Confidentiality for Family & Friends

You might find that healthcare professionals do not give you information about the person you care for. This factsheet explains why this happens and how you can try to stop this in the future.

Overview

  • Professionals can only share information about your relative if your relative tells them that they can. This is called ‘giving consent’.
  • In limited situations, a professional can share personal information without your relative’s consent.
  • Professionals should listen to you if you are concerned or want to give them information about your relative. 
  • Your relative should sign a consent form if they are happy for professionals to share their information with you.
  • Your relative could fill out an advance statement to explain what they want to happen if they become unwell and their judgement is affected.

For the purpose of this factsheet, ‘your relative’ means the person that you want information about. You could be their carer, friend or relative.

A professional is someone who works in health and social care services. This could be a psychiatrist, GP, social worker, nurse, housing officer, probation officer, or advocate.

What is confidentiality?

A professional should not share any personal information about your relative with other people. They can only share this information if your relative has said that they can. This is called giving consent. It means their information is kept confidential.

Personal information about your relative can include: 

  • address or date of birth,
  • sensitive information like a mental health diagnosis, 
  • treatment or care plans, or 
  • anything they have talked about in appointments or therapy sessions.

Professionals can share information with other people in teams who support your relative’s care.  They should only share information they need to. For example, your relative’s psychiatrist may discuss your relative’s treatment needs with your relative’s care coordinator.

Professionals should get consent from your relative before they share confidential information with other services like the police or your relative’s employer.

Sharing information

When can a professional share information without consent?

A professional can sometimes share personal information without consent. This is called ‘breaching confidentiality’.

A breach in confidentiality can only happen for these two reasons:

  • when it is in the public’s interest. For example, a doctor may decide to share information with the police if your relative might be a risk to other people, 
  • as part of a court order or law.

A professional should tell your relative if they need to breach confidentiality through a court order. This should happen before the breach, but it can happen after.  A professional may not tell your relative if it would put them or other people in danger. 

You relative could take legal action if a professional shares information without consent without a good reason.

Can a professional share information with me about my relative?

Professionals might not talk to you about your relative’s treatment or care if your relative does not give consent. This is the same even with close family. This is because professionals must protect your relative’s confidentiality.

Professionals should regularly talk to your relative about sharing information with carers, friends or relatives. This is to make sure that your relative has a chance to decide if they want information shared at different times. They should keep a record of what your relative says.

Your relative can give consent for the professional to share all, or some, of their information with you. In the downloadable version of this page there is a template consent form. Your relative can fill this out and give it to their healthcare teams.

Can I give information about my relative to a professional?

Yes. There is no rule that says a professional cannot listen to your concerns as a carer, friend or relative. The General Medical Council (GMC) make guidelines for doctors. The guidelines state that doctors should not refuse to listen to a carer, friend or relative’s concerns because of confidentiality. This is because the information could help with your relative’s care.

But, if your relative has not given consent, professionals will not be able to:

  • discuss your relative’s care or treatment with you, or
  • tell you whether they plan to do anything with your information.

Doctors might need to share the information you give with your relative. You might worry that this will affect your relationship or trust. You could ask that any information you share is used as sensitively as possible. You could explain that this is needed to protect your relationship. You might find that a professional will not speak to you if you try to give
information about your relative. If this happens, you could write down your concerns in a letter or email. This might make it harder for them to ignore.

What arrangements can I make for the future?

To try and stop any problems with confidentiality in the future, you could speak to your relative. You can talk about why it would be good to share information with you.

You could explain they don’t have to give consent for healthcare staff to share everything. For example, they might be happy for information about their diagnosis to be shared, but not their treatment plan. Ask them what they would feel comfortable to share.

Consent form

Your relative should tell professionals what information they are happy for you to know. It may be helpful if your relative writes down their consent on a consent form. Your relative will need to have mental capacity when they fill out the form. Mental capacity means someone understands the decision they are making. Someone can have mental capacity when they
are unwell in hospital. 

Your relative should ask healthcare staff to put a note at the front of their care plan or medical records. This is so that professionals know about the consent form in the downloadable version of this page. 

Advance statements

Your relative could fill out an advance statement to explain what they would like to happen in the future if they become unwell. Sometimes people can lose the ability to make a decision for themselves when they are unwell. This is called lacking mental capacity.

An advance statement can explain what they would like professionals to share with you or other people. 

You can find more information on advance statements in our ‘Planning your care’ factsheet. You can download this for free from www.rethink.org

What if professionals still don’t share information with me?

You might find it difficult to get information from professionals even when your relative has given consent. If this happens, you should speak to the professional involved. You should find out their reasons for not sharing information. 

If you think the professional does not have good reasons you can make a complaint. You could also ask for a copy of the local policy on information sharing and confidentiality. You will be able to see if they have followed their policy correctly. If they haven’t followed their policy you could use this evidence to help you put a complaint together.

You might be able to get some help making a complaint from an NHS complaints advocate. A complaints advocate does not work for the NHS and is free to use. You can find your local service online. Or you can contact us and we can try and find it for you.

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