i can issue 2

Working together

Dr Anna Gregor

Cancer services in the UK are at the centre of the NHS modernisation programme, and getting patients involved is a key part of the agenda – but making it happen is easier said than done.

Involvement in clinical decisions needs patients to be truly informed about their choices. They must be given time to consider them, and have their decisions respected by healthcare professionals – whose own communication skills could be improved as part of their training.

Lack of time is the biggest problem but consistency of information, agreement on who in the multidisciplinary team does what and alternative sources of relevant information with assured quality would be great improvements.

At the other end of the spectrum is patients' and the general public's involvement in policy. The various strategies used in the past have rarely worked as a partnership. Statutory 'professional patient representatives' or the voluntary sector acting as advocates do bring in an external voice but cannot provide a direct connection between users and their local services. Patient representatives have to overcome the complexity of organisational arrangements and practices. Professional language and rituals makes this even harder. Mentoring, translation services, networking of patient representatives and updates on process can all help. But change will only come from a better understanding of one another's roles and responsibilities.

Another route for patients to help improve services is to get involved in cancer networks. These have representatives from all clinical specialties, from primary and acute care, and from among managers, audit staff and so on. But even a confident patient representative might find this array of people intimidating, especially if some of those present were or still are involved in the patient's own care. Patients also find problems with the terminology and agendas, as well as the physical and financial demands on their time and energy. Professionals are not always happy to have patients attend meetings, and doctors also have concerns. They worry about matters such as confidentiality, admitting to uncertainty or their own vulnerability when making difficult choices, and demands and expectations that cannot be met.

Most of these concerns disappear, however, when it becomes clear that we have the same aims. The experience of the Clinical Standards Board for Scotland in developing standards and testing services highlighted the commitment to work together, the value of a different perspective and the power that users have when difficult decisions need to be resolved.

A lot of practical issues must be addressed, from training volunteers to finding a balance for everyone's needs. Tackling the problems by making it someone's job is a start, and encouraging patients is another step. Working together can create and sustain cancer services we can all be proud of.

Anna Gregor
Lead Clinician for Cancer in Scotland