MOU0002

Written evidence from NAT (National AIDS Trust) and Doctors of the World (DOTW)

A              Introduction

1.              NAT (National AIDS Trust) is the UK’s HIV policy and campaigning charity.  NAT organised and co-signed the letter from 20 organisations requesting an inquiry by the Health Committee into NHS Digital’s recently agreed Memorandum of Understanding (MoU) with the Department of Health and the Home Office.  We are most grateful that the Committee agreed to look into this serious issue and that we have an opportunity to present comprehensively our questions, objections and concerns.

2.              NAT has had an interest in migrant access to healthcare for many years.  This is hardly surprising given the high percentage of people living with HIV in the UK who were born abroad.  In 2016, for all those for whom country of birth was known, 55% of people newly diagnosed with HIV were migrants.  55% of all people seen for HIV care in England are migrants.[i]  HIV is a life-threatening and infectious condition, and indeed almost invariably leads to death in the absence of treatment.  There are therefore overriding reasons why all people in the UK irrespective of residency status should be able to access high quality care, not only for the sake of their own health but also to protect public health (once on treatment the person with HIV rapidly becomes ‘undetectable’ meaning they cannot pass HIV on to others).  For that reason, NAT led the successful campaign to exempt HIV from overseas visitor charges; we continue to argue against the extension of that charging to primary care and A&E; and we are working collaboratively with NHS England to develop guidance on HIV testing, treatment and care in immigration removal centres. 

3.              Doctors of the World (DOTW) UK is part of the Médecins du Monde network, an international humanitarian organisation providing medical care to vulnerable populations across the world. In the UK, we run a volunteer-led clinic and advocacy programme providing basic medical care, information and practical support for people facing multiple vulnerabilities. We also run a specialist clinic for women and children. In 2016, DOTW UK volunteers and staff supported 1,924 people to access healthcare and provided over 2,000 consultations.

4.              In 2016, over half of our patients were undocumented migrants (56%), including victims of trafficking and people whose asylum application had been unsuccessful. We also saw short term migrants with a visa or work permit (17%), asylum seekers (15%) and refugees (2%).  The vast majority of people (89%) who came to the DoTW UK clinic had not been able to register with a GP, despite being fully entitled to free primary care. We also supported patients who were refused lifesaving secondary care, such as cancer treatment and cardiac surgery, and pregnant women who were too afraid to access antenatal care.

5.              The Committee will be aware that, separately, legal proceedings have begun, with Migrants’ Rights Network as the claimant, challenging the lawfulness of the MoU.  NAT and DOTW fully support this legal challenge and agree that the current MoU is unlawful.  We do not, however, intend in this submission to rehearse in full the legal arguments against the MoU, which can be read in the Statement of Fact and Grounds of the claimant (and which we commend to the Committee).  Whilst we may from time to time refer to a point of law, the focus in this submission is on the policy arguments against the MoU and the immigration tracing practice.  Even were the current tracing practice to be lawful (which we dispute), it is important to note that the law here is merely permissive.  It does not require disclosure[ii] – it simply allows disclosure in certain circumstances.  There remains the question, even if the law permits a disclosure, whether it is at all desirable from a policy point of view.

6.              Our overall contention is straightforward.  Current GMC and NHS guidance on confidentiality makes clear that patient information, including non-clinical information, should be disclosed to law enforcement authorities only in relation to serious crimes.  Immigration offences are not serious crimes.  The immigration tracing service should therefore end.  There is no need to amend confidentiality guidance, which has stood the test of time and enjoys widespread clinical and public support.

B              History

7.              The immigration tracing service now provided by the National Back Office (part of NHS Digital) first came to our attention and to that of the wider public with the publication of Sir Nick Partridge’s report in June 2014, ‘Data Release Review’.  That review was commissioned by NHS Digital following concerns expressed by the Health Committee in relation to the transparency of data releases undertaken by NHS Digital’s predecessor body, the NHS Information Centre (NHS IC). 

8.              The report cited the 7,766 responses to immigration tracing requests made between 1 April 2008 and 31 March 2013, but made no comment on the appropriateness and lawfulness of this service nor its history and origins.  It did note that the service was provided by Office for National Statistics prior to its transfer to the NHS Information Centre in 2008.  It is therefore of long standing.  We note that the more recent National Back Office Tracing Service Review (‘the Review’) published by NHS Digital on 7 November 2017 also provides no information on the history or development of the immigration tracing service.  Crucially, it makes no attempt to explain the legal basis for this tracing service prior to the Health and Social Care Act 2012.  We do not believe any legal basis existed.

9.              The news that this tracing service existed came as a great surprise to many, including clinicians and health charities who had been assuring migrants that their data were not used for immigration enforcement purposes.  That mistaken assumption was also clearly held and promoted by the Department of Health (DH) itself.  To give just one example, in July 2014 the DH published its ‘Visitor & Migrant NHS Cost Recovery Programme: Implementation Plan 2014-2016’.[iii]  It states at para.51:

“This is a complex programme of work, and offers a particular opportunity to address the myths around the consultation and the response. Examples are the expectation that NHS clinical staff will act as border guards, or that the new registration system will provide information to the Home Office on the whereabouts or care of illegal migrants. We recognise the vital role effective communication will play in addressing these and other concerns (e.g. around public health), and setting out mitigating actions.”

10.              NAT was signatory to a joint letter in August 2014 calling for NHS Digital to engage with concerned stakeholders on the issue and review the appropriateness of the current tracing service.  As a result, NHS Digital agreed to the National Back Office Tracing Service Review, initially chaired by Professor Maria Goddard, the findings of which were only published in November 2017. 

11.              We have sent separately to the Clerk a detailed account of our engagement with NHS Digital and the Review team over the subsequent three years.  To summarise briefly, despite repeated requests, the engagement promised by NHS Digital never took place.  There was an initial brief questionnaire asking for our views, but we made the point at the time that our comments could only be provisional and limited, given we had no detailed information on the nature of the service, its justification and its legal basis.  Furthermore, we expected to have further detailed discussions which were either not arranged or cancelled.  We were promised to have sight of the Review’s findings before finalisation so that we could feed in our comments, and this did not take place.  We also were led to believe that the Review would feed into a decision on any new arrangements when in fact the MoU was agreed before the finalisation of the Review, and in secret.  The existence of the MoU only came to light in early 2017 as a result of an FOI request from the BBC.  It is important to make clear, in light of NHS Digital and DH claims that they consulted as part of the Review process, that the unanimous view of the signatories to that original letter of concern in 2014, is that meaningful consultation did not take place and commitments to engage were broken. 

12.              In addition, NHS Digital and the DH emphasise in the published correspondence that the tracing service had been in operation for many years and that the MoU was simply ‘an internal governance assurance document’.[iv]  It is true that the tracing service had been going on for some years but until the publication of the Partridge review this was not widely known.  The tracing service had never been formally or explicitly tested against the requirements of the Human Rights Act and EU data requirements, against public health considerations, or public confidentiality expectations.  It has never as far as we know been subject to any parliamentary debate and scrutiny.  For the purposes of consultation it was therefore a wholly new policy, requiring far greater public discussion and debate.  This point was also made by Dame Fiona Caldicott in her letter to the Chair of the Health Committee.[v]  The suggestion that disclosure of personal data such as home addresses of patients is a matter simply for internal consideration between government departments is not reasonable. 

13.              Furthermore, the MoU not only formalises past practice but extends it in significant ways.  There is an extended application of the public interest test to matters other than s24/s24A immigration offences (para.7.5).  Individual home addresses and GP addresses are now provided, not just, as formerly, the local Primary Care Support Service organisation (PCS).

14.              Not only has the nature of the immigration tracing service changed, there has also been a substantial increase in the number of tracing requests being made by the Home Office.  For the five years of data analysed in the Partridge report, from 2008 to 2013, there were 7,766 responses made to immigration tracing requests (it is unclear whether this covered all trace requests or only those approved).  In just three years from 2013 to 2016, looking only at the tracing requests approved, there were 12,672 responses.

C              The impact on individual and public health

Will immigration tracing deter people from accessing healthcare?

15.              We contend that the immigration tracing service, once its existence is explained and known about in migrant communities, will deter often vulnerable people from accessing the healthcare they need, to the detriment of individual and public health.  We refer the Committee to the excellent PHE response to the National Back Office Review, which sets out the arguments and evidence very clearly.

16.              There are inevitable challenges around statistics on access to healthcare for undocumented migrants.  For a start, it is difficult to quantify the denominator i.e the number of undocumented migrants in a particular country or area.  This is because the definition of undocumented migrant is itself complex, residency status changes over time, and most importantly such migrants often live ‘below the radar’.  With regard to healthcare services, residency status has not to date been recorded in England in primary care.  Furthermore, causes of health-seeking behaviours are difficult to quantify statistically and are inevitably multifactorial.  With regard to the immigration tracing service in England, we cannot of course as yet provide much evidence of its deterrent impact because its existence has not been publicised.

17.              Nevertheless the PHE evidence provides numerous peer-reviewed references as to the deterrent impact of fear of immigration enforcement on access to healthcare (a ‘wealth of evidence on migrant health behaviours’ to cite Duncan Selbie’s covering letter to the Committee).  Some of the papers are quantitative and provide statistical evidence (for example, a survey of consecutive TB patients in a Los Angeles clinic which found amongst those patients who feared immigration authorities 47% delayed accessing care even when symptomatic compared with 18% amongst those who did not cite such a fear[vi]).  In addition, those with peer-reviewed qualitative information, often using semi-structured interviews, provide important evidence and comply with social science research methodology – they are a perfectly appropriate basis from which to draw conclusions for policy.

18.              In addition to the evidence cited in the PHE submission, DOTW have gathered important evidence of deterrence.  DOTW run clinics and provide assistance to migrants in accessing GP services.  They have now started informing their patients of the fact their details may be shared with the Home Office.  Even before people knew about the MoU, around 10% of the patients seen by DOTW avoided NHS services because of fears of immigration enforcement.  Now the existence of the MoU is known, an increased number of patients are informing them that they will either not register at all with primary care or only do so if seriously ill, thus missing out on essential preventive care.  Two recent studies conducted amongst DOTW staff, volunteers and patients by researchers from King’s College, London, found significant evidence of deterrence from healthcare relating not just to charges for treatment but also to the reporting of unpaid bills to the Home Office as well as to the MoU tracing service.[vii]

19.              We note the important point that the deterrent impact of immigration enforcement within healthcare extends not just to those who are in fact ‘immigration offenders’ but also to those who may currently have lawful residency status.[viii]

20.              We believe therefore there is plenty of evidence that the data sharing agreement will have a deterrent effect on migrants accessing healthcare. 

21.              We would also make three further points.  The first is that the assumption of a deterrent effect is reasonable, and indeed is intrinsic to the principle of confidentiality in healthcare.  The GMC Guidance on Confidentiality states in its first paragraph, ‘Patients may avoid seeking medical help, or may under-report symptoms, if they think their personal information will be disclosed by doctors without consent, or without the chance to have some control over the timing or amount of information shared’.  It later adds, ‘Confidential medical care is recognised in law as being in the public interest. The fact that people are encouraged to seek advice and treatment benefits society as a whole as well as the individual’.[ix]  It stands to reason that someone of uncertain immigration status who is told that accessing a GP will mean their whereabouts can be accessed by immigration authorities will think twice about attending or delay attendance.

22.              Secondly, the burden of proof in this debate is the wrong way round.  The NHS Digital Review looks for evidence that tracing will deter people from accessing healthcare – we submit that they should rather have been requiring from the Home Office evidence, or at least arguments, that the tracing service, once known about, will not deter people from healthcare.  One of NHS Digital’s general duties in statute is to have regard to ‘the need to respect and promote the privacy of recipients of health services and adult social care in England’.[x]  Were NHS Digital meeting this duty, they would have begun from the premise that privacy should not be breached, and require evidence that harms will not ensue from disclosure.  Instead it is clear from the Review that they began with an assumption that the status quo ante of the tracing service should continue if at all possible.

23.              The Government have agreed to commission a review from PHE of what, if any, deterrent effect may arise from the tracing service.  A third question to raise, however, is what difference the conclusions of such a review would make to the position of the Home Office and the DH.  It is after all wholly possible for such a harmful impact to be demonstrated (as we contend in fact it already is) but Government to conclude nevertheless, in applying the public interest test, that the public interest in immigration enforcement outweighs the interest in supporting the health of these undocumented migrants.  What evidence of deterrence would be sufficient to make both the Home Office and the DH agree to end the tracing service?  And is the required evidence possible to secure from any proposed PHE project?  Any PHE research would in our view not be a good use of public funds and resources in the absence of clarity and commitment from the Home Office and DH on these points. 

Consequences of deterrence from healthcare

24.              It is important to note that, even before any dissemination of information on the MoU, migrant access to healthcare, especially though not exclusively for those with uncertain status, is poor, for a range of reasons, results in adverse outcomes, and needs to be significantly improved.  For example, recent research by PHE of a migrant cohort found only 32% of migrants registered with primary care after settling in the UK.  Migrants from Africa and the Americas, as well as asylum seekers, students and long-stay visitors were less likely to register than other migrant groups.[xi]  The DH should be actively promoting policies to increase rather than deter healthcare attendance.

25.              For the individual migrant, deterrence from healthcare can be extremely dangerous, if not fatal.  Conditions which could have been successfully treated if diagnosed in good time may instead progress to the point of crisis, resulting in severe ill-health and in some cases death (not only does this impact directly on adult migrants but also on their dependent children).  This is of course deplorable from a humanitarian point of view.  Furthermore, undocumented migrants have a right to access NHS hospital care for immediately necessary or urgent treatment.  Substantial, and wholly avoidable, costs will accrue to the NHS from having to treat someone gravely ill, for example in intensive care, as a result of the deterrence to their accessing health services earlier for routine or preventive care. 

26.              Whilst overall migrant health is better than the general population because they tend to be younger, there are certain conditions which are more prevalent in some migrant communities, in particular HIV, TB and hepatitis B and C.  PHE also cite other significant communicable diseases such as other STIs, influenza, SARS, MERS-CoV and Ebola.  The position of the DH has to date been that access to primary care should remain free from overseas visitor charges for undocumented migrants so as to encourage access to testing and diagnosis of these significant infectious diseases.  It is self-contradictory for them to agree to an immigration tracing service which will undermine such access.  The result will be failures and delays in the diagnosis of people with these transmissible conditions – harming not just individual health but public health. 

HIV

27.              Late diagnosis of HIV increases by tenfold risk of death within the first year after diagnosis,[xii] and increases by 50% ongoing healthcare costs for the patient because of higher morbidity over time.[xiii]  It also means that people have been living with undiagnosed and transmissible HIV for a number of years, putting others inadvertently at risk of HIV.  Whilst the national late diagnosis rate for 2016 was 42%, the rate for black African men and black African women was 65% and 49% respectively – almost all of the newly diagnosed people of black African ethnicity will be migrants.[xiv]  There are already barriers to healthcare access linked to HIV stigma and fears around immigration enforcement.  Knowledge of the MoU will only further deter people from essential, timely diagnostic services, increasing HIV transmission rates and HIV-related mortality and morbidity.

TB

28.              We would highlight the PHE evidence to the Review around TB, with the UK having some of the highest rates in Western Europe and noting that TB is one of PHE’s seven corporate priority issues for 2015-2020.  With 74% of TB cases notified being amongst those born abroad, early diagnosis is essential both to prevent TB transmission and avoid serious ill-health and death.  There are also particular risks of developing, and then transmitting to others, drug-resistant strains of TB if people disappear from care before their six-month course of treatment is completed.

Maternity Care

29.              We would also mention the risks in relation to maternity care.  Current policy is to charge undocumented migrants for maternity care in hospitals.  This is in our view inhumane and dangerous and results in great risks to mother and child.  Inadequate or non-attendance for maternity care has long been strongly associated with maternal mortality. Successive reports of the Confidential Enquiries into Maternal Deaths in the United Kingdom have highlighted very late first booking for maternity care, missing over four routine antenatal visits, or receiving no maternity care at all (Lewis, 2007, CEMACE, 2011, MBRRACE, 2015).[xv]  The Confidential Enquiry into Maternal Deaths for 2006-2008 found that black African mothers, the largest number among whom were recent migrants including refugees and asylum seekers, had a mortality rate nearly four times that of white women.[xvi]  The DOTW research found that pregnant women are specially affected by fear of immigration enforcement in healthcare.  One woman presented at a DOTW clinic already in labour having avoided all ante-natal care previously because of fears of being reported to the Home Office.[xvii] 

30.              In a recent survey by the National Perinatal Epidemiology Unit, two thirds of women went to a GP or family doctor as their first point of contact for their pregnancy care.[xviii]  Recent migrants are most likely to attend a GP first but once they know that registering with a GP is in effect to provide information to the immigration authorities, the risk is that even access to primary care will diminish, further exacerbating pregnancy-related risks and mortality. 

31.              DOTW has seen people accessing unregulated healthcare and medications as a result of fear of accessing NHS services, with significant risks and harms attached.  A further risk is simply the use of false addresses which undermines both care and surveillance.

D              The ‘seriousness’ threshold

General Medical Council Guidance

32.              GMC guidance makes clear that confidentiality of patient information should only be breached by clinicians in exceptional circumstances.  One of those circumstances relates to ‘serious crime’:

“Confidential medical care is recognised in law as being in the public interest. The fact that people are encouraged to seek advice and treatment benefits society as a whole as well as the individual. But there can be a public interest in disclosing information to protect individuals or society from risks of serious harm, such as from serious communicable diseases or serious crime.

If it is not practicable to seek consent, and in exceptional cases where a patient has refused consent, disclosing personal information may be justified in the public interest if failure to do so may expose others to a risk of death or serious harm. The benefits to an individual or to society of the disclosure must outweigh both the patient’s and the public interest in keeping the information confidential.

Such a situation might arise, for example, if a disclosure would be likely to be necessary for the prevention, detection or prosecution of serious crime, especially crimes against the person.”[xix]

33.              GMC Guidance is premised on the need for a case-by-case assessment of ethical responsibilities which is why they provide Guidance on confidentiality rather than rules or regulations.  NAT and DOTW wrote to the GMC to ask about the circumstances in which it would be deemed acceptable for a doctor to provide home addresses of a patient to the immigration authorities.  The Chief Executive of the GMC responded in a letter dated 14 August 2017, as follows, ‘We can’t determine in any given situation where the public interest lies – that is for the doctor to judge based on the particular circumstances of the case.  But it is not obvious to us that the fact alone of having committed an immigration offence is sufficient to override the public interest in having confidential service’. 

34.              Importantly the GMC holds this position in relation to home addresses also, not simply clinical information.  Whilst the case-by-case approach to ethical decisions precludes the GMC stating categorically that there could never be a case where sharing is justified, the difficulty the GMC has in thinking of such an instance contrasts with the fact that there has, as far as we know, never been a case where NHS Digital have refused a tracing request on substantive grounds.[xx]

NHS Guidance

35.              This seriousness test in relation to criminal offences and confidentiality is also found in the NHS Code on Confidentiality 2003 (Annex B paras.30-33) and especially in the Supplementary Guidance on Public Interest Disclosures published in 2010 (paras.12-16).  The test is clearly whether the crime is ‘serious’.  Again, the Supplementary Guidance stresses the case-specific nature of any judgement as to what constitutes a serious crime, whilst providing some helpful examples both of serious offences and those usually considered not serious:

“’Serious crime’ is not defined in law but will include crimes that cause serious physical or psychological harm to individuals.  This will certainly include murder, manslaughter, rape, treason, kidnapping, and child abuse or neglect causing significant harm and will likely include other crimes which carry a five-year minimum prison sentence but may also include other acts that have a high impact on the victim.”

NHS Digital practice in relation to police requests for non-clinical information

36.              In relation to police requests for non-clinical information, the position to date of NHS Digital has been consistent with this Guidance and was explicitly set out by them in a published statement on 4 April 2014 on ‘Police requests for data’:

“Under the Data Protection Act (DPA), police are able to make requests to the HSCIC for information if they are investigating a serious crime. In most cases this relates to non-clinical data and where the police are trying to locate an individual suspected of serious crime, by requesting the geographical region of the individual's GP registration. This does not require a data agreement to be in place and therefore is not within the scope of the HSCIC register of approved data releases.

Such information is only ever released where the alleged crime is serious, such as rape, murder or an offence against children. The HSCIC assesses each of these requests under strict criteria to balance the public interest with the interests of the individual concerned.

… Where the seriousness of the alleged crime does not meet the strict criteria, we refuse the request.

To insist on the release of clinical data, the police need a court order and the HSCIC never releases clinical information unless this court order exists. 

This information has previously been made public by the HSCIC in a Freedom of Information request and in statements to the media.”[xxi]

What NHS Digital did not add in that statement was they had for years applied a wholly different approach to immigration offences and tracing requests from the Home Office.

Are immigration offences ‘serious’?

37.              Immigration offences cannot reasonably be considered to be serious crimes on a par with, for example, murder, rape or manslaughter, or other crimes against the person (and penalties fall well below the suggested threshold in the NHS Supplementary Guidance of a minimum 5-year sentence[xxii]).  They are the only non-serious offence where NHS Digital routinely provide home address information to law enforcement.  Such inconsistency is inequitable and discriminatory.  The Review attempts to justify this inconsistent approach to migrants:

“ .. in regard to record tracing requests that are subject to public interest considerations under the common law, it would be flawed to adopt a common process given the inherent lack of comparability between different offences, and between different purposes and contexts.

The Review believes that a common process would be contrary to fulfilling its obligations in undertaking a fair and equitable consideration of the public interest in each case.  The Review therefore considered the current model of applying different but appropriate criteria to each function and on a case-by-case basis as being correct.”

This is a puzzling passage.  Guidance on confidentiality and law enforcement from both the GMC and the NHS have always proposed the application of a common process guided by consistent criteria and considerations.  Offences of course differ from each other but there is nothing incommensurable about a particular set of offences compared with others – the test of seriousness can be applied across all offences and should be.  To put it another way, the legal requirement of applying a public interest test has to be consistently applied according to some common principles. 

Moving the goalposts – plans to redefine confidentiality protections

38.              Faced with the clear argument that the immigration tracing service does not comply with the seriousness threshold as found in GMC Guidance and the NHS Code on Confidentiality, and implicitly accepting that assessment, the Government plans to remove the inconsistency by ending the requirement that ordinarily the seriousness test has to be met, in relation not just to immigration offences but to all offences.  The Review states that ‘the Department of Health has agreed to review and update the NHS Code of Practice: Confidentiality 2003’.

39.              This underlines the principle of the indivisibility of human rights and the fact that once rights are breached for one, often socially unpopular, group – in this instance undocumented migrants – it is only a matter of time before the rights of everyone else are similarly eroded.  It also underlines that the issues at stake in the controversy over the NHS Digital MoU affect everyone in England using the NHS and the future confidentiality of the information they provide to doctors. 

40.              Putting aside here the question of whether any such change would even be lawful, we argue as a matter of policy that it would be immensely harmful to patient confidence in healthcare and access to essential services to allow non-clinical information such as home addresses to be shared by clinicians or the NHS, irrespective of the degree of seriousness of the offence (shoplifting, low-level drug offences, theft, public order offences etc).  We hope the Committee will take a similar view. 

41.              Much is made by NHS Digital of the fact that the information provided is of an ‘administrative’ and non-clinical nature, ‘at the less intrusive end of the privacy spectrum’.  It remains, however, the case that it is covered currently by GMC and NHS guidance and requires the seriousness threshold to be met.  We question whether this information is any less significant and sensitive for the relevant patients – the test as to the intrusiveness of the information is whether its routine disclosure would discourage those patients from seeking advice and treatment.  We believe it would. 

E              The public interest test and proportionality

‘The importance of immigration control’

42.              In relation to the common law on confidentiality, a public interest test has to be applied for any disclosure.  We have set out above the usual requirement in relation to investigation of offences – that the offence be ‘serious’.  We have also explained why in our view the immigration offences under consideration do not meet that test.  A slightly different argument made both by the Review and by the MoU refers not to the offence as such but to ‘the public interest in maintaining immigration control’:

“The Review further recognised the importance that Parliament places on the role of immigration enforcement, and the seriousness of immigration control as recognised by the courts and internationally.”[xxiii]

43.              The MoU states that ‘The commission of a criminal offence of this type is a matter of high public interest’.  It raises the possibility of a migrant being a danger to the public or to themselves but this could well be covered by the seriousness test in any event.  It goes on to claim, ‘immigration offenders harm the economic wellbeing of the country’ and that ‘Parliament has clearly stated the importance of maintaining effective immigration control and that this is in the public interest’.

44.              Any offence legislated by Parliament demonstrates the importance attached to the issue and this argument would allow information in relation to any offence to be disclosed, irrespective of seriousness.  Beyond the simple fact of legislation, it is from the penalties prescribed that some sense of the degree of importance can be inferred.  We have already shown that with regard to these immigration offences the maximum penalties are relatively minor. 

45.              Beyond the objective fact of legislation, the argument in the MoU drifts into current and often controversial government policy, and claims, for example around economic impact, which are hotly debated.  This is to intrude government and political agendas into what should be a non-partisan and ethical process enjoying consensual support.  It is striking that the ‘serious crime’ test is universally accepted (whilst acknowledging differences of opinion in specific cases as to whether that test has been met).  The practice of immigration tracing is deeply controversial and has come as a great shock to many clinicians.

Is the tracing service sufficiently useful?

46.              The proportionality test needs to consider not just the abstract question of the seriousness of immigration offences, but also the extent to which in practice this tracing service process is useful when compared with the loss of confidentiality protections for significant numbers of patients.  In the Review Technical Annex at 6.1 there is a Table which provides statistics for tracing requests over a number of years.  If we have understood the Table correctly, for 2014/15, of the 3,087 immigration traces approved, a trace was found for only 1,987, and of that number in just 244 cases was the information sent back to the Home Office an update on the information originally held by the Home Office (7.9% of approved trace requests).  In 2015/16 of the 6,167 traces approved, a trace was found for 4,336 and in 195 cases did the information returned to the Home Office provide an update on information originally held (3.2% of approved trace requests).

47.              Furthermore, the Review provides no information on how useful the Home Office actually finds the updated information received, and the extent to which such traces result in apprehension of those being sought and resolution of the immigration issue to be addressed (we wonder if the Review even asked these questions).  The numbers will, by definition, be even smaller than those where the updated information was supplied.  We contend that in the scheme of things the numbers probably apprehended through this tracing service do not justify the breaching of a fundamental principle of confidentiality.  

The tracing process

48.              There are also a number of questions to raise in relation to process.  One is how the public interest test can be applied on a case-by-case basis. The MoU makes clear that for each tracing request an assessment that the disclosure is in the public interest needs to be made both by the Home Office (MoU para.11.1) and by NHS Digital (MoU para.11.2).  The public interest test involves balancing different public interest considerations.  This is indeed a requirement both in common law and under the Human Rights Act. 

49.              However, the MoU in relation to the public interest test only contains content on the public interest in immigration enforcement.  It is extraordinary that in a document also signed by the DH and NHS Digital there is no content on the public interest in the promotion of individual and public health, or the public interest in privacy and in medical confidentiality, a point also made to the Committee in correspondence by the GMC.[xxiv]  If officials are looking to the MoU for guidance on how to apply public interest considerations in a specific case they will be seriously misled.  It would be good to know what training is provided to both Home Office and NHS Digital officials on how to apply the public interest test and Human Rights Act in these cases, and whether there has ever been a case considered by NHS Digital which was rejected because the public interest test was not met – we are not aware of any. 

50.              It would also be interesting to know at least hypothetically in what instance the Home Office and NHS Digital would consider it not in the public interest to disclose the data of someone clearly offending under 24 or s24A of the Immigration Act 1971.  The framing of the MoU does not seem to allow for such an instance.  And both Home Office and NHS Digital officials know too little about the circumstances of the individual patient to make the sort of assessment expected of clinicians under GMC rules.

51.              A further question arises from the expectation that the Home Office has both correctly identified an individual as an ‘immigration offender’ and that ‘other reasonable and appropriate efforts to locate them have failed’.[xxv]  The Home Office has a very poor record with regard to accuracy and the use of data.  For example, the Report of the Independent Chief Inspector of Borders and Immigration, David Bolt, on ‘hostile environment’ measures relating to driving licences and bank accounts, January to July 2016, found that 10% of those refused a bank account as a result of Home Office information were wrongly disqualified.[xxvi] We would be interested to know if there has ever been a refusal of an application because NHS Digital were not convinced by the claim that someone was an offender, or by the assurance that other efforts to locate the individual had failed.  We would also be interested to know the extent to which there are repeat applications both within and between years in relation to the same individuals. 

52.              There has been no advice from the DH or NHS as to how GPs should inform their patients of the fact that their addresses might be shared with the Home Office.  We believe that it is a legal requirement that they do so. 

53.              More fundamentally, we now have the situation where GPs cannot ordinarily share patient addresses with the Home Office under GMC rules, but are expected to share that information with NHS Digital, knowing it may well then be passed on to the Home Office.  This puts GPs in a compromised ethical position.  We do not believe it is acceptable for NHS Digital to operate to different confidentiality standards from clinicians with respect to the data they receive from those clinicians. 

54.              This brings us to a fundamental issue – the statutory position of NHS Digital and its suitability as a guardian of patient information.  NHS Digital is a non-departmental public body, with a ‘dotgovdotuk’ email address.  We are unclear as to the degree of independence enjoyed by NHS Digital, both in theory and in practice, from Government policy imperatives.  We never had a sense throughout the review process that it was likely that NHS Digital would refuse the Home Office its tracing service.  Even if there is a degree of greater independence when compared with government departments, the Secretary of State still exercises considerable influence, for example through powers of appointment to the Board.  Government departments will be tempted to follow the Home Office’s example and seek to access the invaluable data sets held by NHS Digital for other ‘public interest’ purposes. We believe it would be more appropriate for NHS Digital to report directly to Parliament and enjoy a legal status which more effectively secures its independence from government pressures.  NHS Digital must act as a public service, not the civil service.

National AIDS Trust and Doctors of the World

January 2018

14