Transforming Participation in CKD Rachel Gair Person Centred Care Facilitator The Passive Patient • Healthcare can be profoundly disempowering • But most patients want to be treated as active participants – as co-producers of health. Chronic Kidney Disease National Programme | Rachel Gair | 2 To a person centred approach… Chronic Kidney Disease National Programme | Rachel Gair | 3 Co-producing health Chronic Kidney Disease National Programme | Rachel Gair | 4 Doctors’ and Patients’ Priorities Sepucha et al. (2008). Pt Education and Counseling. 73:504-10 Chronic Kidney Disease National Programme | Rachel Gair | 5 Patients’ Goals may be Different from Clinicians’ Goals To better manage my pain relief so I don’t wake up at night To stay in my own home as long as possible To stop taking anti-depressants because I don’t like the side-effects To learn how to cook healthy meals that the whole family will enjoy To have the same person caring for me from 9am to 3pm so my parents can go to work To receive end-of-life care at the hospice close to where my sister lives Source: Coalition for Collaborative Care. Personalised care and support planning handbook. NHS England 2015 Chronic Kidney Disease National Programme | Rachel Gair | 6 Day to day decision making: self management Self management = 8750-55 in a year Hours with NHS / social care professional = 5-10 in a year Chronic Kidney Disease National Programme | Rachel Gair | 7 So… The system should work in partnership with people with LTCs in order to support them to develop the knowledge, skills and confidence to manage their own health and healthcare Chronic Kidney Disease National Programme | Rachel Gair | 8 Background NHS England is required by the NHS Mandate ‘to ensure the NHS becomes dramatically better at involving patients and their carers, and empowering them to manage and make decisions about their own care and treatment’. Chronic Kidney Disease National Programme | Rachel Gair | 9 Five Year Forward View - NHSE To achieve this, the NHS Five Year Forward View sets out how the health services needs to place emphasis on: • a more engaged relationship with patients and communities • promoting well-being and preventing ill-health • supporting people to manage their own health and care One way of doing this is to try different approaches and find which work best. This is why the TP-CKD programme has been set up by NHS England and the UK Renal Registry. Chronic Kidney Disease National Programme | Rachel Gair | 10