By the end of 2008, people with long-term conditions should leave GP surgeries and hospitals clutching not one prescription but two: one for their medicines and another for the information and support they need.
Macmillan hopes they will not only stop in at their local pharmacy but also pop in to their local information and support service to speak to someone trained in giving advice and guidance about their condition.
The Department of Health pledged in 2006 to roll out information prescriptions for everyone with a long-term condition by 2008. It began by supporting 20 pilot sites offering information prescriptions for patients with a variety of long-term conditions. Macmillan and Cancerbackup (which merged with Macmillan in April 2008) took part in four of the pilot sites.
The pilots found to be most effective by the final evaluation report were those where health professionals and users worked together to create local information prescription systems. This was achieved by asking people about their information and support needs during consultations with healthcare professionals and directing them to further sources of face-to-face, telephone, online and written information.
Not enough choices
Yet despite the pilot sites' exciting and innovative work, if the Department of Health does not produce incentives and strong guidance for information prescriptions, then local commissioners might just use NHS Choices as a shortcut to delivering them, a solution heavily plugged in the department's response to the recommendations of the final evaluation report. So far, there are no plans to introduce incentives for information prescriptions in the quality and outcomes framework or the payment by results tariff.
Log on to NHS Choices and you can create an information prescription for different diseases, including coronary heart disease, diabetes and dementia. Tick a selection of boxes to choose information on different topics, including diagnosis, treatments and advice about living with the condition. Add in a postcode and a list of local services ranging from GPs to sport and fitness centres will be added to your prescription. Typically, the result is a four or five-page PDF document with web links to further sources of information, including links to voluntary sector websites. It is also available to print.
All this is OK if you are web savvy and have access to a printer but not so helpful if you do not understand what some of the treatments or interventions are in the first place, need a bit more help understanding the financial support system, or do not read English. Granted, the 2008 deadline has not passed yet, but the Department of Health's current solution to an innovative idea lacks teeth.
Macmillan wants information prescriptions to be more than just a tick-box, web-based exercise. We want people with cancer and their carers to develop their information prescriptions in consultation with a health or social care professional. They must be personalised and allow patients to select the topics that interest them, plus provide space for patients or healthcare professionals to make notes or draw pictures, which can be helpful in explaining a diagnosis. People with cancer should be offered a personalised information prescription at key points in their patient journey, starting with diagnosis.
Once the information prescription is issued, people should be offered options of how and when they would like to access information. For example, some people may wish to read information and then discuss it by telephone, email or face to face. Others will need help to understand the information provided from the outset, such as the benefits system, which can be complex to understand. These are some of the key principles that the Department of Health should enshrine in information prescription guidance.
Though we are pleased that the Department of Health has recognised the importance of information and support by developing information prescriptions, there is a real danger that people with cancer and other long-term conditions will not receive high-quality information prescriptions if trusts and GPs are not rewarded for providing them. The reliance on NHS Choices runs the risk of missing the opportunity to embed the provision of information and support in local services, and the chance to put such support on a par with drugs and treatments.