{"id":468399,"date":"2026-03-10T20:50:11","date_gmt":"2026-03-10T20:50:11","guid":{"rendered":"https:\/\/www.newsbeep.com\/uk\/468399\/"},"modified":"2026-03-10T20:50:11","modified_gmt":"2026-03-10T20:50:11","slug":"the-great-adoption-scandal-how-the-nhs-is-silently-failing-adopted-children-like-me-and-our-lifelong-health-battle-that-no-one-is-talking-about-by-katharine-quarmby","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/uk\/468399\/","title":{"rendered":"The great adoption scandal: How the NHS is silently failing adopted children like me – and our lifelong health battle that no one is talking about, by KATHARINE QUARMBY"},"content":{"rendered":"

In June 2024, Rebecca Bowyer, a 46-year-old nurse from Falmouth and an adoptee, finally received the name of her birth father from her social worker after 25 years of searching. She then found out he had died more than six years earlier.<\/p>\n

\u2018I had always hoped to meet him one day but, instead, found out that he had died,\u2019 she told Good Health. \u2018I requested his death certificate and found that he had died of stomach cancer<\/a>.\u2019<\/p>\n

She was then able to trace other birth relatives and one told her she was convinced her father had instead died of bowel cancer. In fact, as Rebecca later learned, he\u2019d had both conditions.<\/p>\n

Rebecca then started to look at her biological family\u2019s health history more closely, as she was concerned that the health problems she and her daughter Annabelle were experiencing could be linked to inheritable conditions.<\/p>\n

Rebecca had breast cancer in 2021, for which she was successfully treated. Annabelle, now 24, was diagnosed with a bone tumour which was found to be cancerous.<\/p>\n

Being adopted \u2013 and not having a family medical history to refer to when meeting health professionals \u2013 makes getting a diagnosis and navigating treatment more difficult, says Rebecca. Not least because family history is well-established as an early alert system for conditions such as certain cancers or diabetes<\/a>, for instance.<\/p>\n

Rebecca is just one of many adult adoptees \u2013 including me \u2013 who face healthcare issues that the NHS to date almost completely ignores, and which governments also, to date, have not factored into adoption planning.<\/p>\n

Key to this is the fact that the NHS number \u2013 given at birth to everyone in the UK, allowing healthcare professionals to match details to health records \u2013 is changed after an adoption to maintain the privacy of birth relatives. This means it is very difficult to link birth family health to adoptees.<\/p>\n

\"Rebecca <\/p>\n

Rebecca Bowyer and daughter, Annabelle (left), have both had cancer.\u00a0Rebecca is one of many adult adoptees who face healthcare issues that the NHS ‘almost completely ignores’<\/p>\n

There is a poorly publicised Adoption Registration Service, which allows the GP of a birth relative to contact the doctor of an adoptee with information about a health condition \u2013 but only if the birth relative agrees to share it.<\/p>\n

The changed NHS number also means it\u2019s almost impossible to track the health of adoptees as a cohort and to see if our lack of genetic knowledge of our family history has impacted on our health.<\/p>\n

There are many other issues, too. There are no General Medical Council requirements to teach about adoption and healthcare during medical training, while the National Institute for Health and Care Excellence (NICE) has only two guidance documents on adoption on its website: one on attachment issues in adoptees and the other focuses exclusively on adoptees and mental health.<\/p>\n

As Professor Victoria Tzortziou Brown, chair of the Royal College of GPs, explains: \u2018Family history is an important part of risk assessment in primary care.<\/p>\n

\u2018While GPs aim to take a holistic approach to assessing risk, the absence of family history should not be interpreted as a lack of risk.\u2019<\/p>\n

She adds that, as genomic medicine and targeted screening programmes increasingly rely on family history, \u2018there is a clear need to ensure adoptees are not unintentionally disadvantaged\u2019.<\/p>\n

While there are no official statistics confirming exactly how many adult adoptees there are in the UK, there were around 200,000 babies and children adopted by non-family members in England and Wales between 1949 and 1976 alone, according to an estimate by Dr Michael Lambert, a historian of the welfare state and expert on adoption, based at the University of Lancaster.<\/p>\n

On the basis of those figures, adoptees, their children and grandchildren now almost certainly number well over one million \u2013 meaning that around one in 55 of the UK population has an adoptee in the family.<\/p>\n

The Adoption Act 1976 meant more information is now shared, so more adoptees could, for example, trace their birth relatives \u2013 and, potentially, obtain medical information from them. Adoption organisations are also supposed to share more of that information during the adoption process.<\/p>\n

However, in practice we still face a steep uphill battle in obtaining the comprehensive health history most people have about family risk of conditions.<\/p>\n

A survey last year, by the charity Adoption UK, revealed only 12 per cent of those questioned felt they had enough information about their medical history to get the healthcare they needed.<\/p>\n

Those of us who have birth family members abroad are doubly disadvantaged. Not only is the search usually significantly harder, but not all countries have health systems that can identify inheritable conditions as the NHS can.<\/p>\n

Although I was lucky to find my Iranian birth father back in 2006 after years of searching, other British-Iranian adoptees I know haven\u2019t been as lucky.<\/p>\n

In my case, I feel grateful to have met him. He was one of many naval officers who came to the UK to work with the British Navy in the late 1960s. He offered to marry my birth mother and take us back to Iran when he was told about her pregnancy but, instead, she decided on adoption.<\/p>\n

The heritable conditions I have identified are thankfully not life-threatening. I have osteoarthritis, which has a strong hereditary component and which led to a major operation two years ago in my mid-50s, to replace my hip.<\/p>\n

\"British-Iranian <\/p>\n

British-Iranian adoptee Katharine Quarmby writes that she was able to meet her father, and has learned she may have inherited an eye condition that can lead to severe visual impairment<\/p>\n

I have since learned that I may have inherited an eye condition that can lead to severe visual impairment, a risk that is three to four times higher if a parent has the condition. This knowledge means I can tell medical staff about this history and hopefully lower my risk of it developing.<\/p>\n

However, I have contact only with my birth father \u2013 my birth mother decided not to have communication \u2013 so I have only a sparse medical history.<\/p>\n

For her part, after her daughter\u2019s diagnosis, Rebecca was connected with the NHS Genetics Service, which offers clinical diagnosis, risk assessment and counselling for families with inherited conditions.<\/p>\n

She had read about the risk of Li-Fraumeni syndrome, which is linked to the TP53 gene mutation, and can lead to a high risk of developing many types of cancer. Her father had had two cancers, suggesting he might have had it and passed it on.<\/p>\n

With her daughter\u2019s cancer, diagnosed when Annabelle was just 20, Rebecca feared there was a connection to Li-Fraumeni syndrome, as those affected are more likely to have early-onset cancer.<\/p>\n

The additional worry was that CT scans and X-rays Annabelle had to have for follow-ups could further increase the likelihood of more cancers if she had the condition.<\/p>\n

After a wait of eight months, Annabelle was tested \u2013 \u2018much to our utter relief, two-and-a-half months later we got the news there was no evidence of TP53 gene mutations,\u2019 says Rebecca.<\/p>\n

But the NHS wanted to look into the possibility of another genetic condition \u2013 Lynch syndrome \u2013 which increases the risk of certain cancers, particularly colorectal and endometrial cancers.<\/p>\n

If caught early, the cancers or pre-cancerous growth could be treated. Screening prevents between 40 and 60 per cent of those with Lynch syndrome developing bowel cancer.<\/p>\n

To test for this, Rebecca was asked to contact birth relatives to check they were comfortable with her birth father\u2019s tissue samples from his tumour being tested for Lynch syndrome.<\/p>\n

\"Rebecca <\/p>\n

Rebecca was connected with the NHS Genetics Service, which offers clinical diagnosis, risk assessment and counselling for families with inherited conditions<\/p>\n

Unfortunately, due to the length of time that had passed and age of the samples, the test was unsuccessful. Rebecca was advised she was at moderate risk also for colorectal cancer but, luckily, a colonoscopy showed nothing worrying.<\/p>\n

In some ways, Rebecca was lucky that the NHS Genetics Service did eventually see her.<\/p>\n

Genetic screening (looking for inherited traits) and genomics testing (mapping the person\u2019s whole genome) are paving the way to more personalised medicine in the future, but adult adoptees have told Good Health they feel their needs are not being acknowledged in this new field of medicine \u2013 and there is no NHS strategy for adoption-specific healthcare.<\/p>\n

For example, the NHS Genomic Medicine Service (GMS) can offer \u2018cascade screening\u2019 for some conditions, such as cystic fibrosis \u2013 the most common inherited, life-threatening disease. This identifies people at risk by carrying out genetic testing on more than one generation in a family. But adoptees with our lack of family knowledge cannot benefit.<\/p>\n

Other conditions where knowing about a family history can give an early warning of risk include diabetes (both type 1 and 2) and osteoporosis.<\/p>\n

One woman whose father was adopted and has not been able to trace birth relatives, told Good Health she went into early menopause (which has a strong genetic component) in her 30s.<\/p>\n

Luckily, she had completed her family, but adoptees, like everyone else, need to have this information so they can make informed choices about issues such as when to plan to have children.<\/p>\n

The gap between adoptees and the general population in terms of health is set to widen further. In January, NHS England launched a world-first multi-gene database for families at risk of inherited cancers. Those knowing their family history and identified as having an inherited risk of cancer will then be regularly screened and tracked.<\/p>\n

The plan is to also help speed up access to personalised therapy and trials, as well as tailored information about what they can do to lower their chance of developing cancer or detect it early.<\/p>\n

Professor Dame Sue Hill, chief scientific officer for England and senior responsible officer for genomics in the NHS, said, when launching the register: \u2018By bringing inherited cancer risk information together in a single national programme, we can support more systematic follow-up, improve the targeting of screening and surveillance, and ensure genomic insights are used more effectively to support earlier diagnosis and better outcomes.\u2019<\/p>\n

Such initiatives will leave many adoptees far behind.<\/p>\n

A spokesperson for the Adult Adoptee Movement, a campaigning organisation, said: \u2018Adoption has lifelong impacts, including the erasure of heritage. Information that most people take for granted \u2013 like genetic risks [including family medical history] is denied to us.<\/p>\n

\u2018We are treated by the medical system as if we are blank slates when, in reality, our risks are unknown and therefore heightened. This puts us at risk of late and inaccurate diagnoses, substandard care and potentially reduced life expectancy. These risks are passed on to our children.<\/p>\n

\u2018To be an adoptee in the UK medical system is to be invisible.\u2019<\/p>\n

An NHS England spokesman told Good Health: \u2018Being adopted is not and should not be a barrier to being tested through our world-leading genomic services, as in most cases diagnoses can be made by looking at the individual\u2019s genetic make-up \u2013 without the need for samples from biological relatives.\u2019<\/p>\n

But as Rebecca says: \u2018There are alerts on medical records for all sorts of conditions \u2013 but not if you are adopted.\u2019<\/p>\n

We as adoptees just don\u2019t know what risks we might have ourselves and pass on to our children. Instead we can only diagnose these risks ourselves as we move forward in time and acquire our own blood relatives.<\/p>\n

Katharine Quarmby\u2019s audiobook, Blood And Water, tells the story of the decades-long search for her birth father<\/p>\n","protected":false},"excerpt":{"rendered":"In June 2024, Rebecca Bowyer, a 46-year-old nurse from Falmouth and an adoptee, finally received the name of…\n","protected":false},"author":2,"featured_media":468400,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[10],"tags":[97,59,102,56,54,55],"class_list":["post-468399","post","type-post","status-publish","format-standard","has-post-thumbnail","category-health","tag-dailymail","tag-gb","tag-health","tag-uk","tag-united-kingdom","tag-unitedkingdom"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/468399","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/comments?post=468399"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/468399\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media\/468400"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media?parent=468399"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/categories?post=468399"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/tags?post=468399"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}