In 2016 Macmillan Cancer Support brought 12 people affected by cancer together with the ambition of improving cancer care and support across the region. The Macmillan Patient Advisory Board, all with lived experience of being cancer patients or carers, met as part of the Macmillan Living With and Beyond Cancer Programme, a five year programme of work to improve cancer services, which has published the findings of its final evaluation report.
The Macmillan programme has invested over £5 million in improving personalised cancer care and support over the past five years. These developments have been far reaching and will support regional cancer services in meeting the challenges brought about by the pandemic. The improvements include the recruitment of 43 Macmillan Cancer Support Worker roles, better IT coordination, establishing patient support groups and providing the cancer workforce with learning and development opportunities.
Claire Molyneux from Sheffield, is living with incurable breast cancer, she has been part of the Macmillan Patient Advisory Board for four years, she said:
“My diagnosis of secondary breast cancer meant I had to give up work and I lost some of my confidence.
“Being a member of the Macmillan Patient Advisory Board has given me some of that confidence back, the opportunity to use my skills and make my voice heard.”
The Macmillan Patient Advisory Board have been instrumental in approving funding and development decisions in regional cancer services, including the six Macmillan Cancer Support Workers working across Sheffield in the hospital and community, the roles support the emotional, financial and psychological impacts of a cancer diagnosis, as well as helping patients and their loved ones navigate the health and social care system.
Rob Moffatt, from Sheffield, joined the group bringing with him experience of caring for his late wife Kelly Moffatt, he said:
“I joined this group because I wanted to make a difference for Kelly, we didn’t have a good experience of cancer care and support as a family and I wanted to make a difference in her memory.
“The people on the Patient Advisory Board have continued to inspire me, our voices have been heard and that’s made a difference.”
As the Macmillan programme concludes, the group of patients and carers have met for the last time and in a heartfelt video message Macmillan’s Chief Executive Lynda Thomas told the group:
“Five years ago Macmillan wanted to set the gold standard for involving people living with cancer, to understand what was really needed, and we have been able to realise this ambition because of the Patient Advisory Board.
“You held every funding and development decision to account; your contribution has made a difference in shaping local cancer services for the better.
“You are a group of motivated, talented, challenging and passionate individuals and on behalf of Macmillan we can’t thank you enough.”
Macmillan’s final evaluation report found that patient involvement was embedded throughout all the programme structures, with partners describing the patient and carer involvement as “exemplar” across the UK. Ian Margerison is the Macmillan Engagement Lead and helped to establish the group in 2016, he said:
“When we started to talk about establishing this group of patients and carers we had no expectations of what the group would do or who would be on it.
“Macmillan have been incredibly lucky to have such a dedicated and talented group of people advise us, the group challenged us every step of the way and were a vital component in helping us to improve personalised cancer care and support across the region.”
A new film from Macmillan explores the impact of the charity’s investment in setting the gold standard for cancer care and support, hearing from NHS and community sector partners, people affected by cancer and healthcare professionals.