Tim Kelsey, NHS England’s National Director for Patients and Information, speaks out on the launch of Participation Guidance for commissioners.
THE most important goal of a modern health service is to achieve authentic patient participation: this is the central conclusion of the recent report into improving safety that the Prime Minister commissioned from Don Berwick, one of the wisest voices in global healthcare. The NHS should be ‘engaging, empowering and hearing patients and their carers throughout the whole system all the time’.
We shouldn’t need Mr Berwick, an American paediatrician and a leading Obama adviser, to remind us: the lessons of the Francis Inquiry into Stafford hospital and of every tragedy in the recent history of the NHS are that the absence of patient participation is the root cause of poor care.
Engaging, empowering, hearing, listening, responding: these are strategies that we have seen other industries such as banking, travel and retail use to sustain and improve the services they provide. And while we cannot compare those enterprises with healthcare, there is no doubt that we can follow their lead in transforming ways in which we listen and involve our patients, their carers and the public. In a time of unprecedented financial constraint, the NHS has to turn to its customers and their communities to become active partners in planning and managing their own care.
In July, every hospital trust in England published the first results of the Friends and Family Test (FFT), which provided unprecedented transparency into the quality of customer satisfaction with local A&E and inpatient services. The comments patients and carers now provide every day are an invaluable tool for the rapid and effective improvement of services on the ward.
Today we make another step towards an engaged, empowering health and care service with the launch of our Participation Guidance: “Transforming Participation in Health and Care” sets out a series of programmes designed to help the NHS meet the Berwick standard.
Key among these is that commissioners must now ensure that every person with a long-term illness or disability has a personalised care plan suited to their needs – to empower them to develop the knowledge, skills and confidence to take control of their own care. Patients will be able to access these online or on their mobile phone, if they want to and feedback direct to their clinician. Berwick notes the importance of patients and professionals ‘co-producing’ care: personalised care planning is key to that dynamic conversation.
Not everybody has easy access to the internet so we are launching a programme that will support 100,000 of the most disadvantaged in our society to learn how to access health information online, in partnership with the Tinder Foundation. This is one of the most significant initiatives to target inequality ever launched in the NHS.
In a different way, the new Guidance also invites patients to participate in directly improving the quality of clinical outcomes by recording them on a day by day basis – NHS England is to launch 20 initiatives in specialised services where patients will measure their outcomes and share them with their clinician and with other patients, if they choose to. The development of patient centred outcome measurement, such as those developed by organisations like Patients like Me in the US, is transformational: it puts the patient in control, improves outcomes and the effectiveness of service design.
Berwick gives priority not just to individual empowerment but also to collective engagement: how can citizens be meaningfully engaged in the design of local services? How can they properly hold commissioners to account? Among initiatives brought forward in the guidance is a commitment from NHS England to set up a new Citizens Assembly to create a national network that can hold it to account for services it provides – as well as help design them. And all commissioners will now be supported to publish how they have put patient and public participation at the heart of their decision making.
I have known Don Berwick for more than a decade: he has demonstrated over and over again in his writing and his activism that patient empowerment is synonymous with high quality care. In his report, he concludes: ‘The goal is not for patients to be the passive recipients of increased engagement, but rather to achieve a pervasive culture that welcomes authentic patient participation.’ That must be our objective for care in England.