Andrea Sutcliffe, Chief Inspector of Adult Social Care at the Care Quality Commission.
In the last week I have taken part in a Question Time Panel at the Carers UK national summit, answering questions and challenges from carers across the country; met with Judy Downey, Chair of the Relatives and Residents Association; joined families whose relatives with Learning Disabilities have spent time in Assessment and Treatment Units at a meeting organised by The Challenging Behaviour Foundation and Mencap; and caught up with John Beer, Chair of Action on Elder Abuse.
These are important conversations, vital for me to hear from people who have a lived experience of the care system or those who can speak on their behalf. It is vital because all these discussions keep me in touch with the issues people face using adult social care services and help to shape and influence what we do at CQC.
Out of these discussions, there were a number of common issues and learning points.
The first — and blindingly obvious to anyone directly affected — is how much of a battle people often have to go through to make sure their loved ones get the care and support they need. A fragmented system with health and social care arguing over budgets and responsibilities; assessments that don’t take account of the insight families can bring; providers who fail to respond appropriately when challenged. This experience is not universal but is all too common in the stories people shared with me in these recent meetings and over my two years in this role.
The second was the worry people have about raising concerns with public authorities and service providers for fear of reprisals. I talked about this in my weekly message with my staff at CQC and heard back from one who (despite knowing how the system works) had experienced similar problems and concerns.
The third was the reinforcement of the emotional toll and impact that caring for a loved one has on people and the fear of what could go wrong. One mother bravely shared the story of her daughter who had died in an Assessment and Treatment Unit and one of the fathers said:
“We all feel like we are on the same path but don’t want to end up in the same place.”
So what do we need to do about it?
The first is, just as we would expect people who are using services to be involved in the design and delivery of their care and support, so carers and family members should be recognised and valued as expert partners in the care of their loved ones. While respecting the rights of people using services, ignoring the valuable insight carers bring can undermine the effectiveness of the care and support provided.
Secondly, take time to understand where people are coming from — a moment to walk in their shoes. So if a father of someone with a learning disability is getting anxious or the daughter of an older person living with dementia is raising concerns, maybe even getting angry, think why. What would you be like if you were worried about someone you love? Don’t make assumptions but talk things through to really understand what is happening. Pippa Kelly has made this point more eloquently than I could in her recent blog.
And finally, for those of us at CQC or any other organisation that might be approached by someone raising concerns — never underestimate the effort and courage it takes to bring concerns to our attention. I have emphasised that we need to make every effort to talk to carers and families as well as people using services in the course of our inspection work and also to listen to them when they are giving us insight and information about a service.
Last night along with campaigners, clinicians, managers, politicians, CQC staff and friends, I attended the book launch of James Ticombe’s book, Joshua’s Story. I know this is an NHS story but as I have said before, the problems of Morecambe Bay Midwifery Unit, detailed in the Kirkup report published earlier this year have resonance for adult social care and indeed reflect the points I have raised in this blog. James and his wife were not listened to at the time of Joshua’s birth and subsequently James had to battle against every bit of the system to get justice.
It is a story that sadly could be written by so many others and it should never have to be this hard. But if we collectively agree to listen, learn and act — then the determination that James has shown to change the system for the better will benefit so many more in adult social care as well as the NHS.
Originally published at www.cqc.org.uk.