Patient Engagement: The Renal Experience Eileen McBrearty

 A quality service focuses on Person-Centred Care and Support (National Standards for Safer Better Healthcare 2012).  This takes into account the needs and preferences of service users and involves service users.  It means having the patient voice heard at every level of service.  The goal is for patient partnership in their own care and in the processes of designing and delivering care.

Patient Engagement refers to:  The knowledge, skills, ability and willingness of patients to manage their own health and care.  The culture of the health care organization that prioritizes and supports patient engagement.  The active collaboration between patients and providers to design, manage and achieve health outcomes.  A growing body of evidence clearly shows that patients who engage with their health care providers have much better clinical outcomes and that health care organizations that emphasize patient engagement can improve productivity and patient satisfaction.

 This initiative was designed to complement existing patient consultation, to be part of the HIQA focus on patient safety and other quality initiatives.  Recommendation from NHS reports – patients should be present and involved at all levels of healthcare organisations.  New approach for participating staff to enhance facilitation and listening skills.

Why Patient Engagement in Renal?  For Our Patient:  To hear from patients about the renal service they receive in Beaumont Hospital.  To listen to patients in a different environment where staff and patients are more equal partners, where every opinion counts.  To give the patient a “voice”  For patients to share and exchange experiences of the hospital and renal journey.  In order to improve this patient experience and quality of care.  To give a different angle on care delivered and received.

For Our Staff  To listen and learn from patients and their family experiences of the service in Beaumont Hospital.  To reach a fuller understanding of the patient journey from the patient perspective.  To gain a baseline of the renal service from the viewpoint of our patients, their families and the community groups.  To energise and motivate staff.

 For advocacy and community groups to hear feedback from the patient and family, with these aim to improve patient care/their service.  Beaumont Hospital is committed to patient engagement and learning from patients experiences.  It is a priority for Beaumont Hospital at a strategic level.  Information shared will be used in the road mapping and development of future TUN service.

When it all began….  Our first Patient Engagement meeting on July 22 nd 2014  Committee members:  Petrina Donnelly DNM, Veronica Francis CNM3 Haemodialysis,  Angela Bagnall Mary T Murphy Eileen McBrearty -Patient Care Co-ordinators  Oonagh Smith Dietician Marion Stacey St Peters ward  Transplant Co-ordinators Abi Armstrong Home Therapies  Olive McEnroe and Ruth O’Malley -Ambulatory Care Nurses  Catherine Mulcahy Eileen Linehan - Clerical support  Margaret Hanna Nurse Counsellor Dr Colm Magee Consultant Nephrologist

 What is good  How we could improve  Patient/Family/Community ideas suggested  Patient selection divided into 5 modalities and letters of invite sent.  Date set for 20th October 2014  Consultation and Support of Quality and Standards, Learning & Development and Organisational Development Departments.  Briefing session with facilitators and renal staff week before.  Debriefing session held with MDT the week of workshop.

What did we expect?  Expected criticism of the health services, of the hospital & the directorate  Expected some negativity  Expected transport issues to dominate  Concern about staff reaction to the feedback  Expected some positives given the strength of the relationship between patients & staff over a long period  Expected the feedback to be more confined to TUN directorate

On the day  38 patients and families on the day  Advocacy group, Satellite Haemodialysis and PHNs from the community  Senior management attended on the day and TUN MDT including:  Catering, HCA, Chaplaincy, Pharmacy, OT, Physio, Medical, Nursing and Patient Representatives office

 Facilitator and scribe at each table  Graphic artist capturing discussions and depicting same on posters  Informal environment established  MDT staff where possible did not sit at table of the area they worked in.

 3 conversations held relating to the experience of the service:  Before you came into hospital:  Experience during your stay in hospital  What it was like on leaving the hospital and aftercare

Pre hospital experience  Access to treatment  Access to health care professionals  Waiting times  Provision of Information  Participation in self care  Any other areas which patients feel are important

Patient and family experience in Beaumont  Reflecting the entire journey  Communication  Participation in self care  Diagnostics  Catering  Confidentiality  Dignity and Respect  Privacy

Discharge from Beaumont  Patient participation and self care  Information given to patient/family  Follow up post discharge  Services provided  Links to other services

What we got on the Day?  Extremely energised, relaxed, feel-good vibe in the room, great openness, positive buzz in the room.  Incredible turnout of patients, family and MDT staff.  Well supported by Senior Management & Medical Leadership.  Buzzing conversations at every table.

Before coming into hospital  Beaumont books, website and videos very useful, be aware of presumed knowledge  Buddy system  Renal Day Care great service  Streamlining processes/workup,  OPD waiting times and transplant waiting times  Communication – mixed feedback, IKA great resource  “GP’s don’t understand renal”, slow referrals to Nephrology

Experience during stay in hospital  Felt well supported and safe and sense of being cared for  Good education, questions encouraged  Accessing renal service directly in Beaumont could be frustrating, use of regional hospital or ED can be difficult  Food – could be improved, difficult on renal diet  Car parking very expensive  Magic curtain of silence  Environmental  Medical jargon  Hardworking staff with low turnover, consistency key for CKD population  Emotional support

What it was like on leaving the hospital and aftercare  “felt at sea”, “alone”  No PHN follow up  Good information given  Family aware of supports available, out of hours telephone service  Community physio wait times  Being aware of medication changes  Renal Day Care fantastic service  Rejection episodes frightening

Themes Emerging:  Community/Hospital interface: need for greater engagement & education for GPs & PHNs  Earlier referrals  Self Care: improving empowerment of patient & family, Buddy System  Access to Information and Education  Communication  Importance of Emotional Support  Transport and parking issue

What I learned on the day Renal family –they are strong relationships I learned today that everything I have felt and still feel is normal I’m not living with dialysis, dialysis is living with me Each person has their own journey and we need to come together as community, patient to patient

What I learned on the day More information to GPs The nursing staff are brilliant Parking is an issue Reiterate the importance of open communication, education, in building rapport in helping to manage patients and families anxieties

What can I do differently after today  Keep positive, emphasise what a person CAN do  Nutrition – Review catering menu in hospital  Increase Peer support – give as much support to each other as possible, allow patients to network  Importance of Communication – good communication is vital throughout the journey, need to treat patients as individuals

 Post discharge – build better links with the community, identify point of contact for donors post discharge to home  Education and Information - more engagement days/ value of education workshops run, the importance of self care  Recognise the dynamic backgrounds of patients and variety of feelings  Importance of listening and good communication

Since then……  TUN:  Nutrition: link in with catering, Nutrition workshop, rerun cooking evenings  Education: increased our education workshops to 4 a year, rerunning transplant information evening, planning an overview of our education pathway next year  Peer Support network to be enhanced  Beaumont:  Put forward CKD education for the GP Education Day January 2015  Aim to improve PHN links and resolve issues, suggested PHN Education Day for 2015  Raised the car parking issue to management

Feedback to Patients/ Staff  Display of posters in the hospital  Letters of feedback to patients  Attend staff meetings/wards to update on workshop and future developments  Raise awareness