Living with and beyond cancer focus group 3

Wye Valley NHS Trust, Macmillan Cancer Support and Healthwatch Herefordshire held a follow-up focus group on 28 November 2019 to update participants on how feedback from earlier cancer focus groups had influenced the Living With and Beyond Cancer (LW&BC) programme. Eight members of the public attended and took part in discussions about the development of cancer support services in Herefordshire.

The session began with an update on progress made during the first year of the LW&BC programme. Participants were informed that Holistic Needs Assessments had been introduced or were about to be introduced across eight clinical teams. These assessments were designed to identify patients' physical, emotional, practical, social and spiritual needs throughout their cancer journey and were to be supported by four new Cancer Support Workers. 

The programme had also begun developing personalised Treatment Summaries for patients completing primary cancer treatment. These summaries were intended to provide patients and GPs with accessible information about diagnosis, treatment, self-management and future care plans. Initial trials were planned within lung, prostatectomy and haematology services. 

Work had also been undertaken to improve Cancer Care Reviews in primary care. The programme was piloting a new model involving GP practices, social prescribing services and Taurus Healthcare to explore whether some aspects of cancer follow-up support could be delivered through social prescribing services alongside GP support. 

Several health and wellbeing initiatives had been introduced in response to patient feedback. These included the Moving Forward breast cancer recovery course, a self-help programme for people living with and beyond cancer and their relatives, a health and wellbeing event attended by around 70 people, an exercise referral scheme delivered in partnership with Halo Leisure, and dedicated physiotherapy and dietetic services for cancer patients. Additional investment had also been secured to provide advanced communication skills training for cancer nurses and to explore cancer-specific counselling provision. 

During the workshop section, participants discussed ways of improving attendance at patient and carer support groups. The most strongly supported theme was the need for practical support and information rather than sessions focused solely on discussing cancer. Participants wanted clearer information about support groups before attending, practical advice, predictable content and activities that went beyond cancer-related discussion. This theme received the highest number of votes.

Participants also highlighted the importance of flexibility, including offering groups at different times and locations, improving promotion and awareness, and ensuring people knew what support groups were available. Transport, affordable parking and venues outside clinical settings were also identified as important factors affecting attendance. Suggestions included online participation options, telehealth access, buddy schemes for new attendees and patient-led groups supported by peer networks.

The second workshop question explored what patients would like included in their discharge letters or treatment summaries. Participants prioritised clear follow-up information, including details of future appointments, surveillance plans, signs of recurrence, care instructions and management of ongoing physical, mental and social needs. This was the highest-rated category. 

Participants also wanted comprehensive contact information, including details of who to contact if symptoms returned, how to access urgent support, out-of-hours contacts and information about professionals involved in their future care. Other priorities included medication information, management plans, details of ongoing monitoring and tests, support service referrals, lifestyle advice and information about potential treatment side effects and complications. 

Overall, the focus group demonstrated that previous public feedback had directly influenced the development of cancer support services in Herefordshire. Participants welcomed progress made by the LW&BC programme and continued to emphasise the importance of coordinated support, clear communication, practical advice, accessible support groups and comprehensive information to help people live well after cancer treatment.