Care and health service providers have a duty to look after personal information, such as medical records and address details, and protect a person’s right to privacy.
However, as a carer it is often helpful to be told information about the person you care for, including any medical problems, test results and diagnosis.
Families and carers have commented that they've had experiences where they didn’t have the information they need to be able to help, because care and/or health staff wouldn’t share important information.
As a professional standard, when staff do share confidential information they should:
- Only disclose the minimum that is necessary for the purpose
- Share only with those people who need to have it and make sure it’s accurate and up-to-date
- Make sure it’s shared in a timely fashion
- Make sure it’s shared safely and securely.
However, sharing information and involving carers is a key part of care and health services provide better, more effective services that are co-ordinated around the needs of the person. Sharing information with families and carers about someone’s health, care and the services being provided can be very straightforward, or can be a very sensitive issue.
Sometimes staff and the carer disagree on the amount the carer needs to know about the person they care for. Staff have a duty to protect the person’s privacy but the carer needs information to be able to make decisions and help the person they care for.
The best way to stop this being a problem is to set up an information sharing agreement before you come to need one – as a ‘just in case’. If the person you care for has mental capacity to make decisions, you can draw up an agreement together.
Drawing up an information sharing agreement
Sit down with the person you care for and ask them to think about what information they’d like to share with you and/or other relatives/friends both routinely and in an emergency. If you haven't got any contingency plans in place it might be a good idea to do this at the same time.
Prompt the person you care for to think about:
- Who they’d like to have information about them - for example, you as their carer and/or other family members
- What information they’d like them to have and when - for example, the success of medical procedures, copies of letters or the result of assessments
- What information they don't want to be shared - they may not want particular test results to be shared
- How involved do they want the named people to be? Do they want them involved in planning care and making decisions? Or just being told what has been decided?
- What circumstances they’d like the information shared in - for example if they've been hospitalised or sectioned under the Mental Health Act.
Once you’ve written or typed up the agreement, both you and the person you care for should sign and date it. Make some photocopies - your local library can do this for a small charge if you haven't got a printer. If possible, ask the person you care for to give a copy to any health and social care professionals who are involved in their care. Keep a copy in your purse or wallet to use in any future medical emergency.
Most health and social care providers involved in the person’s care will keep a copy of the agreement on the record of the person you care for, so all staff who work at the organisation can get access to it. Make sure you’ve asked them to do this.
Things to remember
- It’s up to the person you care for what information is shared – an agreement is a way of being clear about this
- They can change their mind
- Not all information is confidential information – the person you care for can decide that you should know they are in hospital, but they may decide not to tell you why or what the diagnosis is
- Consent to share information in writing is really helpful for professionals but it’s good to verbally express your wishes too.
Other helpful websites
- Derbyshire Healthcare NHS Foundation Trust - carers and confidentiality
- Derbyshire Health and Social Care Community - sharing your records
- Partners in Care/Royal College of Psychiatrists - Carers and Confidentiality in Mental Health
- Rethink Mental Illness website - confidentiality
Questions about Dementia?
You are invited to attend a question and answer session intended for people diagnosed with dementia and their carers. A…
Midway Day Hospital,…