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

2. 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

3. 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

4. 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’.

5. 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

6. 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

7. 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.