Guide to HIV Healthcare Confidentiality

posted: 15/12/2010

A new guide for people living with HIV explains your rights to confidentiality in healthcare and what you can expect. The guide, Personal information and the NHS, goes through common concerns people living with HIV have about how the NHS treats the privacy of information about HIV status.

It explains how personal information will be handled, and gives practical advice about what to do if people have any concerns.

Know the facts and take action

This guide helps people with HIV understand confidentiality and privacy rights. It encourages people to ask questions and make concerns known, which NAT hopes will help improve things for everyone. If a person with HIV feels that their personal information has been mishandled, armed with the facts in this guide, they can take action.

Confidentiality is protected in the NHS in the following ways:

• NHS staff should not talk about someone to anyone else either inside or outside the NHS without the patient’s consent; this includes talking to family members and friends of the patient
• NHS staff should not leave names visible anywhere. They should therefore cover up names on paper files or close computer screens and electronic medical records
• All paper records should be kept in a secure place and all computerised records should have electronic protection, such as secure logins and passwords.

Deborah Jack, Chief Executive of NAT (National AIDS Trust), told us:

‘Many people living with HIV have experienced concerns relating to confidentiality of their status and in healthcare this is especially important. In order to receive the best healthcare, sometimes this does mean sharing your personal information but people living with HIV should be able to do that and feel confident that their information will only be shared appropriately and with their consent. NAT has developed this guide in order to set out the basic principles of confidentiality within the NHS, as it can be a confusing area and many people do not fully understand what the rules – or their rights – are.’

guide: Personal information and the NHS is here
 

NAT's policy report Confidentiality in healthcare for people living with HIV provides useful background 

Health Quango Cuts and HIV

posted: 27/07/2010

Eighteen health quangos will be cut to between eight and 10 over the next four years. The Health Protection Agency (HPA), which deals with HIV and infectious diseases, is one that will disappear within the next two years.
 

The Health Secretary Andrew Lansley justifies the quango cuts on the grounds that it would produce savings of more than £180m over the next four years by streamlining their functions and cutting their bureaucracy. Although the Department of Health's overall budget is being "ring-fenced", the growing demands on the NHS each year mean that significant savings need to be found.
 

Expert Criticism

Experts in infectious diseases criticised the plan to abolish the HPA as a statutory organisation and transfer its functions to the Secretary of State’s new Public Health Service. "It's a very bad idea because the HPA is an absolutely essential national resource," said Hugh Pennington, emeritus professor of bacteriology at Aberdeen University. "There is no merit in making changes to the HPA other than those that strengthen it. It's quasi-independent and a degree of separation between it and the rest of government gives it more scientific freedom and independence," Professor Pennington said.
 

The HPA plays an important role in monitoring and preventing HIV and other sexually transmitted infections in the UK. At the recent International Conference in Vienna it presented important research results and recommendations. Transfering its work to the Secretary of State’s new Public Health Service means its valuable independence disappears.

NAT concern

Deborah Jack, Chief Executive of NAT (National AIDS Trust) wrote to the Independent to say "We read with concern of the Government's plans to abolish the Health Protection Agency and merge it within a new Public Health Service directly accountable to the Secretary of State. As the UK's HIV policy organisation, for years we have benefited from the HPA's surveillance of HIV and other sexually transmitted infections. This information is vital in assessing the needs of the population and allowing effective targeting of resources, more important than ever in the present climate. We call on the Government to promise that public health surveillance and analysis will remain independent of ministerial interference to ensure impartiality, and that there is no deterioration in the quality and scope of the HPA's key public health functions, so essential to an evidence-based response to HIV."

The HPA in the Department's Quango Review

Here is what the Department of Health Review reports says about abolishing the HPA and setting up a Public Health Service within the Department of Health under the Secretary of State.
 

"3.42 We propose to support the cross-government public health strategy through the creation of a new Public Health Service directly accountable to the Secretary of State, to integrate and streamline existing health improvement and protection bodies and functions, with an increased emphasis on research, analysis and evaluation. As a part of that development we intend to abolish the Health Protection Agency and the National Treatment Agency for Substance Misuse as statutory organisations and transfer their functions to the Secretary of State as part of the Public Health Service.
[3.43 a paragraph about absorbing the National Treatment Agency for Substance Misuse into the Public Health Service.]
 

3.44 Our programme for public health will be set out later this year and more detail on what it means for these two organisations, and dedicated public health ring-fenced funding to support delivery of local services, will be set out in the context of the new Public Health Service. We will engage with the Health Protection Agency and the National Treatment Agency for Substance Misuse to ensure a smooth and orderly transition.
....

Legislative Changes
5.7 Many of the changes outlined in this document will require primary and secondary legislation. The Queen’s speech included a major Health Bill and a Public Bodies Bill for the first legislative programme. The Government will introduce these bills this autumn and the changes, where appropriate, will be enacted through one of these bills: our intention is that the majority of changes will be in place during 2012/13.
.....

The Public Health Service will in place by April 2012. (Annex C)"
 

NAT letter of concern to The Independent   

DH Arms Length Body Review report

Source

Department of Health press release

Working Life and New Rights

posted: 05/05/2010

The Equalities Act squeezed through Parliament just before the election. In October it will be law that you can use. What difference might it make to the world of work for people with HIV?
 

What’s new? 
In work situations the main new disability rights are:

• A ban on most health related questions until after a job offer is made - so asking if you have HIV or details of any health problems and absences will be barred - until they have offered the job. There are some exemptions- for example they will be able to ask if you require any adjustments to be able to carry out a task during your job selection / interview, or to ask if you are a ‘disabled person’ on a simple equality monitoring form.
• Introduction of ‘protected characteristics’ – ‘disability ‘ is one of these . Protected characteristics are the groups and situations where people have legal protection from discrimination. Protected from discrimination are people with disabilities (this includes everyone with HIV), sexuality, gender, race, age, gender reassignment, marriage and civil partnership, pregnancy and maternity, race, and religion or belief.
• Discrimination by Association. This protects people from discrimination when they are associated with a person with protected characteristics – eg the HIV negative / untested partner of someone with HIV will also be protected. So refusing a job to a HIV negative (or untested) gay man for fear that he might have HIV and need time off work, would be illegal disability discrimination.
• Discrimination by Perception. Someone may mistakenly believe you are a disabled person and discriminate against you because of this. This is now illegal too.
• Combined Discrimination. People can now claim direct discrimination for up to 2 protected characteristics – so you could claim discrimination both about HIV and race, or HIV and gender, or HIV and sexuality – or any other combination. 
• Detriment Arising from Disability. This gives back the legal right not to face ‘less favourable treatment’ – court decisions made this difficult to win. For example sacking someone for taking reasonable time off for a HIV clinic appointment is wrong – it is an impairment-related absence. The employer would have to prove the dismissal was a proportionate means of achieving a legitimate aim.
• Duty to make reasonable adjustments – this is now a little better - employers now have to provide auxiliary aids or services to remove any disadvantage the person experiences.
• There’s a broader definition of disability to include more people, but everyone with HIV is already protected as ‘ disabled.’ This therefore helps some people who don’t have HIV. People now only have to show that any impairment they may have has a “substantial and long term effect on a person’s ability to carry out normal day-to-day activities”.

More Information

For more background, and for an easy read summary of the Act, visit the Equalities Office website

Eversheds (they are lawyers) Guide to the Act for Employers
Equality and Human Rights Commission:
HR Magazine article

Source - Breakthrough UK

HIV - New Rights

posted: 08/04/2010

The new Equality Act gives some useful new rights for people living with or affected by HIV. The Act just squeezed through Parliament in time before the election.
 

Pre-Employment Health Questionnaires - banned
The Equality Act, which will come into effect in October, bans employers from using health questionnaires before you are offered a job. Until now, employers could ask job applicants whether they have a disability, are taking medication, or have a medical condition – even if it these make no difference to whether you can do the job. The legal ban on pre-employment medical questionnaires will make it easier for people living with HIV to get back into work or to change jobs.
 

Associative discrimination - banned
The Act also protects from discrimination people who are thought to be, or are associated with, someone who is living with HIV. So partners, family, or friends of someone with HIV can also make claims for disability discrimination if they face HIV-related discrimination because of their contact with someone with HIV. And groups most affected by HIV, such as gay and bisexual men, will also be able to complain if they experience discrimination because they are thought to have HIV.
 

Multiple Discriminations - banned
Dual discrimination will also be recognised for the first time; many people experience discrimination based on their HIV status and sexual orientation and/or ethnicity. People will now be able make claims for each of these reasons rather than be limited to just making a complaint based on one type of discrimination.
 

Deborah Jack, Chief Executive of NAT, commented “We are delighted that the Equality Bill has made it onto the statute books. NAT has actively campaigned for the Bill to include real benefits for people living with HIV. We have succeeded in making sure people living with HIV will no longer have to fear being asked to disclose their status when applying for a job.
We are also pleased that the Act outlaws discrimination based on perception or association and dual discrimination. These new protections secured in the Equality Act are an important step towards a society free from HIV-related prejudice and discrimination.”

For a full summary of the Equality Act and the employment and other reforms that will be law from October see: http://www.equalities.gov.uk/equality_bill.aspx

Protection Gaps for Migrant Women

posted: 11/05/2009

The HIV Immigration Project has produced a useful report highlighting the gaps in protection women migrants with HIV still face. The Project brought together three organisations, Positively Women, Asylum Aid, and the International Community of Women living with HIV/AIDS (ICW).

Throughout the Project the case of N v the Home Secretary was going through the courts. This case decided when removing a person living with HIV was a breach of human rights because appropriate treatment would not be available or accessible in their country of origin. The numerous court decisions in this case, as it went all the way to the European Court of Human Rights, has caused a clear protection gap for women living with HIV to appear.

Protection gaps for HIV+ migrant women
To tackle the protection gap the Project asked ICW to find out about treatment and discrimination in women’s countries of origin, and to offer one-to-one advice. Asylum Aid looked for other ways to obtain protection through legal avenues.

In one case [CA v Home Secretary] the Appeal Court ruled that removing a mother living with HIV to her country of origin, where her child would become infected fatally through feeding, was the sort of inhuman treatment prohibited by Article 3 of the European Convention on Human Rights (ECHR). This led the way for other similar cases where the mother is forced to contribute to and observe the avoidable death of her child.

New ways to improve the immigration situation of some women living with HIV were identified by Asylum Aid. They include:

• Women whose children were HIV positive;
• Women who are HIV positive and where there is no treatment for the woman on return and the HIV negative child could be left orphaned with no one to look after them;
• Women who were granted Exceptional Leave to Remain (ELR), or Discretionary Leave (DL), or Humanitarian Protection (HP), on the grounds of their health prior to the decision in N., particularly if they have been in the UK for some time and have been receiving treatment;
• Women from Zimbabwe (and possibly other countries) who would be discriminated against in treatment, because of their actual or assumed political opinions
• Under Immigration Rule 395C, all women living with HIV who do not have leave to enter or remain will be able to make representations citing their compassionate circumstances, before they are removed, and these will have to be considered before their removal.

Recent developments in case law on Article 8 of the ECHR also provide greater protection against removal for women who have established families in the UK. Applications on these lines will depend upon the facts of each case.

Most women left unprotected against removal

However, the protection gap since the case of N decision still means that the most women living with HIV now have no right to be protected from removal from the UK simply because of HIV. These women will continue to live without formal immigration status in the UK with all the many problems this causes, or they may have to return to countries where the provision of life-prolonging treatments are less effective, not available, or only available at great cost.

‘A positive partnership: The HIV Immigration Project 2003-2009
a joint project by Positively Women, Asylum Aid and International Community of Women living with HIV/AIDS’