Living with dementia magazine November 2011

This month Luke Bishop interviews Dame Jo Williams who chairs the Care Quality Commission (CQC), the regulator for health and social care in England

Formed just two years ago from the Healthcare Commission and the Commission for Social Care Inspection, the CQC has faced some challenging times.

Following the scandal at Winterbourne View, where an undercover journalist exposed care workers abusing people with learning difficulties, the CQC was criticised by the Health Select Committee for concentrating too much on registering services and not enough on inspection.

We spoke to Dame Jo about some of the difficulties encountered so far and some of the positive steps the CQC is taking to improve health, social and specialised dementia care.

What is the role of the CQC?

The CQC has been working for two-and-a-half years and we register hospitals and adult social care providers in either residential units or at home.

Once those organisations are registered we make sure that they are compliant with our 16 essential standards and if we find that there's a problem and they are not compliant we can take action. At first we might give them a deadline to change things. We could also issue a warning notice and we could, ultimately, stop them offering a service.

Does the CQC have sufficient powers of enforcement?

I do think we have the right powers and the ultimate for us is to make a notice of decision, as it's legally called, to suspend or close a service. These things are very complex and there's always a balance to be struck.

So, for instance, if we see poor practice and non-compliance with the essential standards, we would consider whether it puts people at risk or if it is a matter that can be addressed and compliance reached relatively quickly.

Sometimes closing a service - a residential nursing home for instance - can be very traumatising, particularly if it's not planned well and the people affected are not given the opportunity to engage in the search for a placement somewhere else.

What do you think excellence in dementia care looks like?

It's all the things we'd expect for people in terms of recognising them as a person - as an individual. One of the things I've seen when I've been around with inspections is where there's somebody in the home who has had additional training and they are sharing that with their colleagues.

Ideally everyone would get additional training but having someone who understands some of the issues is still beneficial. Alzheimer's Society have suggested all kinds of wonderful things - memory boxes, doors with lots of lovely pictures and memorabilia on and activities that people are stimulated through. People have also done wonderful things with gardens to make them interesting.

But most of all I think, fundamentally, it's treating people with compassion and dignity and I think the staff having some basic understanding of how dementia manifests itself so that they are not describing people as naughty or misinterpreting behaviour.

What can people with dementia, their carers and organisations such as Alzheimer's Society do to support effective regulation?

It's very challenging to really understand what the experience is. All one can say is that the observation tools are crucial to this but also our inspectors talk to carers because they're the ones who would notice if there was a change in behaviour that might be a result of inappropriate care.

The question I ask providers when I've been accompanying inspectors is, 'How do you know that at 3am people are getting the appropriate attention and care?' That's a challenge to providers developing their own quality assurance systems - ensure that people who may get up in the night are dealt with appropriately and kindly.

How would you take into account the views of carers and people with dementia?

Something we've been doing, particularly in relation to people with learning disabilities following on from Winterbourne View, and in a piece of work we've done in hospitals looking at dignity and nutrition, is something called Experts by Experience. These are people, or their family members, who have directly experienced services.

I think it's a model we want to keep developing. We had a contract with Age UK in relation to our hospital services and I think that organisations like Alzheimer's Society have the right people to help us develop a group of people who are experts [in dementia care] by experience.

Last month the CQC launched a new and improved website that allows service users to make sure that care providers are meeting essential standards. The new website also enables users to give feedback on their experiences of care. Visit www.cqc.org.uk for more information.