Duleep Allirajah on making patients' voices heard

Effective commissioning, we are repeatedly reminded, is one of the key change levers in the brave new 'self-improving NHS'. I have lost count of the number of Powerpoint presentations I have seen which have used that ubiquitous four-pronged NHS reform diagram to illustrate how commissioning, alongside 'choice and voice', will drive up quality from the supply side.

We are also told, in the Commissioning Framework for Health and Well-Being, that 'when people get involved and use their voice, they can shape improvements in provision and contribute to greater fairness in service use'. All well and good, but what are primary care trusts actually doing to strengthen the patient voice in commissioning?

Macmillan Cancer Support decided to investigate. A scoping study carried out for us earlier this year found that little consideration has been given as to how best to involve patients in commissioning. While PCTs have been consulting service users on certain aspects of commissioning, these initiatives are rarely documented or evaluated, best practice is not shared, and there is a dearth of published research literature.

Most trusts are still in the process of bedding down after the latest reconfiguration and, consequently, user involvement is not seen as a high priority. This is confirmed by the recent Picker Institute Europe report on public and patient involvement in commissioning, which found that, while some trusts have ambitious PPI plans, 'many are not ready for the new challenges that confront them' and that there is 'a widespread deficit in skills, experience and confidence in carrying out this work'.

Obstacle or opportunity?

There are two ways of viewing user involvement. First, as an irritating obligation; a box that needs to be ticked. Alternatively, it could be seen as a powerful mechanism for ensuring that health services are responsive to patients' needs and for holding commissioners to account. However, if PCTs want PPI to work as a service improvement lever, they need to give serious though to how, where and when to engage service users.

Commissioning is a complex process that involves a wide range of decisions. So, where in the process should patients be engaged? Planning and customer feedback might seem the obvious places. The Picker Institute survey shows most PPI activity has been concentrated in the planning stage, notably in designing services, whereas there has been relatively little user involvement in managing provider performance.

However, we think that the patient voice should be embedded throughout the commissioning cycle – planning, tendering, choosing providers, procurement, monitoring performance and evaluation. PCTs need to start thinking imaginatively about where in the process patients can be most fruitfully involved. The first step is to break out of the mindset that patients are just a 'collection of problems' and start to see them as potential partners in developing creative solutions.

One of the fundamental issues that PCTs will need to address is ensuring that there are sufficient users willing and able to get involved. Macmillan's experience of supporting user involvement has taught us that patients should not be taken for granted. User groups in cancer networks tell us that they have problems recruiting users and complain that too many demands are made of individuals. Commissioners need to anticipate these problems by developing recruitment strategies, including strategies for engaging hard-to-reach groups, as well as imaginative forms of involvement to minimise burn-out.

There also needs to be a proper infrastructure in place to support user involvement. This means training programmes to enable users to understand the complexities of commissioning and equip PCT staff with the right skills to support users. It hardly inspires confidence to read that 10 per cent of the trusts surveyed by the Picker Institute do not even have a dedicated PPI budget.

The commissioning framework requires PCTs to get much better at shaping and holding to account an increasingly pluralistic healthcare market. The Department of Health also wants trusts to move away from their old focus on volume and price and instead start commissioning 'for quality and outcomes'.

But, as trusts grapple with the demands of the new framework, there is a risk that PPI will end up being just an afterthought, something that will take care of itself once local involvement networks are up and running. This would be a big mistake. Patient involvement must be planned, prioritised and properly resourced or else it will end up being tokenistic and ineffectual.