’t even come to terms with how to stop it or how to help you,” he told her. “It was like you were determined to kill yourself. I remember at one stage saying if you want to go ahead and starve yourself to death, you go ahead. I obviously didn’t mean it but I was so helpless.”

In the UK, the Samaritans can be contacted on 116 123. In the US, the National Suicide Prevention Hotline is 1-800-273-8255. In Australia, the crisis support service Lifeline is on 13 11 14. Hotlines in other countries can be found here

STIs and crisp-packet contraception: what I learned from talking about sex in schools

Everyone has a story about crap sex education. My own consisted of a single afternoon in primary school, where a shame-faced stranger haltingly warned us about our impending wet dreams in such abstract terms that she may as well have been explaining quantum chromodynamics. That was all we got. It’s a wonder we are not all dead.

So the news that sex and relationship education will soon be compulsory in British secondary schools, with children from four years old upwards receiving lessons in relationships, should be widely celebrated. I left school two decades ago and, despite spending a solid month on the subject, I am yet to encounter a situation where I have needed to know what an oxbow lake is. Meanwhile, had my school put the same effort into sex and relationships, I guarantee that I would still be using those lessons to this day.

Leaving youngsters to figure out how sex works for themselves is the very definition of madness. For a few years, I was heavily involved with World Contraception Day, and I got to see first-hand what happens when kids have to form their own ideas about sex. The misinformation I encountered was catastrophic. I met kids who did not think you could get pregnant if you did it standing up, and kids who thought the pill protected you against STIs. There were kids who believed that post-coitally rinsing yourself out with Coca-Cola was an effective form of contraception. On one particularly bleak morning in Maidstone, I found myself arguing with a teenager who maintained that, in an emergency, an empty crisp packet would be a fine alternative to a condom.

Sure, you could argue that this ruling has come a little late, since rates of teenage pregnancies in this country have now reached the lowest point since records began. And, yes, in a balanced and sensible world this would not be necessary because parents would have already fully equipped their children to learn the importance of healthy relationships.

But still, it is vitally important. The internet has meant that, without schools stepping in to lead the way, there is a real danger that kids will educate themselves about sex with pornography. After all, no generation has ever had such easy access to porn. When I was a kid, if we wanted to look at porn we had to scour local woodlands for miraculously discarded carrier bags full of year-old Razzles. I shudder to think of the ideas we would have formed if we could have just hopped on the internet. No wonder 75% of British people want to see sex and relationship education address the harmful effects of online porn and sexting.

We have known for years that teens are more responsible in their attitudes towards sex if they are given a proper educational grounding first. And, at last, that is what they are going to get. Even if it dents the sales of fizzy drinks and crisps a little, that has to be a good thing.

Thunderstorm asthma: ‘You’re talking an event equivalent to a terrorist attack’

A sudden drop in temperature in Melbourne on Monday evening from peaks of 35C brought with it severe thunderstorms and triggered a mass asthma event that left hospitals struggling to treat 8,500 patients.

There is a small group of researchers around the world working to understand the phenomena known as “thunderstorm asthma”, which although rare, can have devastating consequences. Climate change, they say, may be where part of the blame lies.

On Sunday 20 people remained in hospitals across Victoria, struggling with respiratory and related conditions, while four remained in critical condition. At least five people are known to have died after their asthma was triggered during the thunderstorm, the health department confirmed over the weekend.

A major, state-wide investigation into the response of emergency services to the event has been ordered.

Paramedics did the best they could to respond to an unprecedented 1,900 emergency calls in five hours on the evening of 21 November but were unable to reach everyone in a reasonable time. Ambulances made constant trips to emergency departments already overwhelmed as hundreds of patients streamed in under their own steam.

The acting general secretary of Ambulance Employees Australia, Danny Hill, said it would have been a traumatising night for paramedics.

“For anyone who worked that night, from staff on the ground to senior management, they regarded it as the busiest night they ever worked in their whole careers,” he said.

“Very few crews got fed. They worked 14 hours straight. Everyone worked together, worked hard, and stepped up. There was about 30 people who were so severely ill that they had to be taken straight into intensive care. So you’re talking an event equivalent to a bushfire where people are severely burned, or a terrorist attack where people are critically injured.

“That’s the level of chaos our crews dealt with on Monday night.”

Asthma patients can be some of the most difficult for paramedics to respond to. They deteriorate very quickly, and severe cases require more than the immediate treatment a paramedic can provide, including continuous days of intravenous drugs and ventilation. Many, Hill said, went into cardiac arrest.

Kathy Bowlen from St Vincent’s hospital said the emergency department there had considered opening a temporary emergency department in the foyer of the hospital to cope with the demand.

While not the first case of thunderstorm asthma in Melbourne, it was the most deadly and the severe. What researchers don’t know is why sometimes a combination of high pollen counts and thunderstorms lead to a mass asthma event, while other times, those two factors combined have little impact on people’s respiratory health at all. What other factors might be playing a part?

What is known is that grass pollen is usually too big to get into the lungs to cause asthma, and instead causes a reaction in the superficial respiratory systems of those with pollen sensitivity: a hay fever reaction such as a runny nose, sore throat and itchy eyes are more common.

But when a thunderstorm occurs, pollen which had settled during the day can be swept back into the air and the moisture in those winds combined with wind power causes the pollen to rupture into smaller pieces, between 0.5mm and 2.5mm in diameter. Those small fragments are then able to penetrate the superficial respiratory system and get into the lungs, triggering asthma and other serious respiratory responses.

Gennaro D’Amato is a professor of respiratory medicine in Italy and chairman of the World Allergy Organisation’s climate change, biodiversity and allergy committee. He is the world expert on thunderstorm asthma and one of the most published authors on the phenomena in the scientific literature.

He has been monitoring thunderstorm asthma events throughout the world and says they have also been seen in London in the UK, Naples in Italy, and Wagga Wagga in New South Wales.

A sudden and extreme asthma outbreak that occurred in London in June 1994 coincided with a heavy thunderstorm, D’Amato said. In the space of just 30 hours, 640 patients with asthma or other airway diseases attended London hospitals, nearly 10 times the usual number. For 283 patients, the storm triggered their first known attack of asthma. And for every patient that did seek help, many more suffered at home.

“Fortunately, even though it can induce severe asthma, outbreaks associated with thunderstorms are neither frequent nor responsible for a high number of disease exacerbations,” D’Amato told Guardian Australia.

“However, the mechanisms involved in the release of allergens from pollens during thunderstorm should be known so that patients can receive information about the risk of an asthma attack, including in those usually only affected by seasonal allergic rhinitis [hay fever].”

The frequency of thunderstorms had recently increased in some geographical areas, he said, particularly in temperate and subtropical climates. Research has shown that thunderstorms and their destructive winds are expected to become more severe as the climate changes.

D’Amato has found a number of characteristics common to all of the asthma epidemics. Their occurrence is closely linked to thunderstorms, are limited to late spring and summer when there are high levels of airborne pollen grains, have an onset close to the arrival of the thunderstorm and to major rises in the concentration of pollen grains, and people with hay fever and asthma and who stay indoors with windows closed during the thunderstorm are unaffected.

Those not undergoing asthma treatment are at major risk, his research has also found. In the Melbourne epidemic on Monday, between 20 and 40% of those affected had never had asthma before, and so would not have been undergoing treatment.

Associate Prof Paul Beggs, an environmental health scientist with Macquarie University in Sydney, is best known for his research on climate change and its impact on allergens such as pollen.

Some research had found that the potency of pollen grains had been increasing, he said. Anthropological climate change through the release of carbon dioxide into the atmosphere could be responsible for this growing pollen potency, he said.


Between 20 and 40% of those affected had never had asthma before, and so would not have been undergoing treatment

“Plants use carbon dioxide in photosynthesis,” he said. “It’s like if you change your diet, there are changes in your body. So plants use carbon dioxide through photosynthesis, and if you change the concentration of carbon dioxide in the atmosphere then their growth conditions are changing.”

“A few smart scientists thought to put these highly allergenic plants into a glass house where we can control all the conditions, from the temperature to light, water and levels of carbon dioxide.”

What they found, he said, was increasing the amount of carbon dioxide led to a whole range of changes in the plants, including more pollen and more potent pollen.

“All of these thing are happening in the background: climate change, increasing pollen potency, and they all mean a thunderstorm asthma episode is more likely than it was 20 years ago.”

Beggs is a researcher with the AusPollen Partnership, a multi-centre cross-disciplinary team of investigators including eminent allergy physicians and scientists looking at pollen aerobiology and climatology. Their work is essential given Australia is the fourth worst country for allergic hay fever and asthma.

The principal investigator on that team, Associate Prof Janet Davies, said another factor researchers believed may trigger asthma is a sudden temperature change, which occurred in Melbourne on Monday as the temperature fell rapidly from 35C into the low 20s. But much more research and data was needed to understand the phenomena, she said.

“The AusPollen Partnership is encouraging people to tell us about their symptoms and triggers, and free app downloads allow people to do this daily if they want to,” she said.

“That will help us understand regional patterns and, by integrating that data with geo-spacial data, will help us understand who is at greater risk and the threshold for triggering a higher risk.”

The difficulty for researchers is that pollen monitoring, though extensive in Melbourne, did not go back far enough to help them develop a clear picture of all the factors triggering thunderstorm asthma. This would allow them to issue alerts when they could see a perfect storm of risk factors about to collide.

But Associate Professor Ed Newbigin from the school of biosciences at the University of Melbourne said thunderstorm asthma was going to be “a hard thing to get a handle on” because of the lack of data.

“The big question is why sometimes high pollen counts combined with thunderstorms sometimes trigger these asthma events and sometimes don’t,” he said.

“We need to understand what other factors work together if we want to reduce thunderstorm asthma. Because in Melbourne, high pollen counts and thunderstorms often coincide. But most of the time when they do, nothing happens.”