Confidentiality and information sharing with unpaid carers and family members of patients who are 18 years or older.
A guide for carers and family members.
We know that as a family member, or unpaid carer, you want information about the person you are caring for when they have care, treatment and support needs. We know this will help you to support them, and for you to be less worried.
Many patients are happy for us to share information with you as their family and carers.
However, some patients do not want to do this, or sometimes they do not want to share certain pieces of information. This means they do not consent to sharing information.
Patients can also change their mind about this. We understand this can be frustrating and worrying.
We can always:
- Listen to you, so please continue to share information with the clinical team.
- Share with you general information about relevant health issues and managing symptoms.
- We can also always tell you about carer services and your rights.
This guide tells you more about how we work, with frequently asked questions. The information in this guide is about patients who are adults.
What we mean by ‘carer’ and other key terms
Carer: The NHS and other organisations use the term ‘carer’ about people who look after a family member, partner or friend who need help. This could be because of their illness, frailty, disability, a mental health problem or an addiction. A carer can be an adult, a young person or a child. The care they give is unpaid. Caring may include physical, practical or emotional support.
You might not think of yourself as a carer, but that you are a family member, partner or a friend supporting a loved one. However, being seen as a carer means you have right to support and specific rights with services.
In this guide, we use the word ‘carer’ to refer anyone who supports a patient, including family members, relatives and friends.
Nearest relative is a specific legal term used in the Mental Health Act 1983. A carer or next of kin might not be the nearest relative. This individual has specific legal rights, particularly when someone is detailed in a hospital under the Mental Health Act. Identification of nearest relative - Mental Health Law Online
Patients, service users and clients: Different services can use different terms. In this document, we use the word ‘patient’ to refer to patients, clients and service users of all our services. In some of the examples we use the term ‘loved one’ to describe the patient.
Confidentiality means keeping information about patients safe, including respecting people's wishes regarding their confidentiality. There are rules about confidentiality that we all have a responsibility for. These include asking patients what information we can share about them. We also discuss who we can share that information with and how we share the information. We also advise on the times where it may not be possible for us to maintain that confidentiality.
Care works best when patients, carers and our staff work together.
Sharing information between our staff and you, as a carer, is vital to the care of our patients. You are often the person that knows the patient best.
We also know that your wellbeing can be improved if we work together. It helps you to deal with difficult situations if you have information.
Yes they can. At times, patients may not want to share particular types of information. Their wishes must be respected by our staff
A colleague who is working with the patient, will discuss with them the type of information that they are happy can be shared and who it with. They will continue to review this with the patient throughout the provision of care.
If a patient has not given consent for us to share information with you, we will explain to you why we can't share this.
Confidentiality does not prevent contact between you and our staff.
It also does not prevent staff listening to and receiving information from you.
We can keep in contact with you. It is important that you continue to share with us any concerns you may have about the person you care for.
See the frequently asked question below about your rights to share information confidentially about the patient.
We can also support you, and provide you with general information about:
- the service and its treatments
- health conditions
- help and support available for you as a carer
- coping with stressful situations
- who to contact to express concern about the patient, including in an emergency or out of hours.
Frequently asked questions
We will look to understand why a patient is refusing to share information with you. We will explain the benefits of having you involved in their care. We will review this with the patient to see if they have changed their mind. Sometimes patients are happy to share certain aspects of their care. It is our intention to keep families and carers informed of the situation. This will be done by someone from the clinical team providing care to the patient, for example a care coordinator.
In most situations yes. Tell the staff member you speak to, and they will note that in the electronic patient record.
However, as with patients, there may be times when confidentiality may be breached. These include situations where the information you tell us raises a concern such as a serious risk to public health or risk of serious harm to the patient, yourself or others.
Please keep in mind that by asking our staff not to share with the patient what you have raised, it can sometimes make it hard for us to address your concerns with the patient.
For example, if you tell a staff member that the person is drinking alcohol or using drugs. And you tell the staff member that you do not want us to tell the patient you have said this. This can make it hard for the staff member to bring it up in conversation with the patient for fear of breaching confidentiality.
If it's possible to allow us to be open with the patient, this is helpful. We want to promote a culture of openness between all parties.
However, we understand that in some cases it is essential that we do not disclose to the patient the information you have shared with us.
Mental health tribunals review cases of patients who are detained in a psychiatric hospital and want to be discharged.
You might have shared something with us about the patient and asked that we do not share that with the patient.
If the information you have shared would impact on the decisions made in a tribunal, we might need to share it. This might mean that the patient would hear about the information you have shared.
In these cases, our staff will have to consider if sharing the information is reasonable, necessary and proportionate, for the patient’s wellbeing and in the interests of justice.
If they decide that it is necessary for us to share the information for the tribunal, we will aim to inform you about this in advance.
However, the final decision will be made by the tribunal. Most solicitors will argue the case for full disclosure of information.
Information you share with us is recorded in our electronic patient record.
Any information that is relevant to the care of the patient will be discussed with the clinical team providing their care.
If you would like to see a copy of how the information you have shared with us has been recorded, speak to the care team. A senior manager will tell if they can provide a copy of this information to you directly.
In some cases, particularly if this is about a large amount of information, you might need to make a subject access request. This is guided by the Data Protection Legislation. If that is the case, our staff member will tell you how to do this.
You can read more about how we use your information on our website.
Please see the above section about your rights to confidentiality, and situations where we might need to breach that confidentiality
Advance statement is a document that anyone can fill out, to explain what they would like to happen in the future if they become unwell. This can set out their wishes on how they want to be supported, even if they say something else when they are unwell. They might 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.
An advance statement is a general preference about someone’s treatment and care. It is not legally binding, but medical professionals should make a practical effort to follow the wishes set out.
This is different from advance decision. Advance decision gives someone the legal right to refuse specific medical treatment in future. This also is for situations when they may not have the mental capacity to make the decision for themselves. An advanced decision is legally binding. However, health professionals don’t legally have to follow an advance decision if someone is in hospital under the Mental Health Act.
These websites have more information about advance statements and advance decisions:
The first point of contact usually will be a named nurse or other staff member who is providing care.
If they are not available, or you don’t know this is person is, you can speak to other staff members.
If the service manager is not able to help you, or you are not getting the support you need, you can contact our patient advice and liaison service (PALS).
They provide confidential advice and support for patients, families, and carers. They can guide you through NHS services and help resolve concerns quickly.
- Phone: 0161 716 3083 (24 hour answerphone)
- Email: pcn-tr.pals.penninecare@nhs.net
The rules of confidentiality should not be used you.
If you do not feel you are being listened to or appropriately involved by staff, speak to the service manager.
If this does not resolve the issue, you can contact the patient advice and liaison service (PALS).
It is such a stressful situation if your loved one is unwell and you don’t know where they are. You might think that they are under our care or in a ward, particularly if they have been treated there before.
In some circumstances the ward staff are not able to confirm to you if your loved one has been admitted.
For example, if your loved one has not given us consent to share that information. Our staff will review each such situation individually, considering the patient’s capacity, their best interests and any possible risks.
In first instance, speak to the team manager.
If they can't help you, you can contact the patient advice and liaison service (PALS). They might not be able to give you more information, but they will listen to your concerns and provide advice.
If we are not able to confirm if your loved one is in the hospital, you can ask police to conduct a welfare check. If police are able to locate your loved one, they should be able to tell you if they are safe, but possibly not where they are.