Providing people with information at diagnosis and on an ongoing basis as appropriate to their needs and wishes.

Section six covers three main areas:

Assessing information needs of individuals and their carers
Effectively providing relevant information to people at diagnosis and throughout the care pathway
Helping people to make decisions about their care

Note: It is important to remember that not all individuals will have a diagnosis of a specific condition, but may still have information needs relating to managing symptoms, living with these symptoms and about possible treatments and procedures to alleviate the symptoms (pain, tremor etc.) The ongoing information needs are likely to be very similar to those of people with a diagnosis.

Assessing information needs of individuals and their carers

  • It is important to find out from people what level and type of information they require (for instance a query about what a particular procedure or test involves could be answered by providing a detailed description of the procedure accompanied by anatomical drawings, or by telling the person how they should prepare for the procedure or test, or by explaining what the likely clinical outcomes could be, or by telling them how long they may need to be in the hospital / off work afterwards etc.).
  • Individual information needs should be checked at least once in every consultation. It is often helpful to ask people at the beginning and the end of a consultation what they understand about their condition or treatment and whether they have any questions.
  • Information needs should be recorded in an individual’s notes along with a note of what information was given. This can help to avoid duplication or contradiction and can aid reinforcement when required.
  • Most people will welcome having a list of possible questions to ask in advance – we have prepared some questions that people might use - Resource Page Six. 
  • It is crucial to take into account the characteristics of a person when assessing information needs and the best means of providing this, but avoid making assumptions. It is always better to ask people what they want to know.
  • Carers may also want to ask questions and may need a separate time to do so.