Building trust Involving Patients and Families Lucy Watson, Chair 6 February 2019

CQC Learning Candour & Accountability, Dec 2016 Families and carers not routinely told what their rights are when a relative dies Not routinely told what will happen or how they can access support or advocacy Extent to which families are involved in reviews and investigations varies considerably Families said they were not listened to and their involvement was tokenistic Overall the NHS underestimates the role families and carers can play in helping to fully understand what happened to the patient

Patients Association and complaints Helpline: 175 calls about complaints each quarter - highest number by type of call NHS failing to acknowledge the seriousness of concerns Challenges getting a full answer to concerns Timeliness Lack of action to learn and improve by NHS trusts Sense of despair from some complainants

Patient comments from complaints improvement work Not being believed and taken seriously: ‘We have checked our documents and have no record of this’. Not believing that there had been a proper and fair investigation: ‘It felt like they were closing ranks from the outset’ No ‘real’, sincere apology: ‘Don’t give me excuses, just say ‘We messed up, that was horrendous, we are really sorry’. No ‘real’ attempt to improve procedures: ‘There’s no plan in place to improve things’. Emotional impact not understood or responded to: ‘The patient information was wrong and this led to the most traumatic two hours of my life as I was being cut in half and not sure I was the right patient but they just seemed to see it as an ‘admin problem’.

Challenges for families in finding out what went wrong Families and carers often have a poor experience of investigations They are not treated consistently with respect and sensitivity and honesty Despite Trusts having policies that say they value involvement Investigations are often of a poor quality and do not address patient concerns Too often the NHS becomes defensive in its response to families and carers

Building Trust with Families Duty of Candour and an apology is the start Families are given support and help to put right the wrong caused by the harm they have been subjected to Patients fully involved in investigations, there is a fair and expert investigation and their questions are answered When this culture and approach is in place most complaints can be resolved Reduction in litigation

About the Patients Association Our vision Our vision is that health and social care will be delivered in a way that meet every person’s health and care needs. Our mission Our mission is to give effect to the patient voice, to improve patient experience and support people to engage fully in their own care.