Post on 26-Dec-2015
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
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
Educational theory – a modified Kolb
Theory: lecture
Interactive Planning:Hearing carer story
Doing: Making the poster
Reflecting: Presenting & questionning
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