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Patient Experience Insight: Learning from patients & carers

Don Brereton Chair Patient Experience Sub-group National Quality Board & NQB Lay Member spoke at today"s Patient Experience conference on:

• what is experience of care?
• why is experience important?
• what is good experience of care?
• the little things that make a big difference
• meaningfully engaging and involving people

In his presentation Don discussed: 

So what is experience of care?

The guidance Improving Experience of Care refers to two dimensions.  'What" the person experiences when they receive care or treatment – for example, whether they knew who to contact if they had a problem, whether the nurse explained the procedure to them, and whether the doctor asked them what name they would like to be called by.  'How" that made them feel – for example, whether they felt treated with dignity and respect, and whether they felt that the doctor told them about their diagnosis in a sensitive way.  The guidance goes on to refer to engagement and involvement and patient centred care.

The Subgroup, when discussing what experience covered, identified three levels of experience.  The first was about ensuring the dignity, privacy and independence – an essential foundation for any meaningful expression of service user experience.  Second, supporting shared decision making.  Third, supporting self management.

Why is experience important?

The guidance is quite clear and direct why this is considered important:

•    As a key part of providing high quality care
•    As a way of  improving outcomes
•    As a way of indicating value for money and whether services are appropriate
•    As a way of  supporting staff engagement

What is good experience of care?

The -I” statements such as – 'I am treated as an individual – my needs, values and references are respected" are in my view the heart of the guidance and are valid across health and social care.  I would also emphasise the importance family carers have in making these statements meaningful particularly where the service user needs help to express their feelings and make them understood.

"The little things that make a difference - Meaningfully engaging and involving people"

There are a great many examples in the guidance of individual Trusts and hospitals who have developed ways of training and engaging staff and patients often with quite simple but effective ways of improving communication and information.  The stories of individuals often bring the need for this quite dramatically.  For example Yvonne"s story in the Annex to the guidance includes these heartfelt observations:
All three of my children with disabilities are now on the brink of adulthood. Looking back, things were often very hard, with many times when I felt lost, frightened, exhausted and completely alone.

Parents of children with disabilities or medical conditions generally know their children inside-out and we care passionately about their well-being. We are their experts, we"re the people who sit up all night while they struggle to breathe or have countless seizures. If only every professional we encountered understood this basic fact and used it as their starting point.

Instead, medical professionals often disregarded my experience and knowledge, and frequently didn"t listen to anything I tried to tell them.

When I"ve been confined in that tiny space around my child"s bed for day and night for several weeks watching him deteriorate, a touch, a kind word or an offer to sit in my place for the time it takes to grab a coffee is something I"ve yearned for, yet disappointingly, many times it simply hasn"t happened. Sometimes staff have been sitting at a distant desk completing paperwork when I"d have done anything for someone to share the load in caring for my child.

Don"s full presentation is available for download at the end of this page.

Don"s biography:
I was appointed as a lay member of the National Quality Board in 2008/9.  My interest in their work was primarily driven by my experience of carers and caring.   My main personal experience of caring has been together with my wife looking after our son Sam who was born with Downs Syndrome 38 years ago.  I also became Chair of Carers UK from 2005 to 2013 and share their passionate belief in the need to fully recognise and support carers as well as those for whom they cared.

I was glad to be invited to Chair the NQB Sub-group on the Patient Experience given my personal interests.  My career experience had also been largely in the field of health and social care.  I started as a civil servant in the Department of Health and my final full time job was as Director of the national charity Motability.  My lifelong support for the NHS and belief in a social care system that supports families fitted well with the aspiration to promote the patient experience as an essential element of high quality care.

Future related events:

Complaints Handling, Investigating, Resolving and Learning
Wednesday 1 July 
Hallam Conference Centre, London

Interactive Masterclass: Are you as LEAN as you could be?
Monday 19 October 
Manchester Conference Centre, Manchester

Improving Patient Experience & Efficiencies using Lean 6 Sigma: Two Day Intensive & Interactive Workshop
Tuesday 20 October — Wednesday 21 October 
Manchester Conference Centre, Manchester

Always Events®: A positive approach to Improving Patient Care
Thursday 22 October 
Hallam Conference Centre, London

Interactive Masterclass: Are you as LEAN as you could be?
Monday 7 December 
Hallam Conference Centre, London

Improving Patient Experience & Efficiencies using Lean 6 Sigma: Two Day Intensive & Interactive Workshop
Tuesday 8 December — Wednesday 9 December 
Hallam Conference Centre, London

Download: Don Brereton full presentation

16 June 2015


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