Shared decision making

Timing and impact

It was evident from feedback that many experienced significant shock or trauma on receiving a cancer diagnosis. In fact, one cannot underestimate the challenges some people reported in coming to terms with a diagnosis. A significant number of people reported the relief experienced by receiving the letter as it helped consolidate the information they had been given at diagnosis, helping them process their diagnosis and understand their results and how decisions had been made about their future care and treatment.

For those awaiting results (typically scan results), the timing of the letter was of utmost importance. People spoke of the relief they felt if their letter was received in a reasonable timeframe, saying that it brought a deep sense of reassurance. One person said they had to be proactive in seeking out results if the letter did not arrive in time and another described how receiving their letter was particularly welcome due to issues contacting their GP.

Language and accessibility

In most cases, feedback confirmed that the letter was clear, concise and easy to understand, and was a support to people in talking to loved ones about their condition and treatment plan. One person highlighted the need for accuracy, especially in terms of projected timescales for when they would be scheduled for their next scan or diagnostic procedure. With current service pressures, this can be difficult to achieve but the need to set more likely and achievable timescales was important.

Almost all people observed that the language in letters, if directed to them, tended to be very clear. However, those who received a copy of a letter that was directed to another medical professional (for example, GP) did report greater concerns about the language and, in most cases, it was referred to as being 'jargonistic', making it more challenging to understand. However, some people noted that any of the information that was difficult to understand, or required further explanation, they were generally able to get during face-to-face appointments.

Decision making

There was a range of responses to this question, indicating a mixed level of involvement in decision making. Some indicated they just placed their faith in the expertise of those treating them. One person described the letter as a confirmation of decisions they had already made, but that the letter helped them feel involved in their care plan and this was important to them. Some letters however raised concerns about the wording ("letter said my operation was classed as 'major' and I was imagining a really long and complicated procedure"), but a follow-up conversation with the clinical team provided reassurance. One person did report having no involvement in decision making, saying, "The letter did not help in this regard. All decisions about my care were made without my input".

Support

Overwhelmingly, people noted the immense support that was provided by the clinical nurse specialist (CNS) to resolve any issues or concerns. Prompt reaction to queries and requests meant that people felt less anxious, and it emerged that the CNS was clearly the go-to person for concerns or complaints. Often this point of contact was critical due to the current difficulties in accessing GP services coupled with "issues of privacy when speaking to the receptionist and also difficulties getting appointments".

Further feedback

At the end of each interview, an opportunity was given to people to talk about anything else they felt was relevant to the conversation, that they may have missed in previous sections. It was one way of eliciting any suggestions they may have for improvements to any aspect of the letter writing process.