Your parent's say over what the family sees

Over a pot of tea in your parent's sitting room, the talk may turn to the visits about to start, and to who else should hear about them. This page won't settle who should see what. It sets out what published guidance says about a person's say in who is involved. It is information, not medical or legal advice.

Start from what your parent wants

In the UK, the Social Care Institute for Excellence holds that each person is entitled to choose how they live and how they are supported. Autonomy, as the UK's SCIE puts it, means making your own decisions about your own life, large and small.

From first contact, NICE's guidance for adult social care in England recommends asking a person whether they would like family, friends or others they choose to be part of discussions and decisions about their care, and in what way, and then going by their wishes. NICE's guidance for adult social care services in England also says that, where the person wants family or friends involved, information is shared with them as agreed.

In Ireland, HIQA's guidance for staff says that when staff seek someone's consent for care or a service, they make sure the person knows there is a choice and that consent can be given or held back freely, without pressure. The Family Caregiver Alliance in the US, in its handbook, advises bringing the person who needs care into decisions as much as possible, and respecting the values and preferences they express, even where those differ from yours.

Your parent may choose for the family to see little or nothing, and that is a complete answer.

We think your parent should decide what their family sees, and you can ask any care provider how it makes that possible.

Two hub guides come at this from other sides, Respecting their independence and choices and Keeping a parent's privacy when you help at home.

Asking what a provider shares

WeHomeCare makes software that home care providers can use to plan, carry out and record care visits.

We think what a care provider tells a family should be for the person receiving care to agree to, wherever they can.

The section's About page has these statements in one place, and What a care provider's family updates can show you, and what they can't covers what written updates are not.

Before anything is shared, and later on

The US Family Caregiver Alliance's handbook suggests that decisions about what help to arrange are made, whenever possible, in agreement with the person being cared for. NICE's guidance for adult social care in England recommends looking again at a person's choice about who is involved, regularly and whenever they ask. In Ireland, the HSE's consent policy says that seeking consent for care should usually be a continuing process, not a single event.

Where several relatives are involved, the Family Caregiver Alliance's US handbook suggests, for family meetings, letting everyone's views be aired and keeping the talk on care rather than on matters between siblings or others. Your parent has a place in that conversation too, as far as they want one. For raising it at all, there is How to bring it up without a fight, and more in the hub's Starting the conversation department.

What the law allows differs by where your parent lives

Whether a parent is able to make a particular decision for themselves is not something a family is asked to settle on its own; where that is in question, it is for their doctor or care team, and the formal side differs by where your parent lives.

What a provider may share with family, and with what permission, depends on the place, and this page states no rule for any one place. The guidance cited here comes from the UK, Ireland and the US, and speaks for those bodies, not for everywhere. The provider is the one to ask how it works for your parent, with your parent part of that conversation.