Living with and beyond cancer focus group 2

Healthwatch Herefordshire worked with Wye Valley Trust and Macmillan Cancer Support to host a focus group in December 2018 for people living with or beyond cancer, as well as family members and carers. The purpose of the event was to gather views on what good cancer support should look like and to inform the development of the local Living With and Beyond Cancer programme over the following two years. 

Participants identified a wide range of issues affecting people after a cancer diagnosis, grouping their feedback into themes including information, communication, support services, psychological and emotional wellbeing, transport, specialist services, healthcare systems, and support for carers and families. 

The highest priority identified by attendees was the creation of an aftercare support centre that would provide access to support groups, counselling, nutrition advice and diagnostic services for people with a history of cancer. Participants also prioritised better integration between services after discharge, access to a named contact person or GP for ongoing advice and support, improved support for families, and greater use of telemedicine. 

Many participants felt that information and signposting were inconsistent. Some reported being unaware of available support services until they discovered them independently. There were calls for clearer information about support options, practical advice on finances and home issues, better guidance on navigating online health information, and improved signposting to services throughout the cancer pathway. Participants also suggested that information should be available in a variety of formats and delivered at appropriate times, as diagnosis can be overwhelming.

Communication was another important theme. Participants wanted clearer explanations of results and treatment options, reduced use of medical jargon, better understanding of how services connect together, and regular opportunities to provide feedback. Some also highlighted the need for improved communication with carers and family members through care planning processes.

The report highlighted strong demand for greater practical and emotional support after treatment. Participants wanted ongoing access to support groups, exercise programmes, nutritional advice, counselling services, mindfulness activities and peer support. Many felt that support dropped off too quickly after treatment ended and that patients continued to need help managing the long-term consequences of cancer and its treatment. 

Emotional wellbeing was a major concern. Participants discussed anxiety, fear of recurrence, uncertainty about the future, body image issues, relationship difficulties and the psychological impact of both cancer and treatment. They called for greater access to specialist counselling, psychological services and holistic assessments that would help people identify and access the support they needed. Isolation was also recognised as a significant issue, particularly for people living alone or with limited family support. 

Transport was identified as a significant barrier for many patients, especially those living in rural areas or required to travel out of county for treatment. Participants reported difficulties accessing transport support, long waits for return transport after appointments and uncertainty about what financial assistance was available. 

Participants raised concerns about the organisation of healthcare services and suggested several improvements. These included better training for district nurses, improved discharge planning across county boundaries, greater sharing of medical records between services, cancer nurses within GP practices, better education for GPs about cancer services, improved access to cancer specialists without unnecessary GP appointments, and wider use of telemedicine for follow-up care. 

The needs of carers and family members were another key theme. Participants highlighted the importance of providing training, information and emotional support for unpaid carers, as well as involving carers more fully in care planning. Many stressed that cancer affects the whole family and that aftercare services should support partners, children, parents and close friends, not just the patient. 

The focus group also highlighted broader issues such as the need for employers to better understand the impact of cancer, support for flexible working arrangements, and practical advice on finances and returning to work after treatment. Participants noted that lengthy hospital visits and delays could have a significant impact on family life and wellbeing. 

Overall, the report concluded that cancer support should extend beyond medical treatment and address the practical, emotional, social and psychological consequences of cancer. Participants called for more coordinated, holistic and long-term support that would help patients and families navigate life during and after cancer treatment.