Lived Experience of Cancer and Co-production

We had the pleasure of interviewing members of our Cancer Co-production Group about what co-production means to them and what they gain from attending the Cancer Co-production Group.

“My name is M and the reason for me joining the group was that in September 2018 I was diagnosed with breast cancer, I went  through the usual treatments of surgery, chemo, radiotherapy, and 6 months of injections and at that point I saw an advert for volunteers to join the co-production group.  The timing was excellent as I was just taking 1 tablet for 7 yrs. I wished to see if I could give anything back and re-join the outside world.”

I wished to see if I could give anything back and re-join the outside world”

What was it about co-production that interested you? 

“I hoped to be in a position where I may be able to influence the care of future cancer patients. I am not medically trained but I had a voice of experience and hopefully an understanding of other peoples situations.”

What are one of the things that the co-production group has achieved?

“It has acknowledged that when patients in my position finish the main hospital treatments then you are left with very little support and many patients feel uncomfortable and not certain how to pick their lives up. The fear of cancer returning is real For example I have had to undergo 6 biopsies (all negative)  I am the lucky one.

As result the group have spent considerable time moving forward in this area e.g Cancer Care reviews.”

The enthusiasm of the group working together on what ever project, to try and make a difference for those that follow”

For you, what has been the most rewarding part of being part of the Cancer Co-production Group?

“The enthusiasm of the group working together on what ever project, to try and make a difference for those that follow.”

What do you believe is the biggest difference the group has made?

“An improved Cancer Care Review which hopefully is going to mean that all Lincolnshire GP Practices are singing from the same hymn sheet and that each patient will have their personal circumstances considered with empathy and in a meaningful way. I have been very fortunate in that I am able to still lead a physically full and enjoyable life. Others are not so fortunate, job loss possibly resulting in debt, living with an obvious physical problem, lonely, had young children to care for during treatment, caring for elderly family.

I still from the outside look and feel the same (apart from the additional wrinkles) but many others are not so fortunate.”

What has been the biggest challenge in being part of the co-production group?

“Covid but with our excellent facilitator the group has been able to continue with virtual meetings. It has not been the same but we have still kept going and growing.”

What is the biggest opportunity you see for co-production in the future?

“To expand so that the group acknowledges the diversity in Lincolnshire. Also to bring in patients that have recently been through the treatments and thirdly to bring in a wider range of cancers.”

Clearly making a difference on a wide variety of fronts”

What does good co-production look like to you? 

“The subject may be different for each group but it should include a mixed body of people that have all experienced cancer (in this group) and it has been treated in different settings and they all wish to improve the path for those that follow. Without our excellent facilitator and Macmillan this would not happen.”

What are you most proud of as being part of the group?

“Clearly making a difference on a wide variety of fronts e.g Influencing the of the NICE Guidelines on Cancer Care Reviews, Working with the University of Lincoln on the Shared Lives Cancer project, Being party to recruitment to the living with Cancer program, We supported with the development of pre-habilitation workshop for people about to undergo Cancer Treatment.”

How does it make you feel being part of the group?

“That the group is respected and that I have a voice that I can use in frank, lively, discussions before any decisions are taken.

I would like to think that my time is valued and that I am improving the situation for many cancer patients.”

“A friendly proactive group”

What qualities does a person need to be part of co-production?

“To have had cancer, a sense of humor, an ability to voice their true thoughts, able to work in a team setting and to respect other members thoughts.”

If you could say one thing to something thinking of joining the network, what would you say? 

“It is a friendly proactive group.”