Dr Paul Paes Consultant/ Honorary Senior Lecturer in Palliative Medicine

1. Learning from Carers- their role in chronic disease Dr Paul Paes Consultant/ Honorary Senior Lecturer in Palliative Medicine

2. 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 • DH “Our Health Our Care Our Say” 2006 “Equity and Excellence: Liberating the NHS” 2010 • GMC. Tomorrow’s Doctors. 2009

3. 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

4. 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

5. Aims and objectives AIM To 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. OBJECTIVES • 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

6. 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

7. 1) The Learning from carer session (20 mins)

8. 2) Hearing a carer story (60 mins)

9. 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

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

11. Educational theory – a modified Kolb Theory: lecture Reflecting: Presenting & questionning Interactive Planning: Hearing carer story Doing: Making the poster

12. Outputs

14. More money into respite centres Hobbies Friends & Family Increase pay for professional carers Care support packages Free time Self Help Finance Reducing Carer Distress Carers Allowance Increase time spent with & number of professional carers Samaritans & Other Charities Support Services Psychological support From GP & Mental Health team Advice Centres in Hospital Respite Centres e.g. Alan Shearer Centre Newcastle Carer Centre

17. Preparation for palliation – what, how and when Know who the main carer is Check understanding of carer and patient Tips on improving carer experience in hospital Carer - nurse liaison about care Dignity is paramount! Ensure all patient’s specific needs are met to assure carer “Kindness doesn’t cost a thing” Involvement in everything Transfers Decisions Events

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

20. Feedback- Free text comments about sessions Meeting the carers was very helpful to see their side of things rather than what the patients themselves go through Talking to carers gives unique experience Carers are integral to the health service – they deserve at least half a day 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 Being aware of support carer’s may need and they should feel part of a team Talking 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 Interesting to hear how an illness impacts on a family member, who has taken on a carer’s role Good to do presentations to make us think of more general aspects to caring 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

21. Feedback from carers At the time I couldn’t talk about caring- time helps, but makes me more determined than ever to get the message across They were really interested in what I have to say The students are very keen to learn- they ask questions throughout I know they’ve taken it on board by the posters they produce My story is quite relevant to making the future of care better You draw them into your life, making it personal It’s a nice experience- I’ll do anything to help them make it better The students come up afterwards and tell us their own stories Maybe, they’ve never considered these issues

22. 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

23. 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