Dying Matters and Carers Matter

Andrea Sutcliffe, Chief Inspector of Adult Social Care at the Care Quality Commission.

Last Monday I had the great privilege of participating in the Dying Matters Big Conversation debate chaired by Fiona Glover from the BBC.

A privilege because I witnessed the West End world premiere of Josh’s Story — a monologue written by Brian Daniels, performed by Joey Daniel-Tay and inspired by Josh and his mum Lynn Crawley.

Huge thanks Brian Daniels for giving Josh his voice and to Joey for playing our inspirational boy @DyingMatters pic.twitter.com/0GqvP6cBOq
— Lynn Cawley (@lynnc_61) 11 May 2016

It was also the day we launched CQC’s report into inequalities in end of life care highlighting the discrimination many different groups face. I know I may be biased but it is an impressive piece of work with the main report supplemented by good practice case studies and individual leaflets giving voice to people affected by the issues we raised. You can see Lynn and my colleague Professor Steve Field talking about the report in this BBC clip.

The debate explored lots of different themes including the power of human stories and the arts “to illuminate the conversations we need to have” (a great quote from fellow panellist Dr Sam Guglani); how the media reports on death and dying; and the impact of terminal illness and bereavement on families and carers.

Carers Matter

This last point had particular resonance for me as the struggles that carers and family members face in our health and social care system seem to take up more and more of my time, as a blog earlier this year explained.

Carers UK published their annual State of Caring last week highlighting that one year on from the implementation of the Care Act carers “are still struggling to get the support they need to care well, maintain their own health, balance work and care, and have a life of their own outside of caring”. Such a state of affairs is made even worse when carers are worried about the support their loved ones are receiving.

I regularly receive concerns from family members that they are ignored, not welcomed and face restrictions if they raise concerns about the care their loved ones receive.

It is not acceptable for care providers to treat family members and carers like this. Our regulations make it clear that services should support positive relations with the families and carers of the people using their service, for example:

  • “People’s relationships with their visitors, carer, friends, family or relevant other persons should be respected and privacy maintained as far as reasonably practicable during visits.” Regulation 10(2)(a)
  • “Providers must actively seek the views of people who use their service and those lawfully acting on their behalf, about how care and treatment meets their needs. Providers must be able to demonstrate that they took action in response to any feedback.” Regulation 9(3)(f)

But too often, this does not happen or people are too afraid of the consequences to raise concerns when they are worried. I have been in conversation with the campaigning group Your Voice Matters about developing information to share with families and providers about their rights and provider’s responsibilities, which I hope will help.

John’s Campaign

But frankly, it should not need the regulator to set these requirements out — providers should recognise and embrace the valuable role that carers and family members can play in the care and support of their loved ones. This idea is at the heart of John’s Campaign — inspired by the very powerful article written by Nicci Gerrard in The Observer 18 months ago. She eloquently describes the confusion and distress her father experienced as a hospital in-patient which would have been so easily alleviated by a more positive attitude to the contribution she could have made to his care and support.

Together with Julia Jones, Nicci has championed the cause through John’s Campaign encouraging all hospitals to sign up to welcoming carers, not least in enabling unrestricted visiting hours. Last week Nicci and Julia came into CQC to meet with Chief Inspector of Hospitals, Professor Sir Mike Richards and me to discuss how we could help to make their vision a reality. It was a great meeting and Mike committed to looking at how his team could incorporate ‎the principles of John’s Campaign into hospital inspections.

While the focus has been on hospitals for John’s Campaign, the principles read across into care homes too. Our residential inspections already include key lines of enquiry and prompts that promote the role of carers — for example one of our key lines of enquiries asks whether people’s relatives and friends are able to visit without being unnecessarily restricted. This will continue to be an important focus for us.

Next steps

As we review during 2016 what we have learnt from the first round of comprehensive inspections, I am committed to ensuring that we consider both the lessons from our review of end of life care but also the experiences and suggestions that campaigners like Your Voice Matters and John’s Campaign share with us. We need to make sure that we are clear about our expectations and the action we will take when they are not met. But even more importantly, providers and their staff need to do this for the benefit of the people they support not just to please the regulator. That way good quality care is more sustainable and reliable which is surely what everyone wants.


Originally published at www.cqc.org.uk.