No decision about me without me: making it happen

In his speech at UCLH on 26 May, the Deputy Prime Minister Nick Clegg laid out his vision for the NHS. Some might argue that he should have waited for the listening exercise to finish before making his pronouncements. The cynics may say that the timing of his comments was driven more by internal Liberal Democrat politics than by anything to do with the pause. That said, a number of his comments are worthy of further exploration.

'We know', he said, 'that when people get involved in their care they get better results, and they manage long-term conditions more successfully too'. He went on to acknowledge that there are areas where the NHS needs to improve, for instance ensuring that asthmatic and diabetic patients get the right support to manage their condition to avoid both the human and financial cost of ending up in A&E.

This goes right to the heart of the debate about choice and competition, among the most contentious parts of the Health and Social Care Bill, and one of the main reasons why the government is struggling to bring people with it.

Instead of coming across as if competition between providers was the be-all and end-all, the government should have been promoting patient choice as the endgame. In that context many more people might have been supportive of at least limited provider competition as one means of ensuring that choice was available. 

The government’s other mistake has been to promote an overly simplistic notion of choice. Seeking healthcare is not like deciding to buy a washing machine. It's so rarely a one-off decision; it's not amenable to a simple list of comparative costs and benefits; and above all is a decision made so often under intense emotional pressure.

The NHS needs to transform the way it helps people make choices about how they look after their health, what tests and treatments they have and how their care is provided. For many years, the NHS has said to patients 'This is what we’re going to do to you'. But that isn’t choice. It’s not 'no decision about me without me'.

A system that offers true choice supports everyone to make good daily choices about their health. And, if people need more help and advice, it's about helping people with the choices about what sort of healthcare they need, whether to have diagnostic tests, and what type of treatment would suit them.

True choice is not only about choice of GP and choice of hospital, but also about the time and location of care, and the individual’s preferred way of getting advice and support – whether it suits them to reach the NHS online, on the phone or in person. And it’s about having the choice to manage your own long-term condition the way you want, with the support in place to let you do this safely. So not only is this better for you, but it relieves pressure on the health service too.

All of these are choices that matter and that people want. When people are able to exercise these choices they become full participants in their own health, citizens instead of patients. In the long term, supporting people to be active participants in these choices about their health improves opportunities and life chances for all, as well as improving the efficiency and quality of the NHS.

That's why we are asking the government to make three key changes to the Health and Social Care Bill to put patients centre stage and create an NHS with the principle of 'no decision about me without me' at its heart:

1. include a revised and expanded definition of choice
2. include a new duty which encompasses this broader definition of choice
3. include a requirement to ensure the dignity, privacy and independence of service users.

Let’s hope the government acts on what it has heard during its listening exercise and gives patients the true choice they want. 

Stephen is Chief Executive of the Health Foundation.