Confidentiality and information sharing - For carers, friends and family

There are rules to say when healthcare professionals can give you information about the person you care for. This section explains what these rules are.

Overview

  • Professionals can normally 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 can 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 who they want to share their information with if they lose mental capacity.

Key words

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

Professional: a professional is someone who works in health and social care services. This can include a:

  • psychiatrist,
  • psychologist,
  • GP,
  • social worker,
  • nurse,
  • housing officer,
  • probation officer, or
  • advocate.

What is confidentiality?

What is confidentiality?

A professional shouldn’t normally share any personal information about your relative with other people. They can normally 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 NHS services and professionals that support your relative. They should only share information that they need to, and your relative must be made aware of this. For example, your relative’s psychiatrist may discuss their treatment needs with their care co-ordinator.

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

Your relative may find it difficult to give consent for their information to be shared. This may be due to their disability or mental illness. Professionals must take care to talk to your relative in a way that is suitable for their needs. If they don’t, they may be discriminating against your relative by not providing them with a reasonable adjustment.

You can find more information about:

  • Confidentiality by clicking here.
  • Discrimination and mental health clicking here.

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 happen for these reasons:

  • when it is in the public’s interest. For example, a professional may decide to share information with the police if your relative might be a risk to other people, or
  • when they have to because a court or a piece of law says they have to.

A professional should tell your relative if they need to breach confidentiality through a court order. But a professional may not tell your relative if it would put them or other people in danger.

It is unlawful if a professional breaches confidentiality without good reason. You relative could take legal action against them.

Can a professional share information with me about my relative?

Professionals can’t usually talk to you about your relative’s treatment or care if your relative doesn’t give consent. This is because professionals must protect your relative’s confidentiality.

But professionals should make sure that your relative understands the benefits of sharing information with family and carers. Your relative might think sharing information with you could help with their care. You can also talk to your relative about these benefits. These may be:

  • that you know your relative’s crisis plan,
  • that you know your relative’s care plan, or
  • you know what treatment they’re getting for their condition.

This may make you more able to care for your relative. And to support them in a crisis.

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 their information to be shared.

Your relative can give consent for the professionals to share all, or some, of their information with you. There is a template consent form on the factsheet that you can download using the link at the top of the page. Your relative can fill this out and give it to their healthcare teams.

 

Information about relatives

Can I give information about my relative to a professional?

Yes you can. There is no rule that says a professional can’t listen to your concerns as a carer, friend or relative.

The General Medical Council (GMC) make guidelines for medical professionals. The guidelines state that professionals shouldn’t 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.

This means you have a right to share your concerns with professionals involved in your relative’s care.

But, if your relative hasn’t given consent, professionals won’t be able to:

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

Professionals 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 won’t 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.

My relative is under the Mental Health Act and I’m the Nearest Relative. What information can I get about my relative?

If your relative is detained under the Mental Health Act 1983, you may be their nearest relative (NR). NR is a term that is in the Mental Health Act, which is the law.

The NR isn’t always the same person as your relative’s next of kin.

The NR has certain rights under the Act. The NR can:

  • ask for a Mental Health Act assessment to decide if your relative should be detained, and
  • discharge your relative from detention under the Mental Health Act.

Confidentiality laws are the same, even if you are the NR. This means that you can’t get information if your relative doesn’t give consent.

Your relative can decide what information they would like their NR and relatives to know. Patients are encouraged to agree to their information being shared. This means that their carers, friends and relatives can be kept informed.

You can get more information about ‘Nearest Relative’ by clicking here.

Future arrangements

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. There are examples in the previous sections on this page.

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 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 and know what information they can share.

You can find an example consent form by clicking and downloading the factsheet using the link at the top of the 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.

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 can 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 as evidence to help you put a complaint together.

You might be able to get some help making a complaint from an NHS complaints advocate. Advocates don’t work for the NHS and are free to use. You can find your local service online. Or you can contact us, and we can find it for you.

You can find more information about:

  • Mental capacity and mental illness by clicking here.
  • Planning for your care – Advance statements and advance decisions by clicking here.
  • Complaints by clicking here.
  • Advocacy by clicking here.
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