Barriers to care: immigration removal centres and HIV

Evidence has shown that a series of failings in immigration removal centres (IRCs) has compromised the continuity of care for people with HIV. Guest writer Daniel Lombard investigates.

Immigrants who find themselves detained by the Home Office prior to being removed or deported from the UK are sometimes described as the most vulnerable people in society. Detainees with HIV are even more vulnerable, in part because they rely on UK Border Agency staff and private contractors to provide proper access to health care.

With a complex system overseen by Home Office officials, who commission services from a network of private-sector security and healthcare contractors who are expected to work seamlessly alongside NHS clinical staff, campaigners say it’s not surprising that mistakes are often made.

Louise Whitfield is an associate solicitor at Pierce Glynn, a firm involved in challenging the poor standard of HIV health care in immigration removal centres (IRCs) on behalf of detainees.

She explains: “The Home Office detains the person, private contractors arrange transport, private healthcare providers are at the removal centre and specialist HIV doctors are at the hospital, and in some cases there are community nurses involved. You’ve got all those people trying to do different things. It’s a very complicated set-up.”

What the professional guidance says

Detainees are held within the UK’s 13 IRCs. Under Home Office Detention Centre Rules,¹ each IRC must provide health care to detainees; it is generally accepted in law that this should be of the same standard of care as that provided to people living in the community.

Guidelines produced by the National AIDS Trust (NAT) and the British HIV Association (BHIVA)² explain that asylum seekers whose applications are rejected and are not awarded humanitarian protection or discretionary leave to remain are expected to return to their country of origin. The UK Border Agency can detain anyone who does not leave voluntarily until it is possible for them to be removed. According to the guidance, more than a third of all asylum seekers come from Africa, the region with the highest HIV prevalence, and a significant number are detained in IRCs at some point during the asylum process. NAT and BHIVA state, therefore, that “there is an urgent need to consider the HIV-related health and social care needs of asylum seekers and others in detention”.

Their guidance contains the following recommendations covering the three stages of the detention process: reception, detention, and removal.³

Reception

“Every detainee should be seen for a reception health screening within 24 hours of arrival in an IRC.”

An arrangement must be in place between the IRC and the local HIV clinic to obtain antiretroviral medication within 24 hours for an HIV-positive detainee who does not arrive with his or her anti-HIV drugs.

Detainees who inform the IRC nurse that they are HIV-positive during the initial health screening should be given an appointment with the on-site GP within one week, and an appointment with a local HIV specialist should be arranged at the same time.

Detention

“Those who are newly diagnosed with HIV in IRCs should be referred to an HIV specialist to access appropriate baseline investigations and any necessary treatment.”

Detainees with HIV should be allowed to keep their medication with them and be supported to maintain confidentiality. Where this is not possible, IRC healthcare staff must ensure the detainee has the opportunity to take the medication as required.

Removal

Detainees must not be removed unless they are deemed to be “medically stable and fit to travel”. Final judgement must be determined “on a case-by-case basis and should always rest with the IRC GP in consultation with HIV specialists”.

Prior to removal, “IRC healthcare staff should ensure the detainee has been provided with:

• A letter for their future treating clinicians.
• Three months’ supply of medication.
• Contact details of trusted HIV support organisations in their destination country.”

Sarah Radcliffe, senior policy and campaigns officer at NAT, says the most contentious issue is often the provision of three months’ supply of medication. “Some detainees only leave with enough for one month,” she says.

Substandard care – in handcuffs

A report produced by Medical Justice, an organisation concerned with the denial of health care to detainees, and published in March this year, laid bare the severe consequences of poor treatment for HIV-positive detainees.

It concluded: “The process of detaining people who are HIV positive inherently puts them at risk.” It added that “the British government is willing to deport people who they know will die within a few years” due to limited treatment options available in some developing countries.

Failings included disruptions to ARV regimens, exposure to the risk of contracting opportunistic infections, and denying people access to HIV specialists in hospitals, according to the report, Detained and denied: the clinical care of immigration detainees living with HIV.⁴

Some people were forced to undergo consultations with healthcare professionals while handcuffed to escorts, while treatment was so detrimental that, in some cases, it “may have left [detainees] requiring complex clinical care for their HIV infection”.

NAT has been aware of inconsistencies in delivering health care for HIV-positive detainees for “five or six years”, according to Sarah Radcliffe.⁵

People often end up in detention after being taken by officers in the middle of the night, without having their drugs on them. In the worst cases, disruption to people’s supply of HIV treatment can cause drug resistance to begin to develop.

To combat this, the NAT and BHIVA published their guidelines in a 24-page advice booklet, in 2009, for healthcare and voluntary sector professionals. Detention, Removal and People Living with HIV aims to share the principles of best practice in this field.⁶

The Medical Justice report found that, among 35 cases reviewed, there were 79 breaches of the NAT/BHIVA guidelines.

A spokeswoman for the UK Border Agency told HTU that the practice of handcuffing detainees for hospital appointments was not routine, and only used in certain circumstances, for example where there is a risk of absconding.

But Ben Holden, HIV consultant at Hillingdon Hospital in London, disagrees. “It’s more common to see someone in handcuffs than not, though we have never had anyone try to escape. People have the cuffs kept on in the waiting area and then they are removed in the consultation room.”

He adds that the use of handcuffs “simply adds to the upset and worry” for the detainee and other patients.

Following one incident in which doctors at Hillingdon Hospital refused to treat a detainee, because a guard refused to uncuff him, UKBA officers installed extra security locks on the windows at the sexual health clinic to prevent anyone from escaping.

One of the organisations working alongside healthcare professionals at Hillingdon Hospital is Hillingdon AIDS Response Trust (HART), a local charity supporting people with HIV, including asylum seekers arriving at Heathrow airport.

Simon Bellham, manager of HART, says: “The quality of health care for people in this situation is extremely patchy. It depends which detention centre and which part of the country you are in.

“The system is geared towards security and the needs of the service, not the individual. I would like to see an overhaul of the entire system.”

A complex system

Primary health care within IRCs is provided by private contractors, which should allow detainees access to HIV treatment and other secondary care, provided by local hospitals.

Where medication is concerned, the responsibility for prescribing drugs to detainees lies with primary care trusts (PCTs), but this will change with the ongoing NHS reforms. “It could be possible that will be done centrally in future by the [proposed] national NHS Commissioning Board,” NAT’s Sarah Radcliffe says.

Professor Jane Anderson, chair of the British HIV Association and HIV consultant at Homerton University Hospital in London, stresses that healthcare professionals in IRCs do their best under difficult circumstances.

“The GPs work very hard – I’ve met some of them and know how committed they are - but the healthcare system in removal centres is not set up to provide high-quality specialist care,” she says.

In detention you are likely to have clusters of stressors. People can stop coping and face depression; if they have chronic exposure to stress their resilience goes down. Lorraine Sherr, Professor of clinical and health psychology, University College London

The complexity of the system is compounded by a lack of co-ordination between the UKBA and private contractors, as Pierce Glynn’s Louise Whitfield observes: “There have been a number of incidents where transport has been cancelled, because the detaining authorities take the view that a hospital appointment is less important than attending court, for example. That might be the correct decision for a dental appointment, but for an urgent medical appointment, where you could become fatally ill if you miss it, then it is clearly not correct.”

In a case brought by Pierce Glynn on behalf of three detainees with HIV,⁷ even the evidence the Home Office relied on said: “The split of responsibility between community nurses, general practice [in the IRC] and the hospital in Sussex seems extremely bureaucratic and complicated and almost inevitably led to a breakdown in communications.”

Home Office detention guidelines⁸ originally stated that any person with a serious medical condition should only be detained in “very exceptional circumstances”, such as where there are public safety concerns.

Following the trial involving the three detainees, however, the Home Office amended this guidance so that the very exceptional circumstances only applied to “those with serious medical conditions that could not be satisfactorily managed in detention” – leaving HIV-positive detainees with weaker legal protection.

Psychological impact

The psychological impact of living in detention with HIV should not be underestimated. As the NAT/BHIVA guidance states, not only do people have to cope with anxiety associated with HIV, they may also previously have suffered trauma through conflict, rape, torture and imprisonment.

Lorraine Sherr, professor of clinical and health psychology at University College London (UCL), says the constant stress could cause people with HIV to suffer mental breakdown and further damage to their immune system.

“In detention you are likely to have clusters of stressors. People can stop coping and face depression; if they have chronic exposure to stress their resilience goes down. You get multiple mental health issues, not just depression and anxiety but other conditions such as post-traumatic stress disorder.

“There’s also a direct link between immune systems and mental health, and your ability to fight off infections will be affected by mental health problems.”

The case for reform

Some experts, such as Louise Whitfield, agree with the recommendation from Medical Justice that no one with HIV should be held in detention for immigration purposes. While such a radical change is unlikely to happen, others put forward the following suggestions for improving health care for HIV-positive detainees.

• Outreach services. Instead of transporting detainees to hospitals, HIV specialists should travel to IRCs. Hillingdon Hospital’s Dr Ben Holden says nurse prescribers could provide initial services, adding: “It would be better value for money than the current system that requires three guards per patient.”
• Advocacy services. HART’s Simon Bellham would like to see a dedicated worker in each IRC acting as an advocate for the physical and psychological wellbeing of detainees.
• Mental health services. UCL’s Professor Sherr says: “Counsellors need to be aware of their limitations and know who they can refer patients to if certain problems are beyond their abilities to address, such as someone with post-traumatic stress disorder.”
• Information for people at risk of entering detention. BHIVA’s Professor Anderson says: “If we are caring for people with HIV at risk of being detained, it’s important that they know how to ask for appropriate help and have contact information that they can pass on to IRC healthcare teams.”
• Better co-ordination between services. NAT’s Sarah Radcliffe says: “It’s about joining the dots between the IRC management and healthcare teams and making health care for people with HIV a priority in amongst all the other pressures involved in detention settings.”

The UK Border Agency has met with NAT and BHIVA to discuss a possible audit of the treatment of HIV by healthcare teams in removal centres, hoped to begin in early 2012.

Lisa Power is policy director at the Terrence Higgins Trust. She says this will be an important piece of work, but believes “there will still be problems with the immorality of sending someone away from the country to die”.

The UK Border Agency says that it takes its duty of care to detainees “extremely seriously”. A spokesperson adds: “We provide round-the-clock access to healthcare services in all immigration removal centres which are equivalent to those available in the community.

“HIV treatment is delivered through specialist PCT clinics. Every effort is made to ensure arrangements are in place in advance of detention and all detainees are interviewed by a healthcare professional within two hours of arrival where their care needs are identified and suitable arrangements put in place.”

Despite these pledges, Power says THT will keep a close watch on the performance of UKBA and its contractors.

“It’s so important that breaches are reported and investigated, and for charities like ours to hold the providers to account.”

Case study

George [not his real name], from central Africa, spent nine months in detention from August 2009 to May 2010. He had overstayed his visa and faced removal from the country, having been diagnosed with HIV shortly before entering detention. George was one of three people who challenged their detention on the grounds that “management failures” – he missed several healthcare appointments and ran out of medication for two weeks – had made their detention unlawful. This was rejected by the High Court in 2010 but an appeal is being considered.

George is now living in rented accommodation in Essex, awaiting judgements on various appeals. Here he recalls his traumatic experiences in Brook House immigration removal centre, near Gatwick.

“It’s hard to describe the feeling of being in detention with a serious health condition. All the emotions you go through, it’s something you only understand if you have been there. If someone said ‘I give you £1 million for one year’s detention or I give you no money to be free’, I would be free every time.

I missed two weeks of medication and had to be moved to another regimen because I developed resistance.

“I came to London in 1993 to escape civil war in my country. I was refused asylum but appealed, and legal cases went on for a number of years.

“I reported to the Home Office as usual on 5 August 2009. I expected it to take five minutes but they told me to stay and detained me. Later I discovered it was because my appeals were exhausted.

“Before I was detained the doctor told me I had HIV but said I didn’t need medication, which surprised me. After a month in detention I saw a nurse and HIV consultant who prescribed ARV medication. But I wasn’t able to get this because he needed the file from my previous doctor and it took three or four weeks to arrive.

“I went to East Sussex Hospital every couple of weeks, but I missed three or four appointments because there was some blunder involving the contractor. A couple of times the cab didn’t show up. Another time the person in the detention centre forgot to book transport.

“I was worried - if the first line of medication failed, I was in trouble. I was afraid my life was in danger because I could get deported at any time, I was thinking how am I going to deal with this?

“I was very frustrated and anxious. I just kept it to myself; the only person I could talk to was my doctor. I could use the telephone but who could I talk to? I lost contact with my family a long time ago.

“I missed two weeks of medication and had to be moved to another regimen because I developed resistance. As long as you take the pills you feel you are safe. But when you miss it you think what’s going to happen, am I going to be OK? I was afraid I would get AIDS.

“I was told three or four times I was being deported. Emotionally it is very difficult. It’s worse than someone beating you up, because then you know someone will stop and you can relax, but in detention it’s like someone is beating you up and it will never stop. The Home Office is totally in control.

“I’m very grateful to my lawyer for supporting me and providing a very good defence.

“I know my life is going to be difficult if I go back to Africa. I would have to live like a drug addict where you just get enough money to survive and you don’t care about eating or sleeping. I don’t think I would tell my family about my status because in Africa it is a shameful thing to be HIV-positive.

“I’m worried I would not have access to the medicine I need. If it is available, it would be very expensive. As far as I know there are no pharmaceutical companies in my country. Even aspirin is imported so they probably wouldn’t have access to complex medication like ARV.”