Beyond ‘what matters to you?’ – patients changing things together – The PATCHATT initiative

The idea of ‘mattering’ has always been central to palliative care.  Cicely Saunders’ well-known comment still resonates today: ” You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.”

In Cicely’s view, an individual matters because they are unique. It is this sense of a unique self which a terminal illness can disrupt, denying people an active role in their own and others’ lives.

This perhaps explains why the question ‘what matters to you?’ has become increasingly used in patient-centered care.

The emphasis on the word ‘you’ shifts the focus from illness and medical intervention to the individual and what they value most.  This may account for Marie Curie recommending it as the key question to ask someone living with a terminal illness.

The question ‘what matters to you?’ underpins the Patients Changing Things Together or PATCHATT initiative.  Developed by a community group of carers, patients, volunteers and clinicians, PATCHATT provides support groups with a difference for adults with a life-limiting illness.

Such individuals can often see ways in which their lives or their care could be improved and yet are not always listened to.  PATCHATT supports group members to take the initiative, plan for a small, do-able change and take action themselves to make that change happen.  

The question ‘what matters to you?’ is asked at the beginning of the first PATCHATT group session.

What we are trying to get at is, what are the things which are important to you at this stage of your life? What things do you value and want to hold on to? What things do you not value and would seek to change?

The question signals that in a PATCHATT group, the patient is in control. The agenda is theirs.  The focus is solely on what matters to them, what they wish to achieve in the time they have left, not how they can fit into other people’s agendas. 

In this way, PATCHATT encourages people to move beyond just answering the question ‘what matters to you?’ and hoping others will fulfil their needs.

Although supported by peers and the group facilitator, the onus is on each participant to plan for and bring about the change they wish to see. 

Some might think this is asking too much of people dealing with the ravages a terminal illness can bring.  However, group participants talk instead of the positive impact which doing something meaningful has on their sense of self.  ‘What matters to you?’ and ‘what can you do about that?’ are questions we therefore intend to keep asking.

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https://www.patchatt.co.uk

More about PATCHATT groups

• Group participants join us online for 45 minutes a week for 6 weeks via Zoom
• Full details on how to use Zoom are provided
• Participants can be supported by a carer if needed
• Each group is led by a facilitator
• Facilitators do not give advice but support participants to plan and bring about the change they wish to see
• Group membership is currently free of charge
• New PATCHATT support groups are introduced monthly, according to demand.

PATCHATT also has a research and publication programme focused on learning about how we can best support patient-led change.

If you are interested in joining a group or are a professional interested in collaborating or researching with us, please email Amanda Roberts at patchattcommunitygroup@gmail.com