Here you’ll find a host of information about your rights as a person living with HIV and what you can do if you think you might have faced discrimination.
If you have experienced discrimination and need more support, click here.
What are my rights?
Discrimination and the law
Under section 4 the Equality Act, it is illegal to discriminate against people with certain ‘protected characteristics’. This applies within consumer services (such as shops, hotels and leisure facilities), health services (including doctors’ surgeries, hospitals, dental surgeries), employment, and public services (like local council services, transport and housing associations).
‘Disability’ is one of these protected characteristics. Schedule 1 of the Act states that all people living with HIV are considered to have a disability.
If an organisation knows, or should know, that you are living with HIV, it is illegal to discriminate against you. You also have the right to make requests to organisations to ensure you are not disadvantaged because of your HIV status.
If you have been discriminated against in your place of work, you have three months minus one day to make a claim. If you have experienced any other type of discrimination, you have six months minus one day to make a claim.
Data protection and the law
The law regulating personal data in the UK is the UK General Data Protection Regulation (UKGDPR). Under the UK GDPR, your HIV status is ‘special category data’. This means there are additional protections in place when storing or sharing this information. You can read more about special category data here.
If your personal data has been shared without your consent, you have six years to make a claim under the UK GDPR, unless it is a public body, in which case you just have one year.
If you wish to make a claim under the Human Rights Act (about a breach of your right to privacy), you have one year minus a day to make a claim.
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What is discrimination?
There are different types of discrimination in the Equality Act. Sometimes a situation may include more than one type of discrimination. It is important to seek legal advice to identify whether you have been discriminated against.
Direct discrimination: when you are treated worse than someone else because of your HIV status.
Indirect discrimination: when there is a policy, rule or practice which applies to everyone in the same way but has a worse effect on you because of your HIV.
Discrimination arising from a disability: when you are treated worse due to something connected to your HIV, rather than your HIV itself.
Harassment: behaviour that violates someone’s dignity, or creates an intimidating, hostile or offensive environment.
Victimisation: when someone treats you worse because have made or supported a claim of discrimination.
Failure to make reasonable adjustments: Refusing to make reasonable adjustments to remove disadvantages you face due to your HIV is unlawful. You can read more about reasonable adjustments here.
Public sector equality duty: public bodies, such as local authorities and police, are obliged to prevent discrimination.
Discrimination by perception: when someone thinks you are living with HIV, when you are not, and treats you poorly as a result
Discrimination by association: when you are treated poorly by being associated with someone living with HIV
You can read the Equality Act here.
I am experiencing discrimination. What can I do?
You can seek legal advice, by:
- Contacting our Discrimination Caseworker
- Contacting ACAS (if it is an employment dispute)
- Contacting Citizens Advice
- Contacting Law Centres Network
Keep evidence, which may include:
- What happened (including dates and times)
- How it made you feel
- Any evidence
- Any witnesses
Raise the issue informally with the relevant person at the organisation.
Bring a formal complaint/grievance. If you do not know how to do this, you can ask the organisation for their formal complaint/grievance process. In work, you can be accompanied by a trusted co-worker or a representative of a trade union at grievance meetings.
Contact the ACAS Early Conciliation Service if the issue is with your employer, to try and resolve the dispute or get a certificate to make a claim here.
Report the behaviour to the relevant regulator, if applicable (such as the Information Commissioner’s Office (ICO), for data protection).
Bring a court case: within six months minus a day of the last act of discrimination, or three months minus a day from the last act of discrimination in work.
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What are my rights in the workplace?
People living with HIV are protected against discrimination at work under the Equality Act, as long as the employer knows, or should be aware, that they are living with HIV.
You have the right to request reasonable adjustments, such as time off for appointments, working a more flexible week or taking medication at work. These adjustments should allow you to fulfil your role and manage your HIV. Your employer has a legal obligation to allow these, as long as they are ‘reasonable’.
Whether an adjustment is considered ‘reasonable’ depends on several factors: affordability, effectiveness, practicality and possible risk to others. Requests may be reasonable in one workplace, but not another.
When making a reasonable adjustment request, it is a good idea to explain how you believe your request is ‘reasonable’.
If you have been discriminated against by your employer, you have just three months minus a day to bring a legal claim.
Before making a legal claim of discrimination, you need to contact ACAS – an organisation which provides free and impartial advice on workplace rights and dispute resolution. They give you a certificate to make a legal claim. They can also extend the three month minus a day time limit for up to six weeks.
Useful advice and templates can be found on ACAS’ website.
In most jobs, you are not obliged to share your status with your employer: it is personal private data, protected by law. There are some exceptions to this, such as if you work in the army or in some healthcare settings.
It is unlawful for an employer to ask you about a disability or health condition before offering you a job. It is also unlawful to retract an employment offer on the basis of your HIV status.
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I am experiencing harassment
Unwanted messages about your HIV or threats to reveal your status from an organisation, might be considered harassment under the Equality Act. You should report such behaviour to the police.
If the organisation is your place of work, you should use your employer’s formal grievance procedure. You could also make a claim to the Employment Tribunal within three months minus a day of the harassment.
Other options may include obtaining a legal injunction or making a claim for misuse of private information.
If you are experiencing harassment due to your HIV status, please contact our Discrimination Caseworker.
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What about my health data?
According to the UK GDPR, any data collected must be for a specific purpose, limited to what is necessary and relevant, stored securely and kept for a specific period of time.
A person’s HIV status is considered ‘special category data’, which has stricter rules.
Your status is also protected from unlawful sharing by public authorities under the Human Rights Act 1998.
HIV status in healthcare settings
Your HIV status is also protected in healthcare settings.
Sexual health clinics should never share your data with your GP without your consent.
In some situations, GPs may share medical information where requested, such as by an employer. A patient is entitled to review this information and refuse to consent to it being shared.
There are circumstances where your HIV status and other medical information may be shared without your consent with healthcare workers involved in your care, or when you are referred to a different service. This exception is legal if it reasonable to expect you to consent to the information being shared for your care. It is known as ‘implied consent’.
Implied consent is only legal when:
- You have not objected to this data being shared
- There is information available which shows illustrates how your data may be used and your rights to object
- This information is shared with the understanding that it is to be received in confidence and not shared beyond what is necessary
There are situations where healthcare providers share medical information beyond the parameters of ‘implied consent’. If you believe a provider has shared medical information beyond these parameters, you should seek legal advice and follow the steps outlined below.
In rare situations, a GP is allowed to breach confidentiality: if the information is requested by a court or police, or if a doctor is concerned that a patient is putting others at risk.
When sharing your HIV information with healthcare professionals, it is good to identify that it is special category data and shouldn’t be shared without your consent.
I have experienced a data breach. What can I do?
Seek legal advice, by:
- Contacting our Discrimination Caseworker
- Contacting ACAS (if it is an employment dispute)
- Contacting Citizens Advice
- Contacting Law Centres Network
- Contacting your trade union (if it is an employment data breach)
Keep evidence, which may include:
- What happened (including dates and times)
- How it made you feel
- Any evidence
- Any witnesses
Make a ‘Subject Access Request’ for your full record (read how here)
Raise the issue formally with the organisation
You can raise a complaint with the organisation. You should ask for policies specific to that organisation for challenging situations where data has been shared. You can identify that HIV information is special category data and is protected by law. You could ask the organisation to justify the decision to share this information with reference to the UK GDPR.
Contact the Information Commissioner’s Office (ICO)
The ICO can investigate the issue, identify whether there has been a breach and make recommendations. The ICO does not provide compensations to individuals.
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I want to take legal action
There are strict time limits to bringing a legal claim. If you have been discriminated against, you have three months minus a day to make a claim for employment discrimination, or six months minus a day to make a claim for other types of discrimination. If your personal data has been shared without your consent, you have six years to make a legal claim, or one year, if the claim is against a public body or if you are bringing a claim under the Human Rights Act.
Before making a legal claim, you should try to resolve the situation directly with the organisation first. You can do this through a formal complaint/ grievance, or by using ACAS’ early conciliation service (if the dispute relates to employment).
If this doesn’t resolve the situation, it is important that you speak with a lawyer. They can advise you on whether it is worth making a legal claim. If you proceed, it is advisable to have a lawyer (solicitor) supporting you to make your claim.
You can find some useful advice on how to find a lawyer here.
There are several funding options:
Legal aid:
- Funding for legal costs that is available for cases relating to discrimination and some data protection claims. Check if you qualify .
No win no fee:
- This is an arrangement offered by many law firms. You do not pay legal fees, but if you win and get compensation, your lawyer will get a portion of this compensation.
Insurance policies:
- Your insurance policy may cover legal expenses.
Private funding:
- If you have the funds, you may choose to pay a lawyer in full to represent you.
If you lose your case, you may be required to pay the other party’s legal costs, and if you win, you can request that they pay yours.
Get further legal advice from:
- Our Discrimination Caseworker
- ACAS here (if it is an employment dispute)
- Citizens Advice here
- Law Centres Network here
- Your trade union (if it is an employment dispute)
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