Dr Paul Paes Consultant/ 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 processes 2 1.DH “Our Health Our Care Our Say” 2006 “Equity and Excellence: Liberating the NHS” 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 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 1)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

Carers Allowance Self Help Finance Hobbies More money into respite centres Newcastle Carer Centre Reducing Carer Distress Care support packages Increase pay for professional carers Respite Centres e.g. Alan Shearer Centre Psychological support From 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 on improving carer experience in hospital Dignity is paramount! Preparation for palliation – what, how and when Involvement in everything Decisions Events 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”

Top Tips for Improving Communication with Carers Consultation on decisions Regular contact with same HCPs/ Continuity of care Treat carers with respect Contact at convenient times Put in touch with volunteering organisations/ support groups Help accessing financial support Inform about progress and plans Direct contact numbers for different HCPs Home visits Adequate literature Effective inter professional communication Post diagnosis counselling and explanation

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 day 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 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