Dr Paul PaesConsultant/ Honorary Senior Lecturer in Palliative Medicine

Learning from Carers- their role in chronic disease

Background

NHS organisations are obliged to involve users of services 1

Dissatisfaction with health services frequently comes from carers who can feel disempowered and marginalised

Tomorrow’s Doctors 2009 emphasises the importance of involving carers in educational processes2

1. DH “Our Health Our Care Our Say” 2006 “Equity and Excellence: Liberating the NHS” 20102. GMC. Tomorrow’s Doctors. 2009

But more than that……

Unpaid carers play a key role in society, saving the country billions

Most of us will be carers at some stage in our lives

Carers are allies for healthcare professionals leading to better outcomes

IT IS CRUCIAL THAT STUDENTS LEARN TO WORK WELL WITH CARERS

Curriculum innovation In Newcastle, the Chronic Illness, Disability

and Rehabilitation (CIDR) focuses on chronic diseases, their management and impact on patients.

Opportunity to incorporate learning about carers in a relevant way

Aims and objectives

AIMTo celebrate the role of carers and look at the key role they play in healthcare, and how we can learn from and work with them.

OBJECTIVES1)Develop communication skills with carers

2) Understand the contribution a carer brings to the management of a patient with a chronic illness

3) Reflect on attitudes towards carers

Core ingredients

28 Students (year 3) Implemented over 2009 – 2010 Northumbria BU, Newcastle University

4 Carers 2 dementia, 1 PSP, 1 Palliative care

Resources 5 rooms, 4 facilitators, & a box of chocolates

4 Parts to the lesson

1) The Learning from carer session (20 mins)

2) Hearing a carer story (60 mins)

3) Designing a poster (50mins)

Planning a poster around applying new knowledge to role as Dr

4 areas improving communication; carer distress; hospital

experience; working with carers

4) Presentation of Poster and prize giving(50 mins)

Educational theory – a modified Kolb

Theory: lecture

Interactive Planning:Hearing carer story

Doing: Making the poster

Reflecting: Presenting & questionning

Outputs

Patient Hygiene

Ward Cleanliness

BETTER PATIENT CARE = BETTER CARER EXPERIENCE!

Communication

Audits

Patient Dignity

Staff - carer

•More flexibility of care

•Patient centred approach

•Attention to detail

Inter-professional

•Professional manner

•“voicing concerns”meeting

•Personal

•Empathetic

•Feedback / concerns book

•Communication clinic

•Breaking Bad news

Higher standard of care… Training

Lack of facilities for carers

Carer amenities:

•Kitchen / Cooking

•Food

•Parking

•Sleeping

•Bathroom

Carers Allowance

Self HelpFinance

Hobbies

More money into respite centres

Newcastle Carer Centre

Reducing Carer

Distress

Care support packages

Increase pay for

professional carers

Respite Centrese.g. Alan Shearer Centre

Psychological supportFrom GP &

Mental Health team

Support Services

Samaritans& Other Charities

Advice Centres in Hospital

Increase time spent with & number of

professional carers

Friends & Family

Free time

Tips For Reducing Carer Stress

Social Psychological

Physical

CarerWellbeing

Respite

Social Network

MDT-Care

Manager

Information and

Education

Financial

Communication

Expertise

Increase resources

Empathy Dignity

Explanation

Communication

Involvement

Top tips for improving carer

experiencesIn hospital

Tips on improving carer

experience in hospitalDignity is paramoun

t!

Preparation for palliation – what, how

and when

Involvement in everything

DecisionsEvents

Transfers

Carer - nurse liaison about care

Check understanding of carer and

patient

Know who the main carer is

Ensure all patient’s specific

needs are met to assure

carer

“Kindness doesn’t cost a

thing”

Post diagnosis counselling

and explanation

Effective inter professional

communication

Adequate literature

Home visits

Direct contact numbers for

different HCPs

Inform about progress and plans

Help accessing financial support

Put in touch with

volunteering organisations/support groups

Treat carers with respect Contact at

convenient times

Regular contact with same HCPs/ Continuity of care

Consultation on decisions

Top Tips for Improving

Communication with Carers

Mode score of 9 (out of 10)- evaluation for the session has consistently been above course average

Feedback

Feedback- Free text comments about sessions

Talking to carers gives unique experience

Carers are integral to the health service – they

deserve at least half a dayTalking to carers gave a very

good impression of how becoming a carer changes a person’s role and how medical professionals

can work well with them to improve care

Good to do presentations to make us think of more

general aspects to caring

Being aware of support carer’s may need and they should feel part of

a team

Take into account role of carer and appreciate how useful

they can be in treating patient

Opportunity to meet with carers with enough time to really get some insight into

their experiences

Interesting to hear how an illness impacts on a family member, who has taken on a

carer’s role

I will remember that carers are also extremely

important both in terms of managing the patient and that they themselves are

in need of care

Meeting the carers was very helpful to see their

side of things rather than what the patients themselves go through

Feedback from carers

My story is quite relevant to making the future of care better You draw them

into your life, making it personal

Maybe, they’ve never considered

these issues

They were really interested in what I

have to say

The students come up afterwards and tell us

their own stories

At the time I couldn’t talk about caring- time helps, but makes

me more determined than ever to get the message across

The students are very keen to learn- they ask questions throughout

I know they’ve taken it on board by the

posters they produce

It’s a nice experience- I’ll do anything to help them make it better

Hidden benefits Observing the interaction of students and

carers and witnessing the warmth of relationship that builds up when the students lose some of their “professional” attitudes and communicate on a one-to-one human level.

Much of the learning takes place outside the specific activities during breaks

Benefits to carers and their passion to help The lesson plan involved team working, time

and project management Medical practice is based partly on anecdote

and narrative. Powerful individual stories can be drawn on later in the students’ career

Summary

Well received high impact session • Focused on action learning and hearing carer

stories• Aligned to curriculum outcomes and Tomorrow’s

Doctors 2009• Successful innovation which introduces students

to partnership issues

Thank You