Category Archives: Cholesterol

Cancer patients’ grey hair unexpectedly darkens in drug study

A group of cancer patients’ grey hair has unexpectedly darkened after they took new types of drugs, researchers have revealed.

Chemotherapy is known to make patients’ hair fall out, but the 14 people involved were all being treated with new immunotherapy drugs that work differently and have different side effects from chemotherapy. A Spanish study suggests those may include restoring hair pigment, at least in patients with lung cancer.

Noelia Rivera, a dermatologist at Autonomous University of Barcelona, said they thought it could be an isolated case when it happened with the first patient. But the research team found the same thing when they asked other patients for photographs of themselves from before treatment.

The 14 people were among 52 patients with lung cancer being followed to see whether they developed bad side effects from the drugs — Keytruda, Opdivo and Tecentriq.

While most patients did not have a hair colour change, the 14 cases suggest it is not an isolated finding. In 13 patients, hair turned darkish brown or black; in one patient, it turned black in patches.

The same drugs have been linked previously with hair losing colour in patients with another cancer, melanoma.

All but one of the 14 patients in the Spanish study responded better to treatment than other patients, suggesting that hair darkening might be an indication that the drugs are working, the researchers said.

Rivera said they were continuing with the study to search for an explanation.

“It’s a fascinating report – one of those things that comes out of the blue,” said June Robinson, a Northwestern University research professor in dermatology. Robinson is also editor of the medical journal JAMA Dermatology, which published the study online this month.

She said the results deserved a deeper look but cautioned that it was too soon to suggest that they might lead to new treatments for unwanted grey hair.

Rivera noted that the drugs used in the study had serious side effects that made them unsafe for healthy people. But if it is confirmed that they do change hair colour, a different drug could be developed to treat grey hair, she said.

The pharmaceutical industry has previously capitalised on unexpected drug side effects. Examples include the male pattern baldness drug Propecia, the eyelash growing drug Latisse, and Botox anti-wrinkle injections. Active ingredients in these drugs were initially approved to treat enlarged prostates, eye pressure problems, and eye muscle spasms.

Government announces plans to cut smoking rates in adults to 12%

The government has announced plans to cut smoking rates among adults in England from 15.5% to no more than 12% by 2022.

Its long-awaited tobacco control plan, which was due to be published last summer, also targets a reduction in the number of 15-year-olds who regularly smoke, from 8% to 3% or lower; and a fall in the proportion of pregnant women smoking, from 10.5% to no more than 6% over the same period.

It also seeks to reduce the “inequality gap”, whereby smoking rates are highest and most damaging to health among the least well-off.

Doctors and healthcare experts had been urging Theresa May to publish the new plan for months, reminding her of her pledge to reduce the gap between rich and poor. Half of the nine-year difference in their life expectancy is caused by smoking.

In the foreword to the plan, published on Tuesday, Steve Brine, parliamentary undersecretary of state for public health and primary care, writes: “This injustice in the variation in smoking prevalence can be seen across England; from places where adult smoking is as low as 5% to others where smoking remains above 25%. The prevalence remains even higher in people with mental health conditions, where more than 40% of adults with a serious mental illness smoke. We want to address this. Our vision is nothing less than to create a smoke-free generation,”

To achieve its objectives, the government says it will provide access to training for all health professionals on how to help patients quit, especially those in mental health services. It also wants to create a smoke-free NHS by 2020 by encouraging smokers using, visiting and working in the health service to give up. It calls for local solutions where prevalence is high and says high duty rates for tobacco products will be maintained. Additionally, more information will be provided to the public on the safety of e-cigarettes and their effectiveness as smoking cessation aids.

Doctors and healthcare professionals welcomed publication of the plan but said more investment was needed to bring smoking rates down further.

Professor Parveen Kumar, chair of the BMA board of science, said: “If we’re to stop the 79,000 annual deaths in England attributed to smoking, smoking cessation services and tobacco control measures must be adequately funded. Yet local authorities are reducing smoking cessation budgets, merging services into unwieldy departments or cutting services altogether.

“Cuts to these highly cost-effective services will only increase health inequalities and demand on tomorrow’s GP surgeries and hospital wards.”

The British Lung Foundation said the targets for reducing smoking were ambitious but also cautioned about cuts to local smoking cessation services.

Cathy Warwick, chief executive at the Royal College of Midwives, said training of staff was essential but added: “No matter how good the training, this cannot be fully effective if midwives cannot signpost women on to smoking cessation services. We are seeing cuts to public health budgets and smoking cessation services are being affected. This has got to be reversed and investment in smoking cessation services has to be stepped up.”

Smoking prevalence has fallen from 20.2% among adults in 2011 to 15% now – the lowest level since records began. It still costs the economy in excess of £11bn per year, including £2.5bn that falls on to the NHS.

Simon Clark, director of the smokers’ group Forest, urged the government to “stop lecturing smokers” and said the plan should have put “education and choice ahead of prohibition and coercion”.

UK cancer survival rates lag behind those of other European countries – study

Cancer survival rates in the UK continue to lag behind those of other European countries, research suggests, with experts flagging the need for earlier diagnosis and improved access to treatments.

The report is the latest to highlight the problem, with previous research suggesting that UK survival rates for breast cancer are a decade behind countries including France and Sweden.

“It is quite clear that outcomes in the vast majority of cancers are not where they need to be in the UK,” said Richard Torbett, executive director of the Association of the British Pharmaceutical Industry (ABPI), which funded the latest study.

The research, lead by the Swedish Institute for Health Economics, expands on previous work which looked at a number of studies to assess the state of cancer care across Europe between 1995 and 2014.

The latest findings, launched with a website to showcase the data, offer an in-depth analysis of the UK situation, revealing that the number of new cases of cancer between 1995 and 2012 increased by 31% in total across Europe, and 12% in the UK.

The study suggests that although cancer survival rates have increased over the years, the UK’s improvements often lag behind those of other European countries.

With the exception of a type of skin cancer known as melanoma, the average adult five-year survival rates for patients diagnosed with nine other types of cancer between 2000 and 2007, were lower in the UK than the European average. While the five-year survival rates for colon cancer hit 58% on average across Europe, the figure for the UK was 52%.

What’s more, the UK was second only to Bulgaria for the worst five-year survival rates for lung cancer, with UK figures for patients diagnosed between 2000-2007 also below those for countries including Norway and Sweden for cases diagnosed around a decade earlier.

Analysis of 2014 figures further showed that while the UK spent 9.1% of its GDP on healthcare in 2014, the European average was 10.1%. Looking specifically at cancer spending, compared to countries including France, Denmark, Austria and Ireland, the UK spent less on cancer per person, with Germany spending almost twice as much per head.

“That investment covers everything: that is, from diagnosis through to surgery, radiotherapy, medicines are obviously included in that – but so is everything else,” said Torbett. “It is not particularly surprising that, if there is significant under-investment, the UK isn’t seeing the scale and speed of benefits that are seen in some of these other European countries.”

The report also highlighted that the UK is lagging behind other large European countries, including France and Germany, in the uptake of new drugs.

With cancer now a greater disease burden than cardiovascular disease in the UK, experts say more needs to be done.

“While we have seen really big improvements in our survival in areas like breast cancer, prostate cancer and testicular cancer, there are some other cancers like lung, pancreatic, brain and oesophageal cancers where we really haven’t made as much progress as we would like,” said Emlyn Samuel, senior policy manager at Cancer Research UK.

While Samuel stressed that improving early diagnosis is an important part of improving survival rates, he added that it is also crucial to make sure that new drugs and other treatments are available and accessible to patients. “The report shows that the UK is slower at adopting innovative cancer medicines than other countries and that is a concern, and something we want to see movement on,” he said.

Lynda Thomas, chief executive at Macmillan Cancer Support, agreed but added that it isn’t enough to look only at survival rates. “It’s crucial that patients don’t simply survive but are supported to have the best possible quality of life they can,” she said.

A spokeswoman for NHS England said cancer survival is at a “record high” in England, and pointed out that a report, commissioned by NHS England and published in 2015 by an independent cancer taskforce, highlighted that improving cancer outcomes in the UK was not simply a case of pushing more funding into the pharmaceutical industry.

“The ABPI is hardly a disinterested commentator and it should have the intellectual honesty to acknowledge what the independent cancer taskforce set out, namely that the biggest opportunities for further improvements in UK cancer survival currently come mainly from earlier diagnosis, and modern radiotherapy and surgery, as against just higher spending on cancer drugs with a modest impact on life expectancy,” she said.

We are told we are a burden. Assisted dying would further devalue our lives | Jamie Hale

Noel Conway’s challenge to the 1961 Suicide Act goes before the high court this week. His argument is that the UK’s ban on assisted dying breaches the right to a private life under the Human Rights Act – and his aim is to have it legalised for terminally ill people who have less than six months to live.

As someone who relies extensively on social and medical care, I have great empathy for his fear of losing dignity, and the desire to avoid suffering or a drawn-out death. However, legalising assisted dying is a dangerous way of achieving those goals.

Conway’s fears are not groundless. When social care visits are rushed, being left wearing a filthy incontinence pad feels undignified; and when palliative care is cut, death can result from dehydration on a hospital ward. But this is neither necessary nor inevitable. The resources and experience exist to give everyone the care they need to have a dignified, self-directed life, and a painless, smooth death – and we should be campaigning to expand access to those resources, not to replace them with a lethal cocktail.

When legislating to allow assisted dying, it is impossible to implement effective safeguards that limit it to people at the end of their lives who are not experiencing mental illness or undue pressure. Feeling like a burden is one of the greatest risk factors for suicide: disabled and terminally ill people like me are constantly told that we are a financial, emotional and practical burden on society, with the strong implication that we would be better off not being a burden.

Moreover, the medical profession is notoriously bad at predicting how long people have to live, and there is no way of being certain that someone accessing assisted dying isn’t suffering from depression or experiencing external pressure. Assisted dying would turn these predictions and judgments into a matter of life and death – and even one unnecessarily early death resulting from a change in the law would be one too many.

As we have seen in many other countries, assisted dying laws typically undergo a process of incremental expansion and legislative drift. Once assisted dying is legalised, campaign groups argue, it will be difficult to justify offering it only to those with less than six months to live. What about those with less than a year to live, or those experiencing “incurable suffering”? In Belgium, the Netherlands, and Luxembourg (among others), assisted dying has been legalised for people suffering from mental illness alone, and safeguards have been repeatedly ignored. An emphasis on ending lives is replacing an emphasis on suicide prevention – and the difficult but worthwhile process of recovery.

The majority of groups in favour of assisted dying are coordinated by people who are not disabled or terminally ill, and either fear an undignified death or have witnessed a loved one dying without good palliative care. Meanwhile, neither groups run by and for disabled and terminally ill people nor the British Medical Association support assisted dying, which would fundamentally destroy our trust in doctors to support us in making decisions that maximise our health and quality of life.

If medical, social and palliative care are treated as an expensive luxury for disabled and terminally ill people compared with the lower cost of assisted dying, this will inherently devalue our lives, and affect the care offered to all of us. Remaining alive will become a selfish decision that burdens our families, risks their inheritances, and has a huge financial cost to society. Disabled and terminally ill people are being told that, while other lives can improve and other people should be deterred from killing themselves, our lives are so bad we should actually be offered assisted dying, and it would be best for other people if we accepted it.

In a world where disabled people received truly equal treatment, assisted dying wouldn’t be an option. Instead, we would find people who had professional, well-paid assistance that allowed them to live independently, work where possible, and have access to the best treatments for their conditions. Assisted dying might be cheaper and easier, but the necessary social and medical care to experience a dignified decline and a painless, comfortable death would be infinitely more valuable than the unnecessary shortening of peoples lives.

Stressful experiences can age brain ‘by years’, Alzheimer’s experts hear

Stressful life experiences can age the brain by several years, new research suggests. Experts led by a team from Wisconsin University’s school of medicine and public health in the US found that even one major stressful event early in life may have an impact on later brain health.

The team examined data for 1,320 people who reported stressful experiences over their lifetime and underwent tests in areas such as thinking and memory. The subjects’ average age was 58 and included 1,232 white Americans and 82 African Americans. A series of neuropsychological tests examined several areas, including four memory scores (immediate memory, verbal learning and memory, visual learning and memory, and story recall).

Stressful life experiences included things such as losing a job, the death of a child, divorce or growing up with a parent who abused alcohol or drugs. The results showed that a larger number of stressful events was linked to poorer cognitive function in later life.

When looking specifically at African Americans, the team found they experienced 60% more stressful events than white people during their lifetimes. Researchers said that, in African Americans, each stressful experience was equivalent to approximately four years of cognitive ageing.

The study, which has not been published in a peer-reviewed journal, was presented at the Alzheimer’s Association international conference in London.

Dr Maria Carrillo, the chief science officer for the Alzheimer’s Association, said: “The stressful events that the researchers were focusing on were a large variety … the death of a parent, abuse, loss of a job, loss of a home … poverty, living in a disadvantaged neighbourhood, divorce.” She said that even a change of school could be regarded as a stressful life event for some children.

Dr Doug Brown, the director of research at the Alzheimer’s Society, said: “We know that prolonged stress can have an impact on our health, so it’s no surprise that this study indicates stressful life events may also affect our memory and thinking abilities later in life. However, it remains to be established whether these stressful life events can lead to an increased risk of dementia.

“Studying the role of stress is complex. It is hard to separate from other conditions such as anxiety and depression, which are also thought to contribute towards dementia risk.

“However, the findings do indicate that more should be done to support people from disadvantaged communities that are more likely to experience stressful life events. As we improve our understanding of risk factors for dementia, it is increasingly important to establish the role that stress and stressful life events play.”

Other research has suggested there are plausible links between stress and chronic inflammation, which in turn may accelerate the development of dementia. But experts believe that a health lifestyle and a healthy diet can help mitigate this risk, even for those people going through stressful events.

Art can be a powerful medicine against dementia | Nicci Gerrard

A few weeks ago, turning on the radio, I hear a voice saying that creative writing can help wounds heal faster. Startled, I turn the volume up. Volunteers were given small wounds; half were then asked to write about something distressing in their life, the other half about something mundane. The wounds of the confessional writers healed substantially more quickly. A thought or a feeling is felt on the skin. Our minds, which have power over our bodies, are in our bodies and are our bodies: we cannot separate the two. Words, self-expression, can tangibly help pain and suffering. Art can be medicine, for body and soul.

Over and over again, I am reminded of the transformative power of art. Answering the phone, I hear a deep and husky voice: “Doe, a deer, a female deer.” My mother, 85, frail, registered blind, bashed about by cancer and several strokes, is having singing lessons. At school, she was made to mouth the words of songs and she never sang again until now. Eighty years after being told she was tone deaf, her voice is being released. “Me, a name I call myself…”

Or recently I found myself in a hall in London, holding hands with a tiny woman from Jamaica and a large man from Birmingham, we dance. Bit by bit, our self-consciousness falls away and we grin at each other, laugh. Dementia has robbed them of their verbal ability – but there are many different languages, many different forms of embodied knowledge and ways that we can connect with each other.

Dementia can look like solitary confinement – and solitary confinement is a torture that drives most people mad

Or sitting in a church in Essex on a Sunday in June, I look across at my friend’s mother. She is in her 90s and has dementia. There are days when she is wretched, chaotic and scared, but each Sunday she is soothed and even enraptured by singing the hymns that she sang when she was a girl. The music has worn grooves in her memory and while she may not be able to speak in full sentences any more, she can sing Abide With Me in a true voice and her face, lifted up, looks young, eager, washed clean of anxiety. My friend thinks that at these moments her mother’s brain comes together, “like a flower reviving when it’s being soaked in water”. People with dementia, she says, need to be drenched in art.

And this is precisely what the report of an all-party parliamentary group inquiry into arts, health and wellbeing, to be launched on Wednesday 19 July, will say. After two years of evidence gathering, roundtables and discussions with service users, health and social care professionals, artists and arts organisations, academics, policy-makers and parliamentarians, its unambiguous findings are that the arts can help keep us well, aid our recovery and support longer lives better lived; they can help meet major challenges facing health and social care – ageing, long-term conditions, loneliness and mental health; and they can help save money in the health service and in social care.

Dementia is an area where the arts can radically enhance quality of life by finding a common language and by focusing on everyday, in-the-moment creativity. As Lord Howarth of Newport, co-chair of the all-party parliamentary group, said: “The arts have a vital role to play for people with dementia. Research demonstrates that visual arts, music, dance, digital creativity and other cultural activities can help to delay the onset of dementia and diminish its severity. This not only makes a huge difference to many individuals but also leads to cost savings. If the onset of Alzheimer’s disease (which accounts for 62% of dementias) could be delayed by five years, savings between 2020 and 2035 are estimated at £100bn. Those are powerful statistics, but this isn’t just about money; the arts can play a powerful role in improving the quality of life for people with dementia and for their carers.”

It’s what Seb Crutch and his team are exploring in their inspiring project at the Wellcome Foundation. It’s what is happening with Manchester Camerata’s Music in Mind or with Music for a While, a project led by Arts and Health South West with the Bournemouth Symphony Orchestra, with Wigmore Hall’s participatory Music for Life, with the project A Choir in Every Home and Singing for the Brain; with dance classes in hospitals and residential homes; with art galleries and museums that encourage those with dementia to come and talk about art.

One of a number of drawings by the artist David Shrigley, reflecting on individuals’ stories, that will be published with the report on arts, health and wellbeing on Wednesday.

One of a number of drawings by the artist David Shrigley, reflecting on individuals’ stories, that will be published with the report on arts, health and wellbeing on Wednesday. Photograph: David Shrigley

There are optimistic, imaginative endeavours going on all over the country, in theatres, galleries, cinemas, community centres, pubs, bookshops, peoples’ houses. It’s happening at a macro- and a micro-level. At a conference run by the Creative Dementia Arts Network, where arts organisations and practitioners gathered to share experience, I met two young students from an Oxford school who with fellow students go into local old people’s homes to make art: not the young and healthy doing something for the old and the frail, but doing it with them, each helping the other: this is the kind of project that is springing up all over the country.

I attended one of the monthly sessions at the Royal Academy in London where people with dementia who have been art-lovers through their life – and are art-lovers still – come to talk about a particular work, led by two practising artists. We sat in front of an enigmatic painting by John Singer Sargent, and there was an air of calmness, patience and above all, time, and there were no wrong opinions. There are many ways of seeing. People with dementia are continually contradicted and corrected, their versions of reality denied: it’s Sunday not Friday; you’ve already eaten your breakfast; I’m your wife not your mother; anyway, you are old and she is dead …. In this humanising democratic space, people were encouraged to see, think, feel, remember and express themselves. Slowly at first, they began to talk. There was a sense of language returning and of thoughts feeding off each other. They were listened to with respect and were validated.

Validation is crucial. We are social beings and exist in dialogue; we need to be recognised. In health, we live in a world rich with meanings that we can call upon as a conductor calls upon the orchestra, and are linked to each other by a delicate web of communications. To be human is to have a voice that is heard (by voice I mean that which connects the inner self with the outer world). Sometimes, advanced dementia can look like a form of solitary confinement – and solitary confinement is a torture that drives most people mad. To be trapped inside a brain that is failing, inside a body that is disintegrating, and to have no way of escaping. If evidence is needed, this report robustly demonstrates that the arts can come to our rescue when traditional language has failed: to sing, to dance, to put paint on paper, making a mark that says I am still here, to be touched again (rather than simply handled), to hear music or poems that you used to hear when you were a child, to be part of the great flow of life.

I think of the wonderful film Alive Inside, made about a project in a huge care home in America: an old man with advanced dementia sits slumped in a wheelchair. He drools; his eyes are half closed and it’s impossible to know if he is asleep or awake. A few times a day, soft food is pushed into his mouth. Then someone puts earphones on his head and suddenly the music that he loved when he was a strong young man is pouring into him. Appreciation of music is one of the last things to go. His head lifts. His eyes open and knowledge comes into them. His toothless mouth splits into a beatific grin. And now he is dancing in his chair, swaying. And then this man – who doesn’t speak any longer – is actually singing. The music has reached him, found him, gladdened him and brought him back into life.

It’s like a miracle – but one that happens every day, in care homes, in community halls, in hospitals, wherever kind and imaginative people are realising that the everyday creativity is not an add-on to the basic essentials of life, but woven into its fabric. Oliver Sacks wrote “the function of scientific medicine… is to rectify the ‘It’.” Medical intervention is costly, often short-term and in some cases can be like a wrecking ball swinging through the fragile structures of a life. But art calls upon the “I”. It is an existential medicine that allows us to be subjects once more.

Nicci Gerrard is a novelist and author and co-founder of John’s Campaign

Grenfell Tower survivors ‘must have total immigration amnesty’

The government will face calls this week to grant a complete amnesty and a permanent right to remain in the UK to undocumented residents of Grenfell Tower.

Volunteers working with survivors say concerns about their migration status are still preventing some from coming forward to seek help.

Councillors convening on Wednesday for the latest meeting of Chelsea and Kensington’s beleaguered council will be asked to vote on a motion calling on the government to go further than the temporary 12-month immigration “amnesty” for survivors, which was announced earlier this month by the Home Office.

The move comes as volunteer doctors working in the community affected by the fire said that they had noticed a fall-off in the number of people coming to the weekly clinics being run near to the tower.

“We have been doing outreach work but we have not had any patients coming to the last two clinics,” said Nick Harvey of Doctors of the World, a charity that runs clinics for undocumented migrants, victims of trafficking, asylum seekers and others.

“A lot of people seem to have gone under the radar. What we also seem to be seeing – even though Theresa May said that there would be no immigration checks on people who survived the fire – is a concern by some people about putting their name on to the NHS database, too. It’s something that people are afraid of.”

A spokesperson for the North Kensington Law Centre, which provides free and confidential legal advice to migrants in the community about their UK resident rights, said that it, too, was aware of Grenfell fire survivors who were concerned about their immigration status.

“Since the government announcement last week, we have come into contact with some people in this situation and, if there are more of them, we want them to have the confidence to come forward and speak to us,” he added.

These are people who have experienced the most traumatic thing in their lives – they should be granted an amnesty.

Robert Thompson

The motion before Kensington and Chelsea council, which is Conservative dominated, is being moved by Labour councillor Robert Thompson, who told the Observer: “It’s a motion that will put the Tory group at odds with their own government but it is something that they should do because national policy is still failing to take the situation on the ground into account.

“The main concerns relate to undocumented people not coming forward because of fears about their immigration status after 12 months.

“Firstly, that will have an impact on the world of the inquiry because you are potentially losing the number of eyewitnesses that could be there. Second, it’s about making sure that people are able to access the provisions that the government has put in place,” he said.

“Third, and this is the greatest issue, there is simply an argument in relation to compassion. These are people who have experienced what is likely to have been the most traumatic thing in their lives, whether they lost loved ones, or were affected in other ways, and they should be granted an amnesty.”

Another motion put forward by Labour councillor Judith Blakeman calls on the council’s cabinet to use some of its £250m-plus reserves to provide the widest choice of permanent rehousing options for survivors of the fire, including by buying back the lease on a development of 32 homes in order to use them as social housing.

It also calls for the designation of a number of other named developments for provision of homes and for a review of plans to regenerate all other estates and blocks in North Kensington immediately.

The man who may have secretly fathered 200 children

Twenty five years ago, when she was 35, Esther-Louise Heij made two decisions that would shape the rest of her life. The first decision went entirely to plan: it gave her the children she longed for. But the second decision would play out in a bizarre twist she could never have imagined, and would plunge her family into a sea of heartache that continues to this day.

Both decisions were brave to make a quarter of a century ago, and are testament to Heij’s judgment as well as her tenacity. First, she decided that although she was single, and had recently ended a 12-year relationship, she would forge ahead with her plans to become a mother by opting for IVF with donor sperm.

Second, and no less unusual at the time, she would make sure that her children would be able to trace their genetic father.

“Back then, the accepted wisdom was that donor children didn’t need to know,” she says. “But I felt it was their right to know. Where we come from, who our parents are – these things are important in anyone’s life, and I wanted them for my children.”

She heard about a clinic near Rotterdam whose director sounded forward-thinking, went along for a consultation, and was impressed.

“The doctor seemed very good at what he did,” she says. “He was a pioneer in his attitudes. He talked me through what it would be like to raise children on my own; he seemed very serious and professional.”

And he was supportive, too, of her hope that any children she had would be able to know their father. “He assured me that would be possible. He was an important doctor in a white coat. I trusted him; it never crossed my mind that I couldn’t.”

The doctor, Jan Karbaat, told Heij that he would find a donor whose physical attributes fitted into her family. “He asked me for pictures of my relatives, so he could find a good match. And he said he would make sure the donor was a man who would be open to being traced later.”

The Heij family.

The Heij family. Photograph: Joanna Moorhead

Heij and her children live in the southernmost tip of the Netherlands: their village, she tells me proudly, is on the only mountain in the country. “You won’t see scenery anywhere else in Holland like this,” she says, as we drive up the hill towards their house. Its hilltop position is fitting, because there have been many peaks and troughs to navigate for the Heij family.

During a long relationship with a partner, the one that lasted 12 years, she was pregnant twice; both times it ended in a stillbirth. Once she got the go-ahead for IVF from Karbaat, there would be nine unsuccessful attempts before she got a positive result. A daughter, Lotte, now 23, was born in 1994. Almost two years later, in 1995, Heij gave birth to a second child, Yonathan; Karbaat assured her the sperm was from the same donor.

Being a single mother of two was tough; but it was also the life she had wanted, and Heij has no complaints. The family moved around, supported by her work as a physiotherapist: living first in a village on an island in the north of Holland, then on an island in Norway.

She tried to be as open as possible with the children about their roots. “I told them: ‘A man gave his seed and that’s how you were born: if you want to know who he is you will get the chance to do that one day.’”

There were many children in the neighbourhood who didn’t live with both parents; but people asked questions that weren’t always easy to deal with, particularly for Yonathan. “They would say, ‘Where is your father?’ I made up a story about him being a man called Peter from Rotterdam, who was the captain of a ship, which explained why he was never around.”

One of the things that brought them back to Holland was Yonathan’s academic prowess: he was bright, and teachers at the small school in Norway felt they couldn’t challenge him sufficiently. Back in Holland, though, he flourished; Lotte, too.

When Lotte reached 16, she turned out not to have a burning desire to contact their father. Two years later, Yonathan took a different view. “For a boy to grow up without a father figure is a big thing; a father is important, especially for a boy. I wanted to know who he was: there were things I wanted to ask him. And I wanted to find out whether certain ways I behaved were connected with him – things that made me seem different from my mother and my sister, like that I’m much more laid back than they are.”

In 2011, Yonathan and his mother approached the organisations that should have been able to get the information she needed from Karbaat’s clinic. The news that came back was worrying: the files were in disarray, records had not been properly kept, and it was going to be difficult to find out who their donor was. What had originally seemed like an easy quest was going to be a much tougher haul; but they pressed on, making phone calls and filling in forms and requesting information.

Yonathan and Lotte speak to journalists prior to a court decision last month.

Yonathan and Lotte speak to journalists prior to a court decision last month. Photograph: Remko de Waal/EPA

At the same time, though, they became aware of growing suspicions about Karbaat’s clinic. “Rumours were rife,” says Yonathan. There were stories starting to circulate that the sperm donors had been fellow doctors, medical students; but the biggest upset of all were rumours that Jan Karbaat himself had provided much of the sperm that had impregnated his patients.

“We were in shock – it was a feeling of total disbelief. Karbaat was a doctor, and to use his own sperm to get women pregnant would have been totally prohibited. It was difficult to process the enormity of what this meant. But right away I thought: ‘This man could be my father.’ I was scouring pictures of him, looking for physical similarities.”

Yonathan was thrown into emotional turmoil. He had previously written to Karbaat asking for information about his father, and the letters had been returned unopened. “I thought, is that how little he cares? He seemed so cold, so arrogant. And this man could be my father – it was all very hard to come to terms with.”

Then a documentary about the clinic, shown on Dutch TV, raised the disturbing possibility that as many as 200 children could have been fathered by the same sperm donor.

“Yonathan was watching the television, saying: ‘These could be our brothers and sisters,’” says Heij. “A lot of them were very intelligent, just like him; and we were looking at them thinking: ‘Do they look like Yonathan and Lotte?’”

The family was thrown into a quandary, and found themselves at the centre of a very public controversy: eventually, both children gave DNA samples to find out whether they were related to any of the others conceived at the clinic who were now seeking answers.

Groups of individuals were found who were related to each other, but there seemed to be no sibling match for Yonathan and Lotte. “It was disappointing,” says Yonathan. “I hoped I would find at least some siblings. But I still wanted to know who my father was. Some people were saying: ‘If your father was Karbaat, maybe it would be better not to know.’ After all, he’s turned out to be an unscrupulous man. But I said no, I still want to know – however bad he was, he must have had some good qualities. It was like part of my identity was missing. I knew I needed to find out the truth.”

Over the past 18 months, a group of families whose children were born via IVF at Karbaat’s clinic have started legal proceedings to allow them to do DNA tests using cells from Karbaat.

Karbaat opposed the move, but he died, aged 89, in April this year. Police seized personal objects from his home, including his toothbrush, and a ruling on whether the DNA taken can be released to the families is expected shortly. In the meantime, though, the Heij family’s own DNA tests have proved Yonathan and Lotte are definitely full siblings, and that their father is most likely to come from central Europe.

The Heij family.

The Heij family. Photograph: Courtesy Esther-Louise Heij

The situation is changing all the time, says Yonathan: one of Karbaat’s acknowledged children has now been DNA-tested, and the results of that test suggest it’s less likely the Heij children are Karbaat’s, though by no means certain.

“Everything is up in the air now. I’m conscious that I may get a phone call tomorrow telling me who my father was, or I might have to wait 20 years,” he says. “It feels like waiting to find out whether you’ve won the lottery, but knowing you probably will.”

Indeed, according to Laura Bosch, of Defence for Children in Leiden – the legal organisation representing the Heijes and other families – that is precisely the point: technological advances, she says, have made ethical issues concerning paternity identification redundant.

“The existence of large DNA databases mean it’s getting easier and easier to trace a donor parent – it’s no longer feasible for anyone to say donors have the right to anonymity. I would argue that in any case the child’s right to information should prevail, and takes precedence over the donor’s right to anonymity, but the landscape is shifting.”

The health minister of the Netherlands, Edith Schippers, has asked men who donated sperm pre-2005, when the right to anonymity was lifted, to do “a second good deed” and come forward to make it easier for their children to trace them.

The emotional turmoil has taken its toll on 58-year-old Heij, who seems tired, and is tearful discussing all she’s been up against. But when it comes to Karbaat, she finds it impossible to condemn him out of hand. “He made me a mother,” she says simply. “He gave me these wonderful children. But he was also arrogant and narcissistic. He seems to have thought he was better than other donors, that he was doing women a favour to get them pregnant using his sperm.”

For Yonathan, meanwhile, the saga has led to what might seem a surprising decision. “I’ve decided to become a sperm donor myself,” he says.

As he explains it, it makes perfect sense. “I know that any children born as a result will be able to find me in the future. And I feel I will be able to help them, I will understand their situation in a way some donors can’t, because I’ve been through everything they’re going through. I will be able to relate.”

On Karbaat, his feelings are mixed. “He was a clever man but it’s dangerous to allow someone to work with no brakes; he had a lot of power, and a big ego. He wasn’t honest with my mother or with other patients – he didn’t tell the whole truth. I feel he had good intentions but his methods were wrong – he didn’t do things the way they should have been done, and some of the things he should never have done at all.”