Confidentiality and information sharing - For carers, friends and family
You might find that healthcare professionals do not give you information about the person you care for. This section explains why this happens and how you can try to stop this in the future.
- 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.
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.
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.
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.