Call for Norfolk groups to work together to give louder voice for cancer patients
PUBLISHED: 06:30 25 September 2013
Archant Â© 2013
"We will not settle for the status quo". That was the message from cancer patients, carers and support group officials yesterday at a cancer conference in Norwich.
Forty delegates from a host of charities and support groups gathered for the first Norfolk Voices for Cancer event, which is aimed to give patients a stronger voice by joining forces.
The summit at the Assembly House was organised following the disbandment of the Anglia Cancer Network earlier this year as a result of a major reform of the NHS.
Officials from the Norfolk Campaign Committee for Photodynamic Therapy (PDT), who joined forces with the Big C charity, to organise the conference, said survival rates had improved in recent years with more treatments available for patients in the region.
However, more could be done to make sure that patients, carers and family members get the right sort of information and get the best possible treatment following diagnosis.
Former Norwich North MP Ian Gibson, who is a member of the Norfolk PDT group, said there was a postcode lottery for cancer treatment when he became an MP in the late 1990s and it still went on in 2013.
“Cancer treatment has improved quite a lot, but like anything in the health service, we could do better and learn more. Patients know best and they are the most powerful political group in the country. They have the knowledge and the experience that other people in the health service do not understand. When you get everyone together, you are dynamite and if you hunt in packs, ministers start having sleepless nights,” he said.
Organisers hope to take the Norfolk Voices for Cancer programme across the county in the future and they hope to make cancer treatment a less scary process for patients and make sure they are given the knowledge needed to fight the disease.
Representatives from a host of organisations, including the Norwich Breast Cancer Support Group, Lymphoma Association, Coping with Breast Cancer, and Norfolk and Waveney Prostate Cancer Support Group attended yesterday’s summit.
Jean Mossman, former chief executive of Cancerbackup, which is now merged with Macmillan, and parliamentary advisor to the House of Commons Cancer Committee, said clinicians were sometimes reluctant to talk over new treatments with patients and discuss all the options. “It is important that we do not settle for the status quo and we need to think about how healthcare can be better and how we can make it happen. We need to find ways to take what matters to cancer patients and take that to policy makers.”
“All cancer patients want to know the same. They want an accurate diagnosis as quickly as possible and they want access to effective treatment and good support and information. We need to work together to press for better services. Cancer treatment is better, but there is still a lot that needs to be done so that everyone gets the best possible treatment.”
Nikki Morris, head of clinical services from the Big C, added: “We need to have integration. We need to work together but not lose identity. We have set up separate groups for a real reason. We need to work together, but we do not need to fully merge I think.”
However, David Cooke, from the Norfolk Lymphoma Association, said it was difficult for cancer support groups to work together because they were competing against each other for public donations and support for their fundraising activities. He added that it was difficult to maintain support and membership for his group. “It is very difficult at the coal face and I have spent every day of the last 13 years talking about Lymphoma, but people do not want to hear about Lymphoma all the time. Once people have been treated or cured, they do not want to know about it,” he said.
June Kay, from the Norfolk and Norwich Lung Cancer and Mesothelioma Support Group, added that there was so much change within the NHS every time there was a change of government and it was frustrating for groups to campaign for improvements in cancer care.
“For patient representatives, it is very difficult to keep up. Every effort you put in is defunct in four years and it all goes out of the window,” she said.
Daphne Sutton, chairman of PDT Norfolk, thanked Natwest for sponsoring the cancer summit.
“It is about patients being a part of the decision making process and taking back control over their lives. We hope to help people gain more knowledge about treatment options,” she said.