June 9th, 2017 saw a very well-attended Macmillan-sponsored conference in Milton Keynes, on the theme of “Living With And Beyond Cancer.”
The packed venue heard presentations from a variety of professionals from MK Cancer Services and related organisations, and was supported by a number of local cancer-related charities including Bosom Pals, the MK Prostate Cancer Support Group, Look Good, Feel Better, the MKCPP and others.
Macmillan representatives used this occasion to introduce their new “Talk To Us About Your Cancer Journey” board, which allows people affected by cancer at these events to share their positive service and support experience, identify gaps and unmet needs as well as allowing people to make suggestions to NHS Cancer Services and Macmillan in their region.
Listening to patients is key
“Macmillan Cancer Support wants to ensure that people affected by cancer have opportunities to use their cancer experience to make a difference and enable them to have their say in informing and influencing health and care services,” said a Macmillan staffer at the MK event. “It also helps us to ensure the work of Macmillan keeps going in the right direction.”
The idea of the “talk to us” board is to encourage those attending events like this, to add their comments and ideas, written on sticky notes they can place anonymously and in their own time on the Cancer Journey Board.
Can include both good and bad experiences, suggestions and unmet needs
The cancer journey on these boards is split into four stages:
- Prevention and diagnosis
- Treatment and recovery
- Living with and beyond
- End of life
At the Milton Keynes event Macmillan recorded a number of comments and suggestions across the stages, including:
Prevention and early diagnosis:
‘Had a persistent cough which disappeared after tumour surgery. Who would think that a cough and bowel cancer are related?’
‘I feel that my cancer is different, found via lymphedema i.e. breast cancer (I’m in a 6% group). I don’t know anyone else like me.’
Treatment and recovery:
‘More groups to help you cope – feeling left alone after treatment is over.’
‘I don’t know anyone else like me so feel a bit alone and isolated.’
Living with and beyond:
‘I think fatigue and psychological impact of cancer is underestimated, need more follow up clinics.’
‘My Zumba group organised a coffee morning to meet up with me.’
‘Support from my local WI group with others that had cancer. They gave me advice and encouragement.’
‘More cancer related support needed after having private treatment. Should this exclude me?’
‘Importance of positivity and tools and methods to manage.’
All these experiences and comments will be taken forward and used to inform and influence services and support, and will help both MK NHS Cancer Services and Macmillan to better understand the needs of people living with cancer in our region and beyond.