Accessing medical records The impact of little or no medical history on health You may have little or no information about your family medical history including information about possible inheritable conditions and other health risks. Or you may have found yourself in the situation where you are asked by a medical professional about your family medical history and not been able to provide any information. Unfortunately, a lack of training and understanding amongst medical professionals means that many adoptees experience awkward and upsetting situations like this on a regular basis. There are hundreds of thousands of adoptees and family members who lack this vital medical health history. This can mean that screening services are not put in place and preventable or manageable health conditions are not picked up as soon as they could be. The health records of adoptees are often incorrectly marked as ‘no medical history of concern’ rather than ‘medical history unknown’. This can mean that inherited health conditions and risks are not considered or investigated. Many medical professionals are uncertain about how to adjust screening protocols and mental health assessments for patients lacking biological family history. Electronic health records do not have an option to indicate that a patient is adopted or has limited family medical history. DNA testing and other genetic screening have advanced personalised medicine, but these tests are not necessarily widely available and can open up risks and complications for adoptees. The barriers to accessing personal medical information When a child is adopted in the UK their NHS number is changed after their adoption, to protect their anonymity. When this happens, their past medical records should be merged with the new post-adoption details where possible across all health records. This does not always happen and even if it does, it will not include a wider family medical history. Intercountry adoptees often face additional barriers to accessing their medical history due to lack of information or, in some instances, falsified records. Many adoptees born in the UK may also lack information about their birth family. Sharing medical information England, Wales and the Isle of Man Birth parents can choose to have their children notified of a serious disease – there is an NHS registration service whereby information about hereditary medical conditions can be passed to birth relatives via medical professionals. But there is no obligation – and if an adult adoptee asks and a birth parent refuses, there's no legal right to see the records. Scotland Adoption agencies are required by law to keep a record of information about a child's health. Contact Scottish Courts and Tribunals Service directly to request access to your adoption record. Northern Ireland Adoption agencies are required by law to obtain and keep a record of information about the child's health. However, the agency also has discretion to disclose information to adult adoptees seeking to access their information. Work is ongoing on the development and implementation of ENCOMPASS, the new digital Health and Social Care record system. Gathering medical information From birth family If you have a relationship with members of your birth family, you may have the opportunity to ask about family medical history. This can often be a challenging and difficult conversation to have. Information that you are given may be incomplete or raise more questions. Through screening You may be able to request additional screening through your GP, especially if you suspect that you may have an inherited health condition. This could include screenings for certain cancers and tests related to conditions such as hypertension. Using public records Some adoptees research birth family death records for evidence of possible inherited health conditions. If you wish to do this, it is advisable to seek professional support to help you to understand and interpret the information that you discover and to process what you find out. Getting support A lack of access to medical records can have a huge impact on both physical and mental health. If you would like to speak to someone who can provide information and signposting and who can offer a listening ear, contact our Information and Support Line. It is free and you can call from anywhere in the UK. You could also consider joining AUK's Adopted Person Membership and coming along to a community group to connect with other adult adoptees and share your experiences. We also have written guidance on finding a therapist. Further reading This guidance has been issued by NHS England and is for GPs and primary and regional care directors. It may be useful to refer to in some circumstances NHS England - Key principles for ensuring continuous health records of adopted children. Adoption Today article: Accessing medical histories (AUK members only) Manage Cookie Preferences