Toolkit for Positive People
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 Positive People
Welcome to the Toolkit for Positive People. If you are living with HIV you will find loads of useful information on employment issues.
How to use this Toolkit
For most people, the workplace is where you spend the majority of your time. If you are living with HIV, there also comes the challenge of achieving a good balance between your health and your work.
This toolkit provides you with information on how to achieve that balance. But we must stress that this information is not intended as a replacement for professional advice.
Since December 2005, HIV has been covered under the Disability Discrimination Act from the point of diagnosis. This toolkit will help you answer the question What are my rights under the law?
When you are living with HIV it’s hard to know whether you should discuss you status with your employer. It is also hard to know whether you should mention your HIV status on application forms, or medical questionnaires. So we have provided an information guide on disclosure Who do I Tell?
And if you are out of work we provide information on Getting back to work
Other areas in this toolkit cover Information on healthcare workers affected by HIV (Section 4), how to deal with Discrimination at work (Section 5) and suggestions for how to manage Problems with workmates (Section 6).
"I'm HIV positive - so what?"
Lord Smith of Finsbury, former Secretary of State for Culture, Media and Sport.
Section 1 - What are my rights under the law?
If you are living with HIV, you are protected from discrimination or harassment by the Disability Discrimination Act. Also, if employers breach confidentiality in relation to your HIV status, they may be in breach of the Data Protection Act.
This information is not intended as a substitute for professional legal advice, and is only intended as a guide.
HIV in the workplace
Your rights under the law are wide-ranging and complex. You are protected by the Disability Discrimination Act and the Human Rights Act as well as other legislation.
Your employer may not discriminate against you because of your HIV status, neither may they encourage or pressurise any other members of staff, such as your supervisor, to treat you differently.
You are entitled to go to work without being victimised, harassed or bullied because of your HIV status. This includes your managers, supervisors and work colleagues.
You are entitled to expect your employer to make reasonable adjustments to your role or to your workplace to make it easier or more comfortable for you to cope with your job.
Does HIV count as a Disability?
Yes. Under the Disability Discrimination Act, HIV is classed as a disability from the point of diagnosis.
You might not think of yourself as being disabled, but remember that this is about the legal definition, not about how you see yourself.
Even if you are in good health, and you are not displaying any symptoms you are still protected under the law.
Remember, if anyone treats you differently because of your HIV status, they are probably breaking the law.
What if my employer does not know I’m HIV positive?
If you feel the need to tell them, first discuss it with a counsellor or your trade union representative in confidence.
Don’t make a rushed decision to tell your employer, but also be aware that they can’t be expected to make any reasonable adjustments without knowing your status.
For more information see the guidance on disclosure in Who do I tell? (Section 2)
What do you mean by ‘reasonable adjustments’?
“The duty to make a reasonable adjustment arises where a provision, criterion or practice, or physical feature places a disabled person at a substantial disadvantage. Substantial disadvantages are those that are not minor or trivial.” Equality and Human Rights Commission
The Disability Discrimination Act states that discrimination occurs when an employer fails to comply with a duty to make reasonable adjustments because you are HIV positive.
This duty to make reasonable adjustments applies in two ways. Firstly to the actual job you do, and secondly, to the physical environment where you work.
This duty to provide reasonable adjustments extends to applying for jobs, or for promotion as well. For example an employer should look at ways of making the selection and interview process more accessible.
Examples of reasonable adjustments:
- Flexible working hours
- Job sharing
- Flexible breaks
- Time off for hospital appointments
- Access to a quiet area to take medication
- Access to a kitchen to ensure dietary requirements are met
- Desk location near toilet facilities
This is not an exhaustive list, and adjustments would need to be worked out according to your individual needs.
Section 2 - Who do I tell?
It’s often difficult to know whether you should tell anyone you are HIV positive. Remember, once you tell someone, you can’t ever take it back.
You are not legally obliged to tell your employer, but at the same time your employer will not be able to make reasonable adjustments for your HIV status if you do not tell them. Whatever decision you make, think about it very carefully first, and don’t be afraid to seek advice: HIVsport or other HIV organisations will be happy to help!
“Some people refused to work with me. I did face discrimination but I took HIV by the horns. I had very little thrown back in my face. Disclosing was the best thing I’ve ever done.”
PC Andy Hewlett, Metropolitan Police
NB. This information is just intended as guidance, and is not a substitute for professional advice.
Do I have to tell my boss I’m HIV positive?
No, you are under no obligation to tell an employer that you are HIV positive. Very often there is no reason why they should have to know anyway.
However your employers can’t make any allowances for your status unless you tell them. But at the same time you can't guarantee that your employer will be sympathetic towards you, as there is still a lot of ignorance surrounding HIV.
There are some concerns that you should think about before you make any decision to tell your boss about your status.
- Will they keep this information confidential?
- Will they treat you differently than they did before?
- How will your workmates react if they find out?
- Will your employer be prepared to let you take time off for hospital appointments?
If you work for a large organisation there might be an Occupational Health department, and it might be an idea to contact them anonymously (or get a friend to contact them), to see what reaction you get.
Remember that you are protected under the Disability Discrimination Act, 2005 and if you do get a negative reaction because of your status, don’t be afraid to seek legal advice.
What do I say on an application form/medical form?
Many employers will ask questions about your health during the application process. The wording of these questions may vary. Think about it carefully before you disclose your status.
Remember: it’s your choice whether or not to disclose your HIV status. There are advantages and disadvantages whichever choice you make.
Unfortunately, not all employers are as sympathetic as they should be, and it’s probably best to exercise caution, and to seek advice.
Some people find it best not to mention your HIV status on an application form, but to wait until you have moved further along the application process before you make the decision to tell anyone.
We would advise you against being directly untruthful on an application form or medical questionnaire, but this often depends on the exact wording of the question.
I’m at college, should I tell my tutor?
Most colleges and universities have a disability officer. Before you make any decision to tell your tutor, first discuss your options with the disability officer, who should keep anything you tell them in strictest confidence. Often it will help to have the support of a disability officer when you are under pressure at college.
Remember that you don’t have to tell anyone if you don’t want to, but look at your options carefully before telling anyone.
I’m in the police force; do I have to tell anyone?
No, you are not obliged to tell anyone. Under the law, you are protected by the Disability Discrimination Act, 2005, just like anyone else.
Not all police forces have a specific HIV policy, but the Metropolitan Police Service has a comprehensive policy that ensures your complete confidentiality should you choose to disclose your status.
Section 3 - Getting back into work
If you are living with HIV, you may face certain difficulties in applying for jobs. If you’ve taken time off work, you might need some support in applying for jobs. Many local councils and further education colleges also have careers advice centres.
This information is intended as a guide, and should not be used as a substitute for professional advice.
I’ve been off work for some time, and I want to develop a new career, where do I start?
It often happens that people living with HIV take some time off work to deal with their diagnosis or with health issues. This can make it hard to return to the workplace.
Start by assessing your personal skills and qualities, and ask yourself what sort of job you would enjoy and talk to a career advisor.
It may be necessary to update your skills with a training course, or to learn some completely new skills.
To gain experience of the workplace, you could think about volunteering, or going on a work placement.
I’ve been off work for some time; how can I fill a gap on my CV?
If you’ve been off work for some time, there might be gaps on your CV. This is something you will have to deal with when you are applying for jobs.
Think about what you have done in your time away from the workplace.
How difficult a period of absence is to explain may depend upon how long you have been out of work. Employers may not be so curious about an absence of 2 years which could be explained away as time out from the workplace, time with family, having a break to consider choices, or pursuing personal interests. However, difficulties may arise when the absence becomes more substantial.
What is required here is for you to look at what you have done during that time, and present it to a potential employer in a way that they will understand in terms of what you can offer them. Remember, employers are interested in what you can do for them.
If you can’t account for your time, then it might be an idea to gain experience through voluntary work, or by doing a work placement. Contact a careers adviser for more in-depth guidance.
I want to do something with my time, but I’m scared of losing my benefits. What can I do?
HIV diagnosis is often very hard to deal with, and if you are claiming benefits you might not want to risk losing them.
At the same time it’s important to plan for the future. Remember that doing something meaningful with your time can improve your life. Also there is the danger that you can become quite isolated if you’re claiming benefits.
But there are still lots of things you can do with your time without it affecting your benefits. Maybe think about doing some voluntary work, or you can study part time without it affecting your benefits.
If you are claiming certain disability benefits you may be able to work part-time without it affecting your benefits entitlement, but always check with your benefits adviser first.
Whatever you decide to do, don’t be afraid of taking the plunge, you have nothing to lose, and loads to gain. Good luck!
I want to work in an environment where I can be open about my HIV status, where should I look?
If you feel unable to talk to your employer about your HIV status, it can make life difficult for you. For example you might have to lie about going to see your consultant, or you might have to hide your medications from your colleagues.
Another downside is that you won’t be able to ask for support if your health is suffering.
If you want to find a job in a more supportive environment, find out if an organisation has a HIV policy, or if they have a comprehensive equal opportunities policy.
Government departments, local authorities and voluntary sector organisations are often more accessible to people with disabilities such as HIV, although you cannot guarantee this.
I think my work is affecting my health, what can I do?
First of all remember your health is your most important thing.
Certain careers, for example catering, involve working long shifts in a stressful environment. This can adversely affect your health, or make it difficult to adhere to your medication regime.
HIV is classed as a disability under the DDA and this means that you are entitled to ask your employer to make ‘reasonable adjustments’ to make your job more manageable. For example you might be entitled to change your shift pattern, or move to a less stressful department.
If you work for a large organisation it may be possible to talk to your Occupational Health department in confidence. Maybe you could ask a friend to contact them anonymously to gauge their reactions.
If this doesn’t help, it might be an idea to take some time off work to reassess your options, but before you do this talk to your doctor or consultant and ask for their opinion.
Section 4 - Information for health workers affected by HIV
This information is provided as guidance for any healthcare workers worried about HIV. It is not intended to replace professional medical or legal advice.
All doctors, nurses, midwives, dentists, medical students or any other health workers should be aware of the Department of Health guidance:
HIV-infected health care workers: Guidance on management and patient notification - Click here for more information
Can I work in the health service if I’m HIV positive?
Yes. There are many healthcare workers who have successful careers in the health service.
All medical professionals should use Universal Medical Precautions [SB85][ah86]and infection control procedures at all times, no matter what their HIV status.
An HIV diagnosis is not a barrier to working as a medical professional, but there are limitations in some fields of medicine.
These limitations apply to health care workers involved in Exposure Prone Procedures.
There are certain procedures that a healthcare worker living with HIV cannot perform, but the majority of healthcare positions have no limitations for people living with HIV.
There are many healthcare workers living with HIV, who have successful careers within the health service.
What are defined as Exposure Prone Procedures?
The Department of Health defines Exposure Prone Procedures as:
“Exposure prone procedures are those invasive procedures where there is a risk that injury to the worker may result in the exposure of the patient’s open tissues to the blood of the worker (bleed-back).
“These include procedures where the worker’s gloved hands may be in contact with sharp instruments, needle tips or sharp tissues (e.g. spicules of bone or teeth) inside a patient’s open body cavity, wound or confined anatomical space where the hands or fingertips may not be completely visible at all times.
“However, other situations, such as pre-hospital trauma care should be avoided by health care workers restricted from performing exposure prone procedures, as they could also result in the exposure of the patient’s open tissues to the blood of the worker.”
They do not include:
- Taking blood
- Giving injections
- Setting up intravenous lines
- Routine vaginal or rectal examinations
- Giving minor stitches
- The incision of external abscesses
- Simple endoscopic procedures
The only positions in the health service that routinely perform Exposure Prone Procedures are:
- Anyone involved in surgery
If you are involved in Exposure Prone Procedures and you find out that you are HIV positive, it is essential that you seek confidential advice immediately. Your employer should give you the option to retrain and be redeployed in another discipline.
Do I have to disclose my HIV positive status if I am a healthcare worker?
Unless you are performing Exposure Prone Procedures there is no legal obligation to disclose your HIV status. However you should make the decision for yourself, but seek advice. The RCN counselling service can offer confidential advice for their members on 0845 772 6100.
The advice given by the Department of Health is that you should discuss your HIV status with your Occupational Health Department.
If you do not wish to put this in writing on a medical questionnaire, you are entitled to tell Occupational Health verbally.
Your confidentiality should be protected at all times, and most of the time there should be no need to involve your line manager.
Where do I stand legally?
If you are living with HIV you are protected by the Disability Discrimination Act from the point of diagnosis.
This means that you are legally protected from discrimination or harassment because of your HIV status. (See Section 1 - What are my rights under the law?)
Section 5 - Discrimination at Work
Under the Disability Discrimination Act, people living with HIV are protected from discrimination or harassment.
If you feel you are been discriminated against because of your HIV status, or for any other reason, do not hesitate to contact HIVsport or any other HIV organisation for advice. This is not something you should have to go through on your own.
This information is provided for your information, but we must stress, it is not intended as a replacement for professional advice.
What counts as discrimination at work?
Discrimination means that you are treated less favourably than other job applicants or employees because you are HIV positive.
For example, if an employer or a potential employer treats you differently because of a generalised assumption made about how the virus affects your ability to do your job, 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 you on the grounds of your disability, or to subject you to any other detrimental treatment.
Remember that discrimination can occur in loads of different ways. For example, you might be overlooked for promotion because you are HIV positive. Or your employer might make incorrect assumptions about how HIV is transmitted and not allow you to use certain company facilities such as the staff kitchen.
Employers will also be discriminating against you if they victimise you because you are HIV positive, or if they fail to make reasonable adjustments for you in the workplace.
What counts as harassment at work?
This includes bullying, name-calling or any other behaviour that could humiliate, degrade or embarrass you because of your HIV status.
Under the Disability Discrimination Act harassment is a separate offence from discrimination, but obviously the two are related, and harassment can put you in a situation where you are being discriminated against.
Harassment occurs when someone (your boss, your supervisor or a work colleague) behaves in such way that violates your dignity or creates an intimidating, hostile, degrading, humiliating or offensive atmosphere because you are HIV positive.
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 you suffered because of their behaviour.
Harassment is one of the most difficult situations to deal with; it can have severe effects on your self-esteem, and can make you feel depressed and isolated.
If it happens to you, try and gather some evidence before you complain. Maybe keep a diary of things that happen, so you can quote the time and the date of each incident. If the harassment involves offensive material such as emails, make sure you print them off or save them onto a disk.
If you have evidence to support any complaint or claim, it is much more likely that you will be taken seriously. Don’t hesitate to seek professional advice.
How can I prove that my employer is discriminating against me?
Sometimes discrimination or victimisation can be very hard to prove. If you are being discriminated against or picked on because of your HIV status it is likely that this is a very stressful and worrying time for you. It can have a seriously detrimental effect on your general health and well-being if you are unhappy at work.
So it is very important for you to take a step back, and try and look at your situation objectively. If you make a complaint or pursue a grievance when you are emotional or angry it will probably not be very successful.
Sometimes discrimination can be very subtle. Somebody may be making remarks or treating you differently in such a way that no one notices apart from you. This can make you feel even more isolated. So it is very important that you start to gather some form of evidence to back up your claim.
There may be other employees who will give evidence on your behalf, although often people will not want to come forward. If you can, ask them to make a written statement in support, as this will make it harder for them to change their mind.
Start a diary of the discrimination or victimisation. Make a note of the date, the time, the location and details of what happened and what was said. Then make a note of how this made you feel. Did you humiliated or embarrassed? Did you feel degraded or offended? Remember the more details you record, the stronger case you will have in the future.
Remember, it can give back a feeling of control over the situation if you start making positive steps towards combating discrimination or harassment. You do NOT have to suffer in silence, but if you make a complaint, have some evidence to back you up, and keep your emotions out of it.
Who can I talk to for help?
Discrimination or harassment should not be something you have to deal with by yourself. Don’t worry you won’t have to pay for expensive lawyers, there are loads of organisations there you will help you for free.
Try the Disability Law Service, which can offer you advice by email or over the ‘phone.
The Equality and Human Rights Commission is an organisation that exists to promote equality and human rights.
Community Legal Advice helps you find free legal services in your local area
ACAS is an employment conciliation advice service which can offer confidential helpline, and a useful website.
Remember that employment law is a very complex area, so it might be an idea to seek advice from more than one organisation.
Section 6 - Problems with Workmates
Unfortunately there are still misinformed attitudes towards people living with HIV.
Sometimes if people know you’re HIV positive, or they assume you are, they will treat you differently. People might ignore you; sometimes it will be even more aggressive.
Hopefully this won’t happen to you, but if it does you should know where you stand legally.
This guidance is provided for your information only, and is not a substitute for professional advice. If you have any problems don’t hesitate to contact us for advice and support.
My colleagues have found out I’m HIV positive and now they refuse to work with me; what can I do?
The good news is that you are protected by the Disability Discrimination Act. However this is a very difficult situation to deal with and this will be a very stressful time for you.
There is no reason why your colleagues should refuse to work with you. However there is still widespread misinformation about HIV that is still put out by some sections of the media.
For this reason some people have some unfounded fears about HIV transmission.
Remember it is your employer’s duty to ensure that you are not subjected to discrimination. This means they have to make sure that you are not treated differently because of your HIV status.
Obviously if your colleagues are refusing to work with you, they are not treating you the same as anyone else.
You may find it hard to raise this with your managers; however this is what you will have to do, as it is their responsibility to put a stop to discrimination in the workplace. They should instruct your colleagues to treat you normally. If they do not comply, your managers should take disciplinary action against your colleagues.
Remember: we do not live in an ideal world, and your managers might not always support you. If sport related, don’t hesitate to contact HIVsport for advice and there are loads of organisations out there that can, and will help you.
My workmates are insulting me because I’m HIV positive what can I do?
This situation would probably be defined as harassment under the Disability Discrimination Act.
Anyone calling you names or insulting you because of your HIV status would be breaking the law. Often, harassment can be accompanied by other forms of abuse, such as homophobic, racist or sexist insults. These would also be against the law.
Remember this sort of behaviour is unacceptable. The people behaving in this way are the ones at fault, NOT you.
Also, if your line managers do not take action to stop this sort of behaviour, they too could be in breach of the law.
The good news is: If sport related, HIVsport is here to help and there are dozens of organisations where you can receive advice and support. Do not hesitate to get in touch.
I told the personnel department I was HIV positive, and I’ve just found out that they’ve told my workmates. What can I do?
There is no reason why your personnel department would need to disclose your personal information in this way.
It is quite possible that by acting in this way they will have been in breach of the Data Protection Act.
Unfortunately, once your personal information has been made public, you won’t be able to take it back.
If you feel this situation is having a detrimental effect on your health, talk to your consultant or GP. Taking some sickness leave may give you a chance to work out your options. This won’t be a long term solution.
This is definitely a situation where you would need professional advice or support. If sport related, contact HIVsport for more information.
If you are a trade union member, speak to your representative. Or use one of the helplines listed below.
ACAS Helpline: 08457 474 747
Disability Law Service: 020 7791 9800
Equality and Human Rights Commission: 08457 622 633
THT Direct Tel: 08451 221 200
Keep In Touch With HIVsport
HIVsport would like to thank
Durex for their support
HIVsport is a registered charity No.1143754.
Registered Office: 94 Eldon Road, London N22 5EE