Working together with respect
This guide is to help people who are accessing services at CWPT, and their carers understand information sharing and confidentiality between themselves and the staff based in services. This guide has been produced because, for many of our carers, supporting someone can result in uncertainty around what information can and cannot be shared about the person receiving care and support.
We realise that at times, when certain information is not shared, this might cause difficulties for a carer. This guide helps carers understand how information is shared between CWPT staff, service users, and carers. It aims to reduce confusion and support better communication.
Who is a carer?
A carer is a person of any age who provides unpaid care and support to a family member, friend or neighbour who is disabled, has an illness or long-term condition, or who needs extra help as they grow older. They could be caring for someone who is ill, frail, disabled, has learning difficulties, a mental health illness, substance or alcohol problem. The caring may include help with personal care, medication, cooking, shopping, housework and giving emotional support.
We recognise that:
Unpaid carers are often the only constant in a person's health care journey. They are there when a crisis occurs, when the person is well and when that person needs support with day-to-day activities. They often have an in-depth understanding of the person's needs and condition and are a vital partner in care.
Carers are often the first to be aware of a developing crisis - sometimes when professional help has not yet been established or is unavailable. They are usually best placed to notice subtle changes in the person for whom they care and can be the first to notice the early warning signs of a relapse.
Caring for someone can take up a few hours each week, or a carer may be caring for 24 hours a day, seven days a week. Some carers live with, or near to, the person they are caring for, whereas others provide more remote support. Some look after more than one person.
The support provided by unpaid carers is varied and might include:
- Helping someone wash and dress themselves and with other personal care
- Housework, food shopping and picking up and administering medication
- Taking someone to hospital and GP appointments
- Providing company and emotional support
A carer is often the person who knows the patient best
The sharing of information between staff and carer is vital to the care and treatment of our patients. Carers hold knowledge and expertise and will have spent a lot more time with the person they care for than professionals, especially when they are new to a service.
They might be able to share relevant historical information, which could include what has or hasn't helped in the past. They may notice early warning signs, or triggers, to prevent relapse
Carers will also have a much better picture of that person, their lives, what matters to them and makes a positive difference. Carers are key to helping staff have as full a picture as possible and that everyone is working together.
What can you expect?
- Carers should be recognised and identified at first point of contact or soon after and will be included in discussions about confidentiality and information sharing from the start.
- Staff will listen to carers and value what they have to say, respecting their expertise, views and opinions.
- Confidentiality does not mean we can't speak to someone or receive information, we can share general information including in/out of hours contact numbers and about the service.
- Staff will provide clear communication throughout in everyday language.
- Carers will be given the opportunity to ask questions and expect to receive a response
- Carers will be treated throughout with dignity and compassion
- Cultural recognition (respecting ethnicity/country, faith, values, and cultural difference )
Can a professional share information with me about my relative, partner or friend?
Confidentiality means keeping personal information safe, there is still a lot of information that can be shared without consent.
If consent is withheld, staff can still share general information about health conditions and treatment where a diagnosis is already known (Care must be taken to not include any personal information that is specific to that individual)
Examples of types of information that can be shared without consent:
- General information on health conditions and treatments
- Information on the team, and contact numbers in/out of hours
- How to manage in a crisis and ways to support someone with a mental health need
- Navigating systems (different teams and how they work)
- Supports and services available to Carers/family members
Examples of types of information that can be shared with consent:
- Consent is needed where the diagnosis is not known, or it relates to information specific to that person
- Personal history
- Personal and social situation
What is confidentiality?
Confidentiality is an integral part of effective care. Staff should have a conversation with anyone who is accessing services as soon as practical to identify:
- anyone they feel is in a supportive role (caring role)
- what information can be shared with these people
Assumptions should never be made that the individual does not want information shared with those supportive people involved outside of the organisation. Likewise, assumptions should never be made that a service user does consent to information sharing.
Staff need to ensure that they ask the following questions and record the outcome, so that other staff are aware:
- Can we share information about the individual's care and treatment?
- Who can we share this information with?
- Is there anything the individual would like us not to share?
Often, when a person enters treatment and is unwell, they will refuse to share information with friends and family due to stigma and fear of how the information will be used. If refused, staff should ensure we are regularly revisiting the question of sharing information with carers.
Confidentiality is about keeping personal information safe, it doesn't mean:
- We can't speak to a family member/friend
- We can't receive information, or share general information about services, treatments and the way we work.
We can also talk about information the Carer/family member or friend already knows, being sensitive to personal details that the individual using services may not wish to be shared
What is capacity?
A capacity assessment looks at whether the individual is able to:
- Understand the decision to be made (share information) and the information provided about the reason for sharing information. The consequences of making a decision must be included in the information given.
- Retain the information: a person should be able to retain the information given for long enough to make the decision. If information can only be retained for short periods of time, it should not automatically be assumed that the person lacks capacity. Notebooks, for example, could be used to record information which may help a person to retain it.
- Use that information in making the decision: a person should be able to weigh up the pros and cons of making the decision.
- Communicate their decision.
Capacity can fluctuate and is decision specific so needs to be re-visited throughout someone's journey with services. For example, during a period of relapse someone may lack capacity to consent to information sharing about their mental health but regain this as they recover.