22nd January 2024 News

New resources aim to help people make key mental health decisions

Lived experience • Policy and politics •

A recent McPin survey* found that 96% of people would consider using an Advance Choice Document (ACD), but only 50% had heard of it before.

ACDs give people living with mental health issues an opportunity to state their wishes and instructions about treatment and care in the event of future episodes of a mental health crisis.

This document could highlight a person’s wishes around where they would prefer to receive treatment or who should look after their pets if they’re unable to, for example.

The document, which sits at the top of a person’s NHS medical records, provides a chance to make their voice heard in future mental healthcare decisions, using the knowledge gained through past experiences of mental health crises and healthcare to guide a clinical team through future episodes.

Increasing awareness of choice

We sent a short survey to the McPin Involvement Network to determine how many of its members –  a group of over 300 people signed up to receive research involvement opportunities from McPin – knew about Advance Choice Documents.

Out of the 52 network members who responded, only 50% had heard of an ACD, but 96% (50 out of 52) said they would consider using it.

This finding is in line with what the research team, led by academics at King’s College London, discovered during their mental health and justice research programme

Many people in receipt of mental health treatment do not know about advance directives or ACDs. It’s for this reason that the website Advance Choice is being launched soon.

AdvanceChoice.org will be an online resource which exists to explain what mental health Advance Choice Documents are, when to use them, and how to create them.

It has been co-developed with mental health service users and carers through a group hosted by McPin.

A central aspect is to support people to have collaborative conversations with their mental health support team, psychiatric staff, and family members or carers.

As far as we are aware this is the only dedicated platform of its kind.

*The survey was sent to the 352 members of the McPin Involvement Network. Percentages have been calculated based on the 52 people who responded.

What to expect from the website

AdvanceChoice.Org is an online resource that hosts several explanatory videos, alongside educational information, designed to explain the what, how and why behind Advance Choice Documents – including a step-by-step guide on completing one.

A series of short films give simple instructions and support to a group of people who often feel that their voice is not heard in decision-making relating to their care and treatment.

We really hope the online resources will help people plan for any future mental health crises and have conversations with those in the mental health care team to plan in advance.

The ACD will guide healthcare professionals when they become very unwell, at a stage where they may not be included in all decisions about their care. Although not legally binding in the UK currently, they are known to be useful and beneficial.

Why are ACDs being talked about now?

After the recent Independent Review of the English & Welsh Mental Health Act in 2018, the government came out in support of incorporating Advance Choice Documents into healthcare.

It said they ‘give individuals the opportunity to record a range of choices and statements about their care and treatment in preparation for a future situation in which they are too unwell to express these decisions themselves.’

AdvanceChoice.org has been designed to offer a way for those living with mental health issues under the support of secondary mental healthcare to start to be able to express these choices.

Creating the resources

Advancechoice.Org has been created in partnership with experts by experience – mental health service users who have experience of treatment under the Mental Health Act, as well as carers of relatives or friends who have direct experience.

The project builds on research funded by the Wellcome Trust, King’s College London and the ESRC and is a collaboration supported by Bipolar UK, the NHS, the McPin Foundation, University College London, The Department of Health and Social Care and The Royal College of Psychiatry.

Many of the researchers and people involved in filming have lived experience of mental health conditions themselves, and they are also joined by clinicians with varied experience.

“We are really pleased to see the launch of this Advance Choice Document resource which has been actively shaped by the service user and carer members of the McPin Service User Advisory Group (a SUAG).

“This will provide useful guidance and resources to actively support people to make Advance Choice Documents.

“Moving from a good concept to an embedded practice supporting people’s care and the communication that is so critical with clinicians and family members.” –  Vanessa Pinfold, co-founder, McPin

Read more about ACDs – including a researcher and service user advisory group member perspective on the study – in the blog “It gives people a voice”: The benefits of Advance Choice Documents in mental health.