What Matters to You?

This is the second part of a blog by Dr Emma Wilkinson, Care or the Elderly Consultant.  Emma has written the blog to describe the learning from a project aiming to improve the care we provide for patients at the end of their life.  You can read the first part or Emma’s blog here.

Part two: ‘What Matters to You?’

In the first part of this blog I described how, as part of a programme supported by the Point of Care Foundation, we had used the method of patient shadowing to give our team a unique insight into the experiences of patients and families, and to identify which areas of care need improving.

What had become clear throughout the patient shadowing experiences was that communication was an area we needed to improve and particularly communication with patients, families and carers about their personal and individualised care needs.

All of this learning led us to the approach of ‘What Matters to You?’


The ‘What Matters to You?’ approach was born out of a New England Journal of Medicine paper:  ‘Shared Decision making – the pinnacle of patient-centred care’ by Michael J Barry and Susan Edgman-Levitan.  You can read it here.  They were inspired by seeing the white boards in a long-term care home; usually very medical with DNAR status, diagnoses etc; where instead were written personal comments like “I like 2 glasses of whiskey at 5pm “ or “never take me out of my room without makeup”.

A nurse from Norway named Anders Vege then started the idea of ‘What Matters to You?’ day in 2014. In 2016 the ‘What Matters to You?’ day included 580 teams from prisons, social services, teachers, acute hospitals and care homes, spreading to 14 countries around the world.  In 2017, this had spread further to 1,000 teams in 30 countries.

We are very much looking forward to participating in 2018!

Hospitals that have adopted this approach have seen a reduction in staff sickness and absence, as well as an improvement in patient experience and reduced complaints.  They have found that this simple concept connected with the intrinsic motivation of staff and can create ‘joy in work

The learning from our shadowing of patients was that we were not always communicating with our patients in a way that was consistent with this approach.  We all know how we would like to be treated and we talk to our loved ones in this way, so I was left wondering… what stops us in hospital?

Have we become over medicalised?  Do we need permission to act outside our presumed job description?  Are we in such a hierarchical system?  When did we stop listening as we would have done if it was our loved one in the hospital bed?  When did we see the person in front of us as a patient/disease /task and not a person?

Getting Started

The challenge we faced next was how do we get started and how do we engage a whole team in what we had learned from our shadowing.   Not for the first time in this project, the answer came by just letting the conversations flow.

While discussing with staff about the idea of ‘What Matters to You?’ and how we could apply this concept and involve staff, patients and relatives; the idea of using hands came up, representing touch, empathy and a personal feel.  The team decided to test the idea of putting these hands above every patient bed, next to the existing white boards, where anyone could record what matters to a patient.


Not only did this idea come from the team that we were trying to engage, which was great, but it also created an easy way to start the conversation with others.  Doctors could get involved a board round, nurses and health care assistants when providing personal care, relatives when visiting, etc.

I was delighted that taking time to talk to others about the challenges had led to a test-of-change that the team could apply together.  Those that know me will know I believe strongly that by acting as a multidisciplinary team.  Sharing the workload and respecting each other is the most valuable tool we have available to us.   We should all make an effort to understand each other’s roles and how to support each other, particularly in times of difficulty.

Measuring the change

The next question I ask myself is: how will we know if we are making an improvement?  How do you measure patient experience?

The approach I have heard that I like the most is measuring if certain behaviours occur reliably and this is the measure we are aiming to use.  We have decided to carry out regular checks to see if the ‘What Matters to You?’ conversations are happening and if patient’s preferences are being recorded and shared.  Not to carry out an audit of simple compliance or to performance manage a process; rather to check the reliability of our approach.

I believe that if this approach is applied as routine practice, all other measures (such as complaints about communication, etc) should improve.  If we treat each patient as a person with individual wishes, concerns, hopes, experiences, etc and listen to this when we make decisions and explain it in a way that person understands, then we will make improvements.  That is the way I would want my care to be and I suspect this is the case for most people.

Making it Stick

The Care of the Elderly team at ASPH has recently been re-formed as Senior Adult Medical Services (SAMS) and we decided to make the ethos of the SAMS unit “What Matters to You?”


We have had great support and engagement so far, but in an environment that has nurses on different shifts on different days and doctors and therapist rotating regularly, we were left wondering how we can embed this into everyday practice.  How do we give people the tools to do this every day?

Also, as our project is about making improvements to how patients are cared for at the end of life, we knew we would have to apply more than one change idea to back up this approach.

Susan Dargan, Lead Palliative Care Nurse and Dr Clare Smith, Palliative Care Consultant have developed a simple communication tool and are providing education and training for our teams. The tool has many features of the AIDET tool and others, but we have started basic and our hope is that is easier to embed some enhanced communication skills.

The overriding principle is that we want everyone to feel brave enough to have conversations that matter.  Our aim is to empower all staff to start the conversation themselves and feel confident in their abilities to do this.

We have Health Care Assistant champions on each ward to help talk to their peers, as I have always thought this group provide most of the personal care to patients and are often left out of change projects or learning events and I wanted their voices heard.


As well as the anticipated benefits in patient care and experience, I hope that this ethos will bring us all together as a team of highly specialised and skilled MDT members.   To get to know each other better and support and respect one another, but most importantly remember the reason we chose these careers.

As I have now learnt, this is a movement and continually developing.   A lot of quality improvement is about ‘joining the dots’.  I hope that all these dots join to form an ideal experience for patient, relative and staff member.

These are challenging times and we must support one another every day as well as through initiatives like Schwartz Rounds.  I have seen experienced nurses cry at the death of a patient.  I want those nurses to stay in our team. To get through difficult times, knowing they will have the support to go through it again tomorrow.

Finally, how do we recognise and reward this compassionate individualised care?  Is it just job satisfaction and getting back to the reason we chose this? Should we create a culture where engagement at the personal level is rewarded? Maybe at least recognised as important and valuable?

Overall I have found this first project very rewarding and it has introduced me to many people within the organisation that have made me a better person.  I have seen ASPH as a great place to work and complete faith that many people will continue to use QI methodology to improve people’s experience and care in this Trust.

I hope this blog has been useful and given you some things to consider.  Please leave your thoughts and questions in the comments section below and thanks.

Emma – @SurfingEm



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