Telling people

It is entirely up to you who you decide to tell. When you first receive your diagnosis, only you, the person delivering the result and any other healthcare professionals involved with your test will know your status. 

Your specialist and/or GP cannot reveal your status to anyone else as they are bound by a code of ethics and laws which ensure confidentiality. 

The only people they can tell without your permission are other healthcare workers who may be involved in your monitoring.

It can be difficult deciding who to tell, and there a few factors which you might want to consider. If you need support, you will have to tell certain people in order get that help. 

Also, it is worth bearing in mind that as soon as you tell someone you have hepatitis C, that information is no longer in your control. Because of this, you might want to think about who you might be able to trust with that type of information.

Is there anyone who must know?

This depends on your situation. In general, any contacts you have in which health is a significant issue are likely to require a disclosure.

If you have any insurance that is renewed on an annual basis, such a private medical insurance, then you need to tell your insurer. If your information is inaccurate, it may render the agreement invalid. It is advisable to read the small print on current or new insurance agreements prior to either disclosing or entering into a contractual agreement. 

You do not have any legal obligation to do so, but you might want to tell people who could come into contact with your blood such as a dentist. There is no obligation to inform your employer but, if you need to take off work because of your HCV, you will be required to provide a fit note (link to page). This may not need to state that you have hepatitis C, as you can discuss what gets written with the doctor who writes it for you. 

If your employer is not aware of your HCV+ status and you later find that you are unable to carry out your duties to the same standard as before your diagnosis, then you will not have any legal recourse under the Equality Act 2010. If you notify your employer, then you will most likely be covered. Link to ACAS helpline.

Questions to ask yourself before telling someone

There is no tried and tested way to tell someone, and everyone’s situation is different. In general, a planned approach is worth considering. Not only will it encourage you to consider all the possible outcomes, but it should also encourage you to explore the best way to deal with telling a certain person. 

Why do you want to tell this person?

  • Are you concerned about transmitting the virus? For example, if they are a sexual partner or someone with whom you have shared injecting drug paraphernalia. In these situations, you may feel an obligation to tell them. This will help you to protect others.
  • This person might have been worried about you and your health, and you wish to give them an explanation. They may be someone who is close to you who you feel ought to know. They may also be able to provide support.

What response do you expect?

  • It is important to bear in mind that you have no control over how someone will respond. Some responses will be positive, but others may be negative. Ask yourself if you are ready for someone to respond negatively.
  • You may be seeking emotional support, in which case it is vital to think about how you would deal with a negative response. 
  • Try to remember how you felt when you were told, and think about the fact that this person may be shocked or upset by what you tell them.

What do you hope to gain?

  • Hopefully, the disclosure of your diagnosis to someone else will be beneficial by sharing the burden with someone else and getting support. 
  • There may also be practical gains such as being able to take necessary time off work, reducing domestic chores or getting financial or practical help.
  • If you have been unwell for a time, diagnosis may be a relief for you and the people close to you if it provided an explanation of what was wrong.

How do you tell someone?

  • Naturally, this will vary depending on who you are telling. Thinking beforehand about how to tell someone will inevitably make the experience better and more beneficial for you both.
  • Accept that they are likely to have fears. Try to give them time to adjust to the news Expect them to experience a number of feelings, like you may have done when you were given the news. Maybe arrange to discuss it again later once they have had time to think about it. 
  • If you are finding it particularly difficult to tell someone, you may want to consider asking someone involved in your care. Someone like your GP or consultant may be able to offer you help here. As well as this, they might be able to accompany you to a consultation where your diagnosis could be further explained to them. The Trust helpline (0845 223 4424 or 020 7089 6221 (10.30am to 4.30pm Monday to Friday) is a resource for families and friends of people hepatitis C for information and support as well.

Is there anyone I can speak to about my rights?

The Equality and Human Rights Commission (EHRC) should be able to advise you on your rights regarding almost any matter connected with your hepatitis C. You can call them on their helpline number 0800 800 0082 or visit their website www.equalityadvisoryservice.com.

Alternatively, your local Citizens Advice Bureau may be able to provide you with information and advice.  You can find their telephone number on their website www.citizensadvice.org.uk

For issues concerning employment, ACAS offers a confidential and impartial service and can be contacted on 08457 474 747.

Are there many other people in the same position as me?

You are not alone. The current estimate for the number of people with hepatitis C in the UK is 214,000 although only about 100,000 of these people have actually been diagnosed.

What do I do next?

Now that you have been diagnosed, you will be offered help from the medical profession. It is very important that you begin to develop a relationship with the healthcare professional responsible for your care. This may be your GP or your specialist.