Tag Archives: ‘made

Treating a dying child made me reflect on my role as a paramedic

We arrived at the scene in an ambulance to see the usual collection of bystanders clustered around a body. It was a child. She was still alive. A pale grey face, mumbling and moaning, eyes half shut and flickering. There was blood pooling from a wound to the back of her head and one of her legs was facing the wrong way.

The five-year-old girl had been struck by a car. The driver hadn’t been speeding or driving recklessly. The road was quiet. She had been out on her scooter. Suddenly, with a child’s spontaneity, she rode her scooter off the pavement and onto the road. The driver didn’t have time to brake.

We started high-flow oxygen and inserted a plastic airway into her mouth to stop her tongue blocking her airway, taking extreme care not to move her head in case she had a spinal injury. A dressing was placed under her head and her leg was realigned to a neutral position to prevent further tissue damage. Although she was breathing and her lungs sounded normal, we placed a bag valve mask over her mouth.

I shone a light into the child’s eyes. The right pupil was fixed and dilated. I advised the rest of the team of my finding and a colleague started to cry as she knew it meant bad news.

When the helicopter arrived, the doctor administered anaesthetic drugs and passed a tube down the child’s throat to manually control her breathing.

At some point the parents arrived. I can’t remember when, but it was before the helicopter had landed. I remember the mother running up to our huddle of green paramedic shirts and seeing her daughter lying there, her hands clamping over her mouth in horror. I cannot begin to imagine what she was going through. Seeing your small child, grey, moaning, bleeding and unable to respond to you is something no parent should experience. We encouraged her to kneel next to her daughter’s head, hold her hand and keep talking to her. Even now, years later, I’m crying while typing this.

As the crescendo of the ascending helicopter became a distant clatter I reflected on the picturesque setting. This was a tranquil village – in complete contrast to the trauma that had unfolded at its centre.

In the post adrenaline-fuelled, great-team-work atmosphere we bantered with each other. There was dark, dark humour as we checked over our shoulders to make sure the bystanders were out of range. Lots of swearing and jokes that only paramedics remain hardened to. Each of us adding another layer of veneer to shield our bravado.

After a quick debrief back at base we were back on the road, dealing with all the usual mundane shit.

I thought I would be ok.

When I got home my seven-year-old wanted to dance with me in the kitchen while my wife was preparing dinner. I remembered how three short years ago he had been riding his green scooter around our neighbourhood, carefree and happy, jumping off curbs crying: “Watch me do this, watch me do this.”

During dinner I held his hands and remembered how I had held smaller hands a few hours earlier, my blue examination gloves sticky with blood.

I remember an anecdote about a city where the ambulance service went on strike. The police were called upon to fill the gap in emergency medical response. When someone dialled the emergency number they would turn up, throw the patient in the back of a police car, no matter how serious the condition, and rush them to hospital. It was reported that patient survival rates significantly increased during this period, which caused the public to question the utility of the ambulance service.

I was left with similar questions. Two ambulances and a helicopter didn’t make any real difference to the outcome for this little girl. We made a difference to the parents and the bystanders. For as long as we were still treating their child, they held on to the fragile hope that everything would be ok in the end.

I guess sometimes that’s the only difference you can make.

Some details have been changed.

If you would like to contribute to our Blood, sweat and tears series about experiences in healthcare, read our guidelines and get in touch by emailing sarah.johnson@theguardian.com.

Join the Healthcare Professionals Network to read more pieces like this. And follow us on Twitter (@GdnHealthcare) to keep up with the latest healthcare news and views.

If you’re looking for a healthcare job or need to recruit staff, visit Guardian Jobs.

Sick children like my daughter don’t get enough information – so I made an app

Tuesday 29 November 2011 was the darkest of days. On that day six years ago, my wife and I listened in stunned silence as we were given the news that our 13-year-old daughter, Issy, had a rare bone cancer called Ewing’s sarcoma.

That was the start of a year of treatment that involved six hospitals, 18 rounds of chemotherapy, numerous blood transfusions, a failed stem cell harvest, an operation to remove her sacrum and an eight-week NHS-funded trip to the US, where she received proton beam therapy.

We slowly learned a whole new vocabulary, now largely forgotten and one that I hope I never have to relearn.

Without doubt the reason why Issy is fit and well today, and has just celebrated five years cancer-free, is because the clinical care she received was second to none.

But that’s only half the story. While the care was excellent, she was given virtually no information about the people she would meet, the hospital environments she would be treated in or the technology and processes that would be used in her treatment.

What information there was, was directed at us as parents, which left my daughter feeling isolated and ignored. She was resistant to treatments because their purpose wasn’t explained to her beforehand and she was scared of going to hospital as she didn’t know what to expect. This lack of preparedness made her sceptical about the system and has coloured her opinion of health services to this day.

Of course, this experience isn’t unique to Issy. The provision of information for children to prepare them for hospitalisation is diabolically poor. Information is either aimed at parents or the very young. There is virtually nothing for children aged six and up.

I started trawling through academic papers to see what research had been done on the information needs of children going to hospital. I discovered that there is a lot and it all supports the common-sense assumption that patients who have a better understanding of what will happen experience reduced stress and anxiety, which can lead to better clinical outcomes.

The problem is that in a cash-strapped NHS, the long-term strategic health benefits and associated cost savings of giving our children the health information they need and deserve is eclipsed by the short-term pressure to cut expenditure.

I started to think about what I could do to address this information gap, not just for cancer patients like Issy but for any child about to go into hospital. I wanted to find a way of delivering health information directly to children in a way that would make them feel engaged, empowered and informed – while having fun at the same time.

I’m fortunate that in my day job I’m the managing director of a digital innovation agency called Corporation Pop. With funding from Nominet Trust and the NHS, my team and I have spent the past couple of years developing a mobile app that we hope will address some of the problems Issy experienced.

The app aims to reduce stress and anxiety by introducing children to hospital environments, staff and processes in a playful and informative way, using 3D augmented-reality models, an artificially intelligent avatar guide that supports conversational interaction and games that demystify complex technology.

We have just heard that we’ve been successful with a large funding bid. This will not only support the final push towards launch, but will also fund independent clinical research into the efficacy of our app – hopefully proving that if we can put information in the hands of children, using language they understand, we can reduce anxiety and improve clinical outcomes.

This has been a cathartic journey for me. Immersing myself in this project has allowed me to reflect on what my daughter went through without having to get too close to the painful memories. I’ve been able to use that experience to think about how we can help children embarking on a journey through the hospital system.

If you would like to contribute to our Blood, sweat and tears series about experiences in healthcare, read our guidelines and get in touch by emailing sarah.johnson@theguardian.com.

Join the Healthcare Professionals Network to read more pieces like this. And follow us on Twitter (@GdnHealthcare) to keep up with the latest healthcare news and views.

If you’re looking for a healthcare job or need to recruit staff, visit Guardian Jobs.

Pregnant in Ireland: ‘I had no control and was made to feel ashamed’

I had my first antenatal appointment in Ireland three years ago. I was about six weeks pregnant. Like most first time mothers I was consumed by questions: when would I feel movement? When would I have my first scan? What were my birth options? My enthusiasm was met with gentle condescension by my doctor.

They explained that most women wouldn’t even know they were pregnant at this stage and that it certainly wasn’t recommended to tell anyone other than my partner and maybe a few close family members until I was at least 12 weeks into the pregnancy. I changed the subject, struggling to conceal my embarrassment.

I had been training for a long distance run and I asked if it would be safe to continue. This time the condescension wasn’t quite so gentle. I was told that it wasn’t all about me anymore. My doctor had two patients now and that’s how they had to treat it. “What if something happened? You’d never be able to forgive yourself”. Now I didn’t feel embarrassed. I felt ashamed. I didn’t ask any more questions after that.


One mother I know described being completely dismissed by her GP after suffering two miscarriages

It was only later I reflected on the irony of the situation, that I could have my connection to my pregnancy so trivialised while simultaneously being shamed for my allegedly callous disregard for my unborn child. This is the bizarre cruelty of pregnancy in Ireland.

Frequently, women who miscarry receive virtually no support in Ireland and can even be subject to ridicule. One mother I know described being completely dismissed by her GP after suffering two miscarriages: “He became irritated and said that if it weren’t for overly sensitive pregnancy tests, I wouldn’t have even known I was pregnant,” she said. “Afterwards I always felt like I should apologise when telling people, in case I offended them somehow by oversharing.”

Our society does not perceive miscarriage as bereavement. The 12-week rule implies we don’t even want to know about early pregnancy, just in case we might have to acknowledge the profound loss many experience when they miscarry. Yet under Irish law the right to life of the unborn is equal to that of the mother.

As such pregnant women in Ireland are of equal worth as something our society values so little as to render it virtually invisible in those first 12 weeks. How can women be respected as full and equal members of society when their lives are devalued in such a way? The simple answer is: they can’t.

We have seen the harrowing consequences of the eighth amendment for women including Savita Halappanavar and Miss Y. When such cases occur they are lamented by government representatives as tragic anomalies and we are reassured with the mantra that Ireland is one of the safest places in the world to give birth.

Must women suffer grievous physical or psychological trauma, even death, before their discrimination is noteworthy?


As our knowledge of prenatal development grows, such control is insidiously tolerated

The truth is that due to the eighth amendment, women in Ireland do not retain the right to informed consent or refusal of treatment during pregnancy and birth. The eighth amendment ensures state control, not only of the right to a termination, but of bodily integrity, treatment and information. As a result the care received can be subject to medical convenience or the moral judgement of professionals.

While pregnant with her first son at the age of 38, another mother I know was concerned about the risk of Down’s syndrome: “I wanted to be able to prepare myself emotionally, as well as in practical terms, so I asked my GP to send me for a nuchal fold test”.

Despite the fact that this test is available in Ireland, her doctor became accusatory and said: “Well, the question you have to ask yourself is, what are you going to do with that information?” She was repeatedly fobbed off until eventually the window during which the test could be performed closed. “If my baby had Down’s,” she said, “I just wanted the opportunity to tell family and friends during my pregnancy, so no one would commiserate instead of congratulating us when he was born. That was all.”

The control of pregnant women is not confined to Ireland. As our knowledge of prenatal development grows, such control is insidiously tolerated. The behaviour of pregnant women is increasingly monitored. Do they drink? Smoke? Exercise too much or too little? Jump on trampolines? As their autonomy diminishes, their blame is assured.

However, by enshrining the eighth amendment within the Irish constitution this control isn’t just tolerated, isn’t just legitimised, it is protected as a significant value that defines Irish society.

How much longer can we accept that?

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.

Join the Healthcare Professionals Network to read more pieces like this. And follow us on Twitter (@GdnHealthcare) to keep up with the latest healthcare news and views.

If you’re looking for a healthcare job or need to recruit staff, visit Guardian Jobs.

Pregnant in Ireland: ‘I had no control and was made to feel ashamed’

I had my first antenatal appointment in Ireland three years ago. I was about six weeks pregnant. Like most first time mothers I was consumed by questions: when would I feel movement? When would I have my first scan? What were my birth options? My enthusiasm was met with gentle condescension by my doctor.

They explained that most women wouldn’t even know they were pregnant at this stage and that it certainly wasn’t recommended to tell anyone other than my partner and maybe a few close family members until I was at least 12 weeks into the pregnancy. I changed the subject, struggling to conceal my embarrassment.

I had been training for a long distance run and I asked if it would be safe to continue. This time the condescension wasn’t quite so gentle. I was told that it wasn’t all about me anymore. My doctor had two patients now and that’s how they had to treat it. “What if something happened? You’d never be able to forgive yourself”. Now I didn’t feel embarrassed. I felt ashamed. I didn’t ask any more questions after that.


One mother I know described being completely dismissed by her GP after suffering two miscarriages

It was only later I reflected on the irony of the situation, that I could have my connection to my pregnancy so trivialised while simultaneously being shamed for my allegedly callous disregard for my unborn child. This is the bizarre cruelty of pregnancy in Ireland.

Frequently, women who miscarry receive virtually no support in Ireland and can even be subject to ridicule. One mother I know described being completely dismissed by her GP after suffering two miscarriages: “He became irritated and said that if it weren’t for overly sensitive pregnancy tests, I wouldn’t have even known I was pregnant,” she said. “Afterwards I always felt like I should apologise when telling people, in case I offended them somehow by oversharing.”

Our society does not perceive miscarriage as bereavement. The 12-week rule implies we don’t even want to know about early pregnancy, just in case we might have to acknowledge the profound loss many experience when they miscarry. Yet under Irish law the right to life of the unborn is equal to that of the mother.

As such pregnant women in Ireland are of equal worth as something our society values so little as to render it virtually invisible in those first 12 weeks. How can women be respected as full and equal members of society when their lives are devalued in such a way? The simple answer is: they can’t.

We have seen the harrowing consequences of the eighth amendment for women including Savita Halappanavar and Miss Y. When such cases occur they are lamented by government representatives as tragic anomalies and we are reassured with the mantra that Ireland is one of the safest places in the world to give birth.

Must women suffer grievous physical or psychological trauma, even death, before their discrimination is noteworthy?


As our knowledge of prenatal development grows, such control is insidiously tolerated

The truth is that due to the eighth amendment, women in Ireland do not retain the right to informed consent or refusal of treatment during pregnancy and birth. The eighth amendment ensures state control, not only of the right to a termination, but of bodily integrity, treatment and information. As a result the care received can be subject to medical convenience or the moral judgement of professionals.

While pregnant with her first son at the age of 38, another mother I know was concerned about the risk of Down’s syndrome: “I wanted to be able to prepare myself emotionally, as well as in practical terms, so I asked my GP to send me for a nuchal fold test”.

Despite the fact that this test is available in Ireland, her doctor became accusatory and said: “Well, the question you have to ask yourself is, what are you going to do with that information?” She was repeatedly fobbed off until eventually the window during which the test could be performed closed. “If my baby had Down’s,” she said, “I just wanted the opportunity to tell family and friends during my pregnancy, so no one would commiserate instead of congratulating us when he was born. That was all.”

The control of pregnant women is not confined to Ireland. As our knowledge of prenatal development grows, such control is insidiously tolerated. The behaviour of pregnant women is increasingly monitored. Do they drink? Smoke? Exercise too much or too little? Jump on trampolines? As their autonomy diminishes, their blame is assured.

However, by enshrining the eighth amendment within the Irish constitution this control isn’t just tolerated, isn’t just legitimised, it is protected as a significant value that defines Irish society.

How much longer can we accept that?

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.

Join the Healthcare Professionals Network to read more pieces like this. And follow us on Twitter (@GdnHealthcare) to keep up with the latest healthcare news and views.

If you’re looking for a healthcare job or need to recruit staff, visit Guardian Jobs.

Pregnant in Ireland: ‘I had no control and was made to feel ashamed’

I had my first antenatal appointment in Ireland three years ago. I was about six weeks pregnant. Like most first time mothers I was consumed by questions: when would I feel movement? When would I have my first scan? What were my birth options? My enthusiasm was met with gentle condescension by my doctor.

They explained that most women wouldn’t even know they were pregnant at this stage and that it certainly wasn’t recommended to tell anyone other than my partner and maybe a few close family members until I was at least 12 weeks into the pregnancy. I changed the subject, struggling to conceal my embarrassment.

I had been training for a long distance run and I asked if it would be safe to continue. This time the condescension wasn’t quite so gentle. I was told that it wasn’t all about me anymore. My doctor had two patients now and that’s how they had to treat it. “What if something happened? You’d never be able to forgive yourself”. Now I didn’t feel embarrassed. I felt ashamed. I didn’t ask any more questions after that.


One mother I know described being completely dismissed by her GP after suffering two miscarriages

It was only later I reflected on the irony of the situation, that I could have my connection to my pregnancy so trivialised while simultaneously being shamed for my allegedly callous disregard for my unborn child. This is the bizarre cruelty of pregnancy in Ireland.

Frequently, women who miscarry receive virtually no support in Ireland and can even be subject to ridicule. One mother I know described being completely dismissed by her GP after suffering two miscarriages: “He became irritated and said that if it weren’t for overly sensitive pregnancy tests, I wouldn’t have even known I was pregnant,” she said. “Afterwards I always felt like I should apologise when telling people, in case I offended them somehow by oversharing.”

Our society does not perceive miscarriage as bereavement. The 12-week rule implies we don’t even want to know about early pregnancy, just in case we might have to acknowledge the profound loss many experience when they miscarry. Yet under Irish law the right to life of the unborn is equal to that of the mother.

As such pregnant women in Ireland are of equal worth as something our society values so little as to render it virtually invisible in those first 12 weeks. How can women be respected as full and equal members of society when their lives are devalued in such a way? The simple answer is: they can’t.

We have seen the harrowing consequences of the eighth amendment for women including Savita Halappanavar and Miss Y. When such cases occur they are lamented by government representatives as tragic anomalies and we are reassured with the mantra that Ireland is one of the safest places in the world to give birth.

Must women suffer grievous physical or psychological trauma, even death, before their discrimination is noteworthy?


As our knowledge of prenatal development grows, such control is insidiously tolerated

The truth is that due to the eighth amendment, women in Ireland do not retain the right to informed consent or refusal of treatment during pregnancy and birth. The eighth amendment ensures state control, not only of the right to a termination, but of bodily integrity, treatment and information. As a result the care received can be subject to medical convenience or the moral judgement of professionals.

While pregnant with her first son at the age of 38, another mother I know was concerned about the risk of Down’s syndrome: “I wanted to be able to prepare myself emotionally, as well as in practical terms, so I asked my GP to send me for a nuchal fold test”.

Despite the fact that this test is available in Ireland, her doctor became accusatory and said: “Well, the question you have to ask yourself is, what are you going to do with that information?” She was repeatedly fobbed off until eventually the window during which the test could be performed closed. “If my baby had Down’s,” she said, “I just wanted the opportunity to tell family and friends during my pregnancy, so no one would commiserate instead of congratulating us when he was born. That was all.”

The control of pregnant women is not confined to Ireland. As our knowledge of prenatal development grows, such control is insidiously tolerated. The behaviour of pregnant women is increasingly monitored. Do they drink? Smoke? Exercise too much or too little? Jump on trampolines? As their autonomy diminishes, their blame is assured.

However, by enshrining the eighth amendment within the Irish constitution this control isn’t just tolerated, isn’t just legitimised, it is protected as a significant value that defines Irish society.

How much longer can we accept that?

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.

Join the Healthcare Professionals Network to read more pieces like this. And follow us on Twitter (@GdnHealthcare) to keep up with the latest healthcare news and views.

If you’re looking for a healthcare job or need to recruit staff, visit Guardian Jobs.

Pregabalin, known as ‘new valium’, to be made class C drug after deaths

A prescription drug described as the “new valium” is to be classified as a class C controlled substance after it was linked to a growing number of UK deaths.

Pregabalin – a substance used to treat nerve pain, epilepsy and anxiety – is increasingly being handed out too readily and being used recreationally, according to doctors and pharmacists. They say that when it is mixed with other substances it can lead to overdose. Deaths connected to pregabalin have risen from four in 2012 to 111 last year, according to the Office for National Statistics.

Data provided by NHS Digital shows that prescriptions for pregabalin have shot up more than 11-fold in the last decade, from 476,102 in 2006 to 5,547,560 last year. The government has now accepted in principle that pregabalin should be reclassified as a class C controlled substance, which would mean patients could not obtain a repeat prescription.

Pregabalin prescriptions

Yasir Abbasi, a consultant psychiatrist and clinical director for addiction services at Mersey Care NHS foundation trust, said the rising prescription numbers were worrying as, if used inappropriately, pregabalin could be hazardous.

“Doctors need to be cautious about who they are giving it to and be aware of the potential of the drug to be misused and the fact it could be addictive because there is not much information at the moment. The drug was approved for medical use in 2004 and we need more robust evidence,” Abbasi said.

Addaction, the largest drug and alcohol charity, is calling for GPs to be given guidance about how to prescribe pregabalin, particularly to people with substance misuse history. The charity noted that deaths linked to the drug had risen more quickly than those linked to new psychoactive substances.

Pregabalin deaths

Rachel Britton, Addaction’s lead pharmacist, said: “The deaths linked to it – that will be people taking a cocktail of substances that affect the central nervous system eg heroin, pregabalin and benzodiazepines. It eventually depresses respiration, controlled by the brain, and people who take these cocktails die.”

Those who use pregabalin recreationally call it “Budweiser” because it induces a state similar to drunkenness. It makes users feel relaxed and euphoric in a similar way to tranquilisers. It can also enhance the euphoric effects of other drugs, such as opiates, and is likely to increase the risks when taken in this way.

Abbasi said that those misusing pregabalin included people who took it on top of other drugs but also those who were prescribed it who, without talking to their doctor, then started taking a higher dose.

Testimony from doctors, pharmacists and drug counsellors, who were responding to a Guardian callout, suggests abuse of the drug is widespread.

One emergency medicine nurse, who asked to remain anonymous, said her department had seen five cases a month since summer 2016, when someone had overdosed. She said: “Most people who are affected are those with other addiction problems, and ‘pregabs’ is taken along with other substances.”

A family doctor working in Scotland, who also asked for anonymity, said: “Pregabalin is overprescribed by GPs and other doctors for all types of pain despite it only being licensed for neuropathic pain and generalised anxiety disorder. Others easily access it off the internet. It is used by drug users in order to enhance the effects of other drugs they are taking … This is only going to increase as the prescription of both continues to increase.”

Another anonymous respondent, who works in a hostel, said: “Pregabalin has been the cause of several residents overdosing after using this with other substances. In this environment we suspect residents who are prescribed Pregabalin for anxiety and pain of dealing it to other residents … Over the last six months paramedics have been called out over half a dozen times due to these incidents and it is only through pure luck no one has died and feels only a matter of time before this happens.”

Pharmacists were originally advised not to accept requests for cheaper, generic versions of the drug, but this changed in July, when Pfizer’s patent expired. There are concerns that this has prompted a further rise in the drug’s misuse.

A statement from Pfizer said: “When prescribed and administered appropriately, pregabalin is an important and effective treatment option for many adults living with chronic neuropathic pain, generalised anxiety disorder and epilepsy.”

Earlier this year the British Medical Association (BMA) called for the drug to be made a controlled substance in the UK in the same class as steroids and valium. Last year the Advisory Council on the Misuse of Drugs wrote a letter to the government making the same recommendation. It would mean the drug could not be repeat-dispensed and prescriptions would only be valid for one month. The letter warned of the risk of addiction for both pregabalin and a similar drug called gabapentin.

The minister for crime, safeguarding and vulnerability, Sarah Newton, said: “Any death related to misuse of drugs is a tragedy and that is why we have published a comprehensive new drugs strategy to tackle the illicit drug trade, protect the most vulnerable and help those with drug dependency to recover and turn their lives around.

“We have accepted the Advisory Council on the Misuse of Drugs advice to control pregabalin and gabapentin as class C drugs in principle, subject to the outcome of a public consultation to assess the impact on the healthcare sector. We will launch the consultation shortly.”

How we made the Don’t Die of Ignorance Aids campaign

Norman Fowler, health secretary, 1981-87

I first heard about Aids as a serious issue in 1985. I didn’t know much about gay culture at the time; I didn’t have any gay friends. But the attacks on gay people motivated me. Some people thought anyone with HIV should be left to their own fate, and there were certainly people in government who felt uneasy about homosexuality. I thought – this is unjust.

We had no knowledge of this disease and no drugs with which to treat it. I was reading a note the other day from the chief medical officer at the time and some of the predictions as to what could happen were terrifying – we were talking millions and millions of people becoming infected. That’s why we launched what is still the biggest public health campaign there’s ever been in this country with leaflets sent out to every home.

Norman Fowler in 1986.


‘Margaret Thatcher wasn’t a natural supporter’ … Fowler in 1986. Photograph: PA

Not everyone was on board with the idea. Margaret Thatcher wasn’t a natural supporter. She had the view that if you told young people about HIV and unprotected sex, you’d be telling them about things they didn’t know about, and the implication was that they’d want to go out there and do it. I always thought that was an eccentric view. We were warning people, not urging them.

The TV adverts we ran were certainly hard-hitting. There was no point spending a load of money to send out innocuous adverts. We did follow-up research that said 90% of the public recognised the advert and a vast number changed their behaviour because of it. Columnists at the time said we were going over the top but the public didn’t agree. It was a life and death situation. I’d been to San Francisco, where the wards were full of young men dying. Same in Germany, same in the United Kingdom. There was no time to think about whether it might offend one or two people. And history shows we were right – people took care and HIV cases went down.

I’ve heard it said that the advert was so scary it put a whole generation off having sex. Well I don’t think there’s any evidence that it actually did! What I do know is that I get letters from time to time from people who say thank you – that it saved their life. In politics, you don’t get that sort of letter very often.

[embedded content]
‘Scaring people was deliberate’ … Watch AIDS: Monolith, the Don’t Die of Ignorance campaign video.

Malcolm Gaskin, designer

My agency, TBWA, had been working on health campaigns for the government for five or so years – nurse recruitment, blood donations, rubella epidemics. So when Aids hit the news they turned to us. The big problem was that nobody knew anything about it. It was like an alien plague. Where did it come from? How big would it get? Panic and speculation was spreading.

Norman Fowler and his team gathered a hefty bunch of people around – people from the prison services, the army, immigration and social services – to discuss how to tackle it. It was agreed we would attack the disease itself rather than the people who had it, which is how other agencies might have gone about it.

One of the tombstones from the film.
One of the tombstones from the film. Photograph: BFI on YouTube

Nobody even knew what to call it. Acquired immune deficiency syndrome wasn’t very catchy, but when they came up with the acronym Aids it was something we could work with. For the posters we went for modern typography – we wanted people to know this was a new thing, not just another bunch of medical letters –with an underscore on the word Aids. Almost like a logo. The phrase “don’t die of ignorance” was coined by [fellow designer] David O’Connor-Thompson. The death part was important – and knowledge was really the only thing we had at the time to defend ourselves against it.

With the TV advert we knew we had about 40 seconds to get people’s attention. That’s not enough time to explain anything complex – we just needed viewers to make sure they read the leaflets that would be arriving through their door. Scaring people was deliberate. The director Nic Roeg was specifically chosen for his doom and gloom sci-fi aesthetic. It starts with a volcano because it’s about the end of the world. Originally it was even scarier: we had metallic sirens blaring like the beginning of a nuclear war. But Thatcher thought we were overdramatising it and she was probably right. If we’d kept it like that I think everyone would have headed for the beaches.

People remember the tombstone but there were a lot of smaller, softer campaigns that went with it – tailored messages for people who might be affected such as dentists or tattooists. We had to inform people and reassure them – we didn’t want hairdressers shutting down because suddenly people were scared of catching something from scissors. We also had post marked by Royal Mail with the campaign slogan. I know some people didn’t like that – receiving a letter from their auntie with “don’t die of ignorance” stamped on it.

I knew at the time that what we were working on would be history so I kept a lot of stuff – including an actual black granite Aids tombstone. Not the original – that was three tonnes – but I’ve got one in lock-up that’s about a hundredweight. I had to get it out the other day because it’s being exhibited, so it was in the garden when my builder arrived. He jumped back and shuddered when he saw it – so it can definitely still scare people.

Can Graphic Design Save Your Life? is at the Wellcome Collection, London, from 7 September.

How we made the Don’t Die of Ignorance Aids campaign

Norman Fowler, health secretary, 1981-87

I first heard about Aids as a serious issue in 1985. I didn’t know much about gay culture at the time; I didn’t have any gay friends. But the attacks on gay people motivated me. Some people thought anyone with HIV should be left to their own fate, and there were certainly people in government who felt uneasy about homosexuality. I thought – this is unjust.

We had no knowledge of this disease and no drugs with which to treat it. I was reading a note the other day from the chief medical officer at the time and some of the predictions as to what could happen were terrifying – we were talking millions and millions of people becoming infected. That’s why we launched what is still the biggest public health campaign there’s ever been in this country with leaflets sent out to every home.

Norman Fowler in 1986.


‘Margaret Thatcher wasn’t a natural supporter’ … Fowler in 1986. Photograph: PA

Not everyone was on board with the idea. Margaret Thatcher wasn’t a natural supporter. She had the view that if you told young people about HIV and unprotected sex, you’d be telling them about things they didn’t know about, and the implication was that they’d want to go out there and do it. I always thought that was an eccentric view. We were warning people, not urging them.

The TV adverts we ran were certainly hard-hitting. There was no point spending a load of money to send out innocuous adverts. We did follow-up research that said 90% of the public recognised the advert and a vast number changed their behaviour because of it. Columnists at the time said we were going over the top but the public didn’t agree. It was a life and death situation. I’d been to San Francisco, where the wards were full of young men dying. Same in Germany, same in the United Kingdom. There was no time to think about whether it might offend one or two people. And history shows we were right – people took care and HIV cases went down.

I’ve heard it said that the advert was so scary it put a whole generation off having sex. Well I don’t think there’s any evidence that it actually did! What I do know is that I get letters from time to time from people who say thank you – that it saved their life. In politics, you don’t get that sort of letter very often.

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‘Scaring people was deliberate’ … Watch AIDS: Monolith, the Don’t Die of Ignorance campaign video.

Malcolm Gaskin, designer

My agency, TBWA, had been working on health campaigns for the government for five or so years – nurse recruitment, blood donations, rubella epidemics. So when Aids hit the news they turned to us. The big problem was that nobody knew anything about it. It was like an alien plague. Where did it come from? How big would it get? Panic and speculation was spreading.

Norman Fowler and his team gathered a hefty bunch of people around – people from the prison services, the army, immigration and social services – to discuss how to tackle it. It was agreed we would attack the disease itself rather than the people who had it, which is how other agencies might have gone about it.

One of the tombstones from the film.
One of the tombstones from the film. Photograph: BFI on YouTube

Nobody even knew what to call it. Acquired immune deficiency syndrome wasn’t very catchy, but when they came up with the acronym Aids it was something we could work with. For the posters we went for modern typography – we wanted people to know this was a new thing, not just another bunch of medical letters –with an underscore on the word Aids. Almost like a logo. The phrase “don’t die of ignorance” was coined by [fellow designer] David O’Connor-Thompson. The death part was important – and knowledge was really the only thing we had at the time to defend ourselves against it.

With the TV advert we knew we had about 40 seconds to get people’s attention. That’s not enough time to explain anything complex – we just needed viewers to make sure they read the leaflets that would be arriving through their door. Scaring people was deliberate. The director Nic Roeg was specifically chosen for his doom and gloom sci-fi aesthetic. It starts with a volcano because it’s about the end of the world. Originally it was even scarier: we had metallic sirens blaring like the beginning of a nuclear war. But Thatcher thought we were overdramatising it and she was probably right. If we’d kept it like that I think everyone would have headed for the beaches.

People remember the tombstone but there were a lot of smaller, softer campaigns that went with it – tailored messages for people who might be affected such as dentists or tattooists. We had to inform people and reassure them – we didn’t want hairdressers shutting down because suddenly people were scared of catching something from scissors. We also had post marked by Royal Mail with the campaign slogan. I know some people didn’t like that – receiving a letter from their auntie with “don’t die of ignorance” stamped on it.

I knew at the time that what we were working on would be history so I kept a lot of stuff – including an actual black granite Aids tombstone. Not the original – that was three tonnes – but I’ve got one in lock-up that’s about a hundredweight. I had to get it out the other day because it’s being exhibited, so it was in the garden when my builder arrived. He jumped back and shuddered when he saw it – so it can definitely still scare people.

Can Graphic Design Save Your Life? is at the Wellcome Collection, London, from 7 September.

Our daughter lived five days. We thank the doctors and nurses who made it possible | Ed Tolputt

There has been a lot in the news recently to remind us of our daughter, Martha, who was born two years ago in a critical condition. The news only served to remind my wife and me of how profoundly grateful we were, and are, for the love and care that the doctors and nurses of the NHS showed our baby girl – and we would like to say thank you.

Martha was born on 22 May 2015 at the John Radcliffe hospital in Oxford. She was the big girl in the Therma Kid vest with the doting parents who were probably a little bit in the way. Sorry about that.

During labour, my wife, Sophie, suffered a concealed placental abruption – Martha was without oxygen for some time. The ultrasound revealed that her heart rate was low and Sophie was taken to have an emergency C-section. Martha was born a few minutes later. A doctor cried with us as she explained that Martha had severely impaired brain function and was unlikely to live long. This doctor spoke to us with clarity and compassion and she and her colleagues did lots of clever stuff with lots of clever machines that I pretended to understand because I’m a science teacher. I didn’t understand them, but I loved how they kept our daughter with us.

The level of care given to Martha in the baby unit was extraordinary – Martha’s dedicated nurse, the close attention of her expert consultant and the state-of-the-art medical equipment. Thank you all for keeping Martha comfortable and safe. We were encouraged to play an active role as Martha’s parents – we read her stories and we sang her songs. When I changed her nappy, I was, for a brief moment, the best dad in the world. These dedicated professionals made us feel important.

On the afternoon of the second day, we were told that the situation had improved – Martha’s brain function was on the up. “We will have another night with Martha,” I said to our relatives outside the hospital as the sun shone. A passing doctor took a lovely photo of us all celebrating in the park.

And so the next day… We were all there, in that little room, for the discussion. One of the doctors said: “I think tomorrow would be a good time to ask Martha the question” and we agreed. Despite the tears, Sophie and I were entirely at peace with the decision that was made that morning.

That evening, we each held Martha. It took five nurses – to hold the life support equipment, the ventilator etc. It was so exhilarating finally to cuddle our daughter. At lunchtime on Tuesday 26 May, Sophie and I held hands as Martha’s ventilator was carefully removed. A few valiant breaths later, the consultant gave us a regretful smile; Sophie let go of my hand and took Martha in her arms. She talked quietly to our little girl as she slipped peacefully away.

You – the doctors and nurses of the NHS – gave life to Martha. You gave her five happy days, surrounded by care and love and laughter. That Sophie and I can think back on Martha’s life with deep pride and natural sadness, without the invasion of blame or resentment, is something for which we are immeasurably grateful.

Martha’s younger brother is five weeks old. A week for every day of Martha’s short life and yet he has barely begun. I can’t wait to tell him about his big sister and her charmed life. He will be so proud.

Ed Tolputt has donated his fee for this piece to SSNAP (Support for the Sick Newborn and their Parents)

Our daughter lived five days. We thank the doctors and nurses who made it possible | Ed Tolputt

There has been a lot in the news recently to remind us of our daughter, Martha, who was born two years ago in a critical condition. The news only served to remind my wife and me of how profoundly grateful we were, and are, for the love and care that the doctors and nurses of the NHS showed our baby girl – and we would like to say thank you.

Martha was born on 22 May 2015 at the John Radcliffe hospital in Oxford. She was the big girl in the Therma Kid vest with the doting parents who were probably a little bit in the way. Sorry about that.

During labour, my wife, Sophie, suffered a concealed placental abruption – Martha was without oxygen for some time. The ultrasound revealed that her heart rate was low and Sophie was taken to have an emergency C-section. Martha was born a few minutes later. A doctor cried with us as she explained that Martha had severely impaired brain function and was unlikely to live long. This doctor spoke to us with clarity and compassion and she and her colleagues did lots of clever stuff with lots of clever machines that I pretended to understand because I’m a science teacher. I didn’t understand them, but I loved how they kept our daughter with us.

The level of care given to Martha in the baby unit was extraordinary – Martha’s dedicated nurse, the close attention of her expert consultant and the state-of-the-art medical equipment. Thank you all for keeping Martha comfortable and safe. We were encouraged to play an active role as Martha’s parents – we read her stories and we sang her songs. When I changed her nappy, I was, for a brief moment, the best dad in the world. These dedicated professionals made us feel important.

On the afternoon of the second day, we were told that the situation had improved – Martha’s brain function was on the up. “We will have another night with Martha,” I said to our relatives outside the hospital as the sun shone. A passing doctor took a lovely photo of us all celebrating in the park.

And so the next day… We were all there, in that little room, for the discussion. One of the doctors said: “I think tomorrow would be a good time to ask Martha the question” and we agreed. Despite the tears, Sophie and I were entirely at peace with the decision that was made that morning.

That evening, we each held Martha. It took five nurses – to hold the life support equipment, the ventilator etc. It was so exhilarating finally to cuddle our daughter. At lunchtime on Tuesday 26 May, Sophie and I held hands as Martha’s ventilator was carefully removed. A few valiant breaths later, the consultant gave us a regretful smile; Sophie let go of my hand and took Martha in her arms. She talked quietly to our little girl as she slipped peacefully away.

You – the doctors and nurses of the NHS – gave life to Martha. You gave her five happy days, surrounded by care and love and laughter. That Sophie and I can think back on Martha’s life with deep pride and natural sadness, without the invasion of blame or resentment, is something for which we are immeasurably grateful.

Martha’s younger brother is five weeks old. A week for every day of Martha’s short life and yet he has barely begun. I can’t wait to tell him about his big sister and her charmed life. He will be so proud.

Ed Tolputt has donated his fee for this piece to SSNAP (Support for the Sick Newborn and their Parents)