Living with and beyond cancer focus group 1

Healthwatch Herefordshire supported a focus group in April 2019 organised by the Wye Valley Trust Living With and Beyond Cancer programme and Macmillan Cancer Support. The event brought together people living with or beyond cancer, as well as family members and carers, to discuss what good cancer support should look like and to help shape local cancer services over the following two years. 

Participants identified several key themes that they felt were important to improving cancer support, including information and communication, emotional and practical support, mental health, transport, GP services, diagnostics, support for carers and families, and access to allied health professionals. 

The issues receiving the highest priority votes included support for managing the fear of cancer recurrence, support for continuing to work during and after treatment, psychological and peer support for patients and carers, and help with managing the long-term side effects of treatment. Participants also highlighted the importance of having a named key contact, such as a Clinical Nurse Specialist, access to comprehensive patient records, better transport support and improved GP knowledge of available cancer services. 

Attendees emphasised that cancer's impact extends well beyond active treatment. They described the ongoing emotional and practical challenges faced by patients and families, including anxiety about recurrence, body image concerns, relationship difficulties, grief, bereavement, financial pressures and the lasting effects of treatment. Participants felt that support services often ended too soon and that longer-term support was needed for both patients and family members. 

Carers and relatives were seen as requiring greater support in their own right. Participants noted that carers often experience stress, emotional strain and practical difficulties, particularly around transport and balancing employment with caring responsibilities. They highlighted the need for dedicated support groups and ongoing assistance for carers and bereaved family members. 

Improved information and communication were identified as key priorities. Participants wanted clear, trusted information before, during and after treatment, better communication between healthcare services, repeated opportunities to receive and discuss important information, and clearer signposting to available support services. Some also supported the idea of a single patient record that could be accessed across services.

Mental health and emotional wellbeing featured strongly in the discussions. Participants highlighted the need for counselling, peer support, communication skills training, mindfulness opportunities, and services that help people cope with fears, uncertainty and the emotional consequences of cancer. The fear of recurrence was identified as a particularly significant issue for survivors. 

Transport was recognised as a major barrier for some people, particularly those living in rural areas. Patients described problems with the cost of travel, parking charges, lengthy journeys for treatment and the limitations of community transport. Participants suggested that expanded and better coordinated voluntary transport services would help reduce isolation and improve access to treatment and support. 

Participants also highlighted opportunities to improve GP services and diagnostics. Suggestions included improving access to the same GP, ensuring practices have staff with specialist knowledge of cancer pathways and support services, increasing awareness of available services, improving access to screening and early diagnosis, and expanding mobile screening services for rural communities. 

The report included a detailed personal account from a breast cancer survivor which illustrated many of the themes raised during the focus group. While praising the speed, professionalism and support received during diagnosis and treatment, the individual explained that the greatest challenges often came after treatment ended, when long-term physical side effects, emotional impacts and fears about recurrence became more prominent. The account highlighted the value of peer support, counselling, specialist services and practical advice in helping people adapt to life after cancer.

Overall, the report concluded that cancer support should extend beyond treatment and address the long-term physical, emotional, practical and social consequences of cancer. Participants called for more coordinated, person-centred services that support both patients and their families throughout their cancer journey and beyond. The findings were intended to inform the development of the local Living With and Beyond Cancer programme.