Summary
Breast Cancer Care identified particular needs for younger women with secondary breast cancer which were not being addressed, and in 2014 piloted a residential two-day event for this group in London. Thirty-seven women attended and evaluation feedback was overwhelmingly positive. In-depth follow-up demonstrated that the event had a very significant impact on the attendees and many had changed their behaviour or made other changes in their lives as a direct result. The event was run for a second time in 2015 in Manchester. Every client who attended said they would recommend the service to others. Breast Cancer Care has now committed to delivering this event annually.Challenge
In 2002, Breast Cancer Care developed a residential event for women aged 45 and under, going through a diagnosis of breast cancer. These events have run up to seven times a year since then and hundreds of women have attended. Initially the events were open to women with both a primary and a secondary (incurable) diagnosis. Evaluation soon showed however that women with metastatic breast cancer were always in the minority, felt inhibited in discussions because they did not want to frighten the women with primary cancer, and that the information and support on offer were not effectively meeting their needs. This meant women with secondaries were encouraged to access other Breast Cancer Care services such as Living with Secondary Breast Cancer meet-ups and our online discussion forums – but unmet needs remained. These included feelings of isolation, preparing children for the future, working with a diagnosis of a life-limiting illness and the impact on current and potential relationships.
Objectives
To reduce isolation by providing participants with a chance to meet and talk to others in a similar situation. To provide participants with young children the opportunity to discuss the practical and emotional issues this raises. To offer a chance to explore feelings about their changed future (including goals, ambitions and loss of opportunity to have children). To offer the opportunity to discuss the side effects of treatments, their impact on daily life and relationships and how these might be managed.
Solution
Breast Cancer Care, with the input of women from the target client group, designed a two-day residential event for 30-40 women aged 45 and under who are living with a diagnosis of secondary (metastatic) breast cancer. The programme for the first event was developed in close consultation with potential clients particularly around the topics that would be covered. However, we also explored the practicalities of attending an event far from home for people with a metastatic cancer diagnosis and what information they would and would not want to share with other participants. Central London was chosen for the first event as being the most accessible location for participants from across the UK. The venue had to be easy to get to and affordable for the charity but also needed to be comfortable for women who might be experiencing fatigue or pain as a result of their cancer or its treatment. In recognition of the expected emotional impact on clients we arranged to have an experienced therapist available throughout the event as well as our breast care nurses with specialisms in younger women and metastatic breast cancer. We have established links with breast care nurses across the UK and worked with them to ensure eligible participants were told about the event. It was also promoted via the younger women’s breast cancer network on Facebook. Promotion began two months prior to the event in recognition of the fact that clients with this diagnosis can find it hard to plan too far in advance due to variability in their health.
Results
In all, 37 women attended the pilot in 2014 and 35 attended in year two. Overall 98% said they would recommend the event. 90% of those who completed an evaluation form said they felt less isolated as a result of attending and most felt that they had had the opportunity to discuss their concerns and feelings. nt to 22 per cent.
Learnings
Patients reported considerable learning gained at the event. A view widely reported by respondents to follow-up interviews and surveys was that they had learned a lot about new drugs and various trials and research being done in the area of secondary breast cancer. Attendees felt this information had a positive emotional impact.
Evaluation
Participants completed evaluation forms at the end of the 2014 event and were then followed up around two months later and invited to take part in a semi-structured interview over the phone or complete an online survey. These enabled the team to change the model for the future – for example, by creating a better balanced programme to avoid information overload. The end of event evaluation form was revised in year two to better capture some of the information about what women planned to do differently. Breast Cancer Care has committed to making this an annual event with 30-40 places available each year for women who have not previously attended.
