April 18, 2014

Seeking sanctuary: HIV and asylum seekers in the UK

A proposed immigration law currently under discussion in the UK parliament could be devastating for asylum seekers living with HIV, deterring them from accessing primary care.

As national borders become increasingly open, and conflict escalates in many parts of the world, numbers of people seeking asylum in Western countries continue to rise. And asylum seekers living with HIV already face many challenges when accessing high quality, necessary care in the UK, which will be amplified if proposed legislative changes are introduced.

The number of people seeking sanctuary in the UK in 2011 was 26,430 (Eurostat). While the press and the potent narrative of nationalist parties, such as UKIP, may suggest otherwise, the UK is not the most popular European country for refugees. France (57,335), Germany (53, 255), and Belgium (31,915) are among the six European countries receiving more asylum seekers than the UK.

UK asylum seekers and HIV

Many asylum seekers and refugees who arrive in the UK come from countries with a high HIV prevalence, including Zimbabwe, Nigeria, and Uganda.

According to the UK Health Protection Agency, 65% of people newly diagnosed with HIV between 2001 and 2010, with country of birth known, were born abroad. Africa was reported as the region of birth for 87% of heterosexual diagnoses, with nearly half from south eastern Africa.

Asylum seekers are particularly vulnerable to HIV. Their migration may have been triggered by detention, torture, rape, sexual assault or harassment, or they may have been exposed to high-risk situations for HIV. In the UK the experience of being an asylum seeker may involve poor living conditions, malnutrition, lack of protection and depression, all leaving them vulnerable to sexual exploitation. Female asylum seekers are the most at risk.

Stress and asylum

Asylum seekers face many sources of stress. These can be difficulties experienced in their home country prior to leaving, during their flight and when they arrive in the UK. Fears of being sent home, problems accessing health care, separation from family and social support, difficult interviews with immigration officials, detention, and unemployment can all generate high levels of personal stress.

For asylum seekers living with HIV, their HIV positive status compounds and adds to these problems. Differences between the UK’s health system, compared to that of their home country where health is often paid for and difficult to access, complicates the situation.

According to a study published by Biomed Central in 2012, levels of resilience among asylum seekers living with HIV in the UK can vary.

People find ways to cope by tapping into personal resources, such as drawing on a personal faith, seeking support from HIV care providers, and staying busy. But when local policies attempt to segregate asylum seekers (as proposed during 2013 in Switzerland), the stress they are under increases.

Access to quality services

For asylum seekers living with HIV access to, and retention in, the health system is vital. According to Estelle Worthington, from the Regional Asylum Activism Project: “People seeking asylum in the UK already experience restrictions in entitlement to accessing secondary care. This has led to the shocking reality that asylum seeking women are three times more likely to die in child-birth in the UK than the average British woman.”

Since 2012 all people in the UK affected by HIV, regardless of immigration status, have unrestricted access to primary care. However, asylum seekers still require information and support when seeking access; going to the wrong place (for example specialised hospital care instead of a local general practitioner) can lead to them incurring charges.

Contrary to populist media reports there is no evidence of ‘health tourism.’ Health Protection Agency figures suggest an average of five years between arrival in the UK and an HIV diagnosis.

Diminished service for asylum seekers

According to Sarah Radcliffe, writing in ‘Migration Pulse’ (2013) “Universal primary care systems are vital for individual and public health,” and ensuring asylum seekers gain access should be a prime aim of government policy. It is also vital that all public and health systems appreciate the lived experience of illness and disease, and how they are constructed by different cultures.

The proposed immigration bill, currently under discussion in the UK parliament, threatens to further diminish asylum seekers’ limited health service access.

The overall health situation for people seeking asylum is set to get far worse if the government’s proposals to introduce charging for primary and emergency healthcare for anybody who does not have indefinite leave to remain in the UK are implemented,” says Estelle Worthington.

In the context of HIV, though testing and treatment remain free, charging for other conditions may deter asylum seekers and refugees wanting to consult a GP about a possible HIV-related issue.

For asylum seekers, perhaps the worst thing is being alone – away from their country, extended family, and culture. Ensuring access to health care will address at least one of their concerns, at the same time enhancing personal and public health. Sounds good to me.

Ian Hodgson

Sources:

BBC (2013). Outrage as Swiss move to segregate asylum-seekers. Online at: http://www.bbc.co.uk/news/world-europe-23599502

European Commission – Eurostat (2013): Citizenships of EU Asylum Applicants. Online at: http://epp.eurostat.ec.europa.eu/statistics_explained/index.php/Asylum_statistics

Health Protection Agency (2011). Migrant Health: Infectious diseases in non-UK born populations in the UK. London: HPA

Migration Pulse (2013). Five points which must not be lost in the debate on NHS access. Migration Pulse, 2nd July. Available online at: www.migrantsrights.org.uk/migration-pulse/2013/five-points-which-must-not-be-lost-debate-nhs-access

Orton, L., Griffiths, J., Green, M. & Waterman, H. (2012). Resilience among asylum seekers living with HIV. BMC Public Health, 12, 926.

Ian Hodgson is a member of the Key Correspondents network which focuses on marginalised groups affected by HIV, to report the health and human rights stories that matter to them. The network is supported by the International HIV/AIDS Alliance.

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April 16, 2014

MACMILLAN CANCER SUPPORT RESPONDS TO NEW KIDNEY CANCER SURVIVAL RATES

Macmillan Cancer Support responds to a new report out today by Public Health England’s National Cancer Intelligence Network (NCIN) which shows that kidney cancer survival has improved in the last 20 years1. Professor Jane Maher, Joint Chief Medical Officer at Macmillan Cancer Support, says:

 “It is great news that more people than ever are surviving kidney cancer. But it is important to remember that many cancer survivors continue to suffer consequences of their disease and its treatment such as chronic fatigue, depression and pain.

“Cancer survivors must be properly supported once their treatment stops to help their recovery and minimise the impact of their illness on their overall health. Macmillan wants every survivor to receive a cancer ‘recovery package’ – comprising of an aftercare plan, a summary of their treatment and access to Health and Wellbeing Clinics – as a standard part of aftercare.

“Whilst survival rates for kidney cancer have improved significantly in the last 20 years, sadly this is not the case for all cancers. We need to address the fact that your chances of surviving lung and pancreatic cancer in this country remain relatively low as a matter of urgency.”

1NCIN’s ‘Kidney Cancer Survival Report’ is available upon request from the Public Health England Press Office. Tel: 020 7654 8400 Email: phe-pressoffice@phe.gov.uk

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April 15, 2014

Patients as researchers – Swansea team commended for involving patients in emergency care research

Emergency admissions to hospital are expensive to the NHS and very distressing for patients and their families, with around 350,000 cases in Wales last year.   Now a Swansea University-led research team, which focuses on improving emergency care, has been commended for its work involving the public in research, winning an award from the National Institute for Health and Social Care Research.   

The team forms part of the TRUST (Thematic Research for emergency, UnScheduled and Trauma care) network, led by Professor Helen Snooks of the College of Medicine at Swansea University.  TRUST has developed considerable expertise in involving the public in research.  For example it has produced the first published guidance for involving service users in clinical trials.

The team aims to get people involved in the whole research process because they bring experience of using services as patients or carers, to complement academic and clinical expertise. This involvement is different from patients who are research participants and provide data to be included in the results of a research study.

Research into emergency care is particularly important in Wales, which has the highest proportion of older people in the UK.   Older people are the most likely to be admitted to hospital as an emergency.  Many admissions are for people with long-term chronic conditions:

•           45%                 of all hospital admissions in Wales are emergencies

•           23,000             emergency admissions (2011/12) for diabetes, heart disease

•           One-third       adults in Wales with a chronic condition –highest in UK

•           £1750              average weekly cost of a bed in hospital.

People who are involved in carrying out research get involved in the following ways:

•    Designing a research project

•    Sharing in decisions at key stages of carrying out high quality research

•    Advising on layout and clarity of research tools (eg websites,  questionnaires, interview scripts)

•    Analysing results, offering different insights compared to a researcher

•    Disseminating findings, including into outlets where key groups can see them, such as newsletters

•    Taking part in meetings as a member of the research team and speaking at conferences

People often require training and support to be able to carry out these roles, which is why the Swansea team runs a network called SUCCESS, which is a pool of people with different conditions, such as diabetes heart disease or arthritis, who use health services. SUCCESS stands for Service Users with Chronic Conditions Encouraging Sensible Solutions.

The team train members of the SUCCESS network, equipping them with the skills they need to work effectively as part of the research teams.   Between them, network members have worked on around 40 different research studies.

Comments from network members:

“We are hugely motivated with a strong desire to make things better – we are not to be ignored” 

“We’re all treated as equals – we’re not just the token older person”

Lead researcher Bridie Evans, of the College of Medicine at Swansea University, explained the benefits of involving service users in research:

“It ensures that research projects take account of the patient perspective, and that projects are as relevant to patients as possible.  It brings real experience into the research process.

The quality of the research is definitely better when service users work alongside researchers – we say that it’s better done together”

Angela Martin from NISCHR, Lead for Public Involvement and Engagement and contract manager for the TRUST network, said:

“TRUST has been an exemplar of public involvement.  They have consistently involved service users in developing and undertaking research. 

As NISCHR looks to the future, lessons learned and examples from the work of TRUST will be used to inform future developments.”

 

 

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April 13, 2014

Implementation of the working time directive has had an adverse impact on training in the UK, taskforce says

An independent task force commissioned by the government last year to review concerns about the impact of the working time directive on doctors’ learning and patient care in the UK, has reported adverse effects on training in certain specialities including surgery and acute medicine.

The working time directive was fully incorporated in the NHS in 2009 and means that trainee doctors can work for a maximum of 48 hours a week across a six month period.

Although the directive has helped to prevent doctors from working very long hours, the taskforce reported that in certain specialities doctors voluntarily worked longer hours to gain the skills they needed.

Of the several recommendations made by the taskforce one is that more consideration should be given to encourage wider use of the right of individual doctors to opt out of the current restricted hours.

Norman William, president of the Royal College of Surgeons and chair of the taskforce, said that it was important to understand that the directive affected different specialities in different ways. He said, ” The inflexibility of the directive is having deleterious effects on training and patient care in some specialities on the wards.”

BMJ2014;348:g2599

 

 

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April 10, 2014

Bliss launches review of 2013

In the UK 80,000 babies are born too soon too small and too sick each year. For over 35 years Bliss has been the leading charity, providing information, advice and support to families with babies in neonatal care.

The review of 2013 video features some of the charity’s highlights and successes of the year as well as looking forward to what Bliss is aiming to achieve in the years to come.

After the launch of the Bliss Nurses programme in 2011, the video highlights how this has and continues to make an impact to families across the UK. Bliss Nurses are now present in four neonatal networks, with the aim of having a Bliss Nurse in all 28 neonatal networks by 2020.  Bliss Nurses provide parents with practical advice, emotional support and guidance to help them come to terms with the situation and to make well-informed decisions for their child. They play a pivotal role in the involvement of parents in their child’s daily care, which is highly likely to positively affect the long-term health outcomes of that child.

The Bliss Baby Charter was designed to ensure the rights of every baby are respected, and gives staff an opportunity to measure themselves up against the best practice across different aspects of neonatal care.  The Bliss Baby Charter launched has helped neonatal units across the country to ensure that they provide the highest quality care, with over half of units taking part. Helping units to empower parents, to feel that alongside their baby’s healthcare providers they too have a central role in their baby’s care: over 40,000 families have received better care thanks to the Bliss Baby Charter.

You can view Bliss’ annual review video here: www.bliss.org.uk/2013review

To find out more about how you can get involved with Bliss to improve neonatal care through the Bliss Baby Charter at bliss.org.uk/improving-care/babycharter

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