NHS Digital Data Sharing with the Home Office: A Life and Death Matter 

A joint blog by MP's Luciana Berger & Dr Paul Williams

Last month, we went together to visit the Doctors of the World (DOTW) UK clinic in East London where we heard stories there from patients who are too scared to visit a GP. We met NHS doctors who volunteer their time in the clinic, providing essential healthcare to those who have not been able to access treatment. The patients have on average been in the UK 6 years before coming to DOTW UK. It was surprising to learn that they come from all over the country to visit the clinic—from as far as Dundee, Torquay, and Glasgow—because they don’t know how to access the NHS, have been wrongly refused GP care, or are too afraid to go to their local GP surgery.

We first heard about DOTW UK’s clinic at a Health and Social Care Committee hearing in January. The Committee was held to scrutinise the impact of an agreement between NHS Digital and the Home Office to share patient information. This agreement means a patient’s name, address, and other details which are given to their GP or other medical professionals in confidence, can be shared with the Home Office when an immigration enforcement team is trying to trace them.

The Committee heard striking evidence from doctors and human rights organisations who told us about the insidious fear caused by the sharing of personal data. We heard that while this is undoubtedly a breach of the patient-doctor confidentiality relationship, it is also an agreement that is deterring some of the most vulnerable people in our society from accessing healthcare.

Specific examples we heard about included: pregnant women delaying antenatal care; people with long-term conditions not getting medication; and even people who are acutely unwell too afraid to go to hospital.

Dr Lucinda Hiam, a GP we met at the clinic, told us about the patients she sees and the impact of the well-founded fear that accessing healthcare services could lead to being detained and deported:

Every day we see cases of people too scared to see a doctor. Women who have been trafficked to the UK too afraid to seek the healthcare they need. One of the threats used by the people who are exploiting them is their immigration status being used against them. Turning the GP into a place that they also fear is not only very dangerous for both individual and public health, but it leaves them with nowhere to turn. That is the atmosphere of fear that we are creating.

It was clear to us as we spent time at the clinic that healthcare should not be co-opted into immigration enforcement, and the health service should work to existing codes of confidentiality. As we pointed out in at the Health and Social Care Committee evidence session in March, NHS Digital is ignoring its own guidance on confidentiality, laid out in the Health and Social Care Information Centre’s “A guide to confidentiality in health and social care”.

Multiple calls from the cross-party Health and Social Care Select Committee to suspend the agreement have been ignored. We both strongly believe that there is compelling evidence of harm, as we saw at the DOTW UK clinic today. We believe that NHS Digital must, at the very least, postpone the data sharing agreement until a Public Health England review is concluded.

We, along with thousands of healthcare professionals and patients, support DOTW UK’s #StopSharing campaign, and efforts to make GP practices safe through their safe surgeries toolkit. Even in war healthcare facilities are neutral. The foundations of this data sharing deal impact on some of the most marginalised people in society, and this is ultimately a matter of life and death.

Contact UK Communications and Campaigns Officer, Ella Abraham, for further information about the campaign: [email protected] 

You can sign the #StopSharing petition and find out more here: https://www.doctorsoftheworld.org.uk/stopsharing-campaign