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Toolkit for Trade Unions

Toolkits for Employers, Trades Unions and Positive People
The following Toolkits for Employers, Trades Unions and Positive People were originally produced by the Ensuring Positive Futures (EPF) employability programme for people living with HIV in the UK. EPF was funded through Equal (a European Social Fund initiative which operated from 2002 to 2007) and run by a partnership of organisations including HIV charities, businesses, government bodies and trades unions working together to support people living with HIV in the workplace.

Now the programme has finished, HIVsport has agreed to re-publish updated versions in order that the information and guidance may continue to be of benefit to others. HIVsport would like to acknowledge the six core HIV charities (National AIDS Trust, Oasis North London, Positive East, Positively Women, Terrence Higgins Trust and UK Coalition of People Living with HIV and AIDS) that contributed to the development of these Toolkits during the lifetime of the programme. Particular acknowledgment is given to Michael Laffan for creating the original documents. 

Toolkit for Trade Unions

Welcome to the Toolkit for Trade Unions. As a Trade Union you will no doubt be familiar about issues concerning racial and sexual discrimination in the workplace and dealing with matters around unfair dismissal and representing your members in all kinds of disputes.  But would you know what to do if one of your members had problems with employment because of their HIV status? Are you sure how a trade union should deal with HIV related issues, or if the workplace in which you represent the workforce has an HIV workplace policy?

The majority of people living with HIV in the UK are of working age; it might surprise you to know that 72% of people newly diagnosed with HIV in the UK are between the ages of 15 and 39 (source: Health Protection Agency).  Therefore it is highly probable that one of your members could be directly or indirectly affected by HIV.

Some Trade Unionists have been reluctant about tackling the issues concerning HIV or they feel that HIV is no longer an important issue.

However, it still is an area where there are many concerns and discrimination and unfair dismissals are still occurring despite recent amendments to the Disability Discrimination Act in which the DDA was extended to protect people living with HIV from the point of diagnosis.

This means that people living with HIV are protected from discrimination at work and can safely ask for ‘reasonable adjustments’ if they need them.

What can you do as a Trade Union rep?

  • Make sure that your employer is committed to equal treatment for people with HIV
  • Ensure that staff are provided with adequate training and information on HIV issues and that your members are aware of this
  • Actively promote your commitment as a branch to supporting any members facing discrimination or harassment
  • Re-examine existing policies or agreements to ensure they reflect the needs of people affected by HIV

How to use this Toolkit 
This toolkit will give you the guidance and resources you will need to help you safeguard the rights of your members and to negotiate workplace policies around HIV as well as direct you to support and training resources available to you as a Trade Union.

Why is it important for trade unions to understand the issues around HIV in the workplace?

Since December 2005, HIV has been covered under the Disability Discrimination Act from the point of diagnosis. As a trade union you may be called upon to support a member who is living with HIV. This toolkit will help you understand what you need to know about HIV and the Disability Discrimination Act (Section 1). This means that people living with HIV can’t be harassed or discriminated against in recruitment, employment terms and conditions, chances for promotion, transfer, training or other benefits.

You may wish to negotiate an HIV policy with the employer or incorporate HIV into an existing Disability policy. Negotiating an HIV Policy (Section 2) guides you through the essential features of a policy, focussing on non-discrimination and confidentiality.

The section on Support for Members Living with HIV (Section 3) will help you give the right type of advice in the right way to members who may be feeling vulnerable. HIV is still a sensitive issue and this section will give you some pointers on how best to proceed.

Far too many people living with HIV feel stigmatised because of society’s attitudes towards the virus. This can, in turn lead to greater fear and hatred of groups often associated with HIV such as gay men or African women. In Dealing with Discrimination (Section 4) we show how you can tackle these problems and secure a more supportive working environment for people living with HIV.

Leaving and Returning to Work (Section 5) provides some guidance on how people living with HIV, who sometimes need to take time off work for health reasons, can best be advised on their rights in respect of employment and the recruiting process, such as answering medical questionnaires.

The remaining section in this Toolkit for Employers will be useful if you are interested in Educating your Reps, Full-time Officer and Members (Section 6) about HIV awareness as a way to challenge HIV related stigma and discrimination and ensuring the workplace is a safe, happy and productive environment for all workers.

Section 1 HIV and the Disability Discrimination Act

From December 2005 the DDA was extended to protect people living with HIV, from the point of diagnosis. This means that people living with HIV are protected from discrimination at work and can safely ask for ‘reasonable adjustments’ if they need them.

Branch members being diagnosed as HIV positive may initially require more support from both you as a Trade Union representative and require advice/help in accessing outside support services.  It is therefore important that you as a Branch representative understand how the Disability Discrimination Act applies to HIV in the workplace.

What are reasonable adjustments?
As a Trade Union representative you need to be aware of the types of reasonable   adjustments that can be offered by an employer to any members diagnosed with HIV.

These can be from simply providing a cushion to sit on to adjusting working hours. As the DDA requires an employer to make these reasonable adjustments, it is important that Branch reps use this provision to assist members with HIV.

Reasonable adjustments:
Under the DDA people living with HIV are entitled to ask for reasonable adjustments to make in their working conditions. Often this could be something simple such as arranging flexible working hours to allow for hospital appointments

The side effects of starting medication can be more acute in the early stages as the person affected by HIV gets used to the treatment.  So in this is when people need the most support. Taking medication at work will be necessary in some cases, so it might be an idea to negotiate flexible break times, and to ask for a space where people can take their medication in private.

Examples of Reasonable Adjustments include:

  • Providing a rest room
  • Providing a space where staff can take their medication in private
  • A designated fridge for medication
  • Flexible hours for hospital appointments

Ensure that provision for HIV is included in your workplace equal opportunities policy, and that it makes a clear statement in the policy about non-discrimination against people living with HIV.

This should also be reflected in the recruitment processes and policies.

What are some of the issues?
The law has been designed so that the employer has to make reasonable changes, but if they fail to do what is reasonable, an HIV positive person could take legal action against their employers for treating them unfairly.

To address the legal issues there are very few jobs not open to someone living with HIV and these are generally because of invasive procedures for example surgery or midwives.

Disclosure of a person’s HIV status is not a legal requirement and any member who chooses to disclose their HIV status should feel confident that confidentiality around their status is respected as failure to do so will contravene the Data Protection Act 1998.

You could consider negotiating an agreement that members taking time off for treatments or another reason relating to their disability does not count towards disciplinary or inefficiency actions.

The DDA applies to all employers and everyone who provides a service to the public, the only exemption is the Armed Forces.

Section 2 Negotiating an HIV Policy

Negotiating a HIV Workplace Policy
An effective HIV policy is one of the most important tools in supporting people living with HIV in the workplace.

Very often people living with HIV will be cautious about disclosing their status in the workplace. This is because there are still misinformed attitudes surrounding HIV. These can lead to a very real fear of stigma and prejudice.

As a union rep you are in a position to help change this. Discuss HIV with your members, and with their employers.

If a policy is in place before you need it, you will be in a much better position to support any your members affected by HIV.

Why do we need a HIV policy?
Since December 2005 HIV has been covered under the Disability Discrimination Act from the point of diagnosis.

Instead of waiting for HIV to become an issue in the workplace, it’s better if you are more pro-active, and negotiate a suitable policy.

There are also specific issues affecting people living with HIV, and in some cases you may need to negotiate reasonable adjustments under the DDA on behalf of one of your members. Having a HIV policy in place will put you in a position of strength.

If one of your members is newly diagnosed or living with HIV, they may feel more secure knowing there is a policy in place. They may also feel better able to approach you and discuss their HIV status.

Remember HIV has not gone away. It is quite possible you know someone who is living with the virus, and as a rep you are in a unique position to offer support.

Download a sample HIV policy here. PDF format.

Do we need a separate policy?
It is sometimes helpful to have a separate policy, as you can then address the specific needs of people living with HIV. This is especially the case where HIV may be a real issues at the workplace – e.g. in some medical settings.

However, sometimes it might be easier to include HIV as a section on a more general disability policy, thus avoiding having multiple policies. It also helps ‘normalise’ HIV as an issue that should be dealt with in the same way as other long-term conditions.

We would definitely recommend that you include HIV in an equal opportunities statement.

What should we include on a HIV policy?
First of all remember that a HIV policy does not have to be too long and complicated. In fact keeping it short and concise will probably make it more accessible.

What is most important is that you have a clear statement of intent that commits the employer to supporting HIV positive staff.

Whether you have a separate policy, or include it as part of other policy documents, there are some key elements you should include.

Recognition of the need for complete confidentiality or privacy should an employee disclose their HIV status

  1. A commitment to non-discrimination on the grounds of someone’s actual or perceived HIV status.
  2. Your policy should expressly prohibit mandatory HIV testing.
  3. It should also expressly prohibit unnecessary or intrusive questions relating to HIV or any other medical condition on application forms, medical questionnaires or at job interviews.
  4. The policy should recognise the potential need for reasonable adjustments to be made (such as flexible working hours for hospital appointments) as and when they become necessary.
  5. The policy should make a commitment to raising awareness of the facts about HIV, including educational material and information about HIV transmission and Universal Medical Precautions.

Take the time to get it right now, and avoid any pitfalls in the future. 

Section 3 Support for Members Living with HIV

Support for Union Members Affected by HIV
As a union rep it is quite possible that someone living with or affected by HIV will ask you for support.

This could be someone who has been HIV positive for some time, someone who is newly diagnosed with HIV, or someone who is caring for someone living with HIV.

There are many ways you can offer support to someone affected by HIV, but if you are unsure of how to deal with a situation, then contact your branch office for support or contact us for more information.

Assurance of Confidentiality
If someone has disclosed their HIV status then first of all you should assure them that you will not discuss this information with anyone else without their express permission.

Most of the time, there is no reason why an employer should have to be informed.

If an employer is informed of someone’s HIV status, that information must be kept in confidence. Access to that information should be limited to personnel or occupational health departments.

Remember that if an employer breaks this confidentiality, they will probably be in breach of the Data Protection Act.

Medical Reports
Employers do not have the right to know the results of medical examinations.

If an employer requests a medical report, then all the employer needs to know is if the employee is fit to work. Under the Access to Medical Reports Act 1988, an employer must obtain written consent from an employee before applying to the employee’s doctor for a medical report.

An employee has the right to view this report before it is passed to the employer. They also have the right to request amendments to the report.

Most of the time there is no reason to mention HIV. The only exceptions to this are in certain fields of medicine such as Surgery and Midwifery.

HIV-infected health care workers: Guidance on management and patient notification

Raising Awareness of HIV
As a union rep, you can be proactive in raising awareness of HIV. Here are some suggestions as to how you can raise awareness:

  • Negotiate a HIV policy
  • Facilitate HIV awareness training
  • Explain the facts about HIV transmission
  • Distribute posters and leaflets
  • Discuss HIV at union meetings

Why not run an awareness and fundraising event for World Aids Day on the 1st December?

If one of your members is affected by HIV, they might feel more secure if they know they are working in a HIV friendly environment.

Dealing with Harassment
There are still some misinformed attitudes towards people living with HIV. Sometimes these attitudes are fuelled by homophobia or racism.

If someone is being harassed because of actual or perceived HIV status, you must take action immediately. This behaviour will probably be a breach of the Disability Discrimination Act. It will also be a criminal offence under The Criminal Justice and Public Order Act 1994 which created a criminal offence of intentional harassment.

As a union rep it is your duty to protect your members from any form of harassment. You demand that immediate disciplinary action is taken should this happen. Contact your branch for more support.

Educational programmes and awareness training can help prevent harassment from becoming an issue. 

Section 4 Dealing with Discrimination

 As a Trade Union rep you may be called upon to support a member who has been discriminated against because they are living with HIV.

Misinformed attitudes often lead to people living with HIV being unfairly stigmatised because of their health status (or their perceived health status). This can then lead to prejudice and discrimination.

 UNISON, the public sector Trade Union has produced this booklet, to  advise reps on working with members living with HIV.

 Download it from the UNISON website


Sometimes other forms of prejudice including racism or homophobia can accompany HIV discrimination.

If one of your members is in this situation they will need a lot of support. This sort of situation can be extremely stressful, and if not dealt with quickly and effectively, it may have a detrimental effect on the health and well-being of the member you represent.

This information is provided as guidance for you. If you are unsure of how to deal with a situation get in touch with your branch office, or contact us for advice.

Does HIV count as a Disability?
Yes. Under the Disability Discrimination Act 2005, HIV is classed as a disability from the point of diagnosis.

The person you represent may not consider themselves disabled, but this is about the legal definition. So, anyone with a HIV diagnosis is protected under the law, even if they are currently in good health.

The only people not covered by the Disability Discrimination Act 2005 are members of the Armed Forces.

HIV and Disclosure
If one of your members tells you that he or she is HIV positive, you must treat that information with complete confidence.

Very often, there is no reason for an employer to know someone’s HIV status. It must ALWAYS remain an individual’s choice as whether they disclose or not.

If one of your members is considering disclosing their status it's probably worth discussing the advantages and disadvantages with them.

One of the advantages is that you could ask the employer to make reasonable adjustments to take their HIV status into account.

However, as you probably know, not all employers are as sympathetic as they should be. If a person living with HIV chooses to disclose, they may encounter ignorance or prejudice.

It’s often a good idea to get professional advice in these situations.

What counts as discrimination at work?
If an employer treats an employee or job applicant less favourably because they are HIV positive, they will be in breach of the Disability Discrimination Act.

For example, if an employer treats one of your members differently because of a generalised assumption about how HIV would affect their ability to work, they would probably be breaking the law.

Less favourable treatment which arises from ignorance or prejudice about HIV, would also probably count as discrimination.

It is also unlawful for an employer to dismiss one of your members because of HIV or any other disability, or to subject your member to any other detrimental treatment.

Remember that discrimination can occur in loads of different ways. For example, someone might be overlooked for promotion because they are HIV positive. Or, an employer might make incorrect assumptions about how HIV is transmitted and not allow your member to use certain company facilities such as the staff kitchen.

Employers will also be in breach of the Disability Discrimination Act if they harass someone living with HIV, or if they fail to make reasonable adjustments in the workplace.

What counts as harassment at work?
This includes bullying, name-calling or any other behaviour that could humiliate, degrade or embarrass someone living with HIV.

Under the Disability Discrimination Act harassment is a separate offence from discrimination, but obviously the two are related, and harassment can put someone in a situation where they are being discriminated against.

Harassment occurs when someone at work(manager, supervisor or colleague) behaves in such a way that violates the dignity of one of your members or creates an intimidating, hostile, degrading, humiliating or offensive atmosphere for someone living with HIV, or any other disability.

 If this behaviour was designed to intentionally cause offense, the perpetrator will have broken the law. If, however, the perpetrator claims that they did not intend to cause offence, you will have to show that your member suffered because of their behaviour.

If one of your members is being subjected to harassment, it can have a seriously detrimental effect on their self-esteem and general health. 

Section 5 Leaving and Returning to Work

Sometimes those affected by HIV choose to give up work, though these days with new treatments now available this is becoming less common.  As a union representative some of the issues you should consider discussing with any members who are HIV positive are:

  • Suggesting that the member consider asking if they could return to work part-time or to a less stressful job
  • If the member does not wish to do this then the possibility of ill-health retirement could be looked into
  • It is important that members should be encouraged not to resign until all the options available under whatever sickness scheme in operation have been explored
  • What state benefits would they be entitled to if they gave up work

Helping your Members with Pensions

The following advice is general guidance only as to what a member might expect if they choose to give up work
In normal circumstances, payment from the occupational pension scheme is only made when a person reaches retirement age or if a member dies in service.  In the public service pension scheme when a person dies, a lump sum will be paid to their estate.  In the private sector, the lump sum is at the discretion of the trustees, and is usually paid to a nominated beneficiary.

Early Retirement
Most schemes allow for early retirement, with an enhanced pension in the case of ill health.  In exceptional circumstances it is sometimes possible to exchange the whole, or part, of the pension for a cash sum payment.

This option applies only to occupational pension schemes, including the local government pension scheme, and the NHS pension scheme but not personal pensions.

To qualify for early payment of the whole pension as a cash payment, a decision has to be made by the trustees of the pension scheme who have discretion.  Usually they would not consider doing this unless a person has a life expectancy of less than 12 months.

These days it is very rare for a person diagnosed with HIV not to be able to carry on living a full and productive life and pursue a career.  Unless someone is very seriously ill they should be strongly advised against choosing this option in the light of advances in medical treatment.

If someone has decided to give up work and, after taking medical advice, is unlikely to work again, they may be better investigating the possibility of an early retirement pension on the grounds of ill health.

The amount awarded would be dependent on salary, age and length of service.  In most cases, the amount may not be large.  In addition, a member’s entitlement to some welfare benefits would be affected by either a lump sum or a pension.  Early retirement should not be considered before a member has exhausted the provisions of the occupational sick pay scheme and all the options have been looked at.

Get Advice and Support
As a branch representative you may well find this area to be complex and branches are encouraged to contact their regional office for assistance if they have any difficulty, as a decision to retire early requires considerable thought and planning.

It should be emphasised that many members with HIV-related illnesses live for a very long time and should be encouraged to take a long term view of their options when considering any of the above options. 

Section 6 Educating your Reps, Full-time Officer and Members

HIVsport can provide workplace HIV awareness for trade union reps, full-time Officers and members.  Awareness is a key element in challenging HIV related stigma and discrimination and ensuring the workplace is a safe, happy and productive environment for all employees.

How long will the training take?

  • Awareness seminars can be tailored to your requirements.  We suggest a minimum of 1 hour, but ideally a half-day session to give everyone a chance to discuss the issues and concerns.
  • Shorter sessions can be included as part of other diversity/disability programmes.
  • A member of HIVsport can discuss your needs and deliver a format for your union that is tailored to reflect your current organisational priorities.

How much will it cost?
HIVsport does not receive any Government funding and we therefore charge a fee for all awareness seminars/educational services. All fees and costs will be kept to minimum, are fully explained and are individually negotiated depending on the precise nature of your requirements. There will be no ‘hidden’ extras.

Target audience:
Awareness seminars are targeted at trade unions in both the private and public sectors.  They provide invaluable information and guidance to reps and Full-time Officers to become better acquainted with this specialised and sensitive area of trade union workplace practice.

Educating your reps and members about HIV awareness
If you would like to incorporate HIV awareness into your own internal courses on equality/disability issues or as a separate session within the workplace then HIVsport can provide support and resources you will require ensuring that you can deliver your own training around this issue.

Keep In Touch With HIVsport

HIVsport would like to thank
Durex for their support


Durex's vision is that of an HIV-free world.

We have an overriding commitment to sexual health and a strong track record of supporting initiatives to raise awareness of HIV prevention for all.

This is why we are proud to sponsor HIVsport in its effort to promote sexual health in the field of sport.

  Beer Goggles