We’re back from sunny Belfast and pleased as punch to have won a first prize at the NCIN conference, in the survivorship category, for our poster presentation on the social care needs of people living with cancer.
It comes after almost two years of hard work with expert agency mruk to design and conduct a programme of qualitative and quantitative research which – for the first time – assesses the practical, personal and emotional support needs of people with cancer in the UK, and how well these needs are met.
Until now very little official data has been available on the full extent of these needs and how well they’re being met. Anecdotal evidence and feedback from professionals on the ground has long pointed to these needs being common for people at all points in the cancer journey, and our research confirms just how widespread they are.
Around two in three people with cancer have practical or personal care needs, and four in five have emotional needs. Overall, almost one in three people with cancer have practical or personal needs but do not receive enough, or any, support. And almost half of people have emotional needs but do not receive adequate support. Often these needs are linked. A lack of support in one area can have a profound impact on other aspects of people’s lives. We suspected that family and friends would be the most common source of support. Our research has shown that they are often the only source of support. This can be true even amongst those with severe needs who need help several times a day. And to make things worse, family and friends often receive no support themselves to help them in their caring role.
The consequences of a lack of support can be devastating, at a time when people need help most. Overall, one in five people with cancer experience a negative impact on their lives. This results from of a lack of support for their practical or personal needs. These can range from being housebound, unable to wash and dress, to experiencing unnecessary hospital admissions.
We’re pleased to see our research being recognised by the research community and hope this leads to a greater focus on these issues. However, the real test is ensuring more people with cancer receive the right support when they need it.
The impact of the Care Act and new criteria for eligibility for support remain to be seen. However, with further cuts faced by Local Authorities the road ahead is definitely not an easy one. This is why as well as using the research to support our wider campaign work, we’re using it to inform new strategic partnerships with Local Authorities. Macmillan recognises the significant role of Local Authorities in supporting people with disabilities and long term conditions in their communities. They can make a real difference to the quality of life of people living with cancer too. In partnership with Local Authorities we will invest to develop co-produced solutions and in building community capacity for local people. There is long term commitment from Macmillan. We recognise that solutions need to be personalised, sustainable, replicable for other long term conditions. They also need to put the individual at the centre of their care and support.
So watch this space. And if you’re interested in finding out more in the meantime, a short report we published earlier this year based on the research is available here, which received a range of media coverage, including the Guardian, Daily Telegraph and Daily Mail