Talking about family involvement with patients

It's important to use clear, familiar language and explain what we mean. For example, instead of “would you like to give consent for family to be involved in your healthcare?”, it will be more helpful to break things down:

• Is there someone at home who might be able to help you with your health? Lots of people find it can be really helpful to have family supporting you with [condition].
• If there’s someone at home who might be able to help you give us a clearer picture of your health problems, we could get in touch with them.
• There are different ways we could get in touch with them: we could reassure them that you’re being looked after without sharing anything specific, we could ask them some questions to help us understand what you need, or we could share some information about how your health is at the moment, if you’d like.
• Is there anything you’d like us not to share?
• Would you like us to contact anyone if your health problem gets worse?
• It’s a good idea to check understanding once you have agreed an approach, and to revisit it in future consultations. 

Feedback loop with families

One of families' main frustrations is that no-one keeps them up to date with what's happening with their loved-ones' care. 

Wherever possible, we should aim to feed back to families to let them know that any information or concerns they have shared have been noted. This avoids worry and frustration, and does not require consent. 

[A bit more here .... Where you have consent from the patient you can share information. However, how do you give feedback when there is no consent? What can healthcare teams update on and how can they explain the lack of consent to families in a sensitive way? I think there is more information on this in the Safer Custody toolkit]

Who, what, when and where

We recommend advising patients before any general engagement between healthcare and families takes place, to pre-empt any worries that individual cases may be discussed.

For both patients and families, timing is important. For patients, practitioners will need to use their judgement in raising questions about family involvement. If a patient is feeling distressed or overwhelmed, it may not be a good time to have a detailed conversation about consent, but if that person does have positive family relationships, it may be a reassurance to hear that they can benefit from support with health. 

When engaging with families (especially in the Visitor Centre), bear in mind that visits can be an emotional time. Visiting time should be protected time for family to engage with their loved ones, so we do not recommend planning for any healthcare engagement to take place in the Visits Hall during visiting time. 

Spotlight on consent and confidentiality   

It's entirely understandable that many healthcare staff approach the issue of consent to share patient information with some trepidation. Consent and confidentiality must be taken extremely seriously, in particular in the context of care in a custodial setting where further security considerations come into play.

What can we add here about how healthcare staff should approach this?

Some more information about consent and confidentiality is available here: Sharing information with unpaid carers - NHS England Digital