UCLPartners join forces with Macmillan to improve personalised holistic support for cancer patients
When someone is newly diagnosed with cancer, on top of ill-health, the need to attend medical appointments to receive treatment can cause disruptions to their work, family and finances. For some, these disruptions can lead to them missing appointments and even dropping out of treatment altogether.
It’s often not clear to those diagnosed with cancer and the people important to them where they should turn for help. In 2020/21, there were 16,861 new cases of cancer reported across our region, with 48% of those diagnosed waiting more than two months for their first treatment. This wait is just one component surrounding a cancer diagnosis that could impact on the wider needs of those affected.
Over the next four years, we will be working with Macmillan, in collaboration with partners in the NHS and community in North Central London, North East London and Mid and South Essex to identify, implement and generate an evidence base around best practice in holistic support in England.
This work will assess both direct support, referrals and sign-posting to local services to meet a range of needs, be those financial, emotional, or practical. Previous work to deliver holistic support services has shown that they have a positive effect on health, both directly and because the economic and social benefits help patients to stay in treatment.
The work will build on the successful implementation of the Macmillan ‘Improving Cancer Journey’ service in other parts of the UK and assess what can be adapted in our region to implement similar holistic support services.
Here’s what Nicola said about her experience of having a holistic needs assessment:
“Stacey died from bladder cancer in 2022 aged 36 and leaving behind two children aged 18 and 7. She was my best friend and sister to Jason, my partner.
“A couple of weeks before Stacey died, she went into a hospice – at that point, I didn’t know what help I was looking for. I just knew that I was about to lose my best friend, and Jason was about to lose his sister. Jason had already lost his dad 6 months before, to cancer. I contacted Macmillan’s Improving Cancer Journey (ICJ) service because I knew I needed support, and I wasn’t capable of dealing with all of this stuff in my life. I was about to embark on something massive that I couldn’t control.
“I couldn’t tell you what I needed then, or what I needed to know but I was relieved to talk to Karen, a Macmillan ICJ Link Worker. She went through the Holistic Needs Assessment questionnaire with me, it was all so foggy – I know that financial and emotional support came up as areas that I was worried about.
“Everything happened very fast because there was no space between Stacey dying and us taking on kinship care of her youngest child, Caleb. Karen helped us navigate so much – from Stacey’s death to me losing my job, all in the same week and us having a new addition to the family.
“At first, Jason was angry with me for arranging the support, because he thought I had arranged counselling behind his back. Now he is the biggest advocate of Karen and the ICJ service.
“Karen got us through our darkest, darkest days. We couldn’t have done it without her. We can’t believe how supported we were. The ICJ service went above and beyond to help us. It really saved our lives.”
Find out more about our work in cancer care and early cancer detection